Saturday, March 22, 2014

The Darker Side...

This has been the hardest post I've written. The emotions are hard to pin down and once pinned they come out pretty close to full force again.  Things in this 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.

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.

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...

Denial... The reality of a cancer diagnosis is hard to face. No kidding, right? A lot of us see it as a death sentence. I know that is what I heard in my head. 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 actually in denial before 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 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.

Anger... This is the BIG one. This stage was hit hard, early and often. "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 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 very 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 envy of their health compared to mineor I slid into the "I'm just going to sit and not talk and not smile and not do anything" mode. 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. Luckily for me she and the family stayed with me and kept coming back and coming back and trying again and again. 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.

Bargaining... 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.

Depression... 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.

Acceptance... 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.

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.

Thank you for being here and reading along.  I will talk with you again next post.

Monday, March 17, 2014

Lea Ann and the Trail Back, Part 4

Before 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?

This is Lea Ann, taken in June, 2013.
Gorgeous isn't she?  (Yes! I am biased!  :)   )

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.

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.

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...

That's all for this post.  Please come back for the next one!

Thursday, March 13, 2014

The Trail Back, Part 3 (Still in ICU)

Still in ICU, still getting meds via the central line IV in my neck to help me sleep, still in the recliner, too.  I actually told Lea Ann that the recliner is so much more comfortable than the beds that she should try it one night.  She did.  Not such a good idea.  Good for me, not so much for her.  She woke up sore and stiff and achy from it.  Sorry about that baby...  Maybe it is better for me because I am on meds and you are not. There is nothing like our bed, and this place is proving that to us both every day! My bad.

I really do like the nursing staff.  They are friendly, they talk to you as a person and not as a patient or a number on a chart, and they care...  It shows in and how they do things every day.  I am most impressed with them all.  I have two different nurses per day.  They switch on the 7's so I know when they are confabbing in the corner it is time to put on prime-time TV and see what there is to see!  The 7:00am conference tends to be outside the room and also I have been asleep through a majority of them, at least so far.  Otherwise, time has little meaning to me here other than I know when it is night and time to sleep.  I have NO idea what day it is generally and honestly, with the medications I am on, I don't much care either.

Today I had a visit from several of the doctors.My surgeon came in, took a look at the site while the nurse and his assistant changed the dressings.  He says it looks very good and that I seem to be a quick healer.  At this rate I will have the chest tubes out in a few more days if all keeps going this well.  I like that and I tell him so.  He may be a blunt, straight-to-the-point-type but to be honest I want my doctor to give it to me straight. It is hard to fight something if you are not being told exactly what is happening.  This doctor does that.  I wonder if it has something to do with the fact he is actually a cardio-thoracic surgeon and not a gastroenterologist.  In any event, I've been told by several people that he is the best in the state, if not in the entire southwest.  So as mad as I had gotten with him before, I cannot think of someone else that I would have wanted to do the work on me that he did.  Next in was the respiratory doc.  Lean forward, deep breath in, out, in, out, in, out moving that damned sub-zero temperature stethoscope all over my back and chest and sides.  How can one NOT take a deep breath?  I swear he keeps that thing in a freezer and just takes it out to use it them puts it right back in.  In any event, my breathing is better.  "Less crackles" he says. That means I am flowing more air and that means the portions of the lung that got scoped are getting better and may be re-inflating again.  He will take a look in a few days.  I didn't think to ask him HOW he would look...  Just took him at his word (it ended up being an ultrasound a few days later).  I had been diagnosed with sleep apnea long before the cancer diagnosis, so I was still on the oxygen with the nasal nubs stuck up my nose.  My saturation was good, so they started to wean me off the oxygen a bit.  He also mentioned that the respiratory therapy people would be in to see me today.  The word therapy and I do not get along so well, but we'll see what they say whenever they get here.  He says they will have some exercises for me as well as possibly some blow-by breathing treatments if they are deemed necessary.  Time for a nap. ZZZzzz...

