tag:blogger.com,1999:blog-27273851942022561432024-03-05T07:33:30.316-06:00Sliding Through the Mind of Me...A blog by an Esophageal then Thyroid then Kidney cancer survivor that got the itch to share his journeys with you...Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-2727385194202256143.post-38655867017837072022019-02-28T20:25:00.003-06:002021-03-10T19:58:05.197-06:00They also serve who stand and wait... Or, in this case, watch.<br />
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Beware! This post is a little longer than some... But I feel the need to write down my feelings on it and the people that join us on our journey.</div>
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Is it really that hard to watch family member or friend with cancer? You better believe it is! It's a very hard, stressful, emotional time for everyone involved. Not to mention being scary as hell. These times have been the scariest times of my life. </div>
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What makes it so hard from the standpoint of family and friends? Think about it… When a person has cancer, everyone has the patient first and foremost on their minds. While we watch, most of us try to do anything we can to help make things easier for the patient. Just being there, listening to them, giving a million hugs and kisses, doing and getting things to help whoever it might be.</div>
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I have taken to calling the friends and family and caregivers that go along with us on our journey "Watchers." Why watchers? Because that's about all we can do from that side of the diagnosis. Watch...</div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><br /></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">When a
cancer diagnosis happens to a loved one or a friend, all you can do is be there
for that person and help them in any way you can. All you can do is give of yourself and your time. Most of the rest of it is and doing what I have started calling
the four W’s... Watching, waiting, worrying and wondering.</span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">When
you see and talk to others who might not be there as often as you are, what is
the first thing you hear?<o:p></o:p></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">“How is
so-and-so doing?”<o:p></o:p></span></div>
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are concerned about the patient which is totally normal. One of the questions I
have is, how often do the watchers get asked, </span>“How are YOU doing?”</div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><br /></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Don’t get me
wrong, I know it happens, but not nearly often enough in my opinion. Yes,
you almost always hear, “If you need anything, just let us know,” but rarely are the
watchers asked how they truly are and what they might need. Those who watch are
cancer warriors too, just in a slightly different division. They give of themselves in
SO many ways; they take time off work and out of their lives, they use their
own money and resources to get things the patient may want or need, they
sometimes ignore their own medical issues or skip taking their medications
or going for medical exams or treatments… They do about anything they can just to try to
make sure they are there and available in case the cancer patient needs
anything.<o:p></o:p></span></div>
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patients themselves are busy being… well… the patient.<span style="mso-spacerun: yes;"> </span>Doing their best fighting the hardest fight of their life, trying to get better. The
medical staff gets to do things that can actually be <i style="mso-bidi-font-style: normal;">seen</i>.
They are coming up with ideas and doing things for the patient. I know that may
seem small to some but think about it from the perspective of a watcher. As
watchers we have to hope what we’re doing is enough. Much of what we do doesn’t
always have an immediate outcome that we can see or feel or realize. Yes, a
“thank you” or a kiss and hug for something done is a response we can be seen and felt, and those are some of the best feelings
you can have, but then it’s right back into the fight with the cancer beast and
it seems quickly forgotten a lot of the time. Seems being the operative word.<o:p></o:p></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">As a
person who has watched a lot, I have asked this question of myself so many
times, “Is what I am doing even making a difference?”<span style="mso-spacerun: yes;"> </span>Speaking from the position of a person with
cancer, I can tell you that you are absolutely <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">INDISPENSIBLE</i></b>. What
watchers do and what they bring to the situation are absolutely imperative.
There is no way I can make a big enough deal out of this. The patient will
cling to you and your love and your strength. With cancer, you can imagine
yourself as being lost in a raging ocean. You’re trying to live and
survive in the ocean by swimming or treading water or whatever else you can do
to keep from going under. You are looking for absolutely anything to help keep
yourself “afloat.” I can guarantee you the support and love and caring of a
watcher, even your just physically being there, is like throwing them a life
vest. When we feel like we can’t go on or might be giving in to depression or
other deep, dark emotions, we will use YOUR power and strength and love to help
keep our head above water. This is a 100% true fact. I’ve lived it.<o:p></o:p></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Sometimes
(in my case, most times) these strong and loving people don’t get told what
they were doing and what they were sacrificing makes a difference. At least not
up front… while it’s happening. A lot of the time the watchers will catch the
brunt of the emotions and fear from the patient and it comes out in the form of
being snapped at or yelled at or accused of things. The patient can seem mean
or hurtful or even hateful. That’s not fair to the watchers, but it happens
often. A watcher needs a very thick skin, a harder head than the patient, and they have to be partially deaf... You have to
be willing to take all that lashing out and emotion and just let it all go in
one ear and out the other. You’re the lightning rod sending the bolts
harmlessly to the ground when they strike. Sometimes it is hard… beyond hard.
It can end up hurting so much that at some point you have to take a step back
and regroup. It takes a lot of work and energy to watch. It’s tiring on so many
levels. It is mentally and emotionally draining to the point of sometimes
seeing the watcher go home and break down. Personally, I HAD to have those
breakdowns at home… away from the patient. Breaking down in front of them was
completely taboo for me. I felt it gave the wrong impression. I want to put up
a strong, positive front. Something the patient can cling to, so breaking down
in front of them was not something I would ever consider doing. Again, this is
just how I handled it. Your thinking may be totally different. There is no set
of rules and regulations on this. It is all learn as you go. On the other hand,
if there was good news, breaking down in front of the patient was more than
allowed. You’re showing the relief of the good news and sharing the moment with
them. <o:p></o:p></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">One
thing I have discovered over the years is watchers are VERY strong.<span style="mso-spacerun: yes;"> </span>A lot stronger than they might give
themselves credit for.<span style="mso-spacerun: yes;"> </span>99% of you keep
coming keep coming back day after day, with the only saving thought being the
hope you might be helping in some small way. Believe me when I say you <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">are</i></b>
helping… More than that... You’re a <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">necessity</i></b>. It may not might feel
like it at the time, but you are most definitely wanted and needed. More than
you will ever know. Always. I’m sure somewhere down the line you will likely be
told as much, but it never hurts to hear it from other sources too. It gooses
you a little and gives you a bit more energy to go back for the next round.<o:p></o:p></span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Every
person handles things in their own way, and those ways are custom-made for each
person so it is most comfortable for them. That’s part of being human. The
problem is cancer is <u>not</u> comfortable. Mentally, emotionally or
physically. When you watch and support the patient in any way you can is when
the four W’s I talked about earlier show up… Watching, waiting, wondering and
worrying.<span style="mso-spacerun: yes;"> </span>Most of the W’s are mental and
emotional stress and can drain a person of energy very quickly.<span style="mso-spacerun: yes;"> </span>Those kinds of stress can tire you out just
as much, if not more than, physical stress. Many times, it takes longer to get
mental and emotional strength back than it does to get physical strength and
vitality back. Plus, if you let mental and emotional stress get too intense or
last for too long, it can and will affect you physically. I have tried to come
up with a comparison or an analogy for what it feels like from the mental and
emotional standpoint. I can’t find one. I don’t think there is one. Everything
I come up with doesn’t sound right or ends up being physical. I was going to
liken it to sitting on a cactus… naked. Talk about some major pain, and in some
of our most tender spots… but how can you mentally or emotionally sit on a
cactus? So, you see my dilemma. It causes a lot of uncomfortableness (is that
even a word? If not, I’m still using it. Get used to it!). We all handle the
uncomfortableness in different ways. Looking back now and seeing things with my added age and experience, and the
knowledge gained from both of those, I think the way I handled it from the
watcher side was maybe 50-50, good to bad. I can look back now and say that. I
ran and hid and refused to look thinking if I don’t see it or hear it, then
it’s not real.<span style="mso-spacerun: yes;"> </span>In some cases, things
went incredibly south. I can feel bad about it all I want, but I can’t go back
and change those things now. Hindsight is 20/20. There are no mulligans. That
is who I was and how I handled it at the time, plus I have tried to correct the
situations as best I could after the fact.</span></div>
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The bottom line is this... Those of us that watch are Cancer Warriors too. Always. We become Watcher Warriors. We are an integral part of the recovery process and we are <i><u>absolutely</u></i> needed. We might not know or see what we are doing is helpful at the time, but I guarantee you it is... and always will be. I stand and applaud anyone who takes the journey with those of us with cancer. I can never say enough about you and what you do.</div>
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To those that went through my journeys with me... I will NEVER be able to truly repay you or make you understand what you meant to me then, and what you continue to mean to me today. <i>I love you all...</i> Starting with my wife Lea Ann, my family (including my friends) and everyone else who helped me. I will never ever forget... I hope that my fellow cancer patients will have the same feelings. Honestly, I am sure you all do... and I hope that the watcher warriors know it now too.</div>
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Thanks for reading along, my friends!</div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com10Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-55468270746273961252019-02-13T12:05:00.004-06:002021-03-10T19:58:29.200-06:00Five Years Ago - The Start of a Blog...Hello everyone!<br />
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Thank you once again for reading this blog. With any luck at all, it has helped you our in some way when it comes to the journey with the beast... I can always hope.<br />
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The reason for this post is another anniversary. Five years ago this week I decided to start the blog. It was a year post operation for me and in that year my view had changed and evolved quite a lot from what it was when I was going through it all. It was originally going to be just a personal journal... My thoughts and feelings and trying to work through all the changes and issues that come with cancer. The "new normal" as I am sure a lot of you may have heard over your journey. That's a very correct definition too. It is a new normal. The old ways don't work as well any more, if they work at all. So you have to learn new tricks and behaviors. Not impossible by any stretch, but also not as easy as it may sound, at least in some cases.<br />
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As the journal went on, I shared it with a few people and they commented on the writing style and the fact that my journey might be able to help some people, both patients and their "watchers," better understand the journey. They said it felt like we were sitting at a table, having a drink and just chatting as friends do. That's when I decided to go public and turn the journal into a blog for anyone to see and read. Would anyone understand it? Maybe, especially if they are on the journey. Would anyone care to read it? Again, maybe. Depends on where they are in their journey and if they are open to other's ideas about it. Plus, who knew it was even there unless it is by a post on Facebook or word of mouth. Would it be able to help anyone if they did read it? Who knows. I still hope so.<br />
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Why do I have that hope? Mainly because of what happened on my journey. If you read the blog, you see that after my surgery I was a snapping turtle with my mouth tightly closed. No way was I going to talk about it or open up about the entire issue. No way at all. It had been cut out of me. It was gone. No need to talk about it any more. Move along. What I have found by talking with others is that type of thinking seems to be pretty common. If I don't talk about it or look at it or think about it, it didn't happen. The denial phase of the grief cycle. I talk about that whole thing in an earlier post too, so I won't rehash it here. The internal struggle I had about the whole communication thing stemmed from my parents, but not in a bad way. Let me explain. My parents were married at the end of the Baby Boomer time frame, the early 1960's. They had certain ideas about marriage and ideals from the public and in the eyes of family and friends and the church, etc., about what it means to be married. Part of that is communication. They actually went to weekends and seminars about couples communication and keeping those lines open. They didn't have any marital issues that I knew of, but they always wanted to make sure they had open communication lines to each other. I saw that and how it worked. Then, when dad and mom were diagnosed with cancer, I saw them start support groups for that too. This was before the Internet, so they had meetings at our house or other member's houses every week. I was not included in them. Not because they shut me out, but because I was in my late teens and early 20's. Thats the general age where a human seems to think no one understands them or their problems. Especially their parents. At that age we just decide that WE know best. I was VERY much like that. Looking back now, I can see what I was able to get out of those meetings, even though I didn't go to them. Communication lines are like the pressure relief valve on a steam cooker. Keep the valve closed and after a while a seal will fail and the lid will pop off or the cooker could even explode. Without that valve, that release, we could blow up too. Talking and getting those feelings out is a release. You are not handling them alone anymore. You have others that know and can help and understand. You can get ideas for coping with issues, feelings, physical stuff... everything. Opening the valve can be tricky. You can get burned, it can be loud, there are usually tears, but after that initial shock at the start of opening it, the pressure lessens. It really does help. So even though I wasn't involved in the meetings and groups, I saw what they did. What the meetings and the people in them meant to others and the kinship and friendships that were created because of them. I had hoped, and still do, that the blog would be an electronic version of that type of idea. All thanks to my forward thinking parents and their want and desire to communicate. Thank you Mom and Dad. Just another reason I love and miss you both.<br />
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So, on this fifth anniversary of the starting of this blog, and over 42,000 page hits later, I can say that maybe, just maybe, I was able to help a person here or there. No matter how little of a help it may have been. The whole idea behind this was to show people that they don't have to go through this alone. The thoughts and feelings they are having, both as a patient and as a family member or friend, have happened to others. Maybe what I felt and how I handled those feelings would or will help someone in a similar situation. That was the entire idea. The underlying meaning of this whole thing is, "You are not alone," or, "You don't have to be alone." Some choose to be for their own reasons, and I respect that. Everyone copes in their own way. This helped me through some of the issues I was having with it, and still have some of to this day. The New Normal is a tough thing to get a handle on sometimes. But it is manageable. At least I think so.<br />
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After all that, you might ask why I quit making blog entries after a while. Mainly because I was into the New Normal at that point. I had a handle on it and it was just regular life again. Sure there are days that are better than others, and others that you wish you could forget, but generally it would have been writing about day-to-day life. I was afraid you would get bored with that, so I just stopped and let the blog stand on its own. It seems to be doing OK. When I remind people online about it, the usage spikes for a few days then back to pretty quiet. Like I said before, I am not in this to reach a million hits or for notoriety or fame... I just want to be able to help. To talk across that virtual table and let you, the readers, feel like someone knows and understands what you are going through. In a very personal and intimate way. No one know what it is like to go through this unless they have actually done it. They can read about it all they want, but until it happens to them, it is just words on a page or on a screen. My largest hope is that someday no one will understand the feelings here. Why would I wish that you ask? Because it would mean the NO ONE has gone through the cancer journey, so they have no way to understand it. I truly believe that time will come. Some day. Maybe not in my lifetime, but maybe in those of my children or grandkids. You know... The ones I got extra time with and got to see and be with because I did go through the journey and was lucky enough to come out the other side. Not once, but three times now. That is not me trying to crow, that is me being proud of myself. That is hard for me too, but that is a whole other area of my brain that I haven't put in to a blog yet... Yikes.<br />
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Lastly, thank you for reading. I hope this makes some sense and that you weren't too bored with it. It's a big deal to me, and I wanted to share the feelings with you all too. Mostly because it was you that I wanted to reach. So thank you once again. I truly do appreciate your time. In the words of one of my favorite characters of all time...<br />
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May you all live long and prosper.Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com6Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-36454495176689206502018-06-26T22:41:00.006-05:002021-03-10T19:59:00.250-06:00My "Fight" Music... Even if it is late...<br />
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Hello
everyone! It has been a while, hasn’t it?
Coming from me, you can take that as a good thing. It means that cancer is in
the back seat and my life is mine and not being ruled over by the beast. :)</div>
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<o:p></o:p></div>
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I wanted to
talk a little bit about music. It is a big part of my life. I’m not that musical
when it comes to playing an instrument, but I can play the hell out of a radio
or a CD player or an MP3 player. Truth be told, at one time, I could have been
called a half-way decent singer. In fact, a cousin and myself were tapped to sing at one
of our family member’s wedding back in the day.<span style="mso-spacerun: yes;">
</span>These days not so much, what with the throat surgery to remove my
thyroid and the esophageal cancer surgery, it has affected my voice some. This
post isn’t about me and the music I can or could do. This is about music that I
listened to when I was sick and recovering from the esophageal cancer. I hear
so many people talking about their fight songs or their “beat cancer” songs.
Songs that spoke to them, and speak to the world for them. Songs about fighting
the beast and songs about winning. Honestly, I am a little surprised I didn’t
come up with one of those on my own, but for whatever reason that didn’t happen.
At least not at the time when I was in recovery and chemo and radiation and
all. It came quite a bit after the fact. Why? Who knows… Maybe I had not really
“heard” the lyrics yet. Maybe I had not thought about a song to fight from.
Maybe, maybe, maybe… But the fact is that I almost always have music around me. For me, it's soothing most times.<o:p></o:p></div>
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What brought
this to the front of my brain was I was watching one of the reality talent
shows on TV… I don’t remember which one. Anyway, one of the contestants had a
song they sang that meant a lot to them during their fight with cancer, which
they happen to beat by the way, and it made me start thinking about it. The
song I have unofficially adopted as my fight song is by one of my favorite
bands of all time. They may not be my all-time favorite band, but they are most
definitely top two or three. The band’s name is Foreigner. I’m sure most of you
have heard of them from the 70’s and 80’s and beyond. They are what I would
consider an arena rock band. Second generation classic rock, worthy of the Rock
and Roll Hall of Fame, with a great sound, and one of the most recognized voices
in rock and roll, Lou Gramm. They had hits like; “Feels Like the First Time”, “Double
Vision”, “Hot Blooded”, “Urgent”, <span style="mso-spacerun: yes;"> </span>“Jukebox
Hero” and “I Want to Know What Love Is”, among many others. <o:p></o:p></div>
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My song is
off the band’s 4<sup>th</sup> album, aptly entitled “4” that they released
while I was still in high school in 1981. I consider it their best release. To me, every
song on that album is excellent. The one song that stuck out in my mind as a
fight song was called “I’m Gonna Win,” but it stuck out for more than the
obvious reason that is in the title. Of course we all want to win the fight
against cancer. That’s a given. But to me, the words spoke to me on a level
that usually does not happen. Usually, I tend to listen to the music and not so
much the words. I read somewhere that is a “common male trait” but how real
that idea is, I have no idea. In this case, the words hit my brain in a way
that I actually remembered them. Agreeably, not all the lyrics fit, but most of
them do. They made a lot of sense to me. Even several years after the fact. I've actually been thinking of reaching out to the band and band members at the time to let them know that their music meant something special to me.</div>
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Here
are the lyrics:</div>
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<span style="background: white; color: #222222;"><b>[Verse
1]</b></span><span style="color: #222222; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Another dark night, in the city</span><br />
<span style="background: white;">And my prospects looking thin</span><br />
<span style="background: white;">The survival, of the fittest</span><br />
<span style="background: white;">Is the law, in the world that I live in</span><br />
<span style="background: white;">I was not born, to be a fighter</span><br />
<span style="background: white;">But now's the time I have to learn</span><br />
<span style="background: white;">To keep my head, above the water</span><br />
<span style="background: white;">Got to play with fire, but not get burned</span><br style="mso-special-character: line-break;" />
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<span style="background: white; color: #222222;"><b>[Pre-Chorus]</b></span><span style="color: #222222; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><br />
</span><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><span style="background-color: white; border: 1pt none; color: black; padding: 0in;">I got
to stand up, I got to face it<br />
Don't want to lose it<br />
I want to taste it while it's hot<br />
Don't want to waste it, I need it so bad</span><span style="color: #222222;"><span style="background-color: white;"><br /></span>
<br />
<span style="background: white;"><b>[Chorus]</b></span><br />
<span style="background: white;">I'm gonna win</span><br />
<span style="background: white;">I'm gonna win</span><br />
<span style="background: white;">You see it's a matter of pride</span><br />
<span style="background: white;">Deep down inside</span><br />
<span style="background: white;">I'm gonna win</span><br />
<span style="background: white;">I'm gonna win</span><br />
<br />
<span style="background: white;"><b>[Verse 2]</b></span><br />
<span style="background: white;">I got no time, to sit and wonder</span><br />
<span style="background: white;">I got myself, to reckon with</span><br />
<span style="background: white;">Yeah and life won't drag me under</span><br />
<span style="background: white;">Even if it takes, all I have to give</span><br />
<span style="background: white;">I'll give it all</span><br />
<br />
<b><span style="background: white;">[Pre-Chorus]</span><br />
<br />
<span style="background: white;">[Chorus] [x3]</span></b>
<br />
<span style="background: white;"><b>[Verse 3]</b></span><br />
<span style="background: white;">Ooh, I'll pay the price</span><br />
<span style="background: white;">Gonna win</span><br />
<span style="background: white;">No more Mr. Nice</span><br />
<span style="background: white;">Gonna win</span><br />
<span style="background: white;">Hey, just watch me roll the dice</span><br />
<span style="background: white;">I'm gonna win, win, win</span><br />
<span style="background: white;">I'm gonna win, win, gonna win</span><br />
<span style="background: white;">I'm gonna win</span><br />
<span style="background: white;">I know I'm gonna win<o:p></o:p></span></span></span></div>
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<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">You
can find the song on the Foreigner 4 album or you can even listen to it on many
of the streaming music sites or find it on YouTube. I encourage you to give it
a listen. See if it makes sense to you. If it doesn’t, that’s OK. It just means
you might have a song elsewhere, or you fight in a different way. No one says
you have to understand or even like this song. It just hit home for me. When I
hear it come on whatever I am listening to, I turn it up and sing along. It
makes me feel like I have on a suit of armor that nothing can penetrate. I don’t
know how else to explain it.<o:p></o:p></span></div>
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<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I’m
sure that some of you reading this have a fight song, or a mantra, or quotes,
or whatever else you can think of that gives you strength when you need it.
That is that this song is to me. Music is an important part of my life. I tie
many memories to the music of the time. And any time I hear certain songs I am
transported back to whatever memory it is tied to and I re-live it. Some would
ask why in the hell I would EVER want to relive fighting cancer. That answer is
very simple. I won.<span style="mso-spacerun: yes;"> </span>BUT… Even if you
have a song that reminds you of a time when someone you loved was fighting the
beast but they ended up losing that fight, in my mind they still won. They
fought as bravely and as hard as they could up until the very end. And, in my
way of thinking, that song should now remind you of them and their strength and
courage. Like the lyrics above say, they gave it all.<o:p></o:p></span></div>
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<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">If
you or a person you love and are going through this with don’t have a song or
some other mantra to fall back on to be able to draw strength from, I suggest
you give it a shot. See what strikes your fancy and run with it. There are no
rules. It doesn’t need to make sense. If it means something to YOU, that is
what matters most. No one else needs to understand it because it’s not their
journey, it’s yours. So be proud of whatever you might pick. Whether it me
music, or poetry, or a particular book, or… fill in the blank. You’ll be
surprised at just how powerful it can be once you make that connection and how
strong it can make you. And how full you will feel.<span style="mso-spacerun: yes;"> </span>I truly believe that, and I hope you do to.<o:p></o:p></span></div>
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<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Stay
well, my friends. Much love to you and yours, and most of all…<o:p></o:p></span></div>
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<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Live
Long and Prosper…<o:p></o:p></span></div>
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-22440352513889290012018-01-25T14:08:00.002-06:002021-03-10T19:59:35.864-06:00My 5th Re-Birthday... A Milestone Reached!<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "times" , "times new roman" , serif;">Hello everyone! It has been a
while since my last posting, but honestly there has not been a lot to report.
At least when it comes to the esophageal cancer. It is true that in October of
2016 I had a thyroidectomy due to thyroid cancer that took my entire thyroid
gland, and in October of 2017 I had cryo-ablation of clear cell renal
carcinoma. Basic meaning, I had cancerous cells on my kidney frozen to kill them. In fact,
the follow-up scans for that cancer were just done this week and I get results
in early February.<o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">Having said that, why am I posting then
if there is little else to report? Because today is a special
day. Five years is generally the milestone you want to be able to achieve
after a diagnosis like this. For a long time that was the mark that told you
that when you reached it you were "cured" of cancer. At this
moment five years ago today (11:45am on January 25th, 2013), I was in
surgery for esophageal cancer. They removed a majority of my esophagus, the
upper portion of my stomach and 31 lymph nodes. About 13 hours in surgery,
incisions on the chest and on the back, 16 days in ICU, 3 more days in a
"regular" hospital room, 6 weeks of post-operative radiation every day
(well Monday through Friday, weekends off), 6 weeks of post-operative weekly chemo therapy,
physical therapy, 3 months of home recuperation... Numerous doctor visits and
follow-ups. The list goes on and on. But here is the bottom line... Five years
ago I was reborn, so to speak. Given a new chance. <b><i>Today is my 5th re-birthday!</i></b>
I would sing at this point, but I enjoy having windows and dogs that can hear
more than I enjoy singing. 😊 Does that mean
I am cured? Maybe. Wait? What? Why just maybe? Basically because no one knows
for sure. Is the esophageal cancer gone from my body right now? Absolutely! Will
it come back? No one knows... So "maybe" is the perfect answer here.
It’s one I am happy to report too! Let me try to explain a little more...<o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">Back in 2013, the survival rate for
the type and stage of cancer I had was, at most, 8% after five years. That was stage 3 with
lymph nodes involved, but nothing more. That is what they call
"regional" cancer, meaning it has spread into lymph nodes or other
nearby tissues in the body, but the affected area was basically still in only
one place and near the tumor. That's also one of the reasons I didn't need
chemo and radiation <i>before </i>surgery. Now, only five years
later, that same type and stage now has around a 23% survival rate. For
people who have caught it earlier (Stage 1 or 2) that shows no spread to any
other areas, the rate goes up to around 43%. They call that
"localized" cancer. And finally, if it is diagnosed as
"distant" it means the cancer has spread to other organs and/or lymph
nodes that are away from the main tumor site (stage 4). That survival rate is
around 5%. Yes, that is a low percentage, but it is very close to the survival
rate I had just five years ago and I'm still here! This is beatable. Trust me.<o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">Now... a few other things to keep in
mind. S<span style="color: #1e1e23;">urvival rates are, plain and simple, just rough
estimates. Period. They are based on the outcomes of many people who
had esophageal cancer before us, but they can’t predict what will happen with
any specific person. Knowing the type and the stage of a person’s cancer is
important in estimating their outlook, but everyone and every diagnosis is
different. A lot other things are important and factor into that too. Things
like the treatment the patient gets, how the cancer responds to that treatment,
how the patient responds to that treatment, not to mention a person’s health in
general. There are SO many variables we could never list them all. When your
take all these things into account, still no one knows for sure.</span><o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="color: #1e1e23;">Now, having said all that, does that
mean I don't believe I am cured? Hell no! At this moment in time I am NED and
cured! For those that don't know what NED is, it stands for "No Evidence
of Disease." A younger gentleman I know, who was diagnosed and operated on
a while back, and his wife recently had their first child. A boy they named Ned
in celebration of his having no evidence of the disease. That was the coolest
reason for a name I had ever heard! That's being positive! I do my best to keep
a positive attitude. After the way I started all this, as you may know from
previous blog entries, I wasn't always so positive. I want and need to stay
positive now! Positivity and humor are huge weapons against this, at least in
my mind. I have no cancer. I have a life, and one that I take a lot less for
granted now. I am "me" again, but an enhanced version... Brian version
2.0. I see more, notice more, enjoy more, listen more, cry more, feel more,
love deeper, hold on to hugs longer, say I love you more often and to more
people. Some would say I have turned soft or something like that. I'm sorry
they feel that way. They have no idea how this feels, this "second
chance." I've gotten a second chance at living and it has opened my eyes
and mind and heart wider than they were before. It is absolutely amazing what
you can see and hear and feel and just experience if you allow yourself
to. The problem is that people are just "too busy" or too into what
is bad around them to see anything positive or to live most of the time. John
Lennon said it the best way I have heard in his song "Beautiful Boy."
