10pm Sunday, 12/20/15 Stem Cell Leukemia Transplant Blog. Time to go forward again!

Monday

Starting another week. Definitely more healthy. Ate almost 3000 calories for my mid-day meal and I’m still eating. The change has come but I don’t know what it means. What does this all mean?

It’s about time to go. Problem is I don’t know where to go from here. It’s definitely time to start working again. I can feel that I have sufficient strength and clarity of mind to begin working again. And, I have a plan. Guess we’ll see how well it works!

Tuesday

Was able to work a little bit today in spite of the difficulties. Changing the direction has been difficult and will probably cause me some serious problems with my son but the changes are the right thing. Need some overt success or my feelings on this matter aren’t going to matter. This whole thing may be very difficult. Only time will tell.

Wednesday

Now I’m out! Feeling pretty good. Need to get to bed. See how I feel tomorrow. It’s pretty late right now! Can’t reconcile my medications right now!

Thursday

First day out. Very disappointing results. I’m sick all over again and I don’t know why! What am I doing wrong? Why can’t I figure this out myself? I’m worried that exactly the same thing (gradually being incapacitated) will happen all over again but without any understanding as to why! Don’t feel like eating again.

Friday

Walked out into the kitchen. On the way back tripped on the two steps up. Hit my head so hard! I was surprised. Didn’t expect that at all! How did that happen? No recollection at all. Just remember going down very quickly and uncontrollably. That’s gonna be so black and blue! It’ll be difficult to explain to medical staff on Tuesday when I go back there. Don’t want to have to do that at all. Enough of that!

Showing remarkably little damage from that terrible fall today. Did I “dodge the bullet” again? I can only hope so. I’ll have to learn to be more careful and “act my age”. What did I trip over? Absolutely no control over that fall. Hit the floor before I knew I was falling! And yet, I feel fine now?

Saturday

Back again. Feel better again today. Perhaps I’m making progress but at an uneven rate or something like 2 steps forward and 1 step back? I think that I’ve been surprised by the amount of work and time this “rehab or getting back to normalish” is taking. Wish I felt more courage!

It’s going to take just as much effort for me to rehab as it has for me to survive. I’m going to have to gear up for this. I didn’t understand how this is going to work. And, in some respects, it may be too late already.

Figured out what I “tripped over”. It was the floor. The  floor is covered with a wood laminate. The subfloor is very uneven. There’s a very obvious spot of “low to high” right before those two steps. Wasn’t paying attention. I am now!

Sunday

Very early Sunday morning (still Saturday night to me). I was able to work today, to get some stuff done. I think it may have been good. I don’t know if I was able to pack the tweets tightly enough to determine whether I was successful or not. Ultimately, with advertising, no response means that it can’t be successful (unless your metrics for success are incorrect). And therein lies my dilemma. Measurement and clear-headedness? Need some rest, time for bed once more!

Maybe a little bit more in the morning?

 

10:00 PM 11/15/15 Sunday Stem Cell Replacement Blog: Don’t know what to expect so you learn to expect anything.

Sunday Evening:

This has been difficult. Trying to decide what to do next! To say the least, I am confused.

Monday Evening:

Be going home reasonably soon.

Tuesday Evening:

Rainy day today. Most of my thoughts and thinking are on hold. Need a clear head.

Going home soon (to Adams) but have no idea of what I’ll be doing after that. Need to develop a viable plan and then follow it. I need clarity. That’s the starting point.

I’m stunned by how quickly this is coming up. I was expecting to spend about another month here.

Wednesday

It’s been another slow day. Very tired. Not getting anything done. Need more strength and understanding of what is happening with my health. Not getting any insights. I need more strength! Don’t know how to achieve that goal. I’m still eating almost nothing. I wish I understood what was going on. So far I don’t. I’m going to try to get more sleep tonight. The CPAP pressure has been raised and I have a new mask.This should make it possible for me to sleep much better. I’ll find out for sure tonight.

My Hootsuite program isn’t permitting me to send out tweets to multiple addresses. That’s the whole reason I have that program. All of my programs, those that I need, are so buggy! It makes me feel helpless and incompetent.

Need to get past this point in my healing and my “incarceration”. I’m ready to go home and find some normalcy in my life. This has been going on for more than a year. I’m beginning to lose perspective.

Thursday

Trying to do better.  I still don’t have much of an appetite or any desire to do anything. It’s tough trying to care right now. I don’t know what I can do or have to do in order to make the progress that I need to make to get from here to where I need to be. What do I need to do in order to get beyond this point? I just don’t see any progress being made at all.

Anyway, the CPAP is working properly but it is very difficult for me to put on. I should be getting better rested as a result. Maybe that will help? Something has to work in order to get me out of this state of mind. I’ve reached the point that I’m neither going forward nor backwards.

I’m concerned about the future. Have no idea of what it’s going to be. I know what I want to happen but I have no idea of how my life is going to go forward. Anything could happen. I have absolutely no control  over what anyone else does and my actions, at the present, are not very effectual towards meeting any of my own goals.

Friday

I’m still mystified. Don’t know what to do in order to break this “deadlock” in which I don’t feel as though I’m progressing. This frustrates me. What are these problems connected to? Is the issue with my stomach? Does it involve all of the fluid surrounding my lungs? Is it some subtle form of graft versus host disease that I can’t detect? What about the sore in my mouth? I have absolutely no answers myself. What do I need to do next in order to move my “healing” forward?

