STEM Cell Transplant Blog: It’s more than a process, it’s a way of life for now.

Hooray! Got to go to church today. First time in a couple of months. It felt good even though I had to “keep my distance” from the other members while I was there. Can’t afford to get an infection at this point. It was a good experience for me!

What the future holds is another matter. We’ll see about that when the time comes.

I’ve felt very quiet for the last couple of days. There are times when I wish that I understood myself better. Is this something everybody goes through?

Where do I go from here? Survival is looking more and more likely with a good chance of complete recovery. If that’s the case, what will I do with the rest of my life?

Will I be able to live a high-energy lifestyle or will I be reduced to living the life of an idle witness to the events in the world around me? Above all, I want to ¬†spend my time wisely and well. I’d like to be productive in the most complete sense of the word. What’s really going to happen and how much control will I have over it?

My mind hasn’t been very clear or really active in the last several days. This is probably due to the changes that are taking place in my body as a result of the transplant.

At least I’ve been able to relax. When I get back to the hospital tomorrow the blood tests will show how “stable” my blood chemistry is capable of being without 24/7 monitoring which, frankly, is beginning to wear on me.

Have a lot of things that I need to get done in the next several days including the completion of the sleep study or, at the very least, get it scheduled.

I’m eating and gaining weight a little bit every day. This is crucial. Can’t do much of anything else until I’ve reached safe weight levels with a corresponding increase in strength. It’s becoming easier to do now that food tastes good again.

As a footnote to all of this, I have 29 regularly scheduled pills that I take on a daily basis as well as those which are administered on an “as needed” basis. I have no idea of how I would keep track of all of this without my wife’s help.

Ever since the graft versus host medicine was adjusted I’ve been feeling calmer and quieter. The flareups of skin irritation and itching have been less severe and less frequent as well. My gastric problems have almost been eliminated as well. ¬†Now if I could only think, and plan, and follow through most of the time I’d be doing pretty well. Hopefully, I’ll have more to say tomorrow than I have today.

More tomorrow!

10 PM Stem Cell Replacement Blog: Learning, growing, overcoming the fear and the pain. Life in the slow lane.

Here we are again. Standing safely on the shores of mortality. Listening to the waters of eternity endlessly swirl quietly beneath our feet as it murmurs almost incoherently about the inconsistencies of mortality. This will never cease until, once more, mortality is replaced by the serenity of immortality (which always has existed).

We made our second trip away from the guest house in order to shop for groceries. Five minutes from here we encountered a very interesting ethnic “supermarket” featuring a host of fresh fruit and vegetables from (primarily) Central America. What a neat place!

The neighborhood that it’s in is like a bay at the confluence of several very different rivers each with entirely different characteristics. Part of the area is subject to gentrification and that is represented by a fair share of middle income professionals and medical students. there is an Asian influence as well. I believe that these groups are from SouthEast Asia, maybe places like Laos or Cambodia. There is a substantial black community there as well. But, perhaps predominately, there is a bewilderingly diverse Latino influence probably primarily from the Caribbean. It was a crowded, noisy, fun place to shop. I know I would prefer to shop in a place like that. It was a big store rivaling, in size, some of the supermarket chains. This market is also a chain but of a local variety.

I’ve just begun to deal with my “affairs” again. There is quite a bit for me to deal with. I didn’t realize, even before my admission to the hospital, just how much I had been distracted. I missed a lot of what I should have been taking care of. Fortunately, the people with whom I spoke yesterday have been more than willing to work with me. I don’t know how I could have missed some of this. There are so many “psychological” and “emotional” side effects of illnesses such leukemia.

Every day I’m a little bit stronger than the previous one. Still, it’s a struggle to take care of my minimal needs. I’m amazed by just how much my strength was reduced in the last few days in the hospital as a result of my low activity level. I should have been more diligent but it was very difficult because of the contradictory demands of hospital care. I still can’t figure out how to take Lasiks which leads to almost uncontrollable diarrhea and urination and, at the same time, work out dilgently. Medical staff can’t explain it to me either in any way that I can understand it.

I need to get control of my affairs again. The process has just begun. We’ll see what happens next!

More tomorrow!

