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 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!

10 PM Stem Cell Replacement Transplant Blog. Replacing leukemia one healthy stem cell at a time!

Another day passing by me in a blur in front of the reviewing stands. Haven’t been able to focus on anything clearly for the entire day.  Days like this are very troubling because, in the back of your mind, you can’t help but wonder if they will ever end? Who and what am I? It reminds me of those fever-filled days as a child where you couldn’t really think. All things feel both familiar and unfamiliar at the same time.

I do need sleep! No doubt about that! I’d give a lot to be done with all of this! The weather has been nice. The sun has shown all day with a few clouds hanging in the background.

I want to have my life come back more into focus that this! Stayed close to home all day. Don’t know why. Just walked 1/2 mile. Feel much better now! Don’t know why it works this way?

My blood numbers came back a long way today. White Blood Cells at 4.01 and I believe my the ANC was at 2.73. Just to know what to do in terms of those alone!  Once those numbers become predictable, may of these strange symptoms will simply be in the past!

I want to get out of here so badly that I have difficulty in describing it. To have freedom commensurate with my strength will be w wonderful thing! Good night all!

More tomorrow!

Stem Cell Transplant Blog, 09/21/15. Day +25. Improving 1 stem cell at a time !

What happens today will determine when I’ll be leaving the hospital. As we closed down, the house, I thought it was more or less set in stone but not so with the hospital. They look at it very differently. Everything is conditional and they hold those decisions to be their own right up until the last possible moment. So we don’t know what’s going on yet but I should leave here around the middle of the week.

The weather is good out there. I hope to get outside while I can still enjoy it. Plus, my wife will be coming up to live with me for 90 to 100 days and my younger son will help her bring our belongings up here. At least it will be a distraction from what I’ve been doing here.

Boy, was I wrong!I won’t be getting out for at least a week. Lynne had everything done and ready to go, but fortunately hadn’t left home yet when I called her at about 12:30 pm to tell her that my release wouldn’t be coming. I thought it would be worse but she took it better than I did!

This mistake, and the casualness with which it was done, is, perhaps, the most offensive thing that has happened to me in the last year of hospital visits, treatments and therapy. It’s going to take me awhile to get over this! The crisis and the emotions surrounding this have erased any sense of personal progress that I felt prior to this because I know I’m not handling it well.

The apartment has two small bedrooms, a bathroom, a kitchen and a living room as I remember it. Probably has a small living room as well along with a tiny washer-dryer room set up. It’s more than minimal and that’s not shabby.

I can see the importance of writing down dreams and inspiration as quickly as possible. When I haven’t, as in this case, they start to fade quickly. Dreams are deep in symbolism which is usually most obvious during the the first 24 hours. Waited way too long in this case. In spite of that, there are still impressions that can be gleaned from it! There are times when dreams may be of great importance and other times when they’re not. In order to carry any information that’s useful, they’re always deeply symbolic.

In this dream about the transplant, it took place was a little bit later than the last one. Maybe a week or two had passed. All production had ceased. Nothing was going on. So, we decided to assess exactly what was happening. There didn’t appear to be much, if any, damage to production facilities. The workers had simply left and hadn’t come back. While we were making this assessment, there was a commotion. Another group had entered the facility from another direction. Rather than confront them directly, we decided to simply leave. We didn’t know who or what we were dealing with at that point. We made plans to come back again within a day or two to get started.

More Later!

10 pm Stem Cell Transplant Blog: +Day 22, Replacing my Leukemia With Stem Cells 1 cell at a time!

It was beautiful this morning to watch the sun come up! Unfortunately, early morning comes with a price and that is a sleep deficit for the night. I’m tired again today. Wish there was an easier way to do all of this. I live in this fog from lack of sleep about half the time, oftentimes due to circumstances beyond my control!

