Sunday Night Stem Cell Leukemia Transplant Blog, November 22, 2015 Trying to express my thoughts with a clarity that I often lack.

Monday

Arrived here at this apartment on the 28th of September. My wife, Lynne, has had to take care of me. She prepares my pills (about 30 a day), makes sure that I take them and gives me my Tachrol (which controls graft vs. host disease). She also prepares most of my meals. She’s responsible for seeing that I do what the doctors’ tell me to do and that I remember and go to all of my appointments. I can’t explain the process much better than this.  In other words, she takes care of me. She’s been so diligent! I’m very thankful. She’s shown so much dedication! She’s been a blessing to me for certain.

I have a number of medical tests and appointment tomorrow. Hopefully, they will reveal what the problems are which are holding me back right now. I need to be able to eat and to regain my strength. Hopefully, someone will be able to help me understand the best way to do this. I have to learn what I need to do to begin eating again. Definitely losing strength. Can’t afford to lose any more weight. I don’t understand what’s happening to me.

Tuesday

Not eating for me ha reached a critical level. If it’s not already too late, unless I begin to eat as I should now I’m going to have serious, if not critical problems. I’ve got to impress this upon Lynne so that she can understand just how crucial this has become (although there’s little she can do about it). I don’t want to go back into the hospital again. Don’t think I could handle it. I want to get some “jasmine” rice because I know that I will eat it. Hopefully, my new prescriptions will help make it easier for me to want to eat.

Wednesday

Yesterday was a day of testing for lung and heart problems. The only results that I got back were for my breathing capacity which has diminished by 50%. I was given inhalers and antibiotics with which to deal with these problems. Just using them today I feel better than before. I was able to eat a modest amount of food tonight. It felt good after not eating more than a bite or two at dinner each evening. I’m relieved. I’m beginning to think I’m going to get past this, heal and go home. That, at least, is the plan. Tomorrow, in addition to blood tests, I’m having a bone marrow biopsy. We’ll see what progress I’ve made. I just want to go home! More tomorrow.

Thursday

Discovered that I’m not very good at this kind of “documentary” blogging. If I blog in the future, it will have to be on other topics about which I feel more passionate and committed to. Had to cancel the bone marrow biopsy because I wasn’t healthy enough to go through with it. I’m very uncomfortable. This is really disappointing.

Friday

Haven’t been able to keep up with my medicine. Yesterday was way too hectic. Today I need to do it right. What a struggle the last few days have been. How fragile my mortality is has become more and more obvious. Talk about uncomfortable! I’m so weary of being sick constantly! Makes me wonder if this ever ends? Where does the courage come from that it takes to live?

I’ve had many insights into who and what I am. I am by no means, necessarily, an “evil” person, someone who seeks to do the wrong things and delights in it. On the other hand, there are definite limits to my virtue, and vision, and desire to do the “right thing” continually. I try but I continually fall short. I’ve made many mistakes, some of which have had long-term consequences for me and for others; especially my family. Looking back at it, I would have hoped to have done better, much better. Instead, I became blinded by my own pain (or shame) which allowed me to pursue a path that was damaging to myself or others. I can describe it but I can’t excuse it. I wish I had seen it earlier and made a more genuine effort to correct my path. I see my responsibility and my guilt in these things. How do you make right what you’ve done in the past in the present? Especially when those who were injured, don’t want to forgive you?

Ate a little bit for breakfast. Still struggling to eat. It’s a real problem. Had one scoop of ice cream. Was able to tolerate it. Still struggling. I’ll get all of my pills down tonight! I think that I’m getting a little bit better?

Saturday

What a week this has been! I’ve been so sick, at times, that I wondered if I was going to make it. Couldn’t have been much more distressed or depressed. Can’t really talk about my anxiety without causing problems. I’ve tried to have courage throughout this whole ordeal but I find that it’s “slip-sliding” around and not easy to maintain. There’s a price to be paid for every day. Hopefully, I’ll be able to eat today? Going to try some Jasmine rice as soon as it is ready. At least I’m up early enough to make sure that I get all of my medications taken care of before the end of the day. It seems that I take at least 30 separate medications.

It’s raining today and will be all weekend. Lynne is worried about the rain turning into snow while she’s traveling to and from Oswego on Sunday and Monday. I’m not too concerned yet. This will just be a dusting. Later on will be different. This is probably the most treacherous snow area in the country but, usually, not until after the first of the year. Last year was a very remarkable exception.

Woke up very early this morning. Went back to bed and slept for an additional 5 hours. Feel a little bit better. Can’t believe that I slept that long!

What a miserable week this has been. Don’t know the nature of the problem exactly but I was miserable. It was so bad, I feared for my life. I’m certain that I’ve been this sick before since I had leukemia but I can’t remember ever feeling worse. Because of weakness, I’ve been in danger of falling all week long. Had to be very careful all week.

It’s miserable when you can’t eat.  This seems to be passing. Feeling quite a bit better right now but still very weak.

I’ve been very concerned about Lynne going to Oswego tomorrow for my daughter-in-law’s concert both because of the condition of the car (very old with a check engine light on) and because of my deteriorating condition. Those shadows are being dispersed. Is it a renewal of faith or an improvement in my health, or both? It’s all going to work out. I’m thankful for that reassurance. I have an appetite again and it’s regular if not very strong right now.

Sunday

Sunday morning came without warning,

Arriving far too early,

For thoughtful reflection to occur

Need more sleep,

And some of that deep.

To maintain strength and integrity.

Right now I’m too weak.

 

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 Replacement Blog: Learning, growing, overcoming the fear and the pain. Life in the slow lane.

Here we are again. Standing safely on the shores of mortality. Listening to the waters of eternity endlessly swirl quietly beneath our feet as it murmurs almost incoherently about the inconsistencies of mortality. This will never cease until, once more, mortality is replaced by the serenity of immortality (which always has existed).

We made our second trip away from the guest house in order to shop for groceries. Five minutes from here we encountered a very interesting ethnic “supermarket” featuring a host of fresh fruit and vegetables from (primarily) Central America. What a neat place!

The neighborhood that it’s in is like a bay at the confluence of several very different rivers each with entirely different characteristics. Part of the area is subject to gentrification and that is represented by a fair share of middle income professionals and medical students. there is an Asian influence as well. I believe that these groups are from SouthEast Asia, maybe places like Laos or Cambodia. There is a substantial black community there as well. But, perhaps predominately, there is a bewilderingly diverse Latino influence probably primarily from the Caribbean. It was a crowded, noisy, fun place to shop. I know I would prefer to shop in a place like that. It was a big store rivaling, in size, some of the supermarket chains. This market is also a chain but of a local variety.

I’ve just begun to deal with my “affairs” again. There is quite a bit for me to deal with. I didn’t realize, even before my admission to the hospital, just how much I had been distracted. I missed a lot of what I should have been taking care of. Fortunately, the people with whom I spoke yesterday have been more than willing to work with me. I don’t know how I could have missed some of this. There are so many “psychological” and “emotional” side effects of illnesses such leukemia.

Every day I’m a little bit stronger than the previous one. Still, it’s a struggle to take care of my minimal needs. I’m amazed by just how much my strength was reduced in the last few days in the hospital as a result of my low activity level. I should have been more diligent but it was very difficult because of the contradictory demands of hospital care. I still can’t figure out how to take Lasiks which leads to almost uncontrollable diarrhea and urination and, at the same time, work out dilgently. Medical staff can’t explain it to me either in any way that I can understand it.

I need to get control of my affairs again. The process has just begun. We’ll see what happens next!

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!

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!

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?