I am awakened a little later as the nurse is doing one of the periodic checks. Lea Ann is dozing on the chair in the corner.  The nurse says they will likely get me up to do a little walking later on today.  Oh really?  Well uh, at the moment I am fairly comfortable.  I don't really have much of anywhere I want to go.  Why would I need to walk?  Oh it helps fend off pneumonia and gets some of your strength back and helps you heal and gets your breath back too.  Well...  Maybe if I stay quiet and don't ask about it they will forget.  As she is finishing the respiratory therapy lady comes in.  She is pushing along yet another piece of equipment and pulling along a table behind her that has some things in plastic bags. She introduces herself and asks about my breathing issues and all.  I tell her what I had and about the sleep apnea and Lea Ann adds what she knows about the collapsed lung and the re-inflation issues. At that point she hands me the first plastic bag from the table.  It has this blue thing with a tube and a mouth piece on it that looks to me to be either a new fangled musical instrument or a breathalyzer in case I might possibly be drunk.  It was neither of those.  This thing you had to breathe in through your mouth as much as possible, but keep the pressure as even as possible by keeping a little plastic wafer hovering between these two lines. She says it measures the volume of air you are bringing in and also helps to increase it.  It also helps to keep possible pneumonia at bay. Sounds simple enough.  I ask the therapist what the volume is for an average for a person not fresh out of surgery.  She shows me by moving this little sliding marker up the cylinder that houses the wafer.  the closer I can get to that the better I am doing. Doesn't look very hard. She wants me to try it...  No problem.  I blow out all the air that I can then put the mouth piece in and start to inhale. The little wafer is laughing at me, I swear to god.  I did not even get it up a third of the way to the marker for average and now I am coughing like an idiot.  What the hell?  I was breathing fine!  Why do I need to do this?  She explains that this is normal and I need to use this several times away and try to get better every time. I nod as my coughing fit subsides.  She hands me the next plastic bag. Another little plastic unit thing...  Another mouth piece and this one has a ball inside it.  Its kind of heavy. Another breathalyzer?  No, this one is for blowing out.  It makes your chest vibrate as you are blowing out to loosen anything in there and allow it to be expelled or absorbed. Lets try that one...  Well Ok.  Blowing out can't be as hard as sucking in.  Wrong.  It barely moves and it causes me to start hacking the coughs again.  This is starting to hurt a bit too.  She states that is common as well and that I need to use this little tool several times a day too.  I put both on my roll-around table as I am returning once again from a red-faced coughing fit. I will now get a little nebulizer treatment for some blow by medications to help my breathing as well.  This will get done two or three times a day and will be happening less and less as I get better.  I know about nebulizers.  I had to use one on my twin girls when they came home from the hospital as both had asthma. They are easy.  Put yet another mouth piece in and then just breath normally until the medication is all gone.  I have to take two different treatments that takes a total of about 30 or 45 minutes.  They do seem to help, but I wonder if they are because of all the coughing I did on those little therapy tools.  I'm not liking those.  They make me cough and hurt.

