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 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 “Ramble”, a blog about overcoming leukemia one stem cell at a time!

My blog is an attempt to communicate thought and feelings about my experience going through the healing process with Leukemia. I’m not sure but I don’t feel as though I am able to do this very well.

I need a certain amount of energy to communicate effectively to other people. I’ not feeling it. I don’t eat because I’m not hungry. I’m not hungry because I don’t sleep. Then the process repeats itself all over again. If I could break though on the sleeping, and get the rest that I need, everything else would fall into line as well.

Having leukemia for me has most often been a process of being continually tired. When it gets this bad, I don’t have any understanding as to how I”m getting that tired. Can’t even remember what happened the last time I felt like this. Can’t remember anything very well right now! What happens next, why and how?

I’ll be getting a bone marrow biopsy today. It’s terrible test. I both remember it and I don’t That’s because I’v had it with both the drug that makes me forget the results and the without it. I know that it can be incredibly painful and takes about 15 minutes. I also know it’s the only way we can tell whose stem cells are repopulating my bone marrow. They could be mine or the other guy’s. The could belong to both of us. Frankly, with the massive effort they put into killing my bone marrow off. I find it hard to believe that any of  mine remain. And, on top of that, the recover patterns are entirely different this time than when they were mine.

Now that you’ve heard my entirely unscientific evaluation, you’ll get to there would really happened in about a week.  That’s about how long it takes to get the results back. I slept a few hours since I last wrote so I’m feeling “okay” right now. I’m lucid. I can’t say how long that is likely to continue. Every time I’m about ready to give up, something happens that makes me capable of living with all the pain and the problems. I feel very fortunate in that. How I want to get out of here! Hopefully I’ll know more on Monday.

Even though I’m miserable today, I am glad to be alive. I would hate to think that I had wasted all of this for nothing’ although I no know that even “nothing” can be so much more than we can imagine. This is definitely one of my hardest times during this entire recovery process. They tell me it can get much harder before it gets easier. They’d know better than I would.

The bone marrow biopsy was the hardest that I remember having. Uncomfortable before, during and after. I think this is the third but it may have been the fourth biopsy I’ve had. I’m not 100 per cent sure. Downsizing the line was no fun either but the process was more familiar to me. I’ll be very happy when, and if, I don’t have to do any of these things any more.

Well, this day’s over. Hopefully,  Tomorrow  will be better!

More tomow

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!

Transplant Blog: 11-12

The mystical: Beginning and end of life. Where does one begin and the other end? And we know this for certain how?

It’s not my intention to deal with such imponderables as these. I’d rather deal with the intersection of everyday life with them. In other words like now: I just found out that my best friend while growing up had died! Why is that important? It just is!

Although we lived all over the country at one time or another, when he died he lived within 50 miles of my home! What a pity! Death, the great equalizer!

While some people believe the guy with the most toys when you die, wins! I think most of us see beyond this too!

Life is so precious. To think we lived our whole lives (after 40 yrs. of age) without even speaking to one another!

Joe was 3 months younger than me. He had a good career as an architect. Before that, during Vietnam, he was a Marine who had the good fortune of sitting the war out in Hawaii. He had some interesting stories about Hawaii! He never married. Don’t know how close he ever got to it. From what I saw of it, probably not too close! But, we never took the time to find out. Sad!

The last couple of days were mixed reviews. I can see definite changes coming that will really impact my circumstances here! Although I’ve been disappointed twice, I sill suspect I’ll see an upward bump in the white blood cells in the next couple of days. Looking forward to it. Don’t want to be disappointed again! Close enough to the changes to be disappointed if they don’t come right away!

Keeping this blog undated on a daily basis is going to be difficult because of my constantly changing circumstances. It’ll be a quite a challenge but I’ll try to accomplish it! In terms of my health, I’m doing well. I’m looking forward to getting some control back over my life. Don’t know when or how that’ll happen. Birthday plus 12. I’ve been here for 19 days. There’s no change now that would be too soon!

Hasta la vista,
Tal vez,
Hasta Las Vegas,
O cualquier lugar asi!

Un mundo nuevo,
Hasta que la viera,
Otra vez,
Hasta nuevo,

Me entiendes?
Ojala que manana,
Me muestre algo de nuevo
Como pasar la tarde contigo!

Thanksgiving

An empty purse

Can be such a curse!

When your stomach is empty

In a land of plenty.

Our sustenance is a delight!

If our hearts are right

We see and we care

And we willingly share.

Now let’s change the mood

Because it’s not about food

When you give your best

You won’t worry about the rest.

When we give what we’ve got,

Whether a little or a lot

Our lives will be blessed

Because we’ve passed the test.

Happy Thanksgiving!