The first time I heard it was when I was watching a movie called "Mr.
Holland's Opus." Lennon's line in the song was, </span><span style="background: white; color: #222222;">"Life is what happens to you while you are
busy making other plans."</span><span style="color: #1e1e23;"> There was another good line that
speaks volumes too, this one from "Ferris Bueller's Day Off." That
line says, "Life moves pretty fast. If you don't stop and look around once
in a while, you could miss it." The sad thing is that it took a life-threatening
situation for me to see that. I was like so many other people, too busy and
into my own life to actually live it. One more movie line here, an introverted,
nerdy-type character is talking about just living through the night based on
the weirdness and antics that had happened up to that point in his night. His
friend, who has been experiencing the same night and antics, tells him,
"You're not alive unless you're living." That comes from a movie
called "I Love You, Beth Cooper." As you can see I am a little bit of
a movie guy, but a lot of times I get things out of them, and in these three
cases, the lines struck home very deeply for me. They all say, basically, stop.
Look around. Enjoy all you have. Be ALIVE, don't just live. Take time to enjoy
the sound of children playing on a playground, or watching a bird flying in a
clear blue sky, or just marveling at a night sky with the moon and all the
stars and planets, or the sound of a loved one as they are deeply breathing
while asleep (maybe not full on snoring, but you get the idea </span><span style="color: #1e1e23;">😊</span><span style="color: #1e1e23;">)... or the
beauty of a baby smiling at you as they see things for the first time ever.
Listening to people. I mean REALLY listening. Not just to the words but to the
feelings beneath them. Offering advice when asked, otherwise just offering an
ear and a shoulder to lean or cry on. Hugging longer, kissing more often,
saying I love you more... All these things I have learned in the last five
years.</span><o:p></o:p></span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="color: #1e1e23;">I would love to say that I came to
this realization within my own little skull full of gray matter, but that would
not be true. Well, not completely anyway. It took a few other things too.
First, it took a life-threatening disease. Second, it took my love, my wife, to
talk me off the ledge a few times more than I care to admit. That woman is the
living embodiment of wedding vows... for richer or poorer, in sickness and in
health, until death do us part. She <b><i>literally</i></b> saved my
life and I will love her until the end of ever, then forever after that. And
third, it took our family and friends to help me to see that I was wanted and
needed and important in all their lives. To see that we were all stronger with
me around. It took all these things to get my brain to look at life and living
from this new perspective. I just had to be smart enough to see and accept that
new vision... and I have. There is nothing like it. I kind of liken it to
getting part of your childhood back. You start seeing some things with wonder
again, like we did when we were kids. Not questioning so much as just
experiencing and enjoying and sharing. In my new view, that is the definition
of living.</span><o:p></o:p></span></div>
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<span style="color: #1e1e23;"><span style="font-family: "times" , "times new roman" , serif;">The thing is, this is a never-ending
change for me. In fact, it should be that for anyone. How so? Well, whenever
you discover and experience something new, your view changes a bit. That should
make you take action. Maybe make you re-adjust your thinking and feelings. Part
of living is learning things and acting on that knowledge, but now I realize
that we can get so wrapped up in the actions that we forget to live in the
moment. To feel it, experience it. When we don't do that part, we miss out on a
lot of living. Plus, doing those things might drive our actions in other
directions too. Just "watching" the new situation or whatever it is,
is like watching a mouse in a maze. That's all fine and good and you can get a
lot of information out of doing that, but I'd now rather BE the mouse.
Experience the moment. Get my own perspective on it instead of just standing
back and watching it. Admittedly, this is something I am still working on. I am
really REALLY good at standing back and watching. Feeling and experiencing
things more is taking a risk. With risk comes the possibility of getting hurt
or learning something you really might not have wanted to know, but without
that risk... you'll never know. At least not for sure and definitely not from
your own experiences. Some might use the old adage, "You can't lose
if you don't play." When I hear that, I come back with, "You might
not lose if you don't play, but then again, you will never win either." So
that brings us to the definition of winning. What is it exactly? I'm not going
to even attempt to tell you. Mostly because each of us has our own definition
of how we win or how we lose. The definitions are as individual as
fingerprints. What I might see as winning you might look at like one of those
RCA Victor dogs in the old picture ads with the tilted head and ears up looking
at the old record player seemingly thinking, "What the hell is that?"<o:p></o:p></span></span></div>
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<span style="color: #1e1e23;"><span style="font-family: "times" , "times new roman" , serif;">So as I come to the end of this "longer
than I thought it would be" post, I wonder if I am making sense. After a couple
of re-reads and tweaks, I believe I am. Hopefully you feel the same. What I
hope and wish for you is that you are living as I talked about above. That you can start to
“be the mouse.” Feel and experience and share for yourself. Don’t take someone
else’s word for it, or their definition of the feelings. Only you can feel your
feelings. Don’t let someone else feel them then tell you about them and dictate
how they make you feel. Live more, smile more, feel more, love more, and experience
all you can!<o:p></o:p></span></span></div>
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<span style="color: #1e1e23;"><span style="font-family: "times" , "times new roman" , serif;">As always, live long and prosper, my
friends. Love to you all!</span></span></div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0Streator, IL 61364, USA41.120866799999988 -88.83535241.02517379999999 -88.9967135 41.216559799999985 -88.6739905tag:blogger.com,1999:blog-2727385194202256143.post-16130542464656032372017-02-06T22:33:00.001-06:002021-03-10T19:59:57.701-06:00Tiptoeing Through Some Feelings<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Hello
everyone. I appreciate your taking the time to check back in here to take a look
at the blog once again. Even though my postings have become quite sparse, I
still think of the blog quite often. Just most times there is not really enough
to say to really get a decent post together, so I let it slide and suddenly its
six months or a year later… I apologize for that. However, there is a reason
for it. Allow me to explain. If you have been following along with the blog,
you’ll note that I stopped pretty much after the blood clot incident was taken
care of and physical therapy had re-started. The reason for that stoppage was
simple, at least to me. After that point it was just physical therapy at home
until they deemed it no longer needed and starting back to work. In my mind,
that is getting back to “normal life.” It is true that I was out of work for only
three months (a rather short time from what I have been finding out). It’s also
true that this type of surgery requires at least a year to allow a person to “start
feeling like themselves again.” My post-op gastro doctor mentioned that in
regard to major surgery and it held very true, at least for me. I was concerned
that writing about getting back to normal was, or would be, a little boring for
everyone, so I refrained from putting those things out here on the blog… at
least a large majority of them. Another reason was a bit of survivor’s
guilt. I’ll expand on that a little
further on in this post.</div>
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As a lot of
you may know, I am a member of several support groups for esophageal and
thyroid cancer over on Facebook, as well as following several on Twitter. The
posts on the Facebook groups from me are mainly comments to other posts, or a
simple like to this or that post. The frequency or number of posts kind of ebbs and flows.
Lately my posts have been pretty light as my new job plus three hours commute
round-trip daily drains me quite a bit. That causes me to not get online nearly
as much. As I get more used the new situation and hours, and the training ramp
up evens out, that power drain will lessen I expect. In any event, reading
through those posts from day to day is really a rollercoaster ride. People at
all points of their own personal journey with the beast. People with new
diagnoses, those who are the caretakers and friends of the patients, people in
the midst of chemo and radiation, or just before or after surgery… and those
that are reporting post-op scan findings along with how much time had passed. I’ve
seen up to about 20 years post-op that are still free and clear. Those are the
heartening posts. The ones that take you to the top of that rollercoaster. Then
there are the posts that report a loved one’s last days, their passing, or the
person’s leaving the community because they feel there is no need for them to
be there anymore or it is too painful for them to still be there or whatever.
Those are the low points of that same rollercoaster ride. They are also the
posts that make me worry about posting more about surviving. I worry about
making those that have not been as fortunate feel badly or add to their
feelings of despair. Is it right for me to post about my still being alive
while so many others are fighting and dying of the same beast’s damaging blows?
I fight with that thought a lot, especially when I hit the milestones post-op.
I am not one that wants to hurt people or remind them that their loved ones
have been lost, or may be losing their fight. However (isn’t there always one
of those?), I also feel a need to let people know that this is not a fight that
people will always lose. The beast CAN be beaten. I am proof of that, at least
as pertains to Stage III Esophageal Cancer, and more recently Stage I Papillary
Thyroid Cancer. So I hope you can see the tug-of-war that is constantly going
on in my mind. Is that the definition of Survivor’s Guilt? Am I over-analyzing?
Is it something I really need to worry about? I don’t believe that it means I
am too feeling or too sensitive to other’s feelings. It’s simpler than that. To
me, I would sometimes rather keep quiet and just feel good about reaching
milestones than to remind others that maybe their loved ones were not so lucky.
Thoughts like these sometimes keep me from posting or posting more or longer
entries, whether it be here or on those support groups. I hope that make sense
to you. I also hope that explains why sometimes there are large gaps between my
posts in all of these places.<o:p></o:p></div>
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To help bring this entry to a close, I wanted to make one final point... Well actually it is more like a request. If there is a specific area you would like to
see me expand on further, or a specific time or feeling or procedure you would
like to see more on, please let me know. Whether it be here in the comments or
via a private email or message over on Facebook or Twitter or whatever. I’m
really not too hard to find. I’d be happy to pass on any information or memories or even knowledge that might be of help or of interest to you. One of the
favorite things I heard (and used) when I was a technical trainer back in the day was
this,<br />
<br />
“The only stupid question is the one you don’t ask.”<br />
<br />
Those are very
true words. So ask. Not just me, but anyone. The doctors, the nurses, the hospital staff, the American Cancer Society, support groups, whoever and where ever. If the question is to me and I don’t know the answer, I won't hesitate to say so. I’m not too proud to admit when I don’t know something. What that will do is spur me to go
looking for answers, or at least find a path that the person that asked the
question might be able to follow. I am sure that the person asking will have
already done, or is in the midst of, their own research, but any way I can help is
what I strive for. In fact, that is the whole idea behind this blog. Does that mean there will be answers coming to every question pointed at me?
Likely not. No one has all the answers, but I will do my best to find at least something... Bottom line is it's the thought, or in this case
the effort, that counts. Another good saying, and another I believe
in.<o:p></o:p></div>
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on, everyone. We will meet here again, I am sure. Lastly, I truly mean it when I say…<o:p></o:p></div>
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Live long
and prosper.<o:p></o:p></div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-7009349635891701662017-01-25T19:54:00.003-06:002021-03-10T20:00:18.428-06:00Four Years and Counting...<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Four years ago… January 25, 2013. I was in the first major surgery of my life. Fighting a foe that no one wants to have to fight, but sadly many do end up battling. It is a nasty, ugly, unfeeling, uncaring foe that is relentless and hateful. One that doesn’t think twice about taking a life. The beast known as Cancer. At that time, my particular version of this beast was of the rarer variety (but growing), Esophageal Cancer.<u></u><u></u></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">What did that mean for myself and my family and friends? Let’s make a list (be aware, some of these may seem a bit small or maybe even petty to some, but they were and are things I thought about)...</span><br />
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<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">12+ hours in surgery</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">19 days in the hospital – 16 of which were in ICU</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">One day from hell 3 days after surgery</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">3 months off work</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Six weeks of daily post-operative radiation treatments</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Weekly chemotherapy sessions every Monday for six weeks, also post-op</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Massive loss of strength, stamina and physical stature</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">At its maximum effect... a weight loss of 215 pounds</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Blood clots throughout the neck and right shoulder, including the Jugular vein, caused by the chemo port likely being placed too deeply into the chest</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Too much prescribed blood thinners used when the clots were found that caused the blood work to go insane and almost caused another hospitalization and plasma transfusion</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Numerous visits to a Coumadin Clinic (before work) to help manage the blood thinners and blood work after the clots were taken care of with the blood thinners</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Having to pull around those little carts that hold the green oxygen tanks outside of home</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Weeks of physical therapy (which I was horrible at following through with)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Weeks of breathing therapy (which I was even worse at following through with)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Making a lifestyle change when it comes to what eaten, how much, and how often (this change is still ongoing, even after four years)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Being unable to drive</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Doctor’s appointments after doctor’s appointments after doctor’s appointments… And so on and so on and so on… ad infinitum</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Depression</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Self-doubt</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Being totally insensitive to others and their feelings</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Survivor’s guilt (this is still an issue and sometimes makes me hesitate when writing)</span></li>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And the list could go on, but you get an idea. As you can see, that entire list was made up of things that are negatives. How about a list of positives?</span><br />
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<ul>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I was quite obese when this started… Upwards of 400 pounds. My weight is much better and healthier now</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">High blood pressure is gone</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">No more Sleep Apnea</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Blood work is well within the normal range for the most part</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I got more time with my family and friends</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I got to meet and hold and play with all my grandchildren</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Had been only six years into my marriage, got more time with my loving and beautiful wife</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Started noticing things I had previously taken for granted… the beauty of a tree, a sunrise or sunset, the sound of a grade school playground at recess, the smiles and laughter of my loved ones, how a baby smells after a bath, gaining an entirely new perspective of what it means when friends and family gather for any reason, how a kiss feels, being unafraid to shed a tear or two…</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I got to see how strong my family and friends are and how much their support means and how much I depended on it (even if I didn’t admit it at the time)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Realized how strong *I* am</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Discovered my superpower – Kicking Cancer’s ass</span></li>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">In short, I survived. Against the odds based on the staging of my cancer (stage 3) and the medically listed survival rates and all. God has something in mind for me. What it is, I have no idea. I’ll find out as time goes on. They say that he will never place an obstacle in our path that we cannot overcome. This helps to show just how strong you really are and can be. You’ll never know just how strong you are until being strong is your only choice. Does being strong mean you will always win? No… but yes. If you are strong to the end and don’t give up… If you go down but go down swinging, that is a win in my book. That is true for your entire life, not just in the face of sickness or disease. Fight with all you have for as long as you can and you are a winner to me.<u></u><u></u></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am aware that most of those last few sentences sound like a motivational poster or bumper stickers or something, but they are true to me. Some of the major things I’ve learned over the last four years.<u></u><u></u></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Lastly… Love to you all. Live long and prosper.</span></div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com2Streator, IL 61364, USA41.120866799999988 -88.83535241.02517379999999 -88.9967135 41.216559799999985 -88.6739905tag:blogger.com,1999:blog-2727385194202256143.post-33449970780941276812016-12-05T16:21:00.003-06:002021-03-10T20:00:34.096-06:00Papillary Thyroid Cancer... And the AftermathHello everyone. It has been a while. Last time we talked I had just been diagnosed with Papillary Thyroid Cancer. A lot has happened since then.<br />
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On October 7th of this year, I had my entire thyroid removed. This procedure seemed so different than the esophageal cancer one from the very beginning. First off, the initial time for the procedure was in the middle of the afternoon. That seemed very odd to me. They explained it this way, "We do the younger ones first when it comes to surgery here. This is because they don't understand the reason why they cannot eat or drink on the day of surgery and some don't handle it well. Also, this way they don't have to sit and wait and worry. Youngsters are not as equipped as adults when it comes to dealing with all of it." I fully appreciate and agree with that. Added to the fact this was done in a smaller town hospital with limited space and availability, it makes sense to me. In some ways I think that kids not being "as equipped to handle that kind of stress," is a blessing in disguise for them. If it is not known or not fully understood about the issues and complications that could arise, then there is not a lot of basis for worry or stress, other than the actions and reactions of the adults around them, In my opinion, they are rather lucky in that regard. Their main worry is not being around their parents or family and friends for a while, or I would ASSUME that is the case. They know they are sick and they also know that the doctors will help them to get better. They may not know all the little details of what might happen. Usually anyway. And being a parent, I would think long and hard about telling the youngster about all those details. As a parent, I want to protect them. Do I think they would understand the situation? Maybe, depending on their age and mental level. Would it help them to know about all the little things that might go wrong and what might happen to them? Again, only my opinion here, I don't think that part would be needed. At least not at that point, but again that is based on the age of the child and their level of poise and knowledge and maturity. A lot of that type of detail is scary for an adult let alone a child. Telling it to a child is pretty much cruel in my book. Do you lie to them? No. Absolutely not. If they ask questions, explain it to them as best you can and try not to scare them. In these cases I look at it as it is not a lie to keep the truth to yourself. Tell them later... After. That way you can tell them how strong and how brave they are. They can make the connection that they beat whatever they had and came through it. That way, if something like that ever happens again, the mindset they go into it with might be in a stronger place from which to fight and beat whatever it is they have. If you have been reading this entire blog you know how I feel about mental stance during and after. To me, it is very important. Also, I'm talking "worst case" types of issues here. I realize that no surgery is easy or free of possible bad outcomes, but I am also sure you get where I am coming from. If it is a tonsillectomy, or ear tubes, or something more "common," then the stress and worry tend to be a lot less because there are fewer possible issues and those issues are less common. The kids with the more emergent issues are the ones I am talking about here... But I completely have left the path I started on here. Kids are just that important to me. Felt the need to talk about kids and their illnesses and how I would handle it, so I did. The bottom line is that I agree with taking them first. Get them in, get them out, and get them back with family to start their healing and recovery process. I'm down with that. And not back to where I was heading to begin with...<br />
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So a mid-afternoon start time for the surgery. Usually the procedure takes three to four hours. They make an incision at the base of your neck and work from there. Below is are two pictures of mine.<br />
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<tr><td style="text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1yzfNXEn0RTUVfRKHxmpgnjtjCEiBNf71DUoDcB_rteuM-X_T9Cobq9A1TCvy9cZVxjTlY4f5eH663DsYQEnhyphenhyphen0W_w_dSwa1GnkZPWy8GjZc657tEI5DFuebXtQIyNb2AsrXiAepWQWQ/s320/2016-10-08+14.09.07.jpg" style="margin-left: auto; margin-right: auto;" width="179" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taken the day after surgery, also the day I left the hospital.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyIhJq0m-eKv2NwfxJ56YmsPth0VcW6yAAlkEgt_bJElogjblUALYJc0SxZuc9ItbyeSy0BAye2XKGxwxQ2focARwkpzlIYlrHNQ0OiWVweX0FaErsnYs1W0kfl2OaHHG7wYYwMMSHHyDe/s1600/2016-10-17+14.29.09.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyIhJq0m-eKv2NwfxJ56YmsPth0VcW6yAAlkEgt_bJElogjblUALYJc0SxZuc9ItbyeSy0BAye2XKGxwxQ2focARwkpzlIYlrHNQ0OiWVweX0FaErsnYs1W0kfl2OaHHG7wYYwMMSHHyDe/s320/2016-10-17+14.29.09.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> Taken after about 3 weeks of healing, the day the steri-strips were removed.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1yzfNXEn0RTUVfRKHxmpgnjtjCEiBNf71DUoDcB_rteuM-X_T9Cobq9A1TCvy9cZVxjTlY4f5eH663DsYQEnhyphenhyphen0W_w_dSwa1GnkZPWy8GjZc657tEI5DFuebXtQIyNb2AsrXiAepWQWQ/s1600/2016-10-08+14.09.07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
The surgeon needs to be careful of several things. These include taking great care in working around the vocal nerves and also moving and maintaining four smaller glands called the parathyroids. The Thyroid is just under the adam's apple, so it is very near the vocal chords. If they mess up the vocal nerves, the voice is messed with. That's pretty much self-explanatory. The parathyroid glands and what they do? I had no idea. Here is what I learned. They are usually four of them. They are about the size of a grain of rice and are physically connected to the thyroid gland. They control calcium levels in your body. In a tyroidectomy they have to remove those small glands from the thyroid without harming them so they can continue to do their job controlling the calcium in your body. If they get messed up it can affect your heart, nervous system, kidneys and bones if uncorrected. They can definitely correct having to remove them or whatever that with supplements and pills or whatnot, but they would rather you keep your original equipment, You'll also notice no stitches or staples on the incision. In my surgery they used internal stitches that dissolve and get absorbed by the body, and steri-strips to help keep the site closed and covered on the outside.<br />
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The surgery went without any incidents, however they did find an odd growth <u style="font-style: italic;">behind</u> the thyroid. The surgeon took it out and sent it to be tested immediately. He got the results before the operation was complete. It was listed as "parathyroid tissue." The doctor didn't buy that. He said that if it were parathyroid, the calcium in my blood tests would have been much higher. He thinks it was a goiter, Bottom line is that it was benign, no cancer, and it was removed too. He actually said that had it been parathyroid, he "could have put it back in." I had to chuckle at that. It wasn't parathyroid and my calcium is pretty much normal. The morning after surgery it was a bit low... 8.0, Normal is 8.5-10.2, so they were thinking about not letting me go home. I got some higher calcium food and took a couple of calcium tablets, and it was 8.4 later that day and we all felt better about that.<br />
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Another oddity, pretty much immediately after I got out of recovery and into a room, I was given supper! They gave me meatloaf, mashed potatoes and gravy, corn, jello and juice. And with no swallowing issues I might add. That part amazed me. Lea Ann too. We both figured I would be on liquids or soft foods for a while after. To be honest, nothing in that meal was overly hard, but it sure tasted good! Good tasting food at a hospital is an oddity in and of itself, let alone eating that soon after getting out of recovery.<br />
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More oddities... Had surgery on October 7, got discharged on October 8. Wham, bam, thank you ma'am. And after maybe 3 days of slight soreness, I was pretty much back to normal. Yes, I had to limit lifting and straining to allow the incision to heal well and not rupture. Compared to the esophageal cancer surgery, this was an absolute cake walk, at least as pertains to things physically. Don't get me wrong, it is still cancer and that is not anything to joke about or make light of, but this seemed almost easy. Admittedly, I am not done yet. I still have to go through the radioactive iodine capsules and all that entails (which I will write about further in another blog entry later), and I will have several follow ups with radiation oncology and also the endocrinologist.<br />
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Lastly, the pathology on the thyroid went as follows:<br />
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<li>1.5cm (0.6") nodule, right lobe of thyroid, tested positive for papillary thyroid cancer</li>
<li>0.8cm (0.3") nodule, right lobe of thyroid, tested positive for papillary thyroid cancer</li>
<li>0.4cm (0.15") nodule, right lobe of thyroid, tested as a benign goiter</li>
<li>Left lobe of thyroid - clear</li>
<li>Extra tissue behind the thyroid removed, tested as benign parathyroid tissue, but the doctor disputes that</li>
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So the cancer was staged at Stage 1, no metastasis, no lymph nodes involved (S1N0M0). We were also ensured that this was not a metastasis from the esophageal cancer from 2012/2013. So we caught it early again. I cannot stress enough how much it means to catch these things early. Listen to your body, and follow the schedule of doctor visits and tests so that you can catch anything as quickly as possible. Early detection and correction is the key! </div>
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Thank you all for staying with me through all this. I appreciate your reading and your comments! I can only hope that they writing is helping someone somewhere to understand how someone may be thinking... at least as pertains to cancer.</div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-12245111798298742942016-09-10T22:06:00.003-05:002021-03-10T20:00:52.139-06:00Follow-Up Scans and a New GlowHello everyone. My apologies for being gone for quite some time again. I know I say that a lot these days, but honestly things are getting back to "normal" and life was happening which was taking me away from the blog. That added to the fact that I had actually come to the end of the major part of my main journey with the esophageal cancer and was running out of things that I felt the need to write down. The rest was just continuing physical therapy and doctor's follow-ups. As of this entry I am coming up on 4 years clean of the esophageal cancer. A very good thing!<br />
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Earlier this year I went in for my yearly follow-up PET scan. Everything looked good in the esophageal area, the stomach and liver looked good, colon was good, but there was a glow seen in the area of the thyroid. A slight glow. Not too bright which usually means not a lot of activity, but it was new and it was glowing. My gastro doctor said that the radiation could cause nodules and the glow on the scan, but it needed to be looked into due to my history with cancer as well as my family's history. He said to get an ultrasound of the thyroid and also see an endocrinologist. The ultrasound was done first. Three nodules were found on the right lobe of the thyroid. One was 4mm, one was about 8mm, the third was a little over 10mm. For reference, one inch is a little more than 25mm, so these were all under half an inch. We took that information and went to the endocrinologist. Based on the looks and the findings, the doctor decided to have another ultrasound to measure the nodules to see if they had grown at all since the last ultrasound, and also to do an ultrasound guided needle biopsy of each.<br />
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A needle biopsy of the thyroid is officially the oddest feeling I have had in my life. They use lidocaine to deaden the skin, then use a thin needle to take the biopsies they need. The odd feeling is when the needle enters the thyroid. It doesn't hurt, but it is a pressure. Then they have to literally bounce the needle to get cells they need into the needle and you can feel that vibration in your throat. It is a very odd feeling. They use a syringe to pull the cells up into the needle and take it out. They then give the sample to a lab person that is in the room with you. They immediately use a microscope to check to see if they have gotten enough cells for the testing. If not, they go in again with another needle. They biopsied all three of my nodules. No issues there. Not sore or anything. I was told that the nodules had not noticeably grown and that the endocrinologist would have the results in a few days.<br />
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We met with the doctor six days after the biopsies. I have a new diagnosis - Papillary Thyroid Carcinoma. Cancer was found in two of the three nodules (the third is a small benign goiter).<br />
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This is still new to me and I am in the middle of gathering information on it and trying to wrap my head and emotions around it. What I know so far is this: This is the most common form of thyroid cancer. It usually hits a little younger, the average age being 30-50, and it hits more women than men by a ratio of about 3:1. So I am once again not average. Older than the average patient and on the low end of the gender ratio. 10-year survivability of this is 80-90%. It is not overly aggressive and not usually prone to spread. Generally this kind of cancer is not treated by chemo and/or radiation unless it has spread to the surrounding lymph nodes or other tissues. So far that looks like that has not happened. I will be getting a Total Tyroidectomy sometime at the end of September or early October. Afterward I will likely have to take radiated iodine in a capsule form once or perhaps twice to cleanup after the surgery. Also, I will have to take thyroid medication from then on for the rest of my life.<br />