Night time comes...  I'm starting to get tired and it is dark.  Lea Ann is still in the room with me.  I talk with her about going home.  I have been stable, they are weaning me off a few of these things and I am starting initial therapies.  I tell her that she ought to go home and get a good nights sleep in a bed that is comfortable and will help her back and feet some (she has Rheumatoid Arthritis in both feet).  We can give her cell phone number to the nurses and if anything happens or if I need anything they can call her.  It is only a 20 or 25 minute drive to get back here, 15 if you hurry.  I am worried about her. She looks SO tired and I want to make sure she's OK and gets some good rest.  I still have that urge to take care of her, even at this point in time.  She decides that she will do it but makes me and the nurse promise to call if ANYTHING comes up and she will call to check on me throughout the night. We agree.  I smile at her, I say thank you for taking care of me and staying with me all this time.  I kiss her, I tell her to sleep good and dream better, I ask her to maybe dream of me, and I promise her again I will call if I want her to come back or if I need anything.  Her exact words are "You BETTER or you will need this hospital longer than you already do!"  She and I both chuckle and I get another kiss and she heads home for her first night's sleep away from the hospital for a week or so.  I have to say also that throughout this whole thing, Lea Ann has been the information nexus of the entire network of family and friends and co workers, etc.  She has been calling and texting and Facebooking several times a day giving updates, thanking people for presents and flowers that have been delivered, and generally just being my rock.  In fact the entire family's rock.  I have to commend the boys too.  Our boys have been doing and helping her and I all they can.  My girls are all back in Missouri or I am sure they would have helped too.  Without ANY of them I would have had a much worse time.  I love them with all I have, all I am, and all I ever will be.  Without hesitation.  The flowers and things that were delivered were not allowed in the ICU room, so Lea Ann would take pictures of them, have our sons take them to our house, and she would show me the pictures.  I got to see all the stuff later after I went home.  In any event, Lea Ann was doing SO much and staying awake and watching over me so much...  I cannot tell you how she did it because I have no Earthly idea.  She is the strongest woman I have ever known and I an happy and proud that she has chosen to live her life with me.  I am one lucky son of a gun!

So Lea Ann goes home, I get my nightly IV medication to help me sleep, and I secretly smile and think "I got through the day without having to get up and walk around like they said I would..."  Slight mental chuckles permeate my brain as I slip into sleep...

Sunday, March 9, 2014

The Trail Back, Part 2

At this point, my memories kind of blend together.  I have many but have lost the ability to put them in any type of chronological order.  So...  If these seem a little disjointed it's because they are!  That being said...

Getting de-catheterized.  A good thing.  Another step towards getting back to normalcy right? However I have to admit I had  never been catheterized so I had no idea what to do when they took it out (I was actually under anesthetic when they put it in).  They waited until I had not relieved myself for a while.  That was done because they said it helps if you press down and try to relieve yourself while they are pulling the tube out. Um... are you sure? I mean I've not gone in several days and once I start... You know how that goes for us men, right?  Oh yes.  It will help.  We do this all the time. Well Ok. I'm in no position to argue. Literally. Apparently the muscles of my bladder were still intact and as strong as ever. As soon as they started to pull that tube I pressed down and started spraying all around the outside edge of the tube. Had I been able to see it I'm sure it would have looked like one of those lawn sprinklers, but the gown was raised up and protecting my entire upper body... thank the lord.  So then the nurse tells me to slow down. Really? Seriously? As many of you know (especially you men) stopping after we start is nearly impossible, and if we are able to it feels like an immediate triple hernia and there is always continued leakage until we are allowed to finish. I was stuck full open throttle. Sorry nurse, but the ability to slow down or stop the stream seems to have left me. They got the catheter out and needless to say I needed a new gown and a bit of housekeeping around the chair. Honestly, I can laugh about it now but at the time I was totally mortified and felt a ton of humiliation. I must have apologized a hundred times. The nurse was very professional and courteous and nice about it, but I was embarrassed about it for several days.  As a little side not to this, after the catheter was out and I had to go to the restroom it was like a totally choreographed Broadway show. I swear it took longer to get all my IV stands and monitors and all the other stuff disconnected and ready to move WITH me.  None of the leads were long enough to just allow me to go over there without all the other hardware. Not to mention the fact that my leg muscles had decided to go on strike for the most part. I could not walk without help, but using a walker to the toilet bowl that was like eight or ten feet away would have been more of a hassle than a help. So it was always the nurse and Lea Ann helping me. I thank God for them, too. You have no idea how important that is until you can't get there on your own. Thankfully I never wet the bed or the recliner, but I did end up needing a few more fresh gowns during these processes. In the very beginning I was able to use a urinal and not leave the bed.  I liked that because it was easy and no moving  other than getting partially on one side.  Soon though they wanted me starting to get up and around more.  So that meant all the moving of hardware and such when it was time to pee. As well as my muscles in that area worked at first, soon I had little control.  It was like my body would say, "I'm close enough to the bowl...  I'm starting."  And standing in front of the bowl wasn't possible at first, so I was always sitting. Sometimes I would not get the gown out of the way and into the bowl the bottom of the gown would go. Then I would go.  Nurse? Can I have just a rubber gown?  That would be easier to clean I expect.  This is getting absolutely silly. Also embarrassing, but the nurses and Lea Ann finally had me calmed down enough about it that I was not wanting to go climb down a hole and hide.