10 PM Stem Cell Transplant Blog: Aftermath and after thoughts!

I lived through the transplant process, so far, everything is proceeding more or less as expected. Because of that, you’d think that I’d begin to relax, wouldn’t you? That’s not happening. Why?

I have a theory. To me it appears that when the pressure is on, your mind chooses to respond by “hunkering down” and dealing with the real and present danger with which you are faced. When those challenges begin to fade away, your concerns come back and begin to take over again. Those anxieties can manifest themselves in a large variety of ways.

What I’m experiencing right now is unfocused anxiety. I”m worried about everything, not knowing what to be concerned about in the future. I’m worried about what will happen next. I’m also concerned about whether or not the Leukemia will come back. These worries rotate from one series of things and then through a series of others.

I’m getting better every day but the path isn’t totally straightforward. I’d like to see some more warm weather. This cold is more than I can handle at this point. I’ve already made one “nearly complete” recovery from Leukemia ALL. This time I’m hoping it will be totally complete and, I suppose, subconsciously, worried that it may not. Life takes faith and I need to exercise faith more consistently. Sometimes it’s easy to do and other times it isn’t.

I’ve received excellent medical care but I am so happy to be out of the hospital. i’m beginning to feel more like a human being all of the time. I hope to be able to stay out of the hospital! One day at a time. Only time will tell!

More tomorrow.

10 pm Stem Cell Transplant Blog, October 1st, 2015. Surely a journey of discovery!

For now on, I’m planning on using the date in order to identify the blog. What I was trying to do before was simply too complicated.

The weather has definitely changed. I had the opportunity to enjoy one last day of the extended summer-like weather before it changed. I’m very happy that I got to do that! It helps me to keep going for some reason.

I woke up this morning feeling good. More than that, I felt normal! I’d almost forgotten what that felt like! That made it a pretty good day. Next thing we need to do is to learn how to turn on the heat. I might have figured that out already. I hope so! It’s getting cold.

My strength and my appetite are coming back too. I’m eating a little bit almost all of the time. Could be better days are ahead soon where I begin to feel like myself more often.

The question becomes who I am. Some of the results from the bone marrow biopsy are back. From what they have so far, 85% of my bone marrow belongs to the donor which makes 15% of it my own. What I don’t understand is this, is how in the world could any of my bone marrow have survived what they did to it? Eventually, it has to become all my own otherwise I’ll have a whole new set of problems.

They’re telling me that all of the surviving bone marrow should belong to the donor by the end of 90 days and certainly by the end of the process. All of my blood chemistry numbers are looking better than before. Progress is being made.

I so much want to forget all of this. It will be wonderful when, and if, that happens.

today was a good day. I’m hoping for many more like it.

More tomorrow.

10 pm Stem Cell Transplant Blog: It’s one day at a time. Two steps forward one step back. Not an easy path!

The Kevin Guest House is a wonderful place to stay. We’re very happy that we were fortunate enough to find it. Being the occupant of an upstairs Victorian apartment is stretching me. I’m barely strong enough to get around it because of my month or so of relative inactivity. At the least, it’s helping me to get my strength back quickly or I wouldn’t be able to get into the house and out and about on a regular basis.

The activity is forcing me to eat because I now have the need for the energy. That’s helping me too. Being active is letting me get tired enough to sleep normally. That part of it is working out well. These are probably the most important things that needed to happen to me in order to become healthy again. Now if I can avoid getting sick, it should go well for me.

I finally figured out that I shouldn’t be eating with the other residents because it amounts to too much contact with other people while my resistance is low. I don’t know why it didn’t occur to me earlier when it should have been obvious. I have a feeling that my doctor is going to be telling me that tomorrow. They decided that they wanted to have a meeting with them tomorrow. We’ll see. I don’t want to have to go through another recovery again. I definitely think that I’ve been weakening my immune system. I’ve got to do better.

Going back to the topic of having a blog. I’m going to have to reconsider doing it again. I know that I ought to be setting it up in such a way as to increase interest. However, I’m finding myself so weak (and pushing so hard so much of the time) that I simply let it all out in a massive jumble of thoughts and emotions (most of which are presented in such a way) that it would only interest me. Thinking clearly is still a real problem for me.