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It is still too early for me to have a real feel for this or to put my emotions down in this form. I am doing a few things differently this time around though. I am trying to get all the information I can, I am asking people who have had this and had the operation I am having what I can expect through this whole thing. This has been going on over the last two or three days. Emotionally, it was still a shock, but not the gut punch I had with the esophageal cancer. Not sure why exactly, but I expect it helps to know that this is not really aggressive, not a lot of metastasis, generally no chemo or radiation, and even the surgery happens one day and usually the patient is out the next day and back to "normal" type stuff within a week or two. It is still cancer, and it is still scary. I'm still coming to grips with it. As I do I hope to write more here and perhaps help anyone else who might have this, like I tried to do with the esophageal journey.<br />
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If you are so inclined, please keep myself and my family in your thoughts and prayers. If you have gone through this or were a family member or care-giver for someone who did, please let me know. I'd love to talk with you about it.<br />
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Also, thank you all again for following along here. Your attention and comments are always welcome and appreciated. :)Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0Streator, IL 61364, USA41.1343715 -88.845503740.751473 -89.4909507 41.51727 -88.20005669999999tag:blogger.com,1999:blog-2727385194202256143.post-3050258206069439832016-01-29T19:59:00.002-06:002021-03-10T20:01:13.801-06:00Three Years Post-Surgery: Now vs. ThenHello everyone!<br />
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It's been quite a while since we connected. Basically an entire year, give or take a few days. My apologies for that. I was chugging right along with this and suddenly life reasserted itself and I let things slide, at least as pertains to our communication. I'm going to try to get back into the swing of things here so our connections are not so few and far between. I appreciate your staying with me after all this time. Thank you!<br />
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In any event, as the title states, I passed my three year anniversary of surgery on January 25, 2016. At last check I am still clean and clear, thank God. Seems like an eternity ago when all this started... Which is odd for me. Usually major things in my life feel like they were a long time ago but also within the last five minutes, but not this time. Not this memory. This one almost seems like a dream. If it weren't for the physical evidence, the scars and whatnot, I might actually start believing it really was a dream. With no background in psychoanalysis and knowing no one that is a therapist, I can only make logical stabs at why this might be. The first and most obvious one, cancer is scary. Even after three years I still do not want to think about it. Maybe somewhere deep in my psyche I think that if I think about it too much it will come back. I know its quite possible that it might come back, but that is a medical thing and has nothing to do with thinking about it too much, but I also am a strong believer in mind over matter. I believe that your mental stance is a big part of recovery as well as protecting you from future "attacks from our not-so-friendly neighborhood disease." From any disease or problem for that matter. How did I come to this conclusion? It took a while. I had to take time to heal and get some distance for perspective. Granted, its only perspective from my particular journey and each journey is different, but as I have said in the past, there are common threads. I'm hoping this is one of them.<br />
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Mentally I think I am still attempting to cope with the whole issue. Is cope really the right word here? Hmmm. Understand? Process? Come to terms with? Get a handle on? Yeah, I think cope is the best fit. Some days I totally forget about it for while. Those are the best times. When things get done without the mental "stop and evaluate the situation to make sure you can do it" thing. I hate that but do it almost all the time. Here's the thing, I am one of those types that will try something a couple or three times. If I am not as good or better at it as anyone else in the vicinity, I look at it as a failure on my part and I rarely do it again. Been that way as long as I can remember. Why? Who knows. My parents were not the driving force behind it. They always encouraged me to keep trying and get better. Somewhere in my little head, the idea hatched that if I am not as good as or better than anyone else around me that does it, I am not going to do it anymore. I actually get embarrassed if I'm not that good. One of the many personality quirks that hang around here. That trait almost stopped me from writing this blog, but the information and message I wanted to give was too important to just let it go. But I digress... Getting back to the stop and evaluate statement from before, I find myself doing that at almost every decision. Physical work like mowing the lawn, shoveling snow, cleaning out the rain gutters, rearranging furniture... I don't have the strength or stamina I used to have. So whenever I have something physical that I want to do my brain pauses and an internal conversation starts between different parts of my twisted little mind. It might go something like this...<br />
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Brain sees the task,<br />
"I need to clear the snow from the driveway and walks."<br />
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Old pre-cancer thinking responds (with a little help from the ego),<br />
"Let's do it!"<br />
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Post-cancer thinking responds,<br />
"Um... that's pretty heavy work, even with a snow blower. Should we think about getting someone else to do it?"<br />
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"Heavy schmevy! We've done this a thousand times before. Just go out and do it!"<br />
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"But we're not as strong as we used to be. What if we get started and can't finish it?"<br />
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"Just DO it! Geez!"<br />
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"Ok fine... but you know what will happen if we can't finish it, right?"<br />
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"JUST GO DO IT!"<br />
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That is a little snip of a typical inner monologue for me when it comes to anything physical. Bottom line is that to this day I second guess myself on almost everything, especially since the surgery. It <i>majorly </i>sucks. I'm learning to deal with it... sorta, kinda.<br />
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Some parts of being this way with things of a physical nature are much harder to deal with than others. What happens is I will start doing whatever it may be, then immediately start looking for things that I'm doing wrong or not as good as I used to. Putting pressure on myself to correct it. I'm sure you can imagine it doesn't take long to get to the point where the pressure is just too much to seem to do anything right, so I just stop. Sad, I know, but it is the truth. The lesson here is this; you can only be you. You can only do what your body allows, so allow it to do to the fullest potential that it can and be happy with that. NO Pressure is needed. As a 52 year old man its silly for me to compare myself to anything I was doing when I was say in my early to mid 20's. Very few people I know could stand up to that kind of comparison against themselves. If you are one that can, more power to you (and I want lessons!). If you are like me, and likely most other people, a completely <u>healthy</u> person in their early 50's wouldn't stand a chance compared to their younger selves, let alone after a major illness and surgery and all that the cancer entails with chemo and radiation and the like. Now see? I can say that, and I fully believe it and I think everyone should think that way... everyone except me. I can't think that way. I must have been absent the day they taught that in "how to use your brain" class... but I am still trying.<br />
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That kind of thing leads directly into the emotional side of things. Emotionally, I try very hard to put up a crack-free, seam-free, happy-go-lucky front at all times. I use humor and laughter and joking around as a crutch and as a deflector. Most times I am that way... well maybe not crack- or seam-free, but smooth enough. Much better than I used to be to be sure. Back in the beginning, if you read previous entries in this blog, you'll see how much of a wreck I was. I was a total ass in pretty much every manner, at least for a while. I was wearing chain mail under armor, behind a shield, behind mask after mask, behind several walls I had built up to try to protect myself. Thing is, all it did was isolate me and make me feel worse. People can only beat their heads against those walls for so long before they have to stop and tend to their bleeding head before they try again, if they don't leave all together. I was lucky and have people around me that are even harder-headed than I am. We all have people like that. Our support systems, our lifeguards, our guardian angels, our family and friends. I plead with you to not let it get that bad for you. Don't be like I was. Don't get totally closed off and closed minded. Open up. Talk. Yell. Laugh. Cry. Ride out the feelings like a surfer on a wave. If you stand still in an onslaught like that with wave after wave after wave, you are bound to crumble and implode. NOTHING can withstand that kind of pounding. Regardless of how strong you think you may be or how strong the walls you thought you built. They will crumble and fall. Trust me, I know. I was literally seconds from that on quite a few more occasions than I care to admit. To this day, three years plus later, I still will be sitting down doing whatever and suddenly a wave of sadness will smack me in the back of the head and I will start to cry. It doesn't last. I won't let it. I can't let it. I have to be better. I have to be strong. So I fight it back and press it down and internalize it very quickly. But it happens. Pretty much every day. A lot of times more than once a day. Is it better than is used to be? Yes. Will it ever stop? I have no idea. Wish I could be more positive there.<br />
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Feelings and emotions seem to be deeper and stronger than they have ever been. Maybe because after a life changing illness you tend to see things differently and take less for granted. That sounds so very much like a "canned" response, but it really is true. You look at things differently. Enjoy things more. See the beauty in things and less of the negative. Love deeper. You get more emotional. I was never a crier (again with the crying?) at movies... at least not until after the surgery and recuperation. Now I do. I still do my best to hide it. Why? Not really sure. Maybe it is the male upbringing about boys don't cry. I'm sure those closest to me, like Lea Ann and our kids, can see it. They just have the decency not to throw it in my face. Hopefully your people are like that as well.<br />
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The moral of this whole entry is just this... Even after three years of recuperation and healing, there are still many things that this cancer and all it did to change my life that need to be tended to. There are mental things, physical things, emotional things, psychological things, all kinds of things... that I am still discovering and learning to deal with on an everyday basis. The same will likely be true for you. Your path will differ from mine. No doubt. No two paths are the same in these cases. Not even for the same person if they have to travel that same way more than once. But there are enough similarities that I hope I can get you to see and look at and understand so that you don't feel so alone. So that you don't feel like no one understands. So you don't think you are the only one in the world feeling the specific feelings you are having or had. I know. I understand. I went through it, both as a family member and caregiver, then as a cancer patient that is trying very hard to become a cancer warrior. I want everyone who is reading this, patient, caregiver, friend, family member, nurse, doctor... anyone, to become a warrior too. There can never be enough warriors. Whether you win the battle or might be losing it, being a warrior means you fight the best fight you can for as long as you can. It also means that you are allowed to lean on the other warriors around you. No army of warriors can stand as individuals for long. Not all of us can be Rambo or want to be. I'd rather be surrounded by my fellow warriors and be able to fight by their side. Win with them. Lose with them. Laugh with them. Cry with them. Lean on them. Rely on them. Hug them. Help them when they fall and accept all that that back in return.<br />
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So I am asking you... Please be a warrior with us. What do you say?Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4Streator, IL 61364, USA41.120866799999988 -88.83535241.02517379999999 -88.9967135 41.216559799999985 -88.6739905tag:blogger.com,1999:blog-2727385194202256143.post-49043010846337562442015-01-25T23:35:00.001-06:002021-03-10T19:57:11.457-06:00January 25... Two Years AfterHello everyone. I hope you all are doing well and feeling good as you read along here. This entry will be a departure from my usual "memory" type. Why, you ask? The title of this post pretty much gives it away. Two years ago today I had surgery to remove a good portion of my esophagus and the upper portion of my stomach due to cancer that was at the junction between the two. In fact, as I write this entry I would still be in surgery were we back in 2013.<br />
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Beware... This entry may jump around a bit. I am just doing what I call a "brain dump" here... I hope not too much so that it might make at least some sense.<br />
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That surgery in late January of 2013 was my first time in a hospital overnight, ever. My first surgery, save for a few out patient procedures throughout life to that point. It took somewhere around 12 hours... Two large incisions... One down the middle of the chest from mid-chest to below the belly button... The other on on the right side and back from under my right arm, curving around the lower edge of the right shoulder blade to near the spine... Internal reconfiguration galore... Esophagus about 1/4 the length it used to be... The upper part of the stomach removed and the remainder of it stretched up into the chest and reattached to what was left of the esophagus... The stomach went from a pouch-looking organ into more of a tube looking one... No more muscle at the top of the stomach that keeps everything in, or out for that matter... Changes to diet, appetite, mental stance, self-image, home life, work, medical... Everything. Mental, physical and emotional.<br />
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To say this time has been an upheaval of our lives would be a major understatement. You'll notice I said "our lives." Those of you reading this because you are currently going through a similar journey, or have been through it already understand why I say it that way. It affects EVERYONE. The person that has the cancer, the caregivers that person has around them... family, friends, acquaintances, co-workers... pets... Everyone. Cancer is a life-changer, and sadly in some cases a life-taker. In my personal case, at least so far, it has been a major life changer. It has also been a life-taker for me but on the caregiver/family side. I have lost both grandmothers, a grandfather, my father, my mother-in-law... all to cancer in one form or another. My mother has had it four times. My father-in-law is in remission. Others too, like Lea Ann's grandmother that they affectionately called "Donut Grandma" because they would go to her house after church on Sundays and she always had doughnuts for them. We lost Lea Ann's mother just 7 weeks after diagnosis to a particularly aggressive type of cancer. My father was diagnosed in early 1983. We lost him almost exactly 3 years later, after some experimental and new things were tried and that was able to extend his life for a short time. My paternal grandfather had several issues to go along with cancer that spread rapidly and took him. What I am trying to say is cancer is<i> never</i> minor. I don't care what kind it is. It changes everything... Some may want to debate that, but I'm not going to. At least not at the moment. Just putting my opinion into words here.<br />
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It seems like it was only yesterday when I started having issues with swallowing and eating, but it also seems like a million years ago. Being who I have always been, I just basically ignored the problem... Looked at it as an annoyance, nothing more. My thinking was that it was just a little system issue and it would go away given time. I'm here to tell everyone, what I did was a very bad idea. When your body tells you something is wrong by making it uncomfortable or hurting you have to learn to LISTEN to it. If it had not been for Lea Ann and her seeing how I had changed what I was eating, or many times the lack of what I was eating, I might not be here today writing this blog. I hated going to the doctor. Always have all the way back to my days as a baby. Mom tells me that when I was a baby I knew the doctor's office parking lot as as soon as I saw it I started crying and would not stop until we left. I have no issue taking anyone else to the doctor, In fact, I press people to go and I take them... but god forbid if I had to go. It was like pulling fingernails off with needle-nose pliers. To this day I still get that ball of worry in the pit of my stomach when I go. Part of my brain says if I don't hear what is wrong, it's not real. However the larger part of me knows better than that. And it is still learning. As they say in many areas and groups, the first step to getting better is to admit there is a problem. This goes for cancer too. Of course, no one wants to hear they have cancer, but if you find it early you have a much better chance of kicking it's butt. So I urge you, I BEG you... If you feel wrong or you are hurting, listen to your body and go get it checked out. There is no one else that can ultimately tell you how you feel other than yourself and your own body. Just listen...<br />
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After my surgery and chemo and radiation were complete, my gastro doctor told me something that I always remembered and it really rang true. After a major surgery like this, It will take at least a year for a person to start "feeling like themselves again." That rang very true for me. It was maybe a little more than a year before I was through all the therapies and all before I started feeling like myself again. Until that time there is just too much going on. Your mind is just too overwhelmed and your body is still healing for much of that time. You just have to ride it out. It is do-able. It is possible. There are times and situations where it is not doable completely, but I hope that, if you are in that situation, that you go down swinging. You and yours are a lot more tough and powerful than you give yourselves credit for. I truly believe that for everyone involved... the cancer patients and their families and friends and caregivers too. It takes a lot. Mentally and physically. It is the toughest fight you will ever have to fight. Period. If you win, you show yourself and everyone else just how tough and resilient you are. And if you happen to be losing, you can still prove your toughness and show you are not going to give up. Miracles happen every day. Who knows what can happen? Bottom line is, you'll never know until you try. I can say that now. Back in the middle of all this I came very close to giving up. Very close. In fact I actually said words to that effect to my wife... I said something like, "What difference does it make if I do any of this stuff? I am going to die anyway!" That is how I felt at the time, but looking back now I am actually rather ashamed of myself for saying that. I never looked at myself as a quitter, but that moment made me think. Luckily my support system and family would not let me do that. Lea Ann and the rest of our family knew me well enough to know I didn't mean it. Depression makes you say and do things like that. It is common to be depressed and to be scared. It means you are human. Just always remember that you are never alone. Even if you have no family or anything, those at the hospital can help, or support groups, or even on-line communities. There are MANY people that can help you, if anything else just to listen and to maybe understand a little bit of what you are going through. I say again, no one needs to go through this alone... and no one ever should.<br />
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I cannot say enough about our caregivers and our families and friends and the other "watchers." They are the source of so much strength for anyone going through this. For the cancer patient, but also for each other. Cancer is scary at ANY level. Everyone involved will go through many levels of emotion and anger and resentment and depression. Everyone involved can and will need some support. We as patients are the center of attention. People from all over trying to help and get us through. The rest that are having to stand by and wait and help and support tend to not get a lot of attention. I mean think about it... When a person has cancer, how many times are the caregivers and families asked how they are and if they need anything? I know it happens some, but not nearly enough in my opinion. That support system of love and prayers and support and anything else we need isn't a 9:00am to 5:00pm, Monday through Friday only thing. It is a 24/7/365 thing. That is mentally, physically and emotionally draining. They are just as scared and worried and anything else you can think of as we patients are. I know that without my wife and our kids and our family and friends, both with us there in Arizona and those that were with us in spirit, we would not have made it. Our family and friends were the source of all of my strength when I was ready to give up because I was so scared or so tired or so depressed. They would not let me quit. And I am forever in their debt. I was not an easy person to be around for quite a while and NO one gave up on me. That is what counts. Our support network is there for just that... to support us. Don't ignore it... don't feel guilty about it... don't just let it sit there... USE it. These people love you. They will help you in any way they can... Trust in that, use that, feel that. Think about it this way... If you were the support and not the patient, would you want to help and do all you could? Would you hope the person "in the fire" would take all you have and use it to fight? I would. I cannot praise those people enough. I've said it once, and I'll say it a thousand times more... the caregivers and families and that whole support network are just as much cancer warriors as anyone. 100%.<br />
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Number one on that list for me would be my wife, Lea Ann. My angel baby, emphasis on the word <i><b>angel</b></i>. She saved my life. She was my anchor, my rock, my everything through this. She was the leader of the whole support system, top to bottom. I speak directly to her right now... <span style="color: blue;">Baby, you were there in the sickness, just like the vows say... and you saved me. You were there at all times, without fail and without question. I don't think I can ever repay you for that, but I also know that you would say that you don't expect payback. That is what loving someone is all about. I understand that and I hope I will always make you feel the love I have for you. Whenever you need me I will be there. Forever, plus as many more forevers as you need or want... then at least 10 more. I love you! </span><br />
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To our kids and grand kids and parents and family and friends... all I can say is that I love each and every one of you. Thank you for being there for us... at all times. In person or on the phone or electronically or spiritually... It all matters. It all counts. It is all needed, and most of all it is the most pure sign of love and respect. I can only hope that you all can feel the love and respect reflected back to you from me and from Lea Ann.<br />
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Two years after the fact. I've never stopped fighting. Have there been peaks and valleys, you damn betcha... This is not a fight you stop after a while. It is a fight to live. I have been one of the lucky ones. So far I can say that I have kicked cancer's ass. I've done it but definitely not alone. I have needed and used every last bit of love and friendship and support I have gotten throughout the whole ordeal. And I vow I will continue to fight as long as I can. I feel it shows respect for you all and your support and love and to prove I am worth all the time and effort you have all put in.<br />
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<b><i><span style="color: #cc0000; font-size: x-large;">Once a cancer warrior,</span></i></b><br />
<b><i><span style="color: #cc0000; font-size: x-large;">ALWAYS a cancer warrior...</span></i></b><br />
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Love, prayers, good vibes and light to each and every one of you... For now and for always. Thank you for reading this rant of a post. I hope it made some sense. I appreciate your attention and, as always, hope that it helps. if it helps even one person, I have done what I set out to do...<br />
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See you all next post.Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com8tag:blogger.com,1999:blog-2727385194202256143.post-14207566425833268312015-01-08T18:41:00.002-06:002021-03-10T20:01:32.633-06:00Trying to Shrink Clots, the Return of Physical Therapy, and Another Visit from the MidwestHello Everyone! I hope you all had a happy holiday season! Much has been happening here and it has taken me from the blog a bit, but I am back now! Thank you for sticking around and waiting patiently for the next post. I very greatly appreciate it! In the down time, along with several holidays, we passed my 51st birthday (several other family birthdays too), we're are fast approaching the two year anniversary of my surgery, and soon after that, our eighth wedding anniversary. One of our daughters is with us now along with our youngest grandson... Our other kids and grand-kids spread all over the place... Parents... Friends... Work... Needless to say we have a full life at the moment, but it IS a happy one! Here is hoping that you all are just as happy in any way that works for you!<br />
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When we were last here together, I had just started two different blood thinners in an attempt to erode the blood clots that were in the right side of my neck and shoulder. As it turns out, to much blood thinning medication. Also my father- and sister-in-law had come to visit us to make sure all was well, to see if there was anything else they could do, and just show support for Lea Ann and myself and the rest of us. As I have said, our son Bill and nephew Eddie were with us at the time, as was our granddaughter Sophie most every weekend (the was absolutely great therapy for me, too). Also, we had one of my daughters in the area in an adult assisted living home (she has cerebral palsy). The rest of the family and our friends were always here in spirit, even if they could not be here in person. We realize and understand that and know that every bit helps. One can never ever have enough support and prayers and positive thoughts and vibrations. We kept up to date with them all, mainly electronically and by telephone. Facebook and email were used constantly. In fact we still do that to this day. It makes a large mental difference to know that your loved ones are just a click or a call away. The Internet has made this world so much smaller in times such as these. Plus it allows me to talk with each of you as I am right now.<br />
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The week following the Emergency Room Visit and the high INR blood readings, I was scheduled to go to the Coumadin Clinic daily. This was just down the road from the cancer center where I had my chemo and radiation done, so it was another 20-30 minute drive for us. The drives were daily at first. We set them up early in the mornings, and they didn't usually take long. Maybe 5 or 10 minutes, 15 if I had questions. The appointments generally went like this... Arrive, sign in, wait a few minutes, go into the office, get a finger poke and dab a drop of blood on a test strip, wait a few minutes for the computer to analyze the blood, get the reading, work with the clinic nurse on what needed to be done as pertains to what to take and when and what to eat and not to eat in the next 24 hours. We were shooting for INR readings between 1.5 and 3 generally. At first the numbers were in the 4 to 5 range. The nurse stopped the Lovenox shots and we worked only with the Warfarin pills and the size of the dosages. We also talked of the nose bleeds and other bleeding that might be possible. As the days and weeks went on, we got the INR numbers in that 1.5 to 3.0 range... and soon I was going every other day, then every three or four. After a time you can almost get a feel for how things are going. That is NOT to say don't go because you think you know. Never go on what you think, go on what you KNOW. And in this case, the way to know is to get a finger poke. I will say I do not envy the diabetics and others that have to do that a lot. The fingertips can get a bit sore after a while. It is worth it though.<br />
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As we were getting a good handle on the INR situation, my chemotherapy and radiation were restarted. By this time we are a little past two months post-op. My last chemo and radiation therapy treatments were on April 22, 2013. I remember the date well. It is the day I actually started back to work. I had been off work for just shy of three months. I am actually rather looking forward to going back to work. Returning to normal, if that is really even possible. My manager and the people I work with were really great through the entire ordeal. They kept up on progress and asked if anything could be done, sent flowers and emails and thoughts and wishes the entire time. I used up all my paid time off, so some of them even donated time they had built up to me so I could continue to get paid. I was on short-term disability through work too, but that only paid 60% salary unless you use your accrued time off to supplement that. Those donations meant a lot to us. Between the last of the therapies, and the Coumadin Clinic, and follow-up appointments, and now work, our days were full. I would go to the Coumadin Clinic before work, then work as much as I could until the next appointments popped up. my employer and manager worked with me a lot on hours and making time up so I could start accruing time off again.<br />
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The home health nurse was coming every two or three days now to continue the checks. That was easy. Check BP, pulse-ox, respiration, listen to the chest and heart, temperature, weight (concerned here because it was still going down), discuss the Coumadin clinic findings and medications. Also, we had been told by the respiratory doc that we could wean off the oxygen and just have it through the CPAP at night as long as my oxygen saturation stayed in a good place. Within two weeks the oxygen cords were coiled up and sitting on the oxygen pump in the bedroom. No more little cart and green tanks to pull around anymore. I still have to do all the COPD meds and therapies, but some of them are changed from daily to as needed. My weight was getting down around 200 pounds and I was still losing 5-10 pounds a week on average. This was concerning to the nurse as I had gone from 360 pounds before my diagnosis to this weight in less than 6 months. 160 pound weight loss and still dropping. That is hard on the body when it isn't trying to recuperate and heal, let alone post major surgery. However she was in contact with the doctors often. They are talking like I may be put back on J-Tube feedings to supplement the eating I was doing, which still was not much, but they were not going to start that yet. Keep monitoring it. To be honest I am afraid to eat. I do not want to feel that stuck food feeling. When that happens it scares the hell out of me. I panic. I know it, and Lea Ann tells me she can see it too. When it sticks I don't so much choke as if I cannot breathe, it is more like food is stuck and nothing behind it will go down, so the esophagus is trying to swallow but only air gets in which causes a burp and that fights with the trying to swallow. It is a very uncomfortable feeling. Nothing going in OR out... The only thing I can get out is a lot of phlegm when this happens. I never got to the point of vomiting, though I did come close a few times. Every time it happens I am done eating then and there. Done, done, DONE. No more eating for a while. And whatever it was I choked on is off the menu as well. That tended to be pretty much any meats except the thin deli sliced type and even those were hit and miss, I could do things like chicken nuggets usually, but no stringy meats at all... like roast beef or roast turkey (like right off the bird). Also a lot of breads and grains would seem to stick. Anything that would ball up on a swallow was a possible sticking point. I was basically afraid to eat. HOWEVER... I could eat my candy all day long. And pudding... Oatmeal... jello... Anything thin or easily liquefied I ate. As you can see, most of that was not on a good diet plan or good for me. But at least I was eating something. That is how I looked at it and how I tried to explain it to Lea Ann. Don't think it worked...<br />
