Sunday, December 13th, Stem Cell Leukemia Transplant Blog: I have 100 plus days since my transplant, what does it all mean?

Lasr week passed me by again,

Unlikely as that was

It could have been a “blast”

But it was so hard!

An epic struggle,

 

Survival was a constant question,

Wasn’t disappointed there,

But  in terms of quality of life (in the future)

Was told to beware

 

Very disappointing,

Almost haunting,

Only the exercise of faith,

Will get me through this short disappointing race!

 

Not doing well right now,

Future quality of  life.

More important to me.

Than survival feels right now?

 

Endure I must,

 

Never know where life will take me,

Can’t see the future right now,

If you must know,

But I imagine what I should expect,

And what I want to see,

 

Often leading to bitter disappointments too,

Because of hopes and dreams,

Which we should not have entertained,

Much less sought for,

But it’s the nature of life,

And the and the human condition.

 

 

My mistakes may still be short-term,

Won’t know till I the results are seen,

And like all the rest,

Hope to see the truth,

And accept it.

 

Much better than expected,

Sweeter than anticipated,

Only time will tell,

And time has been kind to me

All for now.

 

In spite of what I say,

Or the pains I express,

This time has still been the defining moment,

Of my entire life,

 

Made me a better man,

That what I was,

Or thought I could be,

And even who I am,

In some mysterious way,

I fail to understand!

 

Wednesday

Just started to eat again. Such pain. I thought I was a dead man this time even though now I am “cancer free”. I’m definitely not disease-free. This whole process has done great damage to me physically. The jury is still out regarding how much of my former strength can be recovered and what I’ll be able to do. I’m very weak right now.

Thursday

That was a poor attempt at self-expression while very sick. Maybe some of what I intended came across?

There have been some very difficult days this week but I’m feeling very different today. So much better. It’s hard for me to believe that I’m the same person that I was on Monday I feel so much better today. If I can eat well and exercise today and tomorrow maybe I can get out of here. I eat so much better at home.

Need to be able to walk too. If I can “stuff” my brace perhaps I can get the right “angles” that I need to be able to walk enough to make a difference?

Friday

Tried fixing the brace. Worked reasonably well. Both my appetite and my strength are coming back. Feeling better is a relief.

Saturday

My brother arrived today from New Mexico with his wife Susan. Should see both of them tomorrow. Looking forward to it.

I’m fighting foolishly with the staff but I am definitely feeling stronger again. All this give me more hope.

Sunday

Scott and Susan came and saw me today. It was great to see them. I’d love to see them with  prospering more than they are! They’ll be back tomorrow. Time to publish. Good night! This was a happy day! Should be going home on Wednesday!

 

 

 

 

10/18/15 Sunday Night Weekly 10 PM Stem Cell Transplant Blog: Slow but definite progress day by day.

THURSDAY

Can’t believe it. Lost another blog on WordPress. I don’t have any idea of how that happened! I am so frustrated. The stuff I wrote wasn’t bad either.

Think I need to find a different way of publishing. I can’t afford to keep losing my material like this. Whether or not I did this to myself, there should have been some system of failsafes that would have prevented me from doing this to myself. That’s providing I did it to myself.

All in all, with the exception of losing my blog, this has been a pretty good day. My blood work looked very good this morning. Apparently, in spite of the difficult days, the graft is taking well with a minimum of serious problems. Knowing that is very comforting because I assumed all of those problems I’ve been having were indicative of more serious problems. But they’re not.

I’m feeling much better today as well. I feel is like I’m living on a pendulum. One day I feel good and the next day I feel sick and I never know why. Apparently, that’s less important than what’s going on with my blood chemistry. Still I’m happy that things are looking good. When I start to feel better consistently that will be a real plus.

It’s beginning to get cold. We’ve had a wonderful Fall so far. I’m so glad I got out of the hospital in time to see these beautiful days.

I want to be able to start looking forward instead of wondering what’s going to happen next. I’ve been able to work three out of the last four days. Not high quality stuff but coherent enough to be useful. I need more clarity of mind and can only hope that it’s coming. The transplant process is very unnatural. It’s hard to tell just how much damage it did to my body as well. I think I’m seeing some of that.

FRIDAY

It was a better day today. Didn’t have to go to the hospital today so I slept in. Felt very rested. I got some work done. Not nearly as much as I wanted to do but, in the process, forgot to eat breakfast which, for me, is definitely not a good idea. I can’t afford to lose any weight.

It was a little bit cold outside and it felt like Fall. It was a great day to take a little trip. For me to do any serious work I need to have a clearer mind (for longer periods of time) than I have yet had on a regular basis. Hopefully, that will come soon. I’m about half way through my stay in Buffalo.

Thank goodness for this place where we live. It makes our confinement here so much easier! We are so fortunate. I have hospital appointments tomorrow. Sunday we have off and we’re going to church. Tomorrow’s another day.

