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 PM Stem Cell Replacement Blog: Your life redefined and there you are without the definition!

This leukemia, although very difficult, has been a great blessing to me in my life. It’s been a wakeup call highlighting what is important in my life. It’s obvious to me that family is the most important thing in life. I knew that before I got leukemia. Love, as expressed through service and kind acts, is of the essence. I’ve seen some wonderful and selfless service under many sets of circumstances.

When I survive this, and I believe I will, how will this play out? Will everything simply slip back into old familiar patterns or will I find new opportunities and different possibilities? The old question of “What am I going to do when I grow up” keeps raising it’ ugly head.

How do you decide it’s what you want to do unless you know what that is? Starting over again, regardless of your age, is a daunting prospect. Yet, with leukemia, and other life-changing and traumatic illnesses it happens all of the time. Worst part of it all, you never know for certain, whether the disease is coming back or not?

I suppose the only answer to the last question is to simply to accept each day for the gift that it is. For me, the remainder of those issues are open to examination. Personally, I know that I need to write.

I chose not to write for many years. Now, I’ve reached a point where writing has become a compulsion for me. The raw talent is there but I never developed it to the extent that I might have. I have a lot of catching up to do if I intend to pursue this course seriously.

I already know that my writing has some commercial value. I’ve seen that already. I suspect that will remain more or less static unless I can boost my production levels and showcase my skills in more lucrative markets.

I enjoy writing many things. Sometimes I’m a gifted (although very impatient) poet. I write philosophically and politically as well.

I was surprised to find just how much I enjoy writing tweets for twitter, especially political ones. Don’t know what to do with that. Is there an avenue to be pursued there? Then, there is also the issue of time. How much time do you have left to pursue you’re passions? How committed are you to what you want to do? Is it really as important to you as you think it is? Those are the questions to which, at present, I have no answers.

Writing this blog is an experiment. To do it right, requires a balance and dedication that I’ve been unable to replicate on a continuing basis. I want to be able to document what happened. In spite of that, I get sidetracked very easily. Some of that may be the leukemia (chemo-brain) and the rest of it is probably personality.

The most important role in life appears to be service through self-expression. All of us have a need to add value but we all have a different idea of how to do this.

More tomorrow!

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 Transplant Blog: +Day 15, Replacing Leukemia Blasts With Stem Cells: 1 cell at a time!

My plans for today were to write about writing poetry and relate some dreams that I had lately in connection with the leukemia bone marrow transplant. It didn’t turn out that way.

No sooner than I got up this morning, I began having problems with energy and focus. I became torpid and slow, approaching a state of semi-consciousness. Took me all day to edit and organize the little bit you’re going to see here tonight. This may be the most frustrating part of being sick. Need to be more patient. In a couple of weeks most of this will pass as a matter of blood improvement. Speaking of which, still no sign of any new white cells being produced. I’m totally unprotected now. Have been for a few days. Probably will be for a few days more.

Just lost my entire post again for the night. Got it back. WordPress is more difficult to work with than Word or Google docs when it comes to recovery! I’m spooked. Gonna quit for the night. Hope you enjoy the poem on pain. I’ll explain more about it tomorrow!

THE PAIN

Pain, Ω
Distills my thoughts,
Gives sight to my grief,
And purpose to my guilt
Requiring the exercise of faith,
So I’ll find relief

Pain,
Again, overwhelms my senses,
Tracing the outlines of consciousness
Like a dull rusted blade,
With conciseness,
Touching the conscience of my soul,

I’m a portrait in pain,
I’pm a pale-vision!
Reminding me of who I am,
And what I’m meant to be!
Both vision and distraction follow me!

More (and better) tomorrow!

Stem Cell Transplant Blog: +Day 12, Replacing Leukemia Blasts With Stem Cells: 1 cell at a time!

Here I am again. In spite of my doubts about my ability to write consistently or spiritually enough to be of benefit.

Have heard people comment that you have to be brave to do fight on. Really, you don’t. You just have to be here. You might ask, how can that be?

Well, it’s like this. There’s this mythic beast bearing down on you. You can’t escape it or overpower it on your own. It knows no fear, only yours! Left alone, Leukemia All will kill me. It will do it with my own strength.

