Sunday, January 25, 2015

January 25... Two Years After

Hello 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.

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.

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.

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 never 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.

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...

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.

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%.

Number one on that list for me would be my wife, Lea Ann.  My angel baby, emphasis on the word angel.  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... 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! 

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.

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.

Once a cancer warrior,
ALWAYS a cancer warrior...

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...

See you all next post.

Thursday, January 8, 2015

Trying to Shrink Clots, the Return of Physical Therapy, and Another Visit from the Midwest

Hello 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!

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.

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.

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.

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...

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.

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.

I am including pictures of both visits. This first one is from Lea Ann's dad and sister's visit in April of 2013.
Grand-daughter Sophie, son Bill, Lea Ann's father Ed and sister Mary, son Bob, Lea Ann and myself, son Aaron, & nephew Eddie.

This one is the from the guys visit in June of that same year, 2013.
Matt, myself, Kent, Lea Ann, Chris, and Alex.

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!