Moving away from the restroom thankfully, lets talk about sleeping. I'm sure most of you know that sleeping is an important part of the recovery process. Healing time for your body. With that in mind, think of how many times a night the nursing staff in an ICU has to come in and check your vitals and leads and IVs and whatever else you might have stuck on you or in you. I am not a person that is happy to be awakened several times a night. Not to mention that I have to sleep on my back all the time now because of the surgery and the fact that sleeping on your side in a recliner is next to impossible for long. So I was getting a little upset I could not sleep and I was honestly starting to have some pain as the anesthetics were continuing to wear off. I asked the nurse if there was anything they could do or give me to help with the pain that was coming and the lack of sleep I felt I was getting (which, looking back now was a miscalculation on my part.  I was sleeping a lot). They changed my IV meds for the pain and the times I got them to correspond better to the night time. That worked well.  I was waking up maybe once a night when it was near time for the next dose.  When they came in to check on me it was not waking me up at all.  Dilaudid and Morphine were fast becoming my sleepy-time friends.  I was given them mainly at night I believe, thought the day time had some doses as well.  Might have been another medication that was given for the pain during the day.  I don't remember.  Honestly, the Dilaudid worked better for the night time, so we saved that for those times and never gave it consecutively. They also constantly brought the doses down to make sure I was not going to have issues later on. The pain management there was very good.  I had no complaints there at all.

While I was awake, I found a show I had never seen on TV that was a good way for me to get a smile and a laugh. Even though I was over their target age range, I actually found it on MTV if you can believe that. Its a show called Rediculousness. Its produces by the same company that produces the Jackass shows and movies.  Much along the lines of Americas Funniest Videos, but Rediculousness finds all of its clips online. None are sent in.  All those kinds of things make me laugh. To this day I still record and watch Rediculousness and AFV.  Another show I watch for laughs and smiles is on truTV called Impractical Jokers. Also watch a lot of the classic comedies on DVD.  I love Mel Brooks and his movies. They always make me laugh. Movies like Blazing Saddles, Young Frankenstein, Space Balls...  There are many.  Also movies like Animal House, Caddyshack, Smokey & The Bandit, Cannonball Run, Meatballs, Stripes...  I could go on and on. Also looking up bloopers and "fails" on YouTube... Starting to see my twisted sense of humor?  Laughter and smiling are a big part of recovery to me, not to mention I get to watch stuff I like while doing it.  Hell, on my Facebook page we even posted a video of my old high school group of friends and I lip-syncing to one of our favorite songs. There are clips of us in that video going all the way back to 1979... Its a good laugh and good memories too.

That's all for now.  Next post I will start talking about the getting up and moving around and the day I was discharged from ICU and went to the floor and what happened there. Hope to see you all there!

Monday, March 3, 2014

ICU and Starting the Trail Back

Up until now I am sure some of you have noted that I have not mentioned the staging of my cancer. I did that for a reason. It was varying quite a bit and they had never really settled on a staging.  It had gone something like this... At first Stage 1 or 2 at the outside. After the CAT Scan, PET Scan and ultrasound it went to Stage 3. No one could could give us a really good, solid answer. My surgeon said, and I quote, "They will slice and dice what we took out of you, the esophagus and all 30 of the lymph nodes, and then we will know what stage you are for certain."  When those results came back it was determined to be S3N3... Stage 3 with three nodes involved, however we were told the cancer cells in the three nodes were "dying" and that is why they were just barely glowing in the scans.  All of the 27 other nodes were clear.  So, my final staging was S3N3.