The nurses’ understanding of my sleep problems is limited. It’s no longer ordinary apnea. In my humble opinion, I really didn’t need to have this problem now! Apparently, I require more care for my apnea now than most patients. For most patients a CPAP is sufficient. That’s no longer true for me. I need additional monitoring or I may not wake up to begin to breathe again.

My blood chemistry improved slightly on it’s own again last night! I’m definitely in the healing process. Now they’re going to begin to stimulate the production of white blood cells. I’m looking forward to it.

I wanted to get back into the “meat” of stem cell transplants again but, to do that, I have to have clarity of thought. To have clarity of thought, I need to be able to sleep at night. With a little more sleep, I should do much better.

My primary goals are very simple. I want to see both of my boys married and married wisely and well. I want to have an influence in their lives for the better. I want to know all of my grand children. I would like to see my wife develop her considerable talents. I want her to be able to concentrate as much of her time on her family as she desires to.

Next I have desires to develop my writing talents fully. I stopped writing at about the age of 15. Got back into it at about the age of 65. I want to do all I can do with it. I may have more of a gift than I realized when I so casually decided to pass it by in favor of other things which were of lesser importance.

Finally, I’d like to make a difference in the world. First, I’d like to see a comprehensive immigration reform bill that makes a fundamental difference for the people most affected and a positive impact on this country. Secondly, I want to see the Tea Party stranglehold on meaningful political activity in this country completely broken. I’m neither against true conservative politics nor liberal ideas but I am opposed to recklessly destroying our government which, in spite of all of its defects, still has the best constitution in the world.

More tomorrow!

10 pm Stem Cell Transplant Blog: +Day 17, Replacing your Leukemia With Stem Cells 1 cell at a time!

Hi folks! Here I am again. Still trying to figure out WordPress! Still trying to understand the things I’m dealing with. I was too sick yesterday to write very much and I couldn’t understand why? Confusion is a constant problem for me! Put that together with the memory problems and everything is a challenge.

Yesterday, I inadvertently published “The Pain” while trying to get the blog ready. Sorry. I don’t know how many people got to see it so I’m publishing it again today. I was also going to talk to you about some dreams I was having.

So far, I’ve written up the dreams but not necessarily the CRITIQUE (or not very well).

No sooner did the transplant start than I began having unusual thought and feelings?
Although the sun was shining outside, my impression was of a rather overcast day. Upon walking into a large hall, we were confronted by a large gathering (1,000s), all mingling together in a festive occasion. Such as a family reunion or a birthday party! I was like an honored guest or master of ceremonies (something akin to that).

It was meet and greet,everyone was having a good time. In this casual atmosphere.
I thought that I saw some people whom I knew or, perhaps, was related to! When I went up to meet them they were friendly enough but they chose to distance themselves just a little bit from me.

The harder I looked at them, the more difficult they were for me to see! Finally, focusing on them as hard as I could, their faces and upper bodies were blocked (like a license plate for a TV show or a movie). Didn’t know what to make of that.

The party ended. In what appeared to be several hours later, I saw some similar creatures which had embedded themselves under the concrete foundation outside of a very large building. They appeared semi-conscious or confused. It was a security situation.

They began to attack. There were only a few of them and many of us so they were easily brought down. Still, those were vicious attacks. These were the only signs of conflict during or prior to the transplant.

Shortly thereafter, in the same dream, we could hear a large group of individuals approaching us from the distance. This was the transplant itself. They were disturbed and angry. In the light of the torches (yes, torches!) I could see them more clearly than before. Their upper bodies (if you could call them that) were gnarly and when challenged or angry, opened up, looking quite a bit like teeth or spikes. But, as I mentioned, they were a semi-organized group still a considerable distance away. That’s where the first dream ended.

THE PAIN
All rights reserved. Copyright Bruce M. Goewey

Pain,
Returns again,
Distills my thoughts,
Gives sight to my grief,
And purpose to my guilt
Requires me to exercise faith,
I’ll find relief again.

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

It’s a vision
Reminding me of who I am,
And what I’m meant to be!
Both vision and distraction follow me!

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!