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Physical therapy restarted during this time as well. I DREADED those days when they came, even though they were not bad or painful sessions. I just am not one to exercise much. It was still the same young guy that it had been before. Things started out small. Walking mostly. Around the house and yard, but very soon we were walking up the road to the park and then around the other block and back again. The entire time I had to wear the pulse-ox monitor on my finger and he checked it a lot. If I ever needed to stop he told me to just do it. It wasn't like we were sprinting or anything. We are trying to re-build lost stamina and strength. That takes time. We would start and stop several times as we walked... Sit on the park benches for a time to get the wind back and then continue. All the time he kept a close eye on me, always ready to catch me if I fell, though I never did. I am still rather proud of that. One of the things that he told me that impressed him was that when I restarted after a break I would actually go faster than before the stop. That is a good sign and shows you are willing to work. I admit I dreaded the PT, but when it actually came to doing it, it really wasn't so bad to get outside and walk around. Plus I had been an athlete WAY back when, so I knew what it took to work and knew how to do it, I just didn't want to. We'd talk of things outside the sickness while walking, that helped too. Normal conversation. As our walks continued and I seemed to be getting stronger, he had me start doing strange steps and side ways walking and up and downs on the curbs. To people looking out their windows I am sure it was a rather amusing site. An old fart stepping sideways and alternating between up and down the curb while walking down the street as this younger guy looked on and helped if needed... But honestly, I didn't really care how silly I might have looked. No one knew what I had gone through and if they cared to ask I would tell them and they would understand. Otherwise, I would just give them a quick chuckle they would likely forget about in five minutes anyway. it was helping me, whether I liked it or not. And I did know that. I am just lazy and dread having to do things I don't initiate on my own. I am sure some of you can understand that.<br />
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Mentally I was still in a deep funk. Easily angered, depressed, and scared about everything, and it still showed as bright as the sun to Lea Ann. I am sure to others as well. I was not easy to be around, and if you were around I did not talk much and smiled less. Was it self pity? I can't say for sure. I am sure at least some of it was. I was comparing my situation to my father's before he died in 1986 from colon cancer that had spread to his liver. My mind never strayed too far from the fact that I am the same age he was when he was diagnosed and he died of it. I now see and know that each journey is different. Some common threads, but no one has the exact same experience as anyone else... Ever. Just ask them to be there to support you and you will do the same for them. Listen, support, hold hands, hug, love on them... do all you can for each other. That is the best thing anyone can do. Showing support for those who support and give you the care you need is as important as them as them giving you the care you need. They need to know what they are doing is making a difference and helping. I was not good at that part, at least when it came to Lea Ann. I lashed out at her a lot. She caught a large majority of my bad moods, my depression, my excuses... everything. And it was wearing her down and getting her more and more worried. Physically I may have been getting better, but mentally was another story. It got to the point that she called the group of guys that have been my inner circle of friends, most of which I have been extremely close to since high school. I consider them all my brothers, and have known a majority of them for more than 35 years. Lea Ann had told them about everything that had been going on way back when chemo and radiation was starting, and at that point they were talking about coming out to visit, but it never materialized. At that time they told Lea Ann that if she needed them to come out, they would do their best to get there. She asked them and to their credit, four of the five of them made it out within a few weeks of their conversation. The fifth friend wanted to come, but could not swing the time off. They drove out and stayed a few days. They came over, we talked and laughed and joked and fell right into step as if nothing had happened and no time had passed since I had seen them all, even though it had been several years. Lea Ann says it was like night and day to her. She says I lit up. I was me again. I actually kind of feel bad for that. I wish I could have been that way for her and it didn't take the extra help. I am sure she understands, but I would bet that it still hurt her too. I hope that someday she will let me make that up to her. When the guys were down, we had a BBQ, did some video taping and all our silly commercials and lip synch videos. We drove around town and I showed them some of the sights around the Phoenix area, went to the movies and saw one of our favorites, Star Trek. We were the guys. It felt normal. It felt "outside" the cancer stuff, and it felt good and right. I personally believe that the visits of Lea Ann's dad and sister, and the visit of my guys was the mental turning point for me. I am not sure exactly why unless it was the simple fact that, as I said, they were "outside" the situation. I don't mean that in a bad way. I mean it as in the fact that they were not there for the entire thing. They showed me that the world was going on and I could go back to some semblance of normal. I think I would have come to that realization with just those that were there in Arizona with us from the beginning, but I guess sometimes an infusion of "outside" helps to kick you in the pants and prove to you that things can get better.<br />
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I am including pictures of both visits. This first one is from Lea Ann's dad and sister's visit in April of 2013.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO1K_LJmw0cT_tJqvuN9JNWtzNe8AMLEVNSg9hDCYfZ41wZoDDPn6jgNRAkvflwaGJPreDloikzVfcTUwn4rL5fRwIsJcWc34rWlCoVl19B2-1iWTcFEJgaoZ_uJG4TM0DHUnmiLJUP1cc/s1600/April+2013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="04/2013" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO1K_LJmw0cT_tJqvuN9JNWtzNe8AMLEVNSg9hDCYfZ41wZoDDPn6jgNRAkvflwaGJPreDloikzVfcTUwn4rL5fRwIsJcWc34rWlCoVl19B2-1iWTcFEJgaoZ_uJG4TM0DHUnmiLJUP1cc/s1600/April+2013.JPG" height="265" title="April 2013" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;">Grand-daughter Sophie, son Bill, Lea Ann's father Ed and sister Mary, son Bob, Lea Ann and myself, son Aaron, & nephew Eddie.</span></td></tr>
</tbody></table>
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This one is the from the guys visit in June of that same year, 2013.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV3a3xsNtW6l_NQQ9s4LcXJRCxDiLZ8eIG7VU66ufPePT5OHZ-eUHk2bfjqrJjUZI2EFsSQLTkUVBA0eyhSatjwLXnsnoyPsR43cI4csnVbG7jODyIzfOJQOqouqtClVB8EISDpi4LzESe/s1600/jun+2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV3a3xsNtW6l_NQQ9s4LcXJRCxDiLZ8eIG7VU66ufPePT5OHZ-eUHk2bfjqrJjUZI2EFsSQLTkUVBA0eyhSatjwLXnsnoyPsR43cI4csnVbG7jODyIzfOJQOqouqtClVB8EISDpi4LzESe/s1600/jun+2013.jpg" height="347" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matt, myself, Kent, Lea Ann, Chris, and Alex.</td></tr>
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That is where I will leave you for now. Next entry will talk about follow up scans and how things went from those findings. Thank you for sticking with me and the blog! See you next time!Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com2tag:blogger.com,1999:blog-2727385194202256143.post-48066965201289344802014-09-16T22:00:00.002-05:002021-03-10T20:01:53.439-06:00The (Unwanted) Power of the Power PortBlood clots...Throughout my right shoulder, upper arm and neck, including in the Jugular. None are completely blocking blood flow or anything, but the bottom line is clots are a demons that live within the beast. The most likely reason the clots formed was that they placed the power port too deep into my chest, plus the fact I am a hyper clotter. As we all know, it only takes the dislodging of a part of a clot to cause a very bad outcome. I know this, however for some reason I am not too worried. I mean we have a plan, the power port getting put in was no big deal last time, so why would it be a big deal this time? What I failed to take into account was the fact that the power port is what actually caused the clots. So removal of the clotted off port could quite easily break off part of the clot. I'm not sure if it was because I didn't want to see that fact, or just did not realize it, but it never entered my mind. Outpatient surgery... been there before. No big deal, right? I think even Lea Ann thought that way. The reason I think she was of that mind too will be explained a little later. In the mean time I have been told to basically sit and do nothing. I'm getting very good at that. Sit in my recliner and the most strenuous thing I do is use the TV remote.<br />
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The home health nurse still comes to the house daily. She is worried enough about the clots that she starts doing blood pressures and all on the left side. The right side is where all the clots are. I am still sore in the neck and shoulder area. Stiff as if I slept on them wrong, but the feeling doesn't go away through the day as it usually would. I am told that was a side effect of the clots. Until that time, I had been told to look for swelling and redness and fever in the area. Those were the warning signs of clots. I had none of that. No redness, no swelling that could be seen and no fever in the area. All I had was stiffness and soreness. Had the port been able to draw blood it is quite possible that the clots would have gone undetected. Not good. Not good at all.<br />
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During this time, Lea Ann's father and sister, Ed and Mary, had been planning to come out to visit and check on us. This is a <b>very </b>big deal. They are going to fly out from Illinois to Phoenix. Why is that so big? Because Ed has never been on a plane before. He would always rather drive. Planes were just not part of his life. I have been told that he had told his wife that they would go to Hawaii just as soon as it was possible to drive there. The issue right now was that a drive from Illinois to Phoenix takes two to three days unless you drive straight through. A flight out is about 3 hours... So flying it was for two reasons. One, they get there faster, and two, Ed had had a medical procedure done not long before and he was still recovering from that so a straight through drive wouldn't have been safe or a good idea. The fact that he was going to make his first plane trip to come out to see and check up on us is a HUGE deal. It meant the world to us both! This will be woven more into the story more in just a little bit.<br />
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Two days later, I am back at the hospital getting all checked into out patient surgery. All the usual things are happening... Kind of. Everything is being done on the left side. Blood pressure, IV, pulse-ox... everything. In fact, they put a red bracelet on my right wrist telling them to not do anything on that side. That is understandable, but the vein they have to use in my left elbow runs cross ways.That means the IV is going across my elbow instead of down the side of it. It also means that I can't bend my arm or it will block the IV. They had tried to get the back of my hand and my wrist with no luck.Three or four sticks for an IV are enough for me, and I said so. That's why they went to the elbow. After all the preparations and the visit from the anesthesiologist, the doctor comes in. He explains what will be happening and that it will take about 45 minutes as opposed to the usual 20 since there is a removal and a replacement. Lea Ann and I both nod and understand. It is what we thought. Then the doctor steps outside the curtained off area and asks Lea Ann to come out too. This is where it gets scary for her. The doctor says that this surgery will be touchy and that she should make sure she says goodbye to me before I get taken into the operating room... Just in case. What?! Why? Well because this surgery has a good chance of breaking off a part of the clot and if that happens and it gets into the bloodstream it will be... bad. Now Lea Ann is frantic. She is all alone. None of the kids came with her because we thought this was going to be a cake walk. Now suddenly there is a good chance her husband might die on the table, outpatient surgery or not. He asked her out here to tell her so that it would not work me up. That makes sense, but how can she now not show the worry to me? She puts on her best smile and comes back into the room. She takes my hand and just stands there as we watch a little TV waiting to go in. As they come in to take me, she leans down and kisses me and says she will see me later. I kiss back and say yes she will, but I don't notice how misty her eyes are. As soon as they take me in and she is taken back to the waiting room she is immediately on the phone. The first people she called were her father and her sister in Illinois. She was frantic. Her father told her to call and get someone to get over there to be with her right now. Her next call was to the boys, specifically Bill and Eddie. They work nearby and were living with us at the time. She explains to them that she needs someone to come to the hospital... Now. To the boys credit, they are there within 20 minutes to help support and comfort Lea Ann and be there for me too, even if I didn't know it at the time. This meant the world to Lea Ann and when I found out after the fact, to me as well. Shows the love and support a family should always have. With everyone there now, they sit and wait. A little over an hour later I am in recovery. The port was successfully removed and the new one put in... and most importantly, NO complications. This is when Lea Ann told me about her little conversation with the doctor out in the hall and why the boys were at the hospital when I got out. I am glad they didn't tell me before hand. It would have worked me up into a little tiny ball of worry and nerves.<br />
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Now start more new medications. Blood thinners. I have to start taking Warfarin pills. On top of that I have to get two shots a day in the belly. The shots are Lovenox, another thinner. The hope is that the thinned blood will assist in the erosion and disappearance of the clots. I'm still allowed no strenuous activity which is nixing physical therapy for now. I am told to be EXTRA careful, too. Even a nose bleed right now could be serious because now my blood will be thinner and it may not clot as it should. I could lose a lot of blood and pass out or worse. They are setting me up to go to a Coumadin Clinic daily to monitor the clotting factors in my blood and to modify the medications accordingly to keep it within limits and not get out of control. I will start going to that clinic in a week or so. We have to get the thinners into my system first. Just be careful and try not to cut my self or have a nose bleed or even get a bruise. I also have to watch what I eat. Green leafy vegetables give Vitamin K with counteracts thinners, so I have to stay away from those. Wow, they are serious. I guess this is a bigger deal than I thought.<br />
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Everything seems to be going OK for the next couple of days. Then the nose bleed started. I have had issues with nose bleeds ever since I was a kid. The oxygen was drying out my nasal passages and when I scratched it, it started to bleed. We tried to get it to stop and did get it to a few times. Once by stuffing Kleenex up my nose (found out later that is not a good idea. It can actually cause it to bleed more when you take the Kleenex out, it rips off the new clots and starts the bleeding all over again). Then it started again and I pinched it off and used an ice bag and it stopped again. The next day they send me to a lab because they need to take some blood to get what is called an INR count. This counts the anticoagulants in the blood. The higher the number, the thinner your blood is. Typical INR in people not on thinners is around 1.0. People on thinners are shooting for 2.0 to 3.0. The Coumadin Clinic helps to monitor and adjust the medicines to keep it in that range. I get the blood taken and they make sure I stop bleeding, then we go back home.<br />
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The next day is when Ed and Mary are to arrive in Phoenix. Early that morning (at like 7:00am), we get a call from the chemo doctor. It is rather odd for a doctor call that early in the morning, and we know what visuals that conjures in most people's minds. She has just gotten the blood test results and wants to know where we are in relation to the nearest hospital. Why? Well, my INR was high so that they want me to go to the Emergency Room. They will call that ER and let them know we are coming. We say OK and Lea Ann and I leave soon after, scared as hell once again. We reach the ER and they take me directly back into a room. They start asking me if I had been bleeding, and it just so happens that I had been having another nose bleed, so they give me a clip to put on my nose for direct pressure. In the mean time, they have taken more blood and now there is a girl in the room who has started filling out <i>admission</i> paperwork. We start asking her questions, but she can't answer them. She is just doing what she was told. The doctor comes back in, so we ask him. I am to be admitted into the hospital. My INR is so high they are going to have to give me plasma transfusions to help spur coagulation in my blood. WHY?? What is going on?? We just has blood work done. The lab results that came back from the blood work yesterday show that my INR was <u><i><b>over 14.0</b></i></u>. WHAT?!? That has to be a misread doesn't it? If it really were that high wouldn't I be bleeding out my eyes or something? They take more blood and are rerunning the numbers as a double-check. A little while later the doctor comes back in and says their lab shows a current INR of 7.8. Still Exceptionally high, but not high enough to have to be admitted. They are going to give me some Vitamin K. I take the vitamins then we have to wait for them to take effect. During this time Ed and Mary arrive at our house. They have to just sit and wait for us to get back, but Lea Ann is giving them updates and information as we get it too. We end up sitting and waiting in the ER for another four hours waiting my blood work to show some response to the Vitamin K. Once there is a drop in the INR, they release me and we can head back home.<br />
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Once we get back home, we greet Ed and Mary. We are SO glad they are there and we let them know it. Ed had undergone a procedure not long before they left Illinois that had left him sore and having to walk with a cane. He is in remission from bladder cancer. They stayed with us for several days. Talking and listening and laughing and even going out. We went to a local steak house and had a family meal there. It was one of the first times that I had gone out to do anything outside of medical stuff since my surgery. We even took some pictures. Ed and Mary's visit was a huge shot in the arm for both of us. That, added to the fact of how quickly the boys responded to Lea Ann's call from the hospital that day, just showed again how a family is supposed to come together and work as a team to support each other in times like this. I will never forget that. My memories may be a bit out of sequence or a little off here and there, but they are still there. I love them for it.<br />
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Here we thought we were through the worst of this, and now we're told that anything I might do could now make me bleed out, or dislodge a clot, or any number of other things that could kill me... Will this ever start getting better?<br />
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Please check back soon for the next entry! I appreciate your sharing the journey with us!Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com0tag:blogger.com,1999:blog-2727385194202256143.post-20150604711177714612014-09-03T23:25:00.001-05:002021-03-10T20:02:14.043-06:00Chemo and Radiation Continue... And a Problem ArisesHello again everyone! I'm back! I apologize for the length of time between the posts. Nothing bad happened or anything, just have been exceptionally busy with a new grandson in our house along with our oldest daughter, our youngest staying the Summer here, visits from other family members from Arizona, family visits and functions here in town now that we are near Lea Ann's family again, and a few trips into Missouri, too. Not to mention my day job has been extremely busy as we are short-handed, so everyone is up to their ears. Life is definitely getting back to normal. I love it!<br />
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And now back to our journey...<br />
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Chemotherapy continues once a week. Every Monday morning we go in and I get hooked up. It takes three to four hours most times with all that is being done. That is typical. The people that work at the center are absolutely great. I could not have asked for better. The people getting the chemo with me are just as nice and very personable. Everyone smiles and talks and is very.... Real. That is the best word to describe them. Every one of us in that room, the patients and their caretakers and watchers, are sharing a very raw experience. Talking helps to pass the time and take the mind off the sickness. Honestly, at least for me, the talk tends to center around anything else. I would rather not talk about the cancer or anything related to it. I want to have small talk and chit-chat and joke around and smile and laugh. That seems to work for me, and others seem to fall into step with that, so I take it as a sign that we are having similar thoughts. Every afternoon, Monday through Friday, I have to come back to the same center for the radiation treatments. We wish that I could have gotten times loser together on Mondays, but schedules are schedules I suppose. We do tend to cheat and ask the nurses to ask the radiation side of the house if I can sneak in early for the therapies on those Mondays so we are not driving so much. It works maybe half the time. We'll take anything we can get.<br />
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One thing that we are finding is that, contrary to what we expect, I actually feel <i>better</i> after chemotherapy. We have no idea why. Neither does the chemo doctor or the nurses. They are chalking it up to each person responds in their own way. I am one of the lucky ones. I'm not getting sick, at least not yet, and I am not losing much hair, though I do notice quite a bit in the shower in the morning, but I am definitely not going bald. Lea Ann thinks that the reason is that when I get chemo, before they start the drugs, I get a large bag of hydrating saline and also a bolster of Magnesium. The day of chemo through about two days later, I tend to feel really good. Appetite is up, mood is better, energy is up, I even try harder at physical therapy and my exercises (when I do them). Come about Wednesday evening I start losing that steam and get tired quicker and run down. Appetite gets less and my moods get more erratic. This happens every week that I have chemo. Based on what I had heard and seen, I really am a lucky one in that regard.<br />
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Radiation is a daily 30 minute drive for a 10 minute procedure, then 30 minutes back home. I understand it is necessary, but it gets tiresome at times. We want to make sure nothing comes back so they are doing this to clean up anything that may have been left. I admit that I get a little down on myself during these sessions. To be honest it is over a pretty minor thing, too. I can't sit up on my own after the sessions. I lie on my back for the treatments, but I can't sit up from that position. I always need help. That bothers me a lot more than I want to admit. I mean I know that my stomach and back were both cut open and it will take a while for that type of mobility to come back, but I still think I should be able to do it.<br />
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The third Monday of chemo. I go in as usual, but they want to take blood for blood screening before chemo starts. This should not be a big deal. They can take the blood from the power port before starting to infuse the chemo drugs. It can all be done through the same single stick. I am starting to like this power port idea. They prep the port site, spray the cooling gas onto the sire to deaden it a bit so I don't feel the stick, then insert the port tubes. All the same as usual. The nurse leaves, then comes back with several vials to fill with blood for the tests they need. The connects the syringe to the port and starts to draw some blood. Nothing comes out. In fact, when she attempts to pull back on the plunger of the syringe, it will not move at all. She frowns and tries a few more times, then sighs. I ask if there is an issue. She says most likely she missed the port with the tap needle. That means she has to take it out, and I get another stick. Oh well. I can take another stick. The nurse says she is going to get the shift leader to try the next stick. That makes sense to me. Get the most experienced person to handle the possible problem issue. Seems to make sense to Lea Ann too. Soon the shift leader comes over with the longest tap needle they have. Its almost two inches long. That is a little intimidating, but the nurse puts me at ease. She preps the area and sticks me again. This time she tests the entry by injecting a bit of saline into the tube to make sure it is in and seated properly. It is. Now we'll try to get the blood drawn again. She sets up the hardware and the vials and tries the blood draw. Same issue. Nothing is coming out. Again the plunger in the syringe will not draw anything out. Nothing at all. The nurse frowns and tries again without luck. She tries infusing the saline again and it does take that in without any issue, but it will not draw no matter what they do. She mentions that in order to save time, they will draw the blood from my arm and she will ask about what would cause this issue. I agree and they take blood out of the crook of my elbow, then hook me up to the usual for the chemotherapy. After that, I actually forget about the blood draw issue. The rest of that week goes pretty much as usual, however I start noticing that my neck is getting sore and stiff and my right shoulder is starting to hurt. Especially in the mornings. I used to get that way from time to time, so I just thought I was sleeping in the wrong position and was getting stiff. After all, I was now having to sleep on my back all the time and also with blocks under the head of the bed so I was at a head up angle due to the surgery.<br />
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Week four of chemo. We go in at the usual time and do all the usual set up and everything. The nurse says they want to try to draw blood again. I suddenly remember the issue they had the week before and ask if they figured out what the problem was. She says they think it may have been clotted off and are hoping that it has cleared in the week since. They hook me up again and... same conclusion. Nothing will draw at all. They call in the doctor to look at it. She tries and gets the same result. Now Lea Ann and I are getting a little worried. The doctor takes us back into a private exam room and pokes and prods on the site, which was pretty uncomfortable, but needed. Her thinking is that the port has clotted off on the draw side. If that is the case they can't guarantee that the chemo is getting into my system properly, so she is suspending chemo today and sending me to have an ultrasound done on the and around the port. Now I am worried. They must have a worry about it too as I get an appointment that afternoon at a local imaging center.<br />
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Two hours before radiation, I go to the imaging center and get called back into the ultrasound room quickly. The ultrasonographer comes in and stops short when she sees me. Apparently she was expecting a female. I explain the situation and she starts the procedure. She small talks during the 20-minute procedure, then reviews her work. As she is looking at it, I casually ask if anything looks odd. I really don't expect a response that I would be able to understand, if I get one at all. The techs are good at saying they are not doctors. However, in this case, she actually tells me that I have several blood clots throughout my shoulder, upper arm, and most importantly, in the Jugular Artery. She will be sending her findings to the chemo doctor in a few minutes and I am to talk to her about it after my radiation therapy this afternoon. She can't tell me anything else because she is not a doctor. Now I am even more scared. Clots are one of the things they were very afraid of when I was hospitalized. Now I suddenly have several, and with one in the Jugular, I am in major danger. I leave the imaging center and tell Lea Ann what was found as we drive back to the cancer center. She is as scared as I am. All it takes is one of those clots to break off, and I could very well die.<br />
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After radiation, which was unusually quiet, we are escorted back into the chemo doctor's office. She explains that there are <i><u>four</u></i> good sized clots through my shoulder and neck. The stiffness and soreness I have been feeling were side effects of those clots. It is likely that the power port was set too deeply and my body clotted off all it could. I was told that I am a hyper blood clotter anyway, and chemo can make that even more so. She is canceling my chemo for today and for next week. She will be calling the surgeon to set up an appointment for me to have this port removed and another put in in the left side of my chest. She is also putting me on Warfarin pills to thin the blood as well as Lovenox shots that will need to be administered in my belly. These will thin my blood and hopefully help to erode these newly formed clots. The medications will start the day after the new port is put in. The surgery will be set up for tomorrow or the next day at the latest. Later on I will have to start going to a Coumadin Clinic to have my blood monitored for the thinner factors in it and to manage the medication, but that will be in a week or so after the replacement port is installed. In the mean time, no excess movements or exercising, stay relaxed and keep the blood pressure down. She is not expecting any issues with this, but then again, she was not expecting this to occur. She reminds us that every situation is different. She will have to surgeon's office call me with the time of the port replacement surgery.<br />
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The drive home is tense. There is not a lot to say. Lea Ann and I both know what a blood clot can do to a person, and that is now a very real possibility for me. When we get home we have to call the physical therapist and cancel the session and give him the reasons and findings. The home health nurse is informed as well. She explains the issue and possibilities to us, and suggests that I stay in my recliner as much as possible move around as little as possible. This situation could get very bad very quickly.<br />
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Now I am really scared.<br />
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Thank you for reading along and coming on our journey with us. Please check back for my next entry. I promise it will not be as long as the last gap!Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com6tag:blogger.com,1999:blog-2727385194202256143.post-27392032037055375422014-06-21T00:27:00.001-05:002021-03-10T20:02:54.257-06:00Getting the Power Port and Starting Chemo and RadiationBefore I start this entry, I wanted to let everyone know why it's so late. A little more than a week ago, our oldest daughter gave birth to our fourth grandchild, Cooper Andrew Brown. He was born about two weeks early and is a little small, but he is absolutely fine and so is his mommy. His mommy is small too. She was born 16 weeks early, just about 24 years ago... One of our sons down was here too with his year old son, Avery, so we had a crowd but in a very good way! I would like to thank those of you that wished us good luck and congratulations on the birth. We are quite blessed! And that is why this post is later than usual. I am sure you all understand.<br />
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Now, back to our journey...<br />
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March 4, 2013. Our youngest daughter's 14th birthday, but also the date that I am to get the power port installed under the skin in my chest and the start of chemo and radiation therapy. It's going to be a very busy day. It's also a day I am rather worried about. We have all heard how chemo and radiation affect people. The sickness, the loss of hair, the loss of taste buds, dehydration, weight loss... All things I do not look forward to. I do hold on to one fervent hope. When my father went through his chemotherapy for his colon/liver cancer, he did not lose his hair nor did he get sick much. He did however lose his taste buds. I remember him saying that everything he ate had no taste. It was like eating cardboard. He ended up with an NG (<u><b>n</b></u>aso<u><b>g</b></u>astric) tube to get food into his belly before we lost him. I have a J-tube for that, however it has not been used other than to be flushed with water twice a day since I left the hospital.<br />
