Monday, April 28, 2014

Going Home

I 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.

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 actually 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.

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...

Thanks for reading and please make it a point to check back for new entries!

Tuesday, April 22, 2014

Back to the Floor, then Out the Door

First 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...

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 real 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.

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.

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.

Thank you for patiently waiting for this post.  I will do my best to make the next one a lot more timely.

Monday, April 7, 2014

Back 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.

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 less fun to be around.

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.

A little later that day we are told that they have decided to move me back up to the floor tomorrow.

Thanks for coming along on this journey. It's far from over. See you next post!

Friday, April 4, 2014

Moving Up to the Floor

The 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.

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.

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.

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.

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...

Thank you for reading, and please come back for the next post!

Tuesday, April 1, 2014

Preparations to exit the ICU for the Floor

By 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 each 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 before 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.

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.

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.

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.

The nurses and docs are all talking about getting me out of ICU as well...

Thanks for reading.  I will see you all next post!