So I’m going to think it over again and try to make a final decision.

More Tomorrow!

10 pm Stem Cell Transplant Blog + day 31. Getting rid of each leukemic blast from the past a single cell at a time.

I realize that the fact that I am still alive has less to do with me than it might seem. Still, my willing participation in the process is totally necessary as well.

I was extremely disappointed last night when my blog simply (and inexplicably) disappeared from my browser and my program. WordPress can be like that. If copy disappears it may simply be gone unless you’ve already had the opportunity to put a save in on the article. Last night I wasn’t even touching the article and I watched it disappear. It’s not the first time WordPress has done that! Ihink that I may have found it again. I still can’t conceive of how an article I’m not working on, am looking at, can spontaneously disappear from my screen and “hide” in my word processing program?

I”m hoping that getting out on Monday will speed up the healing process. I’m almost certain that it will. Being with my wife Lynne and seeing my family will help me too. I haven’t seen any member of my immediate family for well over a month. I’m looking forward to the prospect of enjoying life again. What a joy that can be! I’m hoping that no unforeseen circumstances interfere with that!

Right now I”m locked in place. Need to start going forward again. Getting forward motion, as anyone who’s done it knows, is easier said than done. I simply have to do it. Wish that the only things that I knew how to say were encouraging words! I’m pretty far from that too at the present. All that I can say right now is that I lived through it. Now I have to get excited about it again. When I get out of here, I think I can muster that. I find it amazing how quickly my courage can fail. One man’s life’s challenge can be so different to another person.

Still, I know I’m where I ought to be doing things that I know I should be doing (in a general sense). And much more specifically, some of what I’m experiencing is absolutely necessary for my salvation. So, the game grinds on. Some of my most profound insights can come through the my most mundane experiences.

The restrictions they’re placing on me are onerous. It will be a definite challenge for me to keep them. I don’t know how these things will affect my wife Lynne. Somebody has to be the anchor here?

My next question is: “What’s really next?” What will constitute the real challenges?

I’ll talk about that more tomorrow (if I can remember). At least tomorrow I get out on the street again! Feel the sunshine and the breeze. Walk in crowds of people with a penguin mask on feeling, I suppose, totally normal? We’ll see.

10 PM Stem Cell Boogie Blog. An attempt to make sense of the most confusing event of my life. Wouldn’t undo it but it’s hard to get through it!

Some days are harder than others. The last few have been the most difficult of all. This has been so tedious that I could scream and all of this agains a backdrop of continual pain. Wish there was some place where I could go to hide for awhile.

Don’t know where that would be because I carry it all right along side in me. So, in that sense, I can’t escape any of this. Right now all I want to do is to endure and escape, just as soon as possible!

I was just rereading my labs from this morinng. My WBC was at 2.2., low normal is 4.

MPV (Mean Platelet Volume) was 9.-1.Low normal is 7,2

O, in my own inexpert opinion, I survived the first phase of the transplant. I currently have all the strength I need for all daily tasks. Hurray! Doesj’t sound very exciting here either

I’ll probably leave on Monday and I feel the worst that I have (except for brief moments) for my entire stay.

If I only have to work on those things that are manifesting themselves right now, it’s going to be a long and, possibly, dangerous journey.

In spite of all of this, it feels wonderful to wake up in the morning and walk to wherever I want to go, And carry things too.

There are times when I can think adequately but they can fade out as quickly as they come. I need to be able to think and to express myself. That’s important to the person that I am.

They’re going to stimulate my blood chemistry again using shots. They want to raise the WBC and the ANC. That shouldn’t be necessary soon. There’s a part of me that wants this all to be normal while maybe recovering from something like the flu.

I was told what this would be like (some of it I figured out for myself from past experience) and the information that described recovery has been correct for the most part.

If it had been any harder, I don’t know if I could have endured it. As irrational as it is, I thought about walking away from it all serveral times. I still have another stressfull 90 days here in Buffalo in front of me before I”ll be permitter to leave the county.

Well, good night everyone!

May you sleep well tonight and have a special day tomorrowe.

More Tomorrow!