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We wake up early as I have to be checked into the outpatient surgery clinic at the hospital no later than 6:00am for a 7:30am procedure to get the power port installed. Things go smoothly this morning. My blood pressure is up a little, but that is probably due to the fact that we've discussed before about me always hating going to the doctor. I also have a history of running a low grade fever that has, more than once, nearly torpedoed procedures in the past. The doctor's office had called the night before and told me to take one Tylenol and one Diazepam in the morning in an attempt to counteract that. It worked. If I am worked up before a doctor visit, that is something I can do to counter my body's attempt at rebellion. After getting dressed in loose fitting clothes and a shirt that buttoned down the front, and then getting all the oxygen tanks and all ready and hooked up, it is into the car and back to the hospital we go. When we arrive, we debate whether I should take the oxygen tank in with me. I say no since they will have oxygen there. Lea Ann says yes, because who knows how long I will have to wait and we did not bring my PulseOx monitor. She wins, as usual. We are one of the first people to get there but still end up sitting in the waiting room for almost 45 minutes before they call us back to the pre-op area.<br />
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The people there remember us. I'm not sure that is actually a good thing, but I do admit is it nice to know the people. There is a comfort level that comes with that that can calm a person a bit. Weighed and measured and temperature checked. Still losing weight. Lea Ann gives me a sidelong look at the weight, but I try to ignore it. I know I am losing weight. It comes with the territory. I do understand her worry though. I am worried about it as well. I just know I had the weight to lose. I really should find a less radical diet program, but it's too late for that now. Into the curtained off area, off with the clothes and on with the hospital gown. Lying on the gurney with the TV on the local morning news for some extra noise, I look over and smile at Lea Ann. We should be getting to be old hat at this by now. She smiles back and pats my hand then goes back to watching the TV, as do I. Soon the nurse is there to start the IV and I get the usual speech about what will happen and what I can expect and such. IV in place, I am getting saline to hydrate a bit. Hmmm... Traffic on the way into Phoenix is heavy and a lot of accidents. Glad I don't have to mess with any of that. Soon after, the doctor comes in with his assistant. They seem chipper and in good spirits. I like that. Might as well have the doctor being a good mood when he is cutting into you, right? He explains the procedure in detail. The instrument being placed under the skin in the upper right side of my chest is called a Power Port. He also hands Lea Ann a folder full of information on it that includes a card for my wallet and one of those rubber bracelets that you see a lot these days that says "Power Port" on it. This port will be placed in such a way that I will only need one stick to get the chemotherapy infused into my bloodstream and it can also be used to draw blood for tests and all. Do we have any questions or concerns? Lea Ann asks how long this procedure will take and how long I will have the port in. A good question. Doc says, and I quote, "The procedure this morning is 20 to 30 minutes. And as pertains to how long I will have the port inside his chest... As long as it is needed." I am really starting to hate these non-answer answers and I say so. He adds that this is something that he tends to drag his feet on removing in case it is needed later or anything. It does not hurt to leave it in, and he would rather leave it then take it out and put another in later, just to save the patient from more cuts and more anesthesia and all. OK, that is reasoning I can live with. I also mention that the chemotherapy people have requested that he keep the infusion tubes in the port when he puts it in because they are going to be using it as soon as I get there later this morning. I am scheduled for the start of chemo at 9:00am. Doc's assistant scribbles notes in a tablet and he nods, makes sure all of our questions are answered and then says he will see me down the hall in a little while. The anesthesiologist comes in and explains how things will work. They are going to use "the Michael Jackson drug" on me to sleep. Propofol is my friend. I have a lot of experience with it these last few months and have had zero issues with it. I'm comfortable with it and so is Lea Ann.<br />
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In and out of the procedure clean as a whistle. After waking up I take a peek at the site where the port is. It is pretty swollen, and has some stitches in it. With the tubes sticking out of it, to my still waking up mind, I think it looks like a octopus stick to my chest. With all the swelling, I am glad they decided to ask him to keep the tubes in. If they had to stick that now, it would be sorer than it already will be. We stay in recovery for about half an hour or 45 minutes, then I am allowed to get up and get dressed. We have to get over to the cancer center for chemo and radiation. I am told several times to be extra careful with the port, then they cover the tubes with a gauze pad for some extra protection. As per hospital policy, I am wheeled out to the curb and helped up and into the car. That makes me feel so old, but I do understand. The ride to the cancer center is about 15 minutes. Ironwood Cancer & Research Center in Mesa, AZ. The place I will see every week day for the next month and a half. We arrive and check in. Immediately I am taken back to the chemo room. It's a large room with a lot of recliners in it. About 2/3 of the recliners are filled with people of all sizes and shapes and ages. Most look to be the older generation, maybe 10 or 20 years older than me, however there are some that look younger too. Once again I am weighed and pressurized and temperature taken, then shown to a recliner. Lea Ann can come too and sit in the chair next to mine unless they are busy and need the space. We have also brought our tablets as a distraction while the chemo happens. After a few minutes a nurse comes up and pulls over a small cart and an IV pole. She says she will be my nurse for the day and asks if I have any questions. I do, after all it is my first chemo session and I have no idea what to expect. She explains that they will first hook me up through the power port and then put me on a bag of saline to hydrate me well. Once that is complete they will hang the chemotherapy medications. In my case that is Cisplatin and something she called 5FU. She says the infusion will likely take an hour and a half or maybe two hours. The entire chemo procedure usually takes two and a half to three for what I am taking. As to how I will react to the chemo she has no real idea. Each person is different so each reaction is different. I may get sick, I may not. I may have to use the restroom a lot. If I lose my hair it won't start just yet, so I shouldn't worry about that too much right now. She suggests that I just recline back, take a warm blanket and just relax and read or sleep. I KNOW I will not sleep, but I am a professional recliner sitter. After answering my questions, she hooks me up to some saline and lets it run. She will come back to check on me in a little while. So far its not too bad. To my left is Lea Ann and to her left is an older gentleman that has been quiet, but watching. He has a bright smile and says hello. Sadly, I cannot remember his name right now, but he has lost a good portion of his hair and has several bags hanging on his IV pole. He says he has been here for a while and still has quite a few visits left to go. He also says the people here are very good and we have nothing to worry about. Very nice and professional and personable. I nod at him and smile as I had also gotten that feeling in the short time we have been here. To my right is an empty chair then another man in the next chair. He looks closer to my age, and honestly doesn't look sick. He still has all his hair, his color is good too, but he is hooked up to a few IV bags and also has a fanny pack in his lap that another nurse is working on. We introduce ourselves and I find out that he only comes once every two weeks. The rest of the time he has this fanny pack that infuses the chemo for him over a 48 hour period after this chemo. He lives alone with his bird. We actually talk a bit of nerdy tech talk and that takes my mind off things for a time. It is starting to dawn on me that these people are very friendly and very willing to talk about things. This is good. Talking takes my mind off some of the worse thoughts. It is amazing what a shared experience can do to open up people to be able to talk easily. My saline drip runs out and the nurse hangs my chemo meds. The conversation has dwindled a bit, so Lea Ann hands me my tablet and she opens her Nook to read. The nurse stops over to check on us and mentions there are free drinks and snacks on a counter across the room. Water and protein drinks and crackers and cookies, even some fruit if we are so inclined. Lea Ann asks if I want anything and I am kind of thirsty so I ask her for a drink and maybe some peanut butter crackers. She returns with stuff for us both, but she asks before she eats hers to make sure it is not just for the patients. I smile at that. My wife is a really smart cookie and doesn't want to deprive anyone of anything. Its fine, she can have some too, so we both eat and drink a bit. These protein drinks are the pits though. the taste is bad enough and the aftertaste is worse... ICK. But I choke it down. It helps wash down the crackers which are good. One of my favorite snacks.<br />
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While infusion is happening we get a visit from a lady who volunteers for the American Cancer Society at this facility. She is very nice and asks if we have any questions or if we would like to have any extra reading material on cancer and what is available to the patients. Lea Ann does most of the talking here. For some reason I do not want to have ANYTHING to do with the cancer society or reading about it or support groups or whatever else. To this day I am still not sure why I was like that. Now I see how much help talking about these feelings and all does, but then... Nope. Not going to do it. Leave me alone thank you. The lady and Lea Ann talk for several minutes. She gives Lea Ann two Cancer Center tote bags that have a water bottle and some reading materials in them as well as a 6-pack of protein drinks. Even though I don't like them, they are a need and she can use them to make my shakes at home and such. She smiles at us both and thanks Lea Ann and leaves to talk to others. I hope I didn't hurt her feelings or anything, but I just did not want to talk to her.<br />
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After about an hour and 45 minutes, my IV bags are about done. The nurse comes over, stops the drips and starts to disconnect me. The port tubes are removed and now on my chest is a swollen area with some stitches and a little red hole in it where the tubes were inserted with the needle. She puts a dressing over it and tells lea Ann how to care for it over the next week as I will not be back in the chemo room for a week. I feel like I have one boob on the right side of my chest...<br />
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Now on to radiation. It's in the same building, just on the other side. I am not feeling any ill effects from the chemo and seem to actually feel better than I have in the last couple of weeks. Not sure why that is. Maybe it is adrenaline or something, who knows. We sign in and wait less than 30 second before they call us back. We go from the front waiting room into the radiation waiting room. This is where Lea Ann will have to stay as only the patients are allowed in the radiation rooms. That makes sense. The techs here are just as personable as the nurses and aides on the chemo side of the house. They come and get me to take me back and tell Lea Ann this first treatment will be longer than usual. They have to mark me and all for the radiation, make a mold for my head and neck to keep my body in the same position every time, then do the treatment. Should take 30 minutes or so. The rest of the time will be like 10 minutes for each session. I am taken into the radiation room and asked to take my shirt off. if I have anything metal on, please remove it. So off come the glasses and the wedding ring. I am asked my name and birth date, something they will do every time I am there. Then I have to lie on the radiation table as they read the doctor's notes and "mark" me. By that I mean, they use India ink to make small dots they will use to line up the radiation hardware so only the areas that need the radiation will get it. Three or four little black dots that they will use as guides. Hmmm... So cancer gives me another first. My first tattoos. Once I am marked up, I lie on the table and have to put my arms over my head. This is actually a little difficult because it messes with my breathing a bit and I cough some. I ask if that will be a problem and they say not unless I move a lot when I cough. I do my best to stay as still as I can. They raise the table and set the hardware where it needs to be, then tell me to relax and try to breathe normally and they leave the room. I can hear them talking to me over a speaker and they can hear me talking back... they also have some nice 80's style music in the background. A good addition. I enjoy that. As the hardware starts up it hums and thrums and rolls around the bed I am on. In fact I end up closing my eyes because watching all that hardware roll around me makes me dizzy and I do not want to get sick. The hardware circles me two or three times then stops and I feel the table dropping back down and the techs are back in the room they take the pillow that was molded to fit my head and neck and the hand holds I had above my head then ask if I can sit up. Not without help I say, so the larger guy take my hand and helps me sit up. A little too fast on that and I get dizzy and have to sit for a moment kinda wavering. He apologizes and asks if I want a nurse to come check on me. I decline and am able to stand and get my shirt on shortly thereafter. Just had to reset my internal bearings. They give me back my glasses and ring and suggest I do not wear them next time or ask Lea Ann to hold them. I am then ushered outside and sit in the hallway and they bring Lea Ann to me. We have to wait to see the radiation doc now. This will happen at least once a week and more if we have issues or questions. It does not take long before we are shown into the exam room and I get up on the table to sit. Lea Ann takes the extra chair. She asks how I am feeling. I tell her I feel actually pretty good, and that surprises me. She mentions that my color is the best it has been in a while. At that point the doctor comes in and shakes our hands and asks first if we have any questions. I say I don't have any idea what to ask. He understands that and precedes to explain the treatments that I will be getting every week day for the next six weeks. Side effects vary (of course, another non-answer answer). The most common things that happen are, the hair around the radiated area does not grow back or is very slow growing. I may start to feel a sore throat or a slight burning in the throat that will get better after a couple of hours. I may also get a metallic tinny taste in my mouth. He hands Lea Ann a sheet with a recipe for a mouth wash that will help with that if it is needed. He says thank you, says he will see us next week and excuses himself and we are free to go home too.<br />
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As we head out to the car to go home, I am actually feeling better than I have in quite a while. This makes no sense to me. How can a person feel better after chemo and radiation? I will have to ask about that one of these days if I think about it. I am actually a little hungry! Lea Ann asks if I want anything and I mention the hunger, so we stop at a Sonic (I know, fast food, but I like it!) and I get a small order of chicken nuggets and Lea Ann gives me her tater tots. We both munch all the way home. Lea Ann smiles at my eating... It makes her happy. The day didn't turn out as bad as I thought it might have, but I bet I sleep tonight...<br />
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See you all next post! Thanks for riding along!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com8tag:blogger.com,1999:blog-2727385194202256143.post-25384597445313239992014-05-31T23:12:00.004-05:002021-03-10T20:03:08.192-06:00New Worries as Post-Hospitalization Stuff BeginsAfter a few days of what will turn out to be the usual routine around our house, today is the day we have to go to follow-ups with the oncologist and the surgeon for outlining our next steps. I'm still not allowed to drive. All these pills would make me come up with a DUI if there was an issue or a ticket or, god forbid, a traffic accident. So I must continue to be a passenger. Still not quite used to it yet, but might as well <i>get</i> used to it. It will be a while before I'll be able to drive again. That sucks, but Lea Ann is an excellent driver and when she drives we are never late. Can't say that every time I drive. So, that's a plus.<br />
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Since both doctor's have offices in the pavilion connected to the hospital, we set them up for back-to-back times early in the morning. That way we only have to get out once and get them finished early in the day and have the rest of the rest of the day to relax other than the afternoon home health and physical therapy visits. I wake up a little earlier than usual. Ever since I was a baby, doctor's office visits have not settled well with me. Mom says that when I was a baby, as soon as we drove into the parking lot of the doctor's office I'd start squalling and would not stop until we left and got out of the lot again. Anyway, I go in and get ready trying not to wake up Lea Ann. She deserves a little extra sleep. I am able to shave, shower, and shine on my own this morning. That hasn't happened very often, so I'm slightly proud of myself. Weighing myself drops that pride a bit. Still losing weight. I'll write down the weight in the log after I get dressed and take all my pills and breathing treatments. Shorts and a t-shirt with sneakers are the look of the day, however they are looking pretty big on me these days. Last moves in the bedroom are putting on the oxygen, then grabbing the plastic shoe box that has all my medications in it. I slip quietly out of the bedroom. I will wake Lea Ann after I am done with all my morning treatments and meds. I grab a small glass of orange juice and sit in my recliner to take the many pills, then the COPD medication for the lung that is still partially un-inflated, then my blow-by breathing treatment using the nebulizer machine that was delivered yesterday. The nebulizer treatments take the longest. Maybe five or ten minutes. As I am taking the treatment, Lea Ann emerges from the bedroom to say hello and give a good morning kiss. As she puts together her usual morning coffee, she compliments me on doing all my morning stuff alone this morning, but adds that she is always there if I need her. I smile at her and say I know and thank her for the compliment and also the reminder. After she finishes her morning routine, which usually ends up being quite a bit shorter than mine, she takes a some time to sit out back in the early morning sun and relax with her coffee before we have to leave. It has started out to be a rather nice and uneventful morning.<br />
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After transferring to the mobile oxygen tank and the pull along cart, we are off to the follow-up visits. First stop is the oncologist office. She is the chemotherapy oncologist but is speaking for the radiation oncologist as well. She asks all the usual questions about how I am feeling, checks all the surgical sites, and listens to my heart and lungs. then she sits down and lays out the next steps for us. Since the surgeon took out 31 lymph nodes when he removed the partial esophagus and the upper portion of the stomach, they are suggesting what she called "mop up" therapies. Just to kill off any stray cells that may have been missed and do their best to make me as clean as possible. What this will include is six once a week chemotherapy treatments along with 30 radiation treatments, Monday through Friday during that same six week span. She has already talked to the surgeon and next week he will place a power port under the skin in my chest. That port will be used for infusing the chemotherapy and also can be used to draw blood for tests and stuff. This will keep me from having to be stuck every week for blood tests and the chemo, plus it is overall generally easier on the system. The surgeon will explain more about it in the later appointment. Lea Ann asks what kind of chemo I will be on and what the side effects may be. We are told I will be on what is called 5-Fluorouracil (called 5FU) and Cisplatin. They will give me a good charge up on hydration, then give the chemo in that order every week. As to side effects, there are many that are possible. Those include the usual that people know about... hair loss, nausea, and loss of taste buds and other fast growing cells so it could even affect my finger and toe nails, but there are others as well. Some of those include mouth sores, bruising or bleeding, blood clots, anemia, diarrhea, numbness or tinglings in the hands and/or feet, changes in how my kidneys, lungs, liver and even my heart might work. We just have to keep in mind that these are all <i><b>possible</b></i> side effects. Everyone reacts differently, so we will basically just have to wait and see. All that is a bit much to take in all at once. I feel numb already. I know before my father died, he had chemotherapy that was delivered via a pump that was placed under his skin and fed directly into his liver. He didn't lose his hair, only got a little sick, but he was anemic and lost his taste buds. I'm not looking forward to this. Just before we end the appointment, the oncologist asks us to tell the surgeon to make note that she wants him to leave in the infusion lines when he places the power port. It is now scheduled to be placed the same day I start chemo and that will keep me from having to endure another stick immediately after an out patient surgery and make it easier on the chemo nursing staff as well. Lea Ann makes note of that and we end the appointment. I am still feeling gut kicked. I had hoped that the chemo and radiation would not be needed. I understand the reasoning behind why we are doing it, but I am still bummed about it.<br />
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Next appointment is the surgeon. He is a nice enough guy, but as I have stated before, he is very blunt and to the point. He does all of the checks that the oncologist did, but pays much closer attention to the surgery sites and scars and pays special attention to the J-Tube site. it is still oozing quite a bit and when the dressings get changed it is bleeding each time. He looks it over, changes the dressing himself and adds some ointment to the dressing to help the site heal as well as to keep the dressing from sticking to it as bad to help keep it from bleeding. He also notes that it is getting some granulation tissue around the entry, but that is normal. It is the body's natural defense to being hurt, and since the tube should not be there, and the dressings keep making it bleed again, the granularity tissue is forming to protect the site. We just need to keep an eye on it and inform the home health nurse about the change in dressing it. Also make sure we flush The J-Tube with diluted water at least once a day, but he would prefer twice. The bed sore I had is almost completely healed as well. He mentions again how quickly I seem to heal. He orders up a few extra blood tests, and hands that order to Lea Ann. The blood drawing lab is just down in the lobby so we can hit it on the way out. He then asks if we have any questions or concerns. I am not talking much, but Lea Ann asks all the questions I would have. Like how long will it take to put the power port in and how long will it stay in? He reiterates that it is an out patient procedure and usually takes 30 to 45 minutes, plus recovery. We tell him of the oncologists request to keep the infusion port in after initial placement because I will be getting chemo that same day. He makes note of that in his tablet. He also says he tends to drag his feet when it comes to taking out the power ports and the J-Tube. He likes to make sure they will not be needed anymore before they are removed and if that entails keeping them in another month or two or however long, so be it. Better to be safe than sorry. Plus it puts less stress on the body than taking it out then having to put another in. Understandable. Some people have kept them in for a year or more. God I hope not. We ask him about side effects of the chemo and radiation. He says basically the same thing the oncologist did about the usual side effects and how every person reacts differently, even if they are in the same family. Everyone is different. It is starting to sound like a standard answer they are trained to say when asked that question. I am not one that likes getting "standard" answers. I'm a details guy. The "wait and see" attitude is hard for me to stomach, no pun intended. The power port will be put in the middle of the next week and chemo and radiation will start that day as well. The scheduling for all that will be handled by the clinic at the time I have my first sessions. Be at the hospital at 6:00am for the port insertion, then it will be straight over to the clinic to start chemo and radiation. Expect to get home late afternoon that day and don't make a lot of other plans for the day he says... Terrific... I just love hearing that. As he is leaving he says he is impressed in how I am doing physically and says the mental part will come around in time. He reiterates that this is the largest fight I have ever been in and I am holding up quite well. He is proud of me... and of Lea Ann too. We are troopers and he likes seeing that. We shake hands, he says call if I have any questions or concerns and leaves.<br />
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Down to the blood draw lab on the way out of the building. That is pretty much a non-issue as I used to give blood a lot when I was younger at the Red Cross blood drives. I'm not an easy stick though and it takes them usually two or three tries before they get a good vein. The report will be back to the doctor in a couple of days as none of them were requested stat, and there is a new test he has requested that is specific to blood clotting factors. They have not seen this one much yet and don't know for sure how long it would take. Maybe a week at the outside. I thank them and Lea Ann and I are out the door and on the dusty trail back to the house. She asks if I am hungry and want to stop for anything. I'm really not, but I say I could eat as I am sure she is hungry. We stop at a Jack-in-the-Box and she gets a quick burger fries and I get a 4 piece chicken nugget meal with a small fry. I eat maybe a nugget and a half and a few fries and drink about half my tea. I just do NOT feel like eating so I say I am full. Lea Ann gives me that look of understanding but I can also see she is worried about how much I am eating, rather not eating. I am sure she will be talking to the doctor about that next time. I may get put back on getting extra nourishment via the J-Tube. Again, I hope not but I also understand why if it is needed.<br />
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Off toward home we go. Home health and physical therapy await me later today. I am not looking forward to either. These doctor visits always seem to bum me out. When I get the bummed feeling, I just go deeper into my hole... I wonder if this will ever end.<br />
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Thanks for reading along! Please feel free to give this link to anyone you think may be able to use this information. I would love to continue to reach and help others understand what goes on inside the head of someone like myself that has or is going through this. It is not an easy or a fun time. With luck this will let them see they are not alone, they have support all around them, and they are not the first to maybe have some of the feelings they may be having. Thanks again, and see you all next post!Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com2tag:blogger.com,1999:blog-2727385194202256143.post-26154769653994112832014-05-27T01:08:00.003-05:002021-03-10T20:03:32.595-06:00The First Day of Real Physical Therapy<p dir=ltr>After a couple of days that were basically uneventful, the first day of real physical therapy is at hand. I admit, I am getting very comfy in my recliner with maybe a dog lying beside me in it. I'm quite comfortable and content sitting on my butt and watching TV and using my laptop. I'm home. Why should I have to be reminded more about my condition than I already am? I have to see the walker and the oxygen tubes and tanks and pump and the home health nurse here almost every day and daily or more checks of the dressings and the surgery sites and BP and weight and breathing treatments and the millions (it seems) of pills I have to take daily... even a few of the breathing therapies on those silly little things we brought home from the hospital, but not many.  I want to forget it all and just get back to normal. In my mind, the best <u>way</u> to do that is to watch TV and sit in my chair and do little to nothing. In the back of my mind I am actually noticing that the weight is still rolling off and that is because I am not wanting to eat. I'm just not hungry. Food has no appeal to me at all. At this rate I will be losing 7 to 10 pounds a week and I know that is not good, but I also know I was quite overweight... So I have it to lose. Or had. I'm also noticing my look in the bathroom mirror each morning. There is a large loss of weight that is already quite noticeable, but I'm also starting to notice the loss of a LOT of muscle... My build. Even my butt and legs, which I had been told were a couple of my better features. The "skinny and feeble" look is starting to settle in. I'm not liking that at all.</p>
<p dir=ltr>After the now typical morning routine, I sit in my throne recliner in the living room in front of the TV and await the coming of the physical therapist, and the home health nurse. I wonder who will come first. Doesn't matter who gets there first, it's just something I wonder about to amuse myself. If the therapist gets there first my BP will likely be messed up and maybe my oxygen saturation. Who knows? It doesn't take long to find out. Doorbell rings... Lea Ann answers and its the nurse. She is a nice young woman. Very personable. Very professional. I have no complaints about her. Lea Ann seems to like her too. They get along well and talk quite a bit in a chit-chat fashion while I go through the usual battery of checks. BP is the best it has been. Just a tiny bit above normal. Oxygen saturation is good. So good in fact that she decides to dial down the oxygen a bit. Fine with me, just as long as I tolerate it OK. Should not be a problem. She is still hearing some crackling when I take deep breaths, but she says they are seeming to get less and less. So see? I AM getting better. Why do all this extra stuff? Then I remember the vision of myself in the mirror. There is a war starting in my brain. The one side that says I am getting better doing just what I am doing now, versus the part that doesn't like what it sees in the mirror. The part that wants to get back what I have lost. The part that is the merest spark of what I used to be... of how I used to feel. Maybe, just maybe, the Brian that was here before this diagnosis and surgery is still inside and is just now waking up and starting to try to fight his way out. I notice that, but just file it away to maybe look at again later on. The "stay the current course" part of my brain is still far too strong to succumb to a single fleeting thought. The nurse finishes her stuff, I sign the paper, well actually I sign her iPad with a stylus thinking that this is rather cool. I am a geek when it comes to electronics and toys like that.  Before she leaves she says she is going to start coming every other day if we feel comfortable with that. Lea Ann asks me what I think, I say that's fine. She still wants the daily BP and weight checks logged and also maybe the oxygen saturation. Lea Ann agrees to that, as do I, then she bids us a farewell until the day after tomorrow.</p>