SATURDAY

I’m alive! I’m still here! Why am I so surprised? Doesn’t matter. Today I’m delighted that, in spite of all of the difficulties and dangers of the last year, I am still alive. It’s been a long thirteen months but, I’m pleased to say, I’m still here.

You might ask: “What brought that on?” First of all, I’m feeling pretty good today. Secondly, I have a report on my blood chemistry in my hands. White blood cells normal. Hematocrit low. Platelets very low (44). Red cells high. ANC normal. With the exception of the platelets, I’m very comfortable with what I’m seeing. Of course, low platelet numbers are what got this whole party started in the first place. Today may be the first day since the transplant when I don’t “feel” as though I have a dread disease. I’m feeling like a man with a future.

Went to the hospital today. It was a cold day but the wind was absolutely piercing. It portends an absolutely fierce winter once the temperatures drop. I don’t know where the wind is blowing from but I suspect it’s one of the lakes (either Erie or Ontario). That wind, if it’s consistent, would make it colder than Adams.

With the leukemia, each time I received chemotherapy successfully (and they were all at least marginally successful), I felt as though I had received a new lease on life. It was a short-term lease, to be sure, but it was a new one. Now I’m beginning to feel that, with the transplant, I have a new lease on life of the unspecified long-term variety.

My hair is coming back. Will it come back again this time with the full range of colors that it had last time? It came back red, brown, black, grey and white. (When I first got leukemia my hair color was pure white). Only time will tell on this. I’m hoping for more of the same. That was one of the nicest surprises that I’ve had since the start of all this.

SUNDAY

Went to Church for all three meetings today. It felt good. It may have been the first time in a year that I’ve made it to all three of my meetings. This ward is the size of a branch but it is very comfortable. Very easy to attend. The members are very friendly. We were very fortunate. We ended up with a great apartment as well as a great Ward to attend. However, because I slept in, we got to church just barely too late to take the sacrament. I’ll have to do better next week.

Gradually getting colder. Last year about this time, I had either just gotten back home after my first round of chemotherapy or was about to. I remember just how cold I was all of the time. I’d lost so much weight and all my hair. Losing the hair mortified me. Looked so much goofier (and older) without the beard. It would be awhile before the hair would come back.

The lost weight was tragic too. When I was a boy I was exceptionally skinny, constantly picked on. When I finally approached normal weight I was so happy. In regards to that, the first time “tragedy” struck was during my mission when I became very sick and for many years,my weight was very low again. I hated it but there was nothing that I could do about it. Gradually I gained the weight back again. And now, here I am, looking “Gollumesque” once more. I don’t like the memories that looking like this evoke in me.

More importantly, I am glad to be alive. I’ll be even more pleased if I get to be (and feel) productive once more. I’m hoping to be able to regain enough strength and the means to be able to do many things again. At any rate, I need to find that sense of being productive again. I suppose I won’t get to see what that means until I achieve it.

More next Sunday, October 25, 2015

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: 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 + 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 replacement blog, Day + 24. Getting ready to leave the hospital. (Going home comes later)

It’s a new day, but very early in it. Couldn’t sleep because there was far too much pain surrounding the face mask for my CPAP.  And I was so tired! I’m thinking that my skin may be the main expression for my host versus graft disease. If so, I hope to be able to find work arounds for the obvious problems like this!

It’s almost 5am. It’s the time that the hospital starts to come alive to meet the next day’s labors. I need to sleep more. They’re coming in to take blood and infuse me.

Now I can see that I really don’t know if I’ll be getting out of here on Tuesday, Wednesday or Thursday. We already hit the switch and we’re moving forward. This may end up being very inconvenient. I hope not. This sudden move towards discharge came as a shock and a surprise to me.

Never could find those dreams that I wrote up. I’ll try doing them again.

Some time had passed since the transplant, probably one or two days. We were walking in an almost deserted landscape. There was a family in front of me nervously looking around an abandoned vehicle. They had a couple of young guys with them whom I could only describe as military or enforcer types. They were very nervous about something (or someone) in front of them. They didn’t say much to me but they were displeased by my presence with them.

Looking at them, I could see that they were well-established middle class type people. Ironically, they were living in a starter home, below their station in life. After watching the street for awhile, they went back to their home. I went with them.

That’s when their frustration with me exploded. The homeowner, a fairly big guy, came over to threaten me. After he was done, one of the young “security types” came over to make a similar impression. He even tried a couple of moves on me to impress me with his prowess as a fighter. I wasn’t impressed. Even though there were two of them (and I’m 69) I had the feeling that I might be able to take both of them. Remember, this was a dream! So I left, with the knowledge that I wasn’t ever supposed to come back but I didn’t feel very intimidated.

So much for that dream. Now we’ll get to see what today brings. I have my morning blood counts already. My WBC is at 2.56. That’s not shabby.My absolute neutrophils was 1.89. It had to be at 1.75, at the very least for me to be eligible to come home (get out of the hospital) on Tuesday.Looks as though this is going to happen.