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!

 

 

 

 

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: 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?

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!

TRANSPLANT DAYS 4-6 BLOG

Wasn’t being lazy,
Discomfort driving me crazy!
Almost took me to the ICU?
That’s something that I’d rather not do!

Anyway, better today,
(Not yet ready to rock and roll)!
But I can write a bit,
And have some idea of what to say!

Won’t be writing a great deal today. Haven’t eaten and my mind’s not clear. I’m sure the chemo didn’t help but neither did all the “safeguards” put in place. The lasiks caused diarrhea, urgent urination, and nausea. The nausea caused pain, vomiting, and other stuff. Eating caused all of the above so I’ve done very little. I’m hoping not to experience anything that severe again but I know better that to count on it.

According to the stats, I have about a 70% chance of surviving the process, and according to my doctor about a 50% chance of a total recovery. I’m relatively strong and healthy so I think my prospects are good.

In some ways, the first four days last September, stand out very clearly. I had no idea that I was sick. Other than being a little bit tired, I didn’t notice any symptoms.

The only reason that I’m alive today is that I had an appointment for a periodic checkup. If it had not been for that, the leukemia would never have been discovered in time to save my life.

Still wasn’t admitted to my leukemia hospital by Wednesday morning. Platelet levels were around 8k and dropping. I was just beginning to feel physically stressed. And, I was beginning to feel concerned. It was hard to believe that, if, I had leukemia, it wouldn’t be a more critical issue than a respiratory infection?

During this entire period my doctor, Jason While, had been actively campaigning to get me transferred down to Upstate University. He was able to enlist the head of Oncology, Dr. Bernard Poentiz to get me admitted.

An arrangement was finally made where I would check myself out of Samaritan, travel to Syracuse (a journey of 70 miles), where Dr. Poeintz would examine me and admit me to the Oncology Ward (where he is the Director). When this took place, my platelet levels were at approximately 2k.

It’s obvious to me, that something there was that definitely wanted me dead but that, even more strongly, there was a force at work keeping me alive in spite of the difficulty and the unlikely circumstances. Once I later learned the extremity of the situation (and how many different ways I could have died), I came to have no doubt but that my life was preserved!

More tomorrow (hopefully)?

Transplant + 3 Blog

From what I write, and the way I describe the process, I don’t want anyone to think that I’ve received anything less than excellent care. Because I have gotten the best (when I’ve gotten care). The process, for me, is just very difficult.

Today was hard. Got caught by surprise. Didn’t know that they were planning on giving me two additional days of chemotherapy starting today. I was especially surprised because I’ve already received my stem cell transplant. So I asked the medical staff the reason.

They said it was to keep the new stem cells from “mixing” with the dying blood cells.Too early for them to start attaching or attacking anywhere. The chemo is being used to “shock” them into submission. From that I assumed that the dose would be considerably less potent than before. On the contrary, they told me that it would be approximately 25 times more powerful than the previous chemo I’d received before the transplant.

While that should definitely kill off my remaining blood cells, I wondered about the transplanted stem cells? Told me that it doesn’t affect them at all! I asked why and they told me they don’t know. It just works that way!

There are many side effects to this process. Huge amounts of liquid are given to keep my organs from being poisoned. That means going to the bathroom as often as every 15 minutes for hours at a time. No chance to sleep and just generally uncomfortable.

Once again to the back story!

The only reason that I’m alive today and survived leukemia ALL is that I got a blood test for an appointment with my GP for a periodic checkup. If it had not been for that, the leukemia would never have been discovered in time to save my life. Leukemia ALL can kill in as little as four days.

Took the routine blood test on Monday morning. My doctor called me about the lab results and asked how I was feeling? I told him not bad. He said: “You’re not doing well! Your platelets are extremely low. In his second call he indicated that I had leukemia. I protested. I really didn’t feel sick. He told me to check into the local hospital. Even though I have excellent insurance, I didn’t want to go in because I was afraid of being charged for an unnecessary hospital visit.

When Dr. White spoke to me on Monday afternoon, my platelet count was about 40K? Normal is around 150K. The rest of my blood chemistry was falling apart. By Tuesday morning, I was able to convince myself to go into the local hospital in Watertown. When they checked my platelet levels, they were at 20k. I was beginning to feel weak.

I was only in the local hospital for transport, not treatment. I was supposed to be transferred to a Syracuse Hospital but the hospital wouldn’t take me! They had an influx of respiratory patients and were overloaded so they refused to admit me. My platelet levels were steadily dropping.

Still wasn’t admitted by Wednesday morning. Platelet levels were around 8k and dropping. I was beginning to feel physically stressed. They still refused to admit me! At that point I was more than concerned, I was scared!

During all of this, my doctor, Jason White, never stopped actively campaigning to get me into the Syracuse hospital in spite of their bewildering refusal to take me.

More tomorrow!