<p dir=ltr>About an hour later the physical therapist shows up. He does the same type of lead-in paperwork that the home health nurse does. In fact, he mentions that he is in contact with her quite a bit about me and how I am doing physically. He mentions the log Lea Ann has been keeping, so she shows it to him. He makes mention of the weight loss. There is a little flare of that spark in my brain again. Just for a second. He asks how I have been eating. I say I have been, but Lea Ann corrects me. I have been eating, but tiny bits if anything. Not even doing much with the protein shakes. He mentions that the protein is what is needed to keep the muscle mass up, along with working those muscles... which we will start doing today. He asks how I have been walking. I have to be honest and say that I have not been walking a lot, but when I have been I've not been using my walker. I just go slow and make sure I am near a wall or door or chair to help support me if I get light-headed, but to be honest that has not happened lately. He asks where my portable oxygen is, and Lea Ann brings it our of my office. He hooks up the shorter hoses and turns on the tank and we swap tubes. He also puts his own pulse/ox monitor on my finger. He will be paying close attention to the pulse as well as my oxygen saturation levels as we walk. That is all we are going to do today. We are going to walk out front. Whatever I feel comfortable with. This will be used as my first benchmark or as a baseline. He will be beside me all the way. I have nothing to worry about when it comes to falling or passing out or anything. Passing out? Me? Never.. but I do admit that I've worried about that from time to time recently. He's a big enough guy that he could keep me from cracking my head open on the concrete or where ever I happened to fall if I did. He tells me to stand up, and I do. Apparently too fast. Have you ever gotten up too fast or maybe yawned while standing and had your vision start to dim and get shaky in the legs? That is exactly what happened. He noticed it right away and told me to sit back down. I do and the episode subsides. I look at him and smile a little sheepishly. Maybe I am not quite as strong or as far along as I thought. He says that it's OK, just slide up and sit on the edge of the chair for a minute and then stand slowly. As I do, he helps me up. No vision darkening this time. Hopefully it was a one time thing. We are going to start by walking down the hallway and back, then out back on the patio like we did last time he was here. We do that without much issue, but I do note that I am already breathing a bit harder and coughing occasionally. How could I be this weak after only maybe a month and surgery? I ask him that. He says, "Because your body was insulted and cut on and sewed back together and you are not eating or drinking much and you need to get some strength and stamina and breath back. Not to mention you are sill having lung issues. This is not an immediate correction. This will take time and work. That's why I am here." He lets me sit for a minute and catch my breath and also grab by rescue inhaler, just in case I need it. I get back up and head for and out the front door. I tell Lea Ann I will be back in a few minutes, and she says I better be and smiles.  I smile back and walk out, pulling my little oxygen cart behind me. The sidewalk out to the driveway is flat and easily navigated. It is straight then a left turn and you get to the driveway. By the time I get to the turn, maybe 30 feet, I an starting to breathe hard and cough a bit and my oxygen saturation is dropping.  92... 91... 89. The therapist tells me to stop, try to relax and take puff off the rescue inhaler and take a few deep breaths as he increases my oxygen. As I stand there, the saturation goes back up into the mid-90's again. What the hell? I can't even walk around the house and to the driveway without having issues? How pathetic am I? The therapist seems to know what I am thinking, tries to pump me up a bit and asks if I am ready to start again. The athlete part of me seems to take over and says "Let's go." That part of me actually says it out loud. He smiles, claps me on the shoulder and says that is what he likes to hear, and off we go again. Once we get to the driveway, he checks my saturation level and pulse again. They are OK. Our driveway slopes down to the sidewalk and curb. It's not very steep or anything, but it is a slope. The therapist says that we will go to the curb, the turn around and go back into the house. I nod and start moving. By now my legs are shaking a bit and I am shuffling more than walking. Quite a bit more than I would like to admit. Getting to the curb isn't hard. Gravity is my friend. Well... I thought it was until we turned and had to go back up the driveway. I am amazed at how hard it actually is to get up a slope that small. I am shuffling and huffing and puffing by the time we reach the sidewalk back to the door. So much so I go into a coughing fit and have to stop again. The therapist is very patient and as soon as the coughs subside I start up again, without his having to prompt me. We walk the rest of the way back into the house and I basically collapse into my chair, again coughing and huffing and puffing. My legs are trembling as I sit and I am starting to sweat. The therapist says I did well for my first time. Next time we will go further. Oh joy... but at least I got through it today. I am a little down on myself because of how many times I had to stop and how weak I really seem to have become. Maybe this therapy will end up being a good thing. That is if I am able to live through it, and I tell the therapist that. He laughs and says he has no plans on seeing me die anytime soon, but he will help me get some strength and stamina back. All I have to do is trust him. Honestly, I find myself actually doing just that. No real idea why as I have only met this kids twice, but he seems to know his stuff and also seems to care. My instincts tell me I can trust him, and I trust my instincts therefore I suppose I trust him.</p>
<p dir=ltr>He finishes his paperwork, he and Lea Ann switch me back over to the in home O2 pump and shut off the tanks so they can be used more when I am out. That time will come within the next week or so when I go see all my doctors for my first post-hospital checks. The therapist stands up, shakes my hand, tells me not to be too hard on myself and that it will get better, and that he will see me day after tomorrow. We are going to do PT every other day to start. He reminds me that in order to get stronger I need to eat and drink with an emphasis on higher protein. He looks over at Lea Ann and winks and smiles letting her know he has her back on that issue, and she sees him to the door. The step outside to talk for a moment, then he leaves. She comes back in and asks me if I need anything. I actually <i>ask</i> for a protein shake and to turn on the ceiling fan. I expect both will help cool me off. My legs are starting to calm down and the coughs have subsided... I think to myself, "This is going to be harder than I thought..."</p>
<p dir=ltr>Thanks for reading along and I hope you come back for the next post!</p>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4tag:blogger.com,1999:blog-2727385194202256143.post-23515464221436608842014-05-18T20:22:00.006-05:002021-03-10T20:03:47.850-06:00Beginning Physical Therapy and all that EntailsThe first night at home was uneventful, but that is exactly what I wanted. No interruptions, in my own bed, and next to my wife. This beats a room and a bed in a hospital every day of the week and twice on Sunday. Even with having to wear that basically antique CPAP headgear when I am sleeping, at least I am home.<br />
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Waking up after my first night at home was almost surreal. Like the last three weeks had not happened. In that sleepy twilight right after a person wakes up... In that small period of time that the mind can't easily pick out reality from the sleepy subconscious place where our dreams reside... My mind actually is able to forget the recent events and the physical issues I have endured. I am... me again. For just a very short time while my mind clears and starts the differentiation between the real and the dreams... I am me. The old me. The me before cancer. Damn, this feels good. Maybe I dreamed all this and now I am finally waking up. Slowly my eyes open. Lea Ann is still asleep next to me. I understand why some people enjoy watching others sleep. So beautiful and peaceful. Looking around the room, the way the light is filtering through the curtains and mini-blinds lets me know it is still very early in the morning. Not long after sunrise actually. I can hear the music from the radio that we always play at night. It helps to drown out the sounds that tend to wake us up, like my CPAP machine, or the the dogs of the man that lives behind us, or the sirens that travel up and down the major road we don't live that far from. It's our alternative to white noise. Plus it has a beat and you can dance to it. I also slowly start to notice a strange new sound. A deep thrumming hum. That's odd. Anyway, as I continue the early morning wake up, the first morning yawn comes on, and what usually accompanies that? A good stretch. So I do... and reality lands on my head, or rather on my abdomen which in turn quickly shakes up my brain. The stretch causes me to arch my back crunches the incision there and stretches out the incision on the stomach. Not to mention that the yawn is not a good one as my breathing still is not right and I can't take a full intake of breath. Reality is back... Dammit.<br />
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Time to get up because Mother Nature has decided that it has been too long since I have been in the bathroom. I am currently unable to sit up the usual way in the bed, in the sit-up style as most people do because my stomach is far from ready for that, but I have to get up. Rolling slightly onto my left side, I put my elbow on the edge of the bed with my hand up in the air. With my right hand, I grab the left and try pressing down, using it as a crutch and as a lever too. Slowly I am able to get into a sitting position, but my damned arms are both shaking like hell by the time I am. Luckily the mattress we have is one of those that doesn't transfer movement, so Lea Ann is able to stay asleep. The walker is folded up and leaning against the wall next to the archway that goes into the bathroom. I reach over and grab it, pulling it over and unfolding it, albeit quietly. Pulling it in front of me, I use it to stand up slowly. Legs still are not quite right and not nearly as strong, but they are working. I have to stand for a few seconds to gain my balance and make sure that I don't get light headed. If I am going to fall, I want it to be on the bed. Soon enough the feeling of stability comes and I shuffle into the restroom to get a little relief.<br />
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Later that morning I eat. Not a lot. Just a single packet of oatmeal. Lea Ann attempts to get to to drink a protein shake, but I back away from it after a few sips as usual. I hate that aftertaste, no matter how much Lea Ann tries to cover it by adding chocolate syrup or fruit or whatever else... Someday maybe I will get used to it, but not today. After bringing me the shake, Lea Ann goes into the bedroom comes back with the BP cuff, the pulse-ox monitor and the log for my stats. She used to be a CNA several years back in Illinois before we met and knows how to take BP and all. She is taking this logging of BP, oxygen saturation and weight very seriously. BP is down for me but still a bit higher than usual. it runs high in our family as a rule. When I was 18 it was as high as 165/100. Its not that high today, but still above average. Oxygen levels are in the mid to high 90's, which is very good, but I do still have the oxygen on. My weight this morning was right around 240. I have lost 120 pounds since originally seeing the doctor about the problems eating and swallowing about 5 months ago. I'm not too worried about it, but Lea Ann seems to be. I'm dropping weight like a bad habit. She has even mentioned that she wonders if I may be developing an eating disorder. If it keeps up I am sure she will bring it up to the home health nurse and the doctor at one of the myriad appointments in the near future. I just need to find a less radical diet plan. She is also worried because I am still not walking much and talking even less. Not to mention I am still not using the breathing therapy tools they sent me home with. And she is right in all regards, I am just not seeing it. I just want to sit on my butt in my recliner and watch TV. I'll get better over time. Little did I remember that the physical therapist is coming today. That means so much for sitting on my butt. At least for a while after the therapist gets here.<br />
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Later that morning the physical therapist arrives. A big muscular kid. Taller than me and maybe half my age. He's happy to meet Lea Ann and I and asks if I am ready to get some strength and stamina back. I do have to admit that my lack of strength and loss of the size I see in the mirror in my legs and calves and shoulders is a worry to me. As I have said before, I was rather proud how strong I thought I was. Now I can hardly sit up in bed or walk on my own. Now here comes kid telling me what to do to get better physically... This is going to be a tough thing to handle for my ego. He takes 10 or 15 minutes to fill out yet another set of paper work. Please sign here and here and here and initial here... Then he grabs his own pulse-ox monitor out of his bag and walks over to put it on my finger. He then asks me if I can stand for him. I am able to stand, after try or two and with a little support from him. He has my walker and sets it in front of me. I lean heavily on it. The oxygen saturation on the monitor is right around 90, maybe a a bit less. He asks if I am OK and if I need to sit down. A am a little light-headed, so I say yes and sit heavily. He adjusts my oxygen a bit higher and then helps me up again. This time he says we are going to take a little stroll around the house. We walk around the living room, up and down the hall, and even out onto the patio in the back yard. Less than half way through I am huffing and puffing and have to stop and rest for a moment. This happens twice more. This is really getting into my head. I am not strong enough to do anything. Great. This feeds my depression... When I get back to the recliner I sit heavily again and have to allow my head to clear as I was getting light-headed again. He praises me for trying and keeping it up to the end, but the ex-athlete part of me says I didn't do anything and that I should be ashamed... and I am. He says he has been cleared to come three times a week and the next visit will be day after tomorrow. The number of weekly visits will go down as I recuperate and get stronger. Three times a week is a good bit of work, and I will be walking and trying to get away from the walker AND the oxygen. I can live with that. Those two things make me feel so OLD... As the therapist and I say our goodbyes and shake hands, he and Lea Ann talk a bit, but they are out of my hearing range. At that point in time I had no idea what they were talking about, but looking back I can assume that she was asking what he might think would motivate me to start moving and doing things for myself. As I sit in the recliner, my legs are starting to get sore already and they are still shaking from the walking. This is not going to be fun. About the time the physical therapist leaves, the home health nurse shows up. They confer outside with Lea Ann briefly, then she comes in and does her checks on me... BP, oxygen saturation, she lowers the O2 on the oxygen lines too because the physical therapist had forgotten to, temperature, checked all the incision sites and the dressings, and listened to my breathing. This will be the usual for the next several weeks, at least until I am finished with chemotherapy and radiation. She is also going to help us keep track of the appointments we have and what is said and found out there. She is very good. Despite my mood, I find myself liking her and how she does things, and it seems Lea Ann does as well. It is always good to like who you have to work with, and in this case, we do. Gotta love the caregivers, and that includes Lea Ann, who is catching the brunt of my crappy moods. That is so not fair to her. I see that now, but then I didn't. Then I was still too deep into my own head and pity party to see it. I am such a lucky man to have her by my side. She is literally the better and stronger half of me. She is the lifesaver I hang on to when things are getting too overwhelming. She doesn't know it, and I never said it then, but she was, is and always will be. I have since told her that, but at the time I wonder how the hell she put up with me.<br />
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The rest of the next few days are uneventful and pretty much carbon copies of the first day back. I am not looking forward to the physical therapy that is to come as it will make me see how weak and frail I truly have become, but it is a need to make me get stronger too... I am very conflicted, and I am sure it shows.<br />
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Thank you all for reading along and I will see you again next post!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4tag:blogger.com,1999:blog-2727385194202256143.post-92152919669449783762014-05-06T02:22:00.002-05:002021-03-10T20:04:07.174-06:00Settling back in at home, but slowlyHome. It never looked so good... It never smelled so good... It never sounded so good... It never <i><u>everything</u></i> so good. I am quite happy to be here, I just wish it showed more. I get to sit in <i>my</i> recliner, watch <i>my</i> TV, use <i>my</i> computer, talk on <i>my</i> cell phone, sleep in <i>my</i> bed next to <i>my</i> wife, be around <i>my</i> kids and <i>my</i> dogs... so why the hell am I still so down and deep into my own head? That is actually an easy question to answer. Yes, I am home and in the most familiar and comfortable surroundings I can be, but I am still not me. I am a shell of me. I feel like I've been gutted like a fish. To walk I have to use a walker. I can't stand for long without getting winded and dizzy and shaky. I have to take two different breathing treatments daily plus there is a rescue inhaler for emergencies. I'm taking a box full of pills every day. There is a cart with a little green oxygen tank that I have to pull around everyplace I go, It's connected to me by a hose that is shoved up my nose (literally the line from the Mid-70's TV show "Welcome Back, Kotter" where they said, "Up your nose with a rubber hose"). There is a J-Tube sticking out of my stomach just to the left of the belly button that has to be flushed with water every day in case I have to get fed through it. I not supposed to sleep without a CPAP machine because of sleep apnea, and the headgear for it is so old it makes me feel like a rhinoceros. Not to mention it's quite literally held together with rubber bands and tape. I've lost about 100 pounds in the last four or five months. That started about six or eight weeks before I was diagnosed in December. I don't feel like eating or drinking much of anything still. There is still the bed sore on my tailbone that has to have the dressing changed once or twice a day. I can't see or reach it to properly change it, so Lea Ann has to do it for me. Most of my clothes don't fit anymore... I am in squarely on the pity pot, and I'm stuck there with rubber cement. What happens when you sit on the pot too long? Hemorrhoids. I fully expect some of those to crop up in the near future, too. It would just be par for the course.<br />
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We got home fairly early in the morning, around 10:00 or 11:00 am. There is an appointment for the home health nurse to visit and start her daily routine early this afternoon. The medical equipment people will be coming to set up an oxygen pump today, too. That way I won't use up the portable oxygen tanks nearly as fast. They will be used for transportation away from home only. When I am at the house, I will be on the O2 pump. It will also have an attachment to put oxygen into the CPAP while I am sleeping. There is also a chance the physical therapist may call or come by today or tomorrow, based on what the home health nurse recommends.<br />
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One of the first things I want to do is shower. Question is, how will I do that? Standing for that length of time would be difficult, plus I remember when my father had his cancer surgery. After he had gotten home, he took a shower and the warm water and cool air made his blood pressure drop and he passed out in the shower. Scared the hell out of him, and with good cause. I'd rather not have that happen to me. I tell Lea Ann about it and she comes up with a good idea. We have one of those formed resin plastic chairs out on the back patio. She is going to bring it in and put it in the shower stall in our bathroom. It fits very well and our shower has one of those shower head attachments that has the hose so that you can take it down off the wall and use it by hand. So I can sit in the chair and shower myself. At least I can do something for myself. Lea Ann helps me take off the bed sore dressing then stays nearby in case I need her or something goes amiss while I am showering. No issues, but it seemed like I was in there forever plus 3 days. Getting out was a bit of a chore. The chair was a little lower than I was used to, so I had to use my legs more. Hanging on to the shower door would be a bad idea as it is glass. There are no other handles for me to grab, so I ask Lea Ann to help me up and she obliges without any question. I'm now out o the shower and shivering my ass off, but standing to dry myself is going to cause the same issue as standing in the shower, plus when I try to dry my hair, that will just make me dizzier. Another good idea from Lea Ann coming. She places a towel over the edge of the bathtub and tells me to sit there. It is near the plug for the hair drier too, and its right next to the radio which is blaring out my favorite classic rock music station. She is one smart cookie. I sit down and dry off the best I can. She dries off my back and takes it easy around the bed sore. I take the hair drier and dry my hair, that actually makes me tired and I have to stop two or three times to let my arm rest. Jeez... But I want to finish it, and Lea Ann can tell, so she lets me. I'm now all dried off and hair is combed. Lea Ann puts a fresh dressing on the bed sore and I grab a pair of sleep pants and a t-shirt, my usual wardrobe for several weeks to come.<br />
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Moving out into the living room, I sit in my favorite spot, my recliner, park the oxygen cart next to the arm of the chair and make sure the hose is out of everyone's way, then kick the foot out and lie back. This feels good. TV is on, and I have access to the DVD player too and our slew of movies and TV shows on DVD. Our dogs want to get up in my lap as they used to always do, but I am afraid to let them up right now. Afraid it might hurt. So I tell them no and the sit at the foot of my chair and just stare at me... KC, our Jack Russel, is actually sitting up begging to getup into the chair with me. KC was given to me by our sons as a Christmas gift in 2006, and he is spoiled beyond repair. Sorry buddy. Right now there is no way I am going to let you up here. Maybe in a few days. Lea Ann is watching and smiling. She tells me that while I was gone, all the dogs jumped up and laid on the seat of the chair, and Max, our Miniature Pinscher, hopped up and slept on the back of the head of the chair. No one else even tried to sit there. I suppose that is a good sign. Or they are all afraid to sit in my chair. Hopefully I am not that scary. I start to zone out and soon take a little power nap. Not very long but long enough to give a little refreshment. When I wake up, I hear a racket in the kitchen and soon Lea Ann is bringing me a protein shake. Ice cream, Ensure, a little milk, powered milk for the extra protein, and Hershey's chocolate syrup. I thank her and take a few sips. This is not my kind of shake... It has the Ensure aftertaste that we all love so much. Ick. I drink maybe a third or half of it then set it off to the side. There it will sit until it gets warm and Lea Ann takes it away. I still don't want anything to eat. I am starting to think that hospital food killed my senses of taste and smell as pertains to food. I can still smell that hospital food. and we are a 25 minute drive away. Long distance mind control via bad food. Must be some hidden diet thing for those of us that were overweight.<br />
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A little bit later on, the home health nurse arrives. Younger lady, very pleasant. She sits down on the couch across the living room and gets out her equipment and her computer tablet and her notes. After the introductions we get right down to business. That works for me. I am home now. The quicker we can get this done the better. I ask, "Why do I need this?" Because I am still recuperating and they have to monitor me for medical records and for the doctors. Fine. She asks me about my background and family history, allergies, previous surgeries, etc. Am I up to date on all my shots? I suppose so... really have no idea. She makes note of that and says I may be getting a few shots in the near future if they deem them necessary. Oh joy. Can we have any more fun? The nurse asks Lea Ann some questions about my surgery and recovery in ICU and on the floor. After all that is noted, the nurse comes over and starts to check me over. She does it while I am sitting in the recliner, so I can't really complain. And she is nice, so I play nice too. She checks the usual. Temperature, pulse, blood pressure, oxygen saturation by using that little thing that fits on your finger like a clothes pin, she listens to me breathe, checks the dressings I have in various places... Obviously the incision sites, the one on the bed sore, and where the drains were in my sides, and the J-Tube site... All look good. She goes back to her notes and writes it all down. I ask her why she writes it instead of entering it directly on the tablet. She says this way she can make notes her way, then transfer them into the system in the way the medical staff wants. That way they both understand better. Makes sense to me. She reminds me to not miss ANY of my medications and asks Lea Ann to help me remember. I know she will. I will do my best to not forget. Besides, this recovery and sickness is about all that is on my mind most of the time. How can I forget? She also wants Lea Ann to pick up a pulse/ox monitor. a blood pressure cuff, and a scale for me. In their talking, the nurse found out that Lea Ann used to be a CNA and knows how to take BP and use the pulse/ox monitors. She would like for Lea Ann to take all my vitals every morning, including my weight, and put them in a log so she can use that as a good baseline and also check our numbers against hers. It will be a good baseline. Lea Ann has to go to Walgreen to get some prescriptions for me anyway, so she will pick that stuff up while there. The last thing she has to do is give me a shot of heparin to help keep the possibility of clots down. She pulls out the needle and I get a shot in my belly. Luckily that part of the stomach is still numb, so I don't feel anything at all. As she is packing up she says she will be here every day this week and maybe next, then it will start to slack off. Like every other day, then every third, etc. Until I am well enough that they can discharge me from home health. She is also going to call and ask the physical therapist to come over tomorrow and get things set up to get me back on track as pertains to getting some strength and stamina back. She says she will see us both tomorrow, I apologize for not getting up to see her out, but Lea Ann walks her to the door.<br />
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A little while later, another knock at the door. Home medical equipment is here to set up the oxygen pump and all the tubing and the connection to the CPAP. He is shown in and shown the bedroom where the pump will reside. He brings in two or three boxes and three more of the green oxygen tanks. The pump is a big white plastic looking box on wheels. As he is taking it out of the box, I ask if I have to pull that thing around with me. He says no, it has to be plugged into the wall outlet, so he will give me enough hose to go anyplace in the house I want. I just have to be careful with the air hoses and remind everyone in the house to not trip. He laughs and says otherwise I might get whiplash from getting the hose stepped on or tripped over. He gets it all hooked up and then shows us (really mainly Lea Ann) how to adjust the flow, how the hoses are connected and how the CPAP is connected too. Then he tests it on me as I sit in the recliner. No issues at all. Then he talks all over the house with the hose to make sure I have enough slack and then adds like 25 or 30 feet to it, just to make sure I'll have enough. He and Lea Ann wind up all the excess hose and put it by the pump so it will be available and not get snagged if I need it. The then goes over how the portable tanks work and how to use them, again talking to both of us, but more to Lea Ann. When ever the tanks get empty, we need to call them or tell the home health nurse and they will get picked up and replaced. This guy also brought me another walker. Not sure why, but I have to stand up and get it set to the right height for me and all. After that, he bids us a farewell and says to call if we need anything or have questions. I sit down heavily and lie back, stretching out. I am suddenly very tired. We've done a lot on my first day home and it's not even dinner time yet. It doesn't take long for me to fall asleep...<br />
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Thank you for joining me in this journey. Please come back for the next post!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com10tag:blogger.com,1999:blog-2727385194202256143.post-6558263604281491172014-04-28T23:41:00.001-05:002021-03-10T20:04:23.542-06:00Going HomeI have always taken pride in myself when it came to being physically strong. By no means was I a body builder or anything near the Arnold Schwarzenegger or Lou Ferrigno type, but I always took pride and believed that I was a strong man. I would be there to keep watch over those with me and would be able to help protect them. When I was actually in shape back in high school, and even when I was very over weight later in life... Hell, call it what it is, I was fat, but always felt I could still protect those around me. But now... Not so much. Now I can't walk much on my own and not without a walker. I walk leaning forward and bent over. The medical staff at the hospital called that "guarding." I was guarding my incision in my belly. Though I could not quite figure why I guarded my belly but not my back because both were opened during surgery. I never asked why, but I figure it is because I could see the belly incision. The one in the back I could not see, so out of sight, out of mind I suppose. I now also have to pull around this little cart that has a green oxygen tank on it that is attached to me via the tubes and nose tabs. The nurse is not allowed to let me walk down on my own, no matter how much I may have wanted to (which actually wasn't all that much to be honest). I doubt I would have made it very far anyhow. Even standing was draining. Also being sent home with me is a collapsible walker. A walker...The one piece of medical equipment that I always used to make jokes about. Saying that when I got old I would have to always go get my walker. Well guess what? NOW I have one with my name on it. I guess this means I am old. Old and worn out and useless at 50. Complete with a walker and an oxygen tank and not being able to stand up straight without being uncomfortable. Even my clothes are already hanging off me, regardless of the fact that it is a pair of sweat pants and a t-shirt. I should be glad. I'm going home to my own bed and lying next to my beautiful wife and our kids and our dogs... but I'm not. At least not as much as I should be. I mean I AM glad, but I'm ashamed. I am not me. I am a shell of me. Who would want to be with me now? I've been gutted like a fish. I will literally have a shoe box full of medications to take every day. Pills, liquids and breathing treatments on top of the constant oxygen and the CPAP for the sleep apnea. *I* don't want to be with me. Depression is setting in hard. To Lea Ann's credit, she is doing her best to make the day happy and bouncy keep my mood up. I'm trying to play along, but I doubt I am doing a very good job.<br />
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Rolling down to the lobby of the hospital while Lea Ann goes ahead to get the car, I stay basically quiet which is not my usual M.O. I'm usually joking and talking, but not right now. Just not in the mood. We get to the ground floor and sit just inside the sliding door waiting for Lea Ann to drive up in our car. Once she arrives, we go outside and load the back seat up with all my new stuff. Time to get in the car. I try to stand up and my legs are shaking so badly I am afraid I won't be able to do it, but I will myself to it. I mean, come on! It's only standing for crying out loud. I walk slowly over to the car and start to get in, but I can't get in like a normal person does. I have to stop and turn my back to the car, then bend over and put my butt in first, sit down, then rotate around to slide my legs in. God do I feel old. Who has to get in a car like this? Once I get settled and get the seat belt on, they put the little oxygen cart next to my legs and the handle kind of digs into my side to remind me its there. The nurse bids me a farewell and wishes me good luck. I tell her thank you and attempt a smile, again not sure how convincing it was. Another issue running through my head is driving. Ever since ever I have been one of those people that always wants to be the driver. I don't like being the passenger. I want to be in control, but for quite some time into the future I won't be able to. I trust Lea Ann. I trust her to the moon and back. She is a great driver and I know she can take care of me and keep me safe, but *I* am the one that should be doing that. I need to heal FAST and get back to normal if at all possible. I make a small joke about not being the one driving and Lea Ann takes it in stride and jokes back, showing my that pretty smile and her laugh that makes me smile. And it works again. Its like a magic bullet straight to the heart. My mood lightens a bit as we pull away from the hospital. I am<i> actually </i>going home. There were times over the last 19 days when I wondered if I would ever see that place again,but here I am driving home with the love of my life, who somehow is sticking by my side. I decide that maybe, just maybe I am just a little lucky. I know I am far from out of the woods, but I have a great support in my wife and my family and my friends. It was kind of like seeing a candle flicker in the fog-filled distance. Just enough to get me moving a little. The candle light being her, and the fog being the depression that is all around. It is human nature to move toward the light. But it was still far away in my mind. The fog was still very thick and could hide that flicker still, too. There is a titanic battle going on in my mind. The part that wants to hold on to the anger and depression and hurt vs. the part that wants to be happy I am going home and that I am still alive after all. This battle will be waged for quite some time to come. Sadly.<br />