So, I do this:(Figuratively)

I run at it screaming with whatever weapon I can lay my hands on. When I reach it, I do it whatever possible harm I can (virtually nothing).

Then, when I have nothing left, I collapse and the leukemia goes back to regenerate itself with whatever resources I have left.

What I provide is a willingness to keep on trying. I’m thankful to be able to do it. It’s the only act of defiance that remains to me. The irony of it is that leukemia’s lethality is me! Whatever it does to me, I’ve actually done to myself! Couldn’t get much much frustrating than that!

Having said all that and beginning a cancer blog negatively today, let me say this! In so many ways this is the greatest experience of my life and I wouldn’t undo what has happened to me up to this point. It’s a mixture of spirituality, pain, anxiety, and incredible faith-inspiring experiences! And, as I’ve said before, this is perhaps the best of all possible lives for me. I expect to outlive the leukemia but not because of any virtue that is in me!

Stem cell or bone graft infusion is your best bet. I believe it works for most people with a good chance of total chance of recovery for many!

That’s the good news. The bad news is that pursuing this fight can be an incredibly uncomfortable process. They say this whole thing works better for younger people. I hoe they’re right.

First thing this morning I picked up the wrong blood labs. It looked as though my stem cells were working! Turned out, I had picked up my labs from when I was admitted. Yes, I was crushed! Still showing zero on white blood count. That’s anxiety producing.

I just noticed that my niece Katherine hasn’t been in to the hospital to see me today. Too bad, because I miss her! Haven’t had the chance to see her for quite a few years!
I want the opportunity to see her parents too! If all goes well, I could be out of the hospital by a week from this coming Sunday!

I’m feeling better. Eating well. Working out Enjoying the people around me. Simple pleasures appear to trump the high life again! Hope everyone has a good night!

Transplant Blog: +8

This is the first day where I’ve had the time and the energy to work on the blog before it was due. When you look back on a day about which you plan on commenting, what you choose to be important depends as much on how hard it it to write as to how important it is.

You want everything you say to have real value but then there is the very human part of not wanting to exert yourself anymore than you have to. There’s always something else, even here, that demands (or more gently asks) your attention.

My father also was a writer who, like me, quixotically, found it very difficult to write. Perhaps having a blog which I hope to put out periodically will help me find the discipline that I need to have?

It has been a relatively serene day today except that I managed to fulfill unbucket list item 10 (oh, the joys of gastric distress!).

Life goes on,
(Or so they say),
I really wouldn’t have it any other way!
There’s that eagerness to live,

That joy of living,
Which connects very well
With a desire to give,
Things both large and equally small

I’ll delve into one background item today:

MY ARRIVAL AT UPSTATE UNIVERSITY HOSPITAL!

With the agreement of Dr. Poeiz, Head of Oncology I was admitted to the hospital after a brief exam. Things weren’t looking good at all. My body was really stressed. I believe that the platelets had fallen to 2k.

Ironically, my mind was fully engaged? I was laughing, joking and interacting appropriately (but unexpectedly) with the hospital staff. University Hospital is a teaching hospital so that I was surrounded by 10 to 15 students, doctors, interns, fellows, etc. at all times during the initial admitting process.

Sometime after that process, as I was being admitted, and joking with a nurse, she looked at me and said: “You know, you look much better in person than you do on paper!”

For all intents and purposes, my platelet count then was essentially zero! As far as she was concerned, she was looking at the case file of a dying person and joking with him! When I looked at her, that’s when I realized just how sick I had become.

More Tomorrow?

Transplant Blog: 7

Here I am 7 days into my new life. Nothing, so far, has worked out the way that I would have projected it to. This day was another “rocky road”. Continuing from yesterday, the medical staff has been a constant struggle to keep the fluid levels up (immensely high) and, at the same time lower them to safe levels.It’s a “catch 22” of their own making but, nevertheless, one which may be necessary for my survival. These have been tough days!

Feeling better again tonight. Signs indicate that the situation is gradually improving. They’re no longer giving me medication to expel fluids and the nausea and the hacking cough is diminishing. Looking forward to a better tomorrow! This fight is turning out to be exactly the fight that I was expected it to be. Not a fight that I really wanted to have to fight! I’m doing what I have to do to survive but not always at first request!

Ordinarily, I’d write more background but tonight I just don’t feel up to it. More tomorrow!