I bought some supplements like ensure to make sure I’m eating at least the minimum that I need. I get at least the minimal amount of exercise so that shouldn’t be an issue. I can’t make any sense out of this at all.

My attitude is beginning to break down but maybe that was inevitable anyway after the passage of so much time. It doesn’t help that I have no idea of what I’m going to be doing. Nor, at the moment, do I have any desire to do anything anyway! That’s not typical of me. So much I don’t understand. Definitely lacking a sense of direction.

Begun to eat more. It’s uncomfortable to eat but, when I do, I feel better. There has to be a way to get past this so that I can eat normally again and have  my body respond normally to it.

Just heard about the Paris terror attacks. Terrible! This has to change our overall response to the international terrorists! Will we find the “will” to wipe the known terrorists organizations off the face of the earth? If not, I can assure you that this will continue.

Saturday

ISIS has been provoking the West more and more directly. Sooner or later they will get a massive response which should lead to their elimination as a power in the Middle East. So far, the Western powers haven’t been focused enough to employ enough of their power to eliminate them. The Paris attack may be the beginning of the end for ISIS. Only time will tell.

Feeling better today. Going to take the supplements again today. Is this a trend? I think that it may be. As my strength comes back my appetite seems to as well. Reverse of what I would have expected. Each day needs to get better than the last from here on forward or I’m probably not going anywhere soon. We’ll see.

Went into the clinic today without an appointment. Lynne changed the dressing on my central venous catheter last night. Looked really irritated today. Decided not to take any chances. The nurses changed it again today with different products. Looks okay now. Can’t be too careful at this point. I definitely want to get to go home soon.

I’m feeling a little bit better. It’s beginning to warm up again. Easting better than last week. The energy drinks are helping with that. Hopefully, I’m beginning to move past these problems. I’m doing what I can.

Sunday

Water is beginning to taste good. So I’m drinking more of it. I like roasted peanuts too. Eating those things and the protein drinks and some vegetable and rice. At least I’m eating now. It’s disappointing having to go through this process of learning how to eat all over again. Oh, my facial hair is coming back in again but, this time, it’s almost all white. That’s a real disappointment. Would have preferred a mixture with red in it again!

Can’t help but wonder who it was who so generously offered my his stem cells? Know nothing about him except he was 26 years old. My first donor backed out. For some reason he only wanted to do a “bone marrow transplant” which, according to what I’v heard, would have been considerably more painful. Don’t know if their are any particular advantages to it either. That was a strange situation. Had a feeling that he was going to be a no-show but I didn’t know why.

As long as I can rest, I think I’ll take a nap. I sleep much better now that I have a new mask on my CPAP. So, see you all later.

 

Bruce

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: Looking for easy answers in hard times.

Leukemia has been the greatest single trial in my life. It has also been the single most powerful spiritual experience I could possibly have had and it continually provokes me towards righteousness. I’ve seen myself rise to great heights as well as be distracted to pettiness because of it. What does it all mean? I truly don’t know except that it was foreordained for some important purpose either in my life or the lives of those around me.

I wish I could consistently be strong spiritually but I’m not. I still struggle with faith, and service, and forgiveness, and vision and a host of other things. I do know that My Father in Heaven is capable of bringing me back to Him if I choose to be obedient, faithful and repentant.

I caught the last session of General Conference today. I’ve been so distracted and preoccupied with leukemia I managed to lose track of the General Conference schedule. It’s so easy to let the spiritual things in your life be swallowed up by the current cares and concerns. Still, even for that one session, it was a delight to hear God’s word for us through his duly appointed representative.

My life has been remarkably good even as it has been so terribly difficult. When I concentrate of what’s important and have faith, I can handle it. I’ve seen more than a few miraculous things happen on my behalf. When I fail to do so, then I stumble. The pattern is the same over and over again. I keep forgetting that this isn’t playing out according to my plan but as a part of a far greater plan of which my life is a part and it will be adjusted according to my performance and willingness to receive it.

As far as the leukemia is concerned, I didn’t know that I was going to get that dread disease but I knew that some event of grave importance was going to occur in my life in the future and that it would have very important implications for me. Didn’t know what it was but I recognized it when I saw it. For that reason, I was able to exercise great faith at the beginning of this illness, more so than I have any time since then. I become more uncertain as time goes by because I have less idea of what to expect. Like everyone else in my position, I want everything to work out well and to what I see as my “advantage” without really knowing what is best from this point forward. It’s so important that we walk with faith and a willingness to assume that everything will work out for the best, whatever that is. That’s not always easy to do.

To a few people what I’v written about today will have deep meaning in their lives and for a few others it will amount to superstitious prattling of an anxious old man trying to preserve his life for a few more years. I went ahead with the stem cell transplant because it felt like the right thing to do. It was something that I had to go through, regardless of the outcome. I still don’t know the outcome. Even if I survive the leukemia, I’m still 69 years old. What does the future hold? I doubt that it can be terribly long. I want to spend my time doing those things that will be of greatest value as long as the opportunity is there to do so. What will that end up being? I hope I get to work productively again. And, I want to write. And make peace with my family (the most daunting task of all). That will require all of the strength that I’m permitted to have!

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.