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It is a sunny day, as usual in Arizona. Maybe a bit on the cooler side for there as it was mid-February. I had donned a jacket when we were leaving, just to get that extra warmth. The music is playing in the car. Music is my sanctuary. Always has been. I can't play any instruments or anything like that, but I can listen the hell out of a song, and I do on a regular basis. Lea Ann says she knows when I am having a hard time because my music increases as the hard time increases. She is very right. I retreat into the music, and I have been listening to a lot of it while recuperating in the hospital. Put those ear buds in, turn up the volume and close my eyes and get lost in the music and usually fall asleep. That is where I escape the most. She knows me very well. I notice a lot more around us from the passenger side of the car. The trees, the sky and clouds, the birds, the people, the landscape... It's amazing what you actually don't see when you are driving. But I have to ask, is it because I just didn't notice it before, or is it because I am paying more attention now because of all that has been happening? Maybe a little of both. It is nice to notice more about your surroundings and appreciate them more. The saying is right, you don't know what you have until it is gone. In my case it wasn't gone, but it could have been. That forces a new perspective. I'm actually getting a little more excited about getting home now. Maybe even smiling a little. Not sure. Maybe I think I am but I am really not. Who knows? The ride is 25 minutes from the hospital door to our front door. As we pull into the driveway and a certain amount of that weight lifts from my shoulders. We are home. No one was trying to fool me or anything. We are HOME. This feels good. Lea Ann gets out and pulls my walker out of the back seat and opens it up for me then opens my door. I try once to get up and can't get enough of my feet under me to stand up. She offers her hand and helps get me right up.She tells me to start walking to the front door and she will be right behind me with the oxygen cart and to make sure I don't fall. We go in the house and I stop just inside the door for a moment to look around. Home. Its just how I remember it, just several new plants and cards around from the people that sent them while I was in the hospital. This is what I want. This is where I want to be. Home with Lea Ann and the kids and our grand daughter and our dogs. All the familiar people and sights and sounds and smells. Home...<br />
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Thanks for reading and please make it a point to check back for new entries!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com8tag:blogger.com,1999:blog-2727385194202256143.post-5488564118143758092014-04-22T23:10:00.003-05:002021-03-10T20:04:46.248-06:00Back to the Floor, then Out the DoorFirst off, I would like to apologize for the length of time between posts. We had a bunch of things go on in the family and then had Easter weekend too. I just ran out of time. Nothing bad happened, but family always comes first! I am sure you all understand. :) Put over 2300 miles on the car in the last week alone...<br />
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So... A few rather uneventful days back in ICU. We are going through the daily motions... Morning rounds, breathing treatments, a few walks... and even starting to eat some solid foods again. Actually more like semi-solid, and the jury is still out on calling hospital food <i>real</i> food. It seemed to always taste and smell the same. ALL of it. Even the Jell-O. It may be because I really am still not interested in eating, but it may be that all hospital food IS that bad. After a few days the decision is made to send me back up to the floor.There is nothing really keeping me in ICU now since my saturation issues have been taken care of and everything else is looking pretty good. No real reason to stay, so on the morning of about the 17th day post-surgery I get moved back up to the floor. I now only have an oxygen line some of the time and one IV and that is locked off and only used sometimes. I'm now able to get up on my own and go to the restroom and even shower. Well kind of shower. It is in a shower with a place for me to sit. There is that hand-held shower head action going on, which I happen to highly suggest to everyone. Don't get me wrong, the getting up was still not easy and I had to move very slowly and such small steps. There is very little power or strength there. Mentally I am still not here. Very deep into my own head and not willing to do a whole lot, but at least I will be being released soon. Ad that is released to go home. They have tried again to talk me into going to a rehab hospital. Again I stopped that cold. I flat out refuse to go to a rehab hospital. Anything that can be done there I can get done at home with home health and/or home visits by therapists. After arguing with me about it and talking with Lea Ann about it too, they decide it will be OK for me to go home. Damn straight it will be OK. I am going home. No other option. They say my release will be tomorrow or the next day. So at most I will be in the hospital for this surgery for 19 days, 16 of which were in ICU. Looking back on it now a lot of things happened that could have made things much much worse. Things like the surgery itself and the 12 hours I was under that knife; the day of hell when my body went haywire on the third day after surgery that included heart rate issues, blood pressure (low and high), saturation issues and a general lack of much consciousness that day; the oxygen incident and subsequent oxygen saturation issues; a central line IV infection that was keeping my white blood cell count at a little more than twice the normal limit; my lung not re-inflating properly after the surgery and the bronchoscope procedure I had to endure; depression, anger and self image issues... SO many things to overcome, but with the help of my angel, Lea Ann, and the help of my family and friends, and the medical staff, somehow I was overcoming them. Slowly to be sure, but overcoming them... even though I did not notice it at the time.<br />
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Release day! Holy crap today I get to go home! I'm actually excited and a bit nervous too. I have gotten good care here at the hospital and going home is a bog step, but I feel I can do it. We are getting my stuff together to leave. We meaning Lea Ann is. I am lying there in the bed telling her to take this and take that. Some of the stuff I am saying to take she is a little leery of taking, so she asks the nurse while she is in the room doing her checks. Sh says, and I quote, "You are getting charged for everything in this room. Whatever you don't take we have to trash. Aside from the bed linens and towels and other hardware and such." Having heard that we are taking everything that is not mailed down. Gauze and tape and ointments... literally anything that is not nailed down. Everything in that room was used on me, by me, or for me, and if that nurse says what is not taken is trashed, we are taking it all. We will use a large majority of it up at home later on. After the packing is complete and Lea Ann has made a trip or two to the car to load the trunk, she comes back up and we get a final hospital visit from the surgeon. He is still marveling over how quickly I am healing, however he still says I need to exercise more. Honestly I probably should have been walking more. I don't remember taking one walk while I was on the floor, and as we know I avoided them in ICU whenever I could. Well, I will have to walk around the house when I get home so that will be enough. He gives me the do's and don'ts about the J-Tube that is still in my stomach. I have to flush it once or twice a day with warm water and let him know if anything seems wrong such as it not flushing or getting red around where it is inserted or if the sutures come out that are holding it in. They are NOT going to feed me through the tube at home unless My weight loss gets too much. At this point I am losing weight at quite a clip. I started this journey at 360 pounds. I am now down into the 260 or 270 or so range and still dropping. They will speak with the home health nurse that will be assigned to me as well as the physical therapist. I will be going home with oxygen tanks and they will install an oxygen pump at home as well. The tanks will be used when I am out, the pump when I am home. I will be given a walker for support, and a cane if I want one later. I have literally a plastic shoe box full of pills and breathing medications to take every day. Not to mention the prescriptions that we have yet to get filled. They brief us on all that and Lea Ann promises that I will take them religiously, as do I. Next up, we talk about the Power Port that will be inserted under the skin in the upper right side of my chest in a few weeks. This will be done the same day as my first chemotherapy session and it will stay with me until the therapies are complete and for a while after. The insertion will be an out patient procedure at the hospital, then I will go directly to the cancer center for the first round of chemo. The chemo medicine I will be getting is a combination of Cisplatin and 5FU. These chemotherapy sessions will be once a week for six weeks. To go along with that, I will be getting radiation Monday through Friday for the same six week period. That will put the end of my therapies sometime in the middle of April. Also, while at home, I will have a home health nurse coming once a day for a while, then she will slack off. I will also be starting with a physical therapist to help start regaining my strength and body mass. We shake hands and I thank him and away he goes. In comes the nurse with a little cart with a green oxygen tank attached to it. she leaves it at the foot of the bed. I'll be using that until the home health people deliver and set up the oxygen pump. Then the respiratory therapy person comes in and gives me my final nebulizer treatments for the lungs and breathing. I must say I am quite happy to be done with these. That one smells SO bad and seems to take an hour, then I seem to taste it for a while afterwards. Once those are complete, the nurse takes out the last IV and covers the entry point with a fresh gauze pad. I can remove it in 30 minutes or so. I excuse myself to use the restroom one last time and get dressed in my own clothes for the first time in more than two weeks. They are rather big on me now, but I rather expected that. I exit the restroom and settle into the wheelchair. They put the portable oxygen on me and show Lea Ann and I how to use and set it. Lea Ann smiles at me and asks if I am ready to go. I nod and the nurse smiles and off we go with everything else that she had not loaded into the care before hand. I have to get used to this part. I am one of those guys that always has to drive. Always. Until now. They won't allow it because of all the medications and all. Yet another thing taken away from me. Don't get me wrong. I fully trust Lea Ann and her driving abilities,, I just don't like not being in control. In this case, I don't have any wiggle room, so I just have to deal with it. We get downstairs and have to wait for Lea Ann to bring the car around. I thank the nurse for her good work and ask her to thank the rest of the staff for me. She says she will. Lea Ann drives up. The help me into the car and put the little oxygen cart beside me. The walker goes into the back along with my clothes and all the other stuff we took. The doors all close and away we go... Heading home after almost 3 weeks.<br />
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I considered this another hurdle cleared. Home will be a welcome sight and feeling. Lea Ann and our kids and the dogs and familiar surroundings and all. And my recliner. I am definitely looking forward to this.<br />
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Thank you for patiently waiting for this post. I will do my best to make the next one a lot more timely.<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com2tag:blogger.com,1999:blog-2727385194202256143.post-27144857299019174952014-04-07T00:57:00.002-05:002021-03-10T20:05:01.824-06:00Back in ICU...As mentioned in the last post, I had some issues on the floor after leaving ICU. I have since found out that the hospital did NOT call Lea Ann when all this went down, she just happened to stumble in on it. She was not happy with them at all because of that. I'm also told I had the times basically reversed. This all started in the morning and I was sent back to ICU late that afternoon. Knowing that now, I would be willing to bet at least part of my issue after the oxygen popped off was panic. I just wanted to clear that part up.<br />
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Anyway... Back into ICU I go. My first nurse when I get back there is a male nurse. I don't remember his name, but he seems to be the rah-rah type. Telling me how I can only get better if I try, and no one can do it but me, and making me answer the question he asked that made me actually say the things I needed to do and accomplish to get out of ICU and released from the hospital. Looking back, that last part was probably a good idea. Making a person SPEAK the things that need to be done as opposed to them just hearing the words from someone else, seems to make them more real. At least it did for me. He spent quite a few minutes in the room pumping me up. Having been an athlete in high school, that kind of thing is equivalent to a coach giving a half-time speech. It generally works on the athletes, and it was beginning to work on me. Little did I know that the nurse had taken Lea Ann out into the hallway and talked to her, too. He told her that I probably had a panic attack, or maybe not having the nurse at my beck and call caused my return to the ICU. I'm glad that Lea Ann didn't tell me that part. Had I known at the time I probably would have tried to punch him. Yes, I would have missed or failed horribly, but I would have tried. I'm not big on two-faced people and that is what this was to me. If he thinks all that, by god tell me! Not her. Don't pump sunshine up my butt and then go say something totally different to my wife. Give me a chance to hear it and defend myself and my actions. Who knows, I might even see some truth in part of what is said, but that will never happen if I never hear it. Lea Ann was also told she was enabling me, not making me do enough for myself. I still waver on this, too. Yes she was doing a lot for me. A whole lot. I looked at that as her supporting me and trying to help. She was told that it was holding me back. I will say that if she had not been doing what she was up to that point, I would have thought there was something wrong that was being hidden from me. At this point she did back off and started making me do more for myself, and for that I am very appreciative and grateful. It did help in the recuperation. The problem was, in my mind at that particular point it was very abrupt. The timing was bad. In the mental place I was at the time, that just made me a combination of even more mad and at the same time more depressed. Suddenly hearing from her that I need to do more for myself and she will be doing less was not something I wanted to hear. Especially after having to be taken back down into ICU. My morale and self-esteem was extremely low and falling still. I can hardly walk, I have to have oxygen all the time, I can't eat, I can't seem to sleep without the help pf medication, I can't get up to go to the bathroom by myself, I can't stay out of ICU... Hell I can't even breathe right, and now I get told I have to do more for myself? What a loser I must be. Now I was even <i><b>less</b></i> fun to be around.<br />
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For the next several days I don't remember much. I expect the days were basically uneventful. Just kind of going through the motions, walking when I was told to, doing breathing exercises when I was told to, taking the breathing treatments, eating some of the soft foods but not much, still taking feedings via the J-tube in the belly, and generally not talking much, staring at the TV and sleeping a lot. One of the things I do remember was talk again of my being released to a rehabilitation hospital instead of going home. I stood hard on that. NO WAY was I going to another hospital. When I get released I am going home and only home. I can do anything at home that they can do at a rehab hospital, so home is where I am going when they release me. Period. No more discussion. I don't care what anyone else says or thinks. it is MY decision and I have already made it! Another thing I remember is us talking with the oncologist about next steps. Even though they believe they got all the cancer out, they still want me to go through chemotherapy and radiation. They will start together and run concurrently for six weeks. The chemo will only be once a week so I will only have six sessions, but the radiation will be Monday through Friday for the entire six weeks. I'm told they will be putting in something called a power port for the chemotherapy. It is easier on my body and is also easier for the chemo center to use when infusing the medication. Plus, it can be used for blood draws and other IV type things. It will be another surgery to put it in as it is implanted under the skin in the upper part of the chest, but it is out patient and I won't have to be hospitalized for it. We will coordinate that with the surgeon and get it put in the day chemo starts, which looks like it will be sometime in late February or early March. That will give us an end date in mid April, which would be around the same time they would start entertaining the idea of my going back to work. Someplace in the back of my mind I start seeing just a twinkle of light in this tunnel. That light says "home." I like that idea. I also like the idea that they are talking about getting me out of ICU again and back up on the floor. I look at that as the final step before I will get out of this god-forsaken hospital and back home where I can be comfortable. I am still very down on myself and depressed and mad at the world, but at least they are talking about a discharge from the hospital and going home.<br />
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A little later that day we are told that they have decided to move me back up to the floor tomorrow.<br />
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Thanks for coming along on this journey. It's far from over. See you next post!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com7tag:blogger.com,1999:blog-2727385194202256143.post-57031168938717623202014-04-04T23:31:00.001-05:002021-03-10T20:05:18.553-06:00Moving Up to the FloorThe big day may be coming today. The surgeon has said that the rest of the drains will come out today. They are going to increase the J-Tube feedings and I have been eating soft foods without a lot of issues. I am responding to the breathing treatments and even walking some (but still not well). They are talking about moving me out of ICU and up on the floor. A MAJOR step in recuperation. And it has been about two weeks since surgery, so I must be doing pretty well.<br />
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First things first. After morning parade of doctors, and a final look-see from the surgeon, he says the remaining drain tubes can come out. I ask him when, and his response is, "How about now?" Well... OK. I mention that the ones that were removed several days ago were rather uncomfortable. He basically says the same thing that his assistant said before. It won't or should not hurt at all. I explained it wasn't a pain so much as an uncomfortable feeling. He just kind of chuckles and says it will be fine. His assistant will be in shortly to take the rest out. He informs my nurse, then smiles and leaves. The assistant comes in and smiles and tries to assure me that she will do better taking these things out this time. I told her that she did fine last time, it's just something that I am not used to. The same things happen as before. Out come the drains and the "hand grenades" they are attached to. The uncomfortableness that was there the last time is there again, but the big difference is now I am drain free. I am actually happy about that. The only things I am now hooked up to is the EKG stuff, the BP cuff, the pulse-ox thing on my finger, oxygen things up the nose, and the IV bags and even that is only sometimes. I mean I am still getting the three times a day breathing treatments via the breathing machine, I am now on a CPAP machine while I sleep at night due to my sleep apnea. Even so, that is so much less than before. It feels good. I even walk again today and the let me do it with just Lea Ann and with a walker now as I have no hardware to drag around. I'm still not walking well though. Still having to stop and rest but with a little less frequency and we are walking a fair distance now compared to the first day. We walked all the way around the ward and through the nurse's station (which we weren't actually supposed to do we found out, but they let us that time as we were already part way through it). Why did we go through the nurse's station? It was shorter than walking ALL the way around, and I was still trying to avoid the walking. I'm actually somewhat ashamed of how I am walking, but it never dawned on me that my walking would get better with more attempts and exercise. I was just thinking in the here and now, not how it would get better if I kept doing it. All I ever wanted to do was get it over with. Was ever thinking ahead, and if anyone tried to push me I would push back by not wanting to do it even more.<br />
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We get back from the walk and one of the ICU doctors is waiting for us. He has his back to us and is talking to the nurse. As we come in, he moves aside and allows me to sit back down and relax. We talk about how things are going and how well I seem to doing. What would I think about moving up to the floor and out of ICU? I have only one question at this point... How will the move affect me? By that I mean, will my care change or anything like that? He tells me that on the floor I will get the same care as I have been getting here in ICU, but there are more people on the floor and the nurses have to cover more patients, so the nurse responses will be slower than in ICU. I won't have a nurse solely dedicated to me when I get out on the floor. On the plus side, I will be in more of an actual room room as opposed to this less one, meaning a better more home-type look, my own bathroom with a shower in it... Things like that. I look at Lea Ann and just shrug. "What do you think?" She says she thinks its a good idea and smiles. Means I am getting better. Agreed, but I worry a bit about it taking longer to get nurse's attention and get them to my room. I guess I've gotten a little spoiled, so I think twice about it. It IS a good thing overall and it's a step closer to home too, so I agree. He shakes my hand, says, "Done!" Then smiles and walks out. The nurse congratulates us and leaves too. Lea Ann seems happy about it. I get a kiss and a hug, then she starts gathering my stuff and putting it all into those little plastic bags with the hard plastic handles that pop together to hold the bags closed. Everything that I brought and that has been allowed in this room fits in two or three bags including my clothes. Any plants or balloons that I had received to this point could not be brought into the room, so Lea Ann and the boys took pictures of them and showed them to me as they sat on the counter-tops and tables of home. Soon we are all ready to go but the transport team is not here yet, so we have to hurry up and wait. In the mean time they decide to give me another breathing treatment. Damn that stuff stinks. I swear I can taste that smell for an hour or more after the the treatment, but they do seem to help so I live with it. Literally.<br />
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Finally the transport team arrives. We gather all my remaining stuff, the hardware that needs to come with me, a portable oxygen tank, and myself, put us all in or on the wheelchair and away we roll. Bless Lea Ann for carrying all my stuff in those bags. We weave through the ICU saying goodbye to everyone as we go. We go from the first floor to the third. The elevator ride was quite an interesting feeling after surgery. Didn't hurt or anything, just felt odd. I wonder if I will ever get used to this new feeling. I also wonder if it is all in my head. Probably a combination of both. the new room looks very nice. Large bathroom, a larger hospital bed (no recliner though, so I am a little concerned because of the bed sore that has decided to keep hanging around my tailbone), There are actually little locker looking things on either said of the TV so my stuff didn't have to just sit on the floor or take up space on the little roll away table. It really is a lot more homey and makes me feel more comfortable. That was a bit odd to me as well because I wan't really aware I was not that comfortable in ICU. However, after thinking about it, I had requested medication to help me sleep, requested the CPAP to also help me sleep, and had asked Lea Ann to bring up my Android tablet so I could listen to my music at night to down out the noise. I guess that would be a definition of trying to be more comfortable. As I get into the new bed, it is more comfortable. I hope it stays that way. The new nurse comes in and introduces herself. She explains how things work and how there are less nurses and more patients up here so responses WILL be slower than in ICU. That worry I had comes back again, but I have to stay strong so I don't say anything. The nurse is a nice lady, records all my vitals, sets my oxygen makes sure all is good. She shows me the remote for the TV and the call button for her and leaves. I get used to the new digs and Lea Ann sets up some of my cards and gets my stuff out and gets me all set up. She's starting to get a bit hungry, so she goes to grab a bite. I'll be fine. Of course as soon as she leaves I get the urge for the restroom. So I press the call button. the nurse answers and I tell her I need to be disconnected to all the stuff so I can use the restroom. She says OK, someone will be in. Fine. I'll watch a little TV until they get here. I am not sure how long it actually was, but what I felt was 20 minutes went by so I pressed the call button again. Same voice answers and I tell her again that I have to use the restroom and the urge is getting worse. She says someone will be in as soon as possible. Finally 10 or 15 minutes later (it felt that long anyway) the nurse finally comes in and gets me all set up to go to the restroom for all of 3 minutes. I know they said it would be longer response times, but come on... This seemed to be ridiculously long. Even though I could use the restroom now, I ask the nurse for one of those bed urinals in case this happened again. She agreed and actually gave me two. I wasn't sure quite how to take that, but I accepted both gladly. Had I had to wait much longer this time they would have had to change the bed and bathe me again. In the mean time, Lea Ann had come back. By now it is starting to get dark outside. The respiratory people come in to give me my last treatments of the day. I get a feeding through the J-Tube and Lea Ann and I talk some. She is happy I am out of ICU, but is still worried that I have not been doing much of the breathing exercises and not walking as much as I should be. I agree with her, even though I do it through clenched teeth because I don't like doing either, and we smile and kiss. She asks me if I want her to stay tonight. I tell her no, I'll be OK. She asks if I am sure and I say yes, so we say our goodbyes and we'll see each other tomorrow.<br />
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They don't have the CPAP up here yet, but I am pretty tired, so they keep the oxygen on with the little tabs in the nose, I ask them to shut off the lights and shut the door and the nurse obliges. I put my ear buds in and start my tablet music and fall asleep quickly. I wake up twice to use the urinal as I didn't feel I could wait for the nurse to come in. After the second time I'm getting uncomfortable in how I am lying and feel the need to move a little. I can't roll over but I slightly turn on my side. As I do I hear a pop from behind me and the oxygen line goes slack. It has popped off the oxygen feed on the wall behind the bed. There is no way I can reach the hose to reattach it, let alone getting up to do it, so I immediately push the call button. The disembodied voice answers as usual. I tell her quickly that I have lost my oxygen, then I start to panic. My oxygen saturation level plummets. At this point I was still very sleepy because it was the middle of the night after all and I had the meds in me to help me sleep. I am not sure if I passed out or just fell back to sleep or what, but I remember little else. Later I wake up and nurses and a doctor were in my room and so was Lea Ann. It was light outside, but not overly light, so I expect it was still early. Apparently they had had problems getting my vital signs to settle and they are talking about taking me back down to ICU. At this point I think I fell back to sleep again. When I woke up the next time the decision had been made and they were preparing to take me back down to ICU. Soon after that, off we went back downstairs less than 24 hours after being released from there. A very large step backwards in my mind. I was very down on myself about this...<br />
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Thank you for reading, and please come back for the next post!<br />
<br />Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com2tag:blogger.com,1999:blog-2727385194202256143.post-34271616683496003332014-04-01T01:48:00.002-05:002021-03-10T20:05:32.712-06:00Preparations to exit the ICU for the FloorBy this time in ICU I have had a majority of my IV's out (I've only got one left). They are feeding me some via the J-Tube that is protruding from my stomach to the left of my belly button and they are starting to ask me about what I want to eat from the hospital cafeteria. It is only soft foods, but it is a step in the right direction. Honestly though, I'm not hungry. At least I don't feel like I am, so I never answer the questions about what to bring. That forces them to just kinda pick and choose what to try. Lea Ann helps them choose based on what she knows I will eat, or at least what I used to. They bring things like really thin oatmeal, jello, pudding, shakes with extra protein added (the bring me two of these with <i>each</i> meal), Milk, and some sort of juice that varies between apple, and grape and orange. I'll nibble here and there but I just do not feel like eating. I am honestly still a bit afraid. But what am I afraid of? That could be quite a list at this point but the three things foremost in my mind are swallowing in general, food getting stuck and the pain that MIGHT cause, and the general idea of actually having to eat hospital food. Yes, I said that last one was a foremost thought. We've all heard about hospital food. What they say is true. It is bland and everything seems to taste the same because it all has a similar smell (which also is not that appetizing - or at least it wasn't to me). Backtracking a bit on the other two thoughts... Swallowing. Why on Earth would anyonw worry about swallowing? Basically because I had not had to do it for quite a few days and I know that what my surgery did will affect the swallowing mechanism. Will it hurt? I never asked, but I assumed it would. Kind of like after a kid gets his tonsils out I supposed. I wasn't willing to risk it just yet. Food getting "stuck"... This was actually happening to me <u><i>before</i></u> surgery because of the mass that was on top of the Barrett's Esophagus I had that actually has the cancer in it. Certain things I would eat would get to about the bottom of my breastbone and just "stop." There is no really easy way to define how it felt. It was NOT a choking feeling. I could always breathe fine and it never affected the breathing portion at all - Thankfully. The best way I could put it is it would be like I took a bite (usually too big of one too, remember I was quite overweight) and it went to the top of the stomach and stopped in its tracks. the esophageal muscles were trying to push a bite that was too big through a hole smaller than it was. At least for a while. How would I get it to go down? I tried everything... Drinking all sorts of different things form water to soda to milk to... fill in the blank. What I found would happen was that the bite ended up acting like a ball stopper. It would allow a bit of the liquid to get into the stomach then would try to go down itself and get stuck again so now I had liquid on top of the blockage, a little in teh stomach along with some air... That didn't cause me to get sick as in vomiting, but it did cause me to burp... which caused the backed up liquid to be regurgitated. It was (and still is) a very odd sensation and is very uncomfortable. As time has gone by I have gotten somewhat used to it when it happens and I've learned a few tricks to hide that discomfort and wait for the bit to finish that journey, but at that time I was clueless. All I knew was it was a very uncomfortable feeling and I would forgo eating just to make sure I didn't have to endure the feeling. So to say I was eating in a very guarded manner would have been a gross understatement. And for whatever reason I was not pushing myself in that regard either (along with the breathing therapies I was supposed to be doing or the walking). I did start eating things slowly and very timidly. Mostly drinking. This was going to take a while to overcome. I was still getting the tube feedings as well so as to not be missing out on things I needed nutritionally.<br />