The picture I am including here is not flattering at all as pictures go, but it shows how I looked and felt on the day after all all hell broke loose.  It was the first picture I had taken after surgery.

Brian in ICU, Tuesday, 1/29/13
Those of you that notice details will see that I am not in a hospital bed in this photo. I am in a recliner. To most that is a positive step in recovery, and it was for me too, but there was more to it than that in this case. The hospital bed did me SO very wrong. Sleeping in that bed was almost impossible because it was so uncomfortable.  It was causing cramps in the lower back which was a problem due to how close it was to the back incision site. The proximity was just too close. I actually asked to be moved to a recliner before they were going to get me sitting up. Sitting up in a recliner is part of recovery, but I did it more for comfort and the possibility of sleep more than for recovery at the time. Looking back now, I think I may have just been too big for the bed... Too heavy.  At the time of surgery I believe I was still around 300 pounds, give or take.

Another thing was found when I moved to the recliner... a developing a bed sore just above my tailbone. Those things are not fun. Stinging and itching and sore.  I cannot get comfortable no matter how I lay. With it being situated on the top of the butt, there is really no way to sit or lie on my back and not put pressure on it. The sore was something that made Lea Ann furious.  She had been a CNA and said that they are not really hard to avoid, so when I ended up with one she was very unhappy. They put ointment and a dressing on the sore as I was transferring to the recliner. Once in the chair I had to be careful how much I moved around. The ointment tended to make the tape around the dressing not stick well so it could make the dressing slide around or come off if I moved too much. However moving around wasn't a big issue at that time. I did not feel much like moving and I was still catheterized and not eating yet, so using the toilet was a non-issue. Being in the recliner was MUCH more comfortable. I stayed there a majority of the rest of the time I was in ICU. The nurses kept asking if I wanted to get back into the bed. I would not have cared if they took the bed outside my room and burned it in effigy just outside my window. I wasn't going back to it if I had any say in the matter.

I am still having issues taking good deep breaths, and I am still on oxygen as without it my saturation is not as high as they would like without it. The respiratory doctor is concerned because the lung that had to be deflated during surgery was still not inflating correctly.  Lots of what he called crackling when he we listening to my breathing. They were concerned about air flow, saturation and the very real possibility of pneumonia. The doctor decides to do a Bronchoscopy on me. That is a procedure where they put you out, then go down into your lungs with a scope and they can look around, get scrapings if needed and also wash out the breathing sacks in the lungs if they need to. He thinks that this may open the areas that are having a hard time re-inflating and allow them to work properly again. We agree to have it done, even though I get to be put back on the respirator for the procedure. Yay. I don't think that they had to move me. They were able to do that procedure right there in my room. Once again, out like a light. When I wake up I can't talk again because of the tube, but it is removed fairly soon after and I don't get quite as agitated as I had the first time.  I'm also not tied down that I remember, so that was a huge plus as well. After that procedure my breathing felt so much easier. I felt like I had a lot more energy and pep. Breathing is good.

On a personal note, our 6th wedding anniversary came while I was in ICU. February 4th. I had my Android tablet with me and I posted an anniversary wish on my wife's Facebook page, but that was all. That woman had stood by me throughout this entire thing and was staying with me in the room at the hospital and I did nothing but post on her Facebook? I gave her a kiss on the day I think (I hope I did). How crappy of a husband am I?  I should have asked the nurse or one of the boys or someone to go and get her flowers or something on that day. She deserved so so so much more than she got. I regret that I didn't do more. I am sorry, Lea Ann. If I could go back and do it differently I would, sick or not. My brain was still working, even if it was fuzzy at times. For now all I can do is apologize and say is I love you. You are the better half of me. Always have been, always will be if I have any say in the matter.

Please stay tuned for my next entry...  I'll get it posted in a few days.  These posts are a bit harder because the memories come in flashes and I have to try to piece them together as best I can. I tended to run a lot of them together.

Lastly, thank you for taking this journey with me.  I hope it is making some sense and might help you understand how things were working, at least in my mind.