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Walking... Do I have to? They actually got me to get up and start walking. Being an ex-athlete I could not for the life of me understand why this was such a big deal. Walking is second nature to us all. It should be no big deal. I am strong and I can walk whenever I want. Oh how we convince ourselves of things that are not even close to true. It took them several days and Lea Ann asking them about it several times and her also asking me when I was going to get up and start before I actually did it for the first time. It was several days beyond when they were supposed to start it when I finally did my fist walk. I had held it off as long as I could. So here we go. I am told that most use a walker when they start their treks, but I would be pushing a wheelchair. Why? Because I was still hooked up to IVs and other mechanical devices plus the drain tubes were all mostly still in and I had hardware that was holding my stomach incision closed. They could take all the machines and drainage bags and IV pouches and whatever else off the racks they were on and place all of them in the seat of the wheelchair so they could come with me. How convenient. This was worse than the toilet dance I spoke of in a previous post. Can't this wait until I get off all these machines and IV's? Nope. You have to walk today (and that was coming from the nursing staff AND Lea Ann - I had no choice). Fine. I'll walk. I'll show you I can do it and it won't be a problem then you all can get off my case about it. They bring the wheel the chair over and start loading it up. It's amazing the amount of stuff I am still hooked to, especially since I had felt before now that most of it had been removed. Boy was I wrong. Things are getting disconnected and unplugged and put on battery packs and reconnected and all sorts of other things. It is taking two nurses and Lea Ann to get this all set up. All this over a silly little walk? OK, time to sit up. No problem I'll just lean forward and rotate over to get my feet on the ground... Um... excuse me? I said I would just lean up and rotate around. Brain to body, please respond. I finally actually attempted to lean up out of the recliner. OW! What the hell? I cannot sit up at all! It hurts and even if I could have I would not have been able to stay sitting. Well I did have my stomach and back cut open so this makes sense. I get help sitting up from the nurses, with Lea Ann standing by in case they need an extra set of hands. I get spun so my feet are off the edge of the recliner and they make triple sure my feet are on the floor and feel comfortable to me. Yes, yes I am fine. Can we just start this please so I get show you all I am fine and get back to lying down? Time to stand up. I get some weight on my legs and they start to shake and tremble. What the hell is going on here? My legs and my back were the strongest parts of my body less than 2 weeks ago. Now I can't even stand up? I must be over-medicated. It will get better as I go I'm sure. Just haven't been on my legs in a few days and they got lazy. Little did I know... It is amazing how quickly you lose muscle mass when it is not being used. It takes so much less time than it takes to build it back up. I finally get standing, nurse beside me, Lea Ann on the other side, nurse behind. I'm starting to get concerned now. This is NOT how this is supposed to go. So I start to walk... If that's what you can call it. The best thing I can relate it to is some old 1950's horror movie where the monster drags a leg when it walks... But I was dragging both in an alternating fashion. I'm already starting to sweat and huff and puff a little bit and we have not even gotten out of the room yet. All manner of red flags and alarms are going off inside me. Nothing is working right... In my head I start to panic. Outwardly, I am staying as quiet as I can and trying not to show it, but inside I am going crazy. Why are my legs not working? Why can't I move them properly? Why is this so hard? I've taken four steps and I am shaking like a leaf and sweating. This is excessively incorrect. The staff and Lea Ann, bless them, are telling me I am doing fine and that I can stop when I need to to rest or even sit if necessary. We get about two steps outside the room and I have to stop. It's like running a marathon. Holy hell... They walk me only one room past mine, turn me around (VERY slowly so I don't get dizzy) and walk me back to my room and the almighty recliner. I sit heavily on it. They tell me that I need to work on control more but that I did very well for the first walk. Again, my inner monologue is telling me they are just being nice. I walked 15 feet in 15 minutes and that was good? This is WAY depressing. At least I did it I suppose. I need a nap. And I slept not long after.</div>
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Not long after waking up, the surgeon came in and looked at charts and bags and the drains and all and declared that some would come out today and some tomorrow. Well cool. Less things to lug around at the very least. OK Doc, how and when will they be coming out? Oh it's simple. We take the dressing off the ones we want to remove and just pull them out, then a fresh dressing on the wounds. Um... Excuse me? That doesn't sound so pleasant. Oh don't worry, you won't feel it much if at all. If you say so... but I am already starting to tighten up (well as much as I can considering my current physical situation). The doc's assistant comes in and starts telling us which ones are coming out. She says it won't take long, but they do ask Lea Ann to leave the room. I don't want to watch either so I don't. I feel the assistant and the nurse removing dressings from around the tubes and they are talking about what to do when and where to put this and that. Then the assistant asks if I am ready. Yes... No... Maybe... Just give me a count down if you would please. She agrees and taps a tube to let me know which area I may feel it in, then starts counting...3... 2... 1... Pull. Like hell I won't feel it. It felt like something was uncoiling inside of me and it was very uncomfortable. It wasn't really pain as much as just a totally uncomfortable feeling. I honestly think I would have handled it better if it was pain. At the very least I could have been given something for that. OK the first one is out. The nurse is dabbing around the wound area, and covering it and then they are moving to the next one. All in all they did this for four or five of the eight drains I had in. She stopped there and said the rest would likely come out tomorrow. Thank god. Now I need another nap, but I wanted to wait until Lea Ann came back in so let her see I was OK and hopefully keep her from worrying. Not sure if it worked or not, but she smiled at me and said it was another step towards getting out of here. She's right. It is, but it doesn't really feel that good. It feels like a step backwards to me.</div>
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Breathing therapies... still avoiding them. I say I did them when no one is in the room but rarely did. Not because it was hurting, but because it was hard and it was pretty disheartening that I wasn't even able to breathe right. Between this and the walking debacle, I'm just wiped out and starting to get depressed and mad at myself. I'm never going to get better. Why even try? The anger/depression monster sets in again. When he comes around I avoid him by sleeping. I would be sleeping a lot these next weeks and months. I live through the breathing treatments two or three times a day. I'll walk maybe one more time today, but I hope not. All I want to do is sleep... To escape.</div>
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The nurses and docs are all talking about getting me out of ICU as well...</div>
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Thanks for reading. I will see you all next post!<br />
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Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4tag:blogger.com,1999:blog-2727385194202256143.post-87012003266008710182014-03-22T20:37:00.002-05:002021-03-10T20:05:50.378-06:00The Darker Side...<span style="font-family: Arial, Helvetica, sans-serif;">This has been the hardest post I've written</span><span style="font-family: Arial, Helvetica, sans-serif;">. The emotions are hard to pin down and once pinned they come out pretty close to full force again. Things in t</span><span style="font-family: Arial, Helvetica, sans-serif;">his will be a little out of order of how things went but, after talking with Lea Ann and thinking about it, I wanted to write more about the emotions that were swirling around all through this journey. Please be aware that they are not pretty... they still being tears... To me and to Lea Ann. This will probably be longer than usual, too. As you may have figured out, I can get wordy, but in this case I think wordy might be better than being brief.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'll be trying to explain emotions and states of mind and what was going on in this old head of mine, at least to the best of my recollection. Not an easy thing to do. Lea Ann has given me some good parts of this as well. Once again, I've found out a few things I did not know or remember. I am starting to wonder if I don't remember because I truly don't, or if I have unconsciously blocked the memory out. Some of this is pretty far off-base for my usual personality and demeanor. I hope it will make sense to you. If not, please let me know and I will try again.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">They say there are five stages to the greif process. Denial, Anger, Bargaining, Depression and Acceptance. There are no truer words in my opinion. I can't say I hit them in that particular order, but I did hit everyone of them. Some harder than others, some simultaneously, and some more than once...</span><br />
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<b style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;">Denial</b><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 19.200000762939453px;">... The reality of a cancer diagnosis is hard to face. No kidding, right? A lot of us see it as a death sentence. </span></span><span style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;">I know that is what I heard in my head. </span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 19.200000762939453px;">We don't hear the words, "You have cancer," we hear, "You are going to die." I thought I would have been ready to hear that after losing so many to cancer in my family. My father, both grandmothers, a grandfather (in part), my mother-in-law... Not to mention my mother is currently in hospice care (this is her 4th dance with the devil), and my father-in-law who is currently clear of the bladder cancer he had been diagnosed with. None of them were Esophageal Cancer, but they were a form of the beast. So with all that "experience" with cancer in my background I thought I would be ready to hear it. Was I? Oh HELL no. Not even a little bit. So what do we do when we hear this? One of the first things is deny, deny, deny. We're going to try to shut out the reality of the diagnosis and put together a different reality. One that isn't so scary. I'm a prime example of that. If you remember back to the first couple of blog posts, I was talking about Valley Fever and Gall Bladder issues and yeast infections. I clung to those like a Boa Constrictor. No way was I going to let go. Anything that would not point to cancer was a good thing. I was </span></span><span style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;">actually </span><span style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;">in denial </span><i style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;">before</i><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 19.200000762939453px;"> the diagnosis because I was so afraid of it, but who wouldn't be? With that much of it in their family already? I had been told by doctors that I had a better than 50% chance of having some form of cancer before I was 55 or 60. I was 49 when the diagnosis came. It just so happens that was the same age my father was when he was initially diagnosed. A very bad coincidence and one I constantly thought about. In fact, I still do. So anything that I could cling to that would shield me from the cancer diagnosis I used. After the diagnosis, I still held out hope that the diagnosis was wrong. I denied it to the ends of the Earth. MOST of this denial was internal though. Inside my head. Outwadly</span></span><span style="font-family: Arial, Helvetica, sans-serif; line-height: 19.200000762939453px;"> I was trying to show that I was not afraid and that it would all be OK and I said so. A lot. All the wile inside I was curled up in ball in the darkest corner of my mind. I have to hide. I have to make them see that the diagnosis is wrong. I do NOT have cancer, I can't. That, my friends, is a textbook definition of denial.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 19.200000762939453px;"><b>Anger</b>... This is the BIG one. This stage was hit hard, early and often. </span></span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">"Why me?"; "It's not fair!"; "How could this happen?" These are only a few of the angry questions that crossed my mind. Once I </span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">recognized that the denial wasn't working, I turned into a six foot, 300 pound ass (I can think of worse words, but I am sure you can come up with several of your own and every one of them would be right). Why? Because I was so angry (and scared - they go hand in hand in this situation). I became <u><i>very</i></u> difficult to deal with and even harder to care for. I was doing one of two things. Lashing out at everyone because of misplaced anger and </span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">envy of their health compared to mine</span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">, </span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">or I slid into the "I'm just going to sit and not talk and not smile and not do anything" mode.</span><span style="font-family: sans-serif; line-height: 19.200000762939453px;"> </span><span style="font-family: sans-serif;"><span style="line-height: 19.200000762939453px;">I got angry with myself too. How DARE my body betray me and get cancer! I am not ME anymore. I am cancer. That's how I viewed the situation. It was all consuming and absolutely infuriating. I was especially bad with family. I was short, rude, and downright mean. If you tried to get me out of that shell I would just lash out. Saying things like, "What difference does it make? I am going to die anyway! Just leave me alone!" Words like that actually drove Lea Ann out of the room crying on a few occasions. I was in my shell mode most of the time. Especially after I was taken out of ICU and put on the regular floor. There was an issue there the first night that totally changed me. Lea Ann says it was like night and day. I'll go into detail about that issue in a later post, but that's when I went into a shell within a shell. Not wanting to do ANYTHING. I wouldn't even hold my own male urinal when I was in the ICU bed. I stayed like that for a long time. This anger affects everyone. Lea Ann was angry, too. At the situation, at me, at the doctors... She called the surgeon a lying f-er when he was talking with us about my staging being a Stage III instead of Stage II or Stage I. I told him it was BS and several other things as well. Hurt and angry tears from both of us. These medical staffers, from top to bottom, have to have HUGELY thick skin and thank God they do. I'm told that after surgery when the lady from the American Cancer Society wanted to talk with me that I refused. I told her to get out of my room. I would not even talk to her on the phone. Lea Ann tried to convince me to talk to her. Absolutely not. How about talking to someone else about some support groups then? No! Maybe via email? No! NO NO NONONONO! The cancer has been cut out of me. It's gone! I don't want to talk about it anymore! Not with an American Cancer lady, not with some support group person, not via email, not with you... Not ANY way! It is gone and I want to forget it! Leave me alone! Go Away! I was talking to no one. Period. By this time she was going home at night most of the time. She was catching the brunt of my tirades and I do not blame her one bit for leaving. To her credit, she was always back the next day. This shell and anger game lasted even after I was discharged and went home. Lea Ann was getting scared. Nothing she was doing was working. She was afraid and running out of ideas. During this time, she had been in contact with the guys I have been best friends with since high school. They had told her flat out, "if it gets too bad or you need help or are scared and need extra support, all you have to do is call. We will be there." She called them. Less than a month later they were at our house. Two of the three "originals" (the ones I did the running with back then) and two others that we have inducted into the group. The only one missing wanted to be there but couldn't get off work. Lea Ann says when they showed up I became me again. The old me. Talking, smiling, laughing, and doing things, going out... I even fired up the BBQ grill. That was not fair to her and I know it hurt her. I hope some day to help heal that hurt. I believe that her calling the guys was the point where I started turning the corner. After they left there were still moments to be sure. More tears and arguing, but I was starting to LISTEN and understand what Lea Ann was saying and not just hear her talking. This was at around five or six months after surgery and I was also done with chemo and radiation. Soon after I feel was when I finally started to pull up and out of the funk. </span></span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">Luckily for me she and the family stayed with me and kept coming back and coming back and trying again and again. </span><span style="font-family: sans-serif; line-height: 19.200000762939453px;">They took the hate and rage and anger and venom and lightning bolts... and the silence.. and just kept coming back for more. That's what true love and true family is. I include friends in that definition, too. Family is blood and marriage, but it also includes your friends. Your friends are the part of your family you get to choose. I've always called my closest friends brothers and sisters. I thank God for all of them every single day of my life. They were there and stayed there and I don't think I will ever be able to repay them. They were supporting and helping in every way, and I repaid them with loads of crap and worse. They will never know what they mean to me. Each and every one of them. I can never apologize enough for the hell I put them through.</span><br />
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<b style="font-family: Arial, Helvetica, sans-serif;">Bargaining</b><span style="font-family: Arial, Helvetica, sans-serif;">... Dear God, if you get me out of this I promise to... Fill in the blank. Ever done that? I do. To be honest, I don't remember bargaining much during diagnosis and treatment. I was just too numb. Too isolated. Too scared to think that clearly. In order for me to bargain, I have to have at least a semi-clear mind. Otherwise I make silly, stupid, outlandish bargains and that doesn't sit right with me, so I have trained myself not to do it much. So this emotional stage wasn't all that prevalent throughout the journey. I bargained with Lea Ann a lot. I'll do the breathing exercises if you get me this or make me that. I'll walk if you let me sleep first... Most of which I would not follow through on until the listening started again.</span><br />
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<b style="font-family: Arial, Helvetica, sans-serif;">Depression</b><span style="font-family: Arial, Helvetica, sans-serif;">... Another big one. This one tended to go hand-in-hand with anger. When a person retreats into their own head and are so entrenched there that they won't do anything to help themselves, that is depression. As you have read in this post, I had a lot of that. How bad was it? Before I was allowed to get up and use the toilet I had to use a little plastic hand-held urinal. I wouldn't hold it at first. I made Lea Ann do it. How pathetic is that? But she DID it every time I asked until she said something about it and it got me mad enough to just do it myself. Was I mad at her? I don't think so. I was mad at me, but she had to take the brunt of it. You have to realize that during all this Lea Ann was also hurting. In a literal and a very real physical sense. She has Rheumatoid Arthritis in both feet and osteoarthritis in several other areas. While I was in the hospital and for some time after, she was slacking off on taking care of herself so she could help me. I knew that... I saw that. But instead of thanking her and helping out more myself I just slid deeper. In certain ways I saw her strength as something that just made me the tiniest bug splattered on the windshield of life. How could she be so strong and courageous through all this with all that is going on with her? Why can't I be like that? I suck. Deeper into the isolation I went. She would bring me things and I would look at them and then just put them aside. Thanks... At home she would make me protein shakes with ice cream because I needed them for therapy and muscle recovery. I would rarely drink them then they would get watery and warm and I would complain. While still in the hospital I was doing SO little for the therapies, not using the breathing things and not walking, that they pushed hard to release me from that hospital and register me in a rehab hospital. I flat out refused. No discussion. I am not going. Rehab hospitals are for drug addicts and alcoholics and criminals I thought. I won't go there. Period. I got my way, got to go home and stayed in that shell. Just sit in the recliner with the oxygen hoses strung all over the house and do nothing. Not even shower. Just sit and stare at the TV. If the home healthcare nurse was there or the physical therapist I'd go through the motions, but as soon as they left so did I. I still walk along that cliff's edge sometimes. Occasionally I will feel myself sliding down and correct that as quick as I can. Back then I just slid down and down and down. I actually thought I would be worth more dead than being here because of insurance. It was my general state for quite a while, and again Lea Ann stayed right there by my side doing all she could. So did all of our kids and our nephew and family and friends, but Lea Ann was closest to the flame. This was the hardest thing for me to shake. It took all I had and all that Lea Ann and the family had too. It is the hardest on everyone, especially when combined with the anger part. Again, another part I am not proud of, but it happened and we got through it.</span><br />
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<b style="font-family: Arial, Helvetica, sans-serif;">Acceptance</b><span style="font-family: Arial, Helvetica, sans-serif;">... I think that's where I am now. It's been one hell of a long road to get here. As I have told a few others, writing this blog helps that, too. I had to wait until I was at this mental stage to get a little perspective. I'm at the point now that I can honestly say I am ready for whatever comes next. If I can get through all this crap and crud and slimy mess, so can anyone else. I'm sure of that. I can look back now and see it all and see how messy and ugly and mean and rude I was, and how the situation was too. Don't get me wrong, what I am writing in the blog is all true. I'm not making any of it up nor am I adding things to make it more funny or anything... I am just leaving the emotional things a little closer to the door. I'm going to start adding more of the emotional component into the blogs from here on out, too. Emotions are just as much a part of things as the rest. I just seem to want to shy away from them because they can hurt and cause tears and I feel we have had enough of those for a lifetime plus.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In conclusion, I hope that this entry doesn't scare you off from the rest of the blog entries that I put up down the road. I just don't want to hold anything back. If I do it isn't fair to you who are reading this. If this is going to reach someone or help them at all, it needs to be real and honest.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Thank you for being here and reading along. I will talk with you again next post.</span>Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4tag:blogger.com,1999:blog-2727385194202256143.post-43797518032376448542014-03-17T20:38:00.002-05:002021-03-10T20:06:05.991-06:00Lea Ann and the Trail Back, Part 4Before I start the main part of this entry, I wanted to introduce you to my wife, Lea Ann. She has been talked about enough here that I thought it only fair and appropriate. Of course I got her permission first, I'm not silly or stupid... well sometimes I am... but then again... Oh. Um. Never mind. :) Anyhow, she is a big part of my journey and has gone through this entire roller coaster ride, too. She is as much a warrior as I will ever be. When I say she is the better half of me, I mean it. She is my Angel Baby and ain't nobody can tell me different! A woman that is strong of heart, mind, body and soul... What did I do to get so lucky?<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCKT4eVQ44JDdicCDwBtVnlBPUhwNyrWLsFXz7rHAUsudLqVnl3bN6wutUNvSApfnsyxPpghdIbCEFyxsA3sFcZcKqBYdDRUlTVtaLYkjFWxdNxZb8IVOTWfcrx67ha6wgQxUl2OORG7k6/s1600/My+AB.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCKT4eVQ44JDdicCDwBtVnlBPUhwNyrWLsFXz7rHAUsudLqVnl3bN6wutUNvSApfnsyxPpghdIbCEFyxsA3sFcZcKqBYdDRUlTVtaLYkjFWxdNxZb8IVOTWfcrx67ha6wgQxUl2OORG7k6/s1600/My+AB.jpg" height="256" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Lea Ann, taken in June, 2013.<br />
Gorgeous isn't she? (Yes! I am biased! :) )</td></tr>
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Today started as the last several have. Nurse shift change, vitals check, dressing check and change, light conversation and a few chuckles. I'm finding that I use humor a lot more than I thought I would at this point against the worry and fear. I'm sure it doesn't work for everyone, but it does for me. I suppose sometimes it may come off as misplaced or maybe even tacky at times, but I can't help it. It's my shield. Nothing is ever said that is hurtful or anything to anyone (I do tend to jab at myself pretty hard, but not anyone else), just trying put up a strong front... One of those masks that we all wear I suppose. If I can get a laugh out of the situation then it can never beat me. So far it seems to work. At least I have not gotten into trouble or taken to task over it. Toward the end of the check-over the nurse says that they will be taking out the central line IV that is in the neck and the PICC line that is in the wrist. This concerns me a little. The IVs have become my fast friends. They help me to feel better when in pain and help in getting a good night's sleep. So I mention that. She smiles and assures me that it will be OK. We're still keeping the IV in the other arm for that kind of stuff. And on the plus side, it will help me get rid of maybe two or three pieces of equipment around the bed. Great! We can cancel the Broadway choreographer auditions that were being set up to help with "The Medical Equipment and Tubes Toilet Dance." I mean come on... When it takes you longer to get ready to go to the bathroom than it does to actually go... That's just incredibly wrong. This is definitely another step forward in recovery. I'll take those steps all day long. The nurse leaves for a little while. I'm a little nervous over the IV removal, but it will be fine. I have a backup in the other arm like she said. Why am I worried about IV removal anyway? That's nothing compared to what I have already been through. The nurse comes back in a bit later with Lea Ann behind her. She has done her due diligence and knows what is happening. She's smiling too. She knows this is a good a thing. That strengthens me and my worry dissolves quickly. Out come the IVs in the neck and wrist. Those are some damn long tubes for an IV. I'm impressed. The nurse leaves again and Lea Ann and I have a couple minutes to talk. She looks a lot more rested and seems to feel better. She had some time with the boys last night and the dogs (I can relate to that. I'm a HUGE dog guy). She also got to sleep in a real, honest-to-God and comfortable bed, too. Though she mentions that it's not the same without me in it. That time will come, baby. I promise.</div>
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Now its time for the parade of doctors. ICU doc comes it to check on things in general. He seems happy with the progress and leaves. Next comes the respiratory doc and one of his assistants. He's now teaching future doctors how to freeze a stethoscope before using it on a patient. Ice cold again. I have no idea how I ever breathed out. He still hears some crackling in there. He notices the breathing therapy tools I got the other day and asks if I have been using them three or four or five times or more a day. Um... Sure. Maybe not quite that much, but yes. Had he looked at them closely enough he might have seen they were already starting to gather dust. Lea Ann just rolls her eyes and makes a mental note to talk to me about that later. He asks about the nebulizer treatments, and I say I have had two or three of them. He is prescribing them twice a day. He is treating me as I am a COPD patient until that lung opens back up more. That's why the therapy tools are important. I am a prime candidate to get pneumonia if I don't do that. In a couple of days he will do another ultrasound, but it does sound a little better. A good thing. He leaves. Next in is the surgeon and his assistant. He is still amazed at how well and how quickly I am healing. He checks his handiwork, confers privately with his assistant for a minute or two, then comes back over and announces to us that a couple of those drains will most likely come out soon. Maybe tomorrow. Not all of them, and they may stay in a little longer as they are closely monitoring the output an all. That will drive the decision of when and how many. I actually have eight tubes in my ribs right now. Four in each side. Some of them are hooked to these little IV looking bags that fill up. I call them my hand-grenades. Why? Because I have no idea what they are or what they do other than hold drainage. And honestly I never asked. Four of those hoses feed into three of those grenades. The other four hoses go... wherever they go. I never really paid attention. I'm just glad they are getting closer to coming out. He has also prescribed Heparin shots for me to be given in the stomach a few times a day if I remember right. That might sound painful, but it really wasn't. I was still numb through most of the mid section so I never felt a thing. I also have to start wearing these leg...things. Wrap them around your entire leg, Velcro them shut, put them on an air pump, and then pump air in and out of them. Especially when I am sleeping. This will help keep the possibility of clots down (along with the Heparin shots). Only bad thing about those leg things is that they are ungodly hot. Otherwise it felt kind of good. Kind of massage-like. He finishes up and they leave. Soon the Oncologist comes in. She sits down to discuss the after surgery therapies. First and foremost, they believe they got all the cancer out. A VERY big plus... However (I hate that word at times like this)... I hear that and immediately tense up. Something bad is coming next... She says, "To make double sure we got it all, and to kill off any of the cancer that may be left, we are prescribing six weeks of chemotherapy and radiation." The chemo will only be once a week and they will be using Cisplatin and 5FU at first with additions later on if they are needed based on tests and blood work, etc. The radiation treatments will be every day, Monday through Friday for the six-week span. Doesn't sound so bad to me, but I worry about the therapies. I have seen, as we all have, people losing their hair and taste buds and getting sick as hell and all. I'd really rather not go through all that if I can get around it. I ask the doctor about it or if there is any way to not have those types of reactions. She says every person is different and every reaction is different, so she makes no guarantees. She also explains that after I have healed enough from this surgery I will have to come back in for an outpatient procedure to have a power port put in my chest. A power port? What are they doing, turning me into a Transformer? I won't run on regular gas anymore but on electricity? Will I get better gas mileage? Ha ha... No this is to allow them access to easily infuse the chemotherapy as well as easy access to blood draws. It can also be used for other IVs too if needed. Ok. When will this be "installed?" It'll be after I have been discharged and have been home and have gotten a bit stronger. So a little while yet. Maybe a two or three weeks away. She wants to start the therapies in early March. Right now it is early February. OK, so I have a little time before the next surgery. Another good thing. She reiterates they truly believe they got it all out, but it is better to be safe than sorry. I agree and tell her that if they radiate me enough, maybe I could become a nightlight in our bedroom. I'm sure she has heard that a million times, but she chuckles anyway then excuses herself. We're making progress. Slow and steady...and that is how it SHOULD be. This is a marathon, not a sprint. Slow and steady is a lot more stable and feels better than rushing things and running into other issues. Give me slow and steady all the time. I'm down with that.</div>
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The rest of that day is rather uneventful. Smelly nebulizer treatments, more periodic checks by the nurses. They say at this rate I will be out on the regular floor in no time. I suppose that's good, but that worries me too a little... way back in the back of my brain there is a seed of worry about that. Not sure why, but I can feel it. I'll bury it for now. Its probably nothing. And yet another day that I did not have to get up and walk. Like I said before, I am NOT one that is good on following therapies. In this case they just never came and got me to walk, so I just did not mention it. However, Lea Ann was noticing it...</div>
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That's all for this post. Please come back for the next one!</div>
Brian Brownhttp://www.blogger.com/profile/11111268898382335780noreply@blogger.com4