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!

 

 

 

 

11/08/15 10pm Sunday Evening Stem Cell Replacement Blog: There are times when all we can see are the hard things we have to do.

MONDAY

This is a tough day because I’m prepping for a colonoscopy. Talk about misery! Much rather be doing something else. Almost anything else would be better than this. I hope I can get sufficiently prepped that I don’t have to do this again. It’s pretty terrible. Don’t know how I’m going to handle getting over to the hospital tomorrow without all kinds of accidents being possible. Got to figure this out. Want to get this thing done, once and for all!

Talked with the head doctor today. We talked about leaving here in about a month. He was pretty upset with me. Don’t know exactly why but it made this meeting uncomfortable. I wasn’t pleased with the results at all. Nothing was comfortable today. Simply trying to live through the day until things around me look a little better than they do right now. I’m discouraged and feeling misunderstood (whether that’s true or not). The longer this goes on the more brittle I feel.

My blood work was good today. My platelets were the highest they have yet been since the transplant. They were at 67k. One hundred thousand is the minimal normal level. I’m hoping this trend continues. Don’t know if I’m going to get any sleep tonight. How am I going to get to the hospital without having an “accident”?

To sum it up. Mostly good news today accompanied with uncomfortable physical symptoms and the like. Really beginning to want to go home and get out of this roller coaster. I want familiar and comfortable things in my life!

TUESDAY

In spite of all of the frustrations, and the doubts, and similar thoughts and attitudes, I suddenly realized (again), as I have over and over again, that I’m alive and will yet prosper and prevail through means long prepared, but not yet visible or obvious to me. This has always been the case. It’s only a question of faith, long-suffering, patience and humility. The Lord will take care of the rest, as He always has done and will do.

My older son has found a girl who seems to be compatible with him. I’ve been praying about that for a very long time. Have a good feeling about this one. Haven’t met her yet. I think they’re on to something.

The irony of all of this is, and has been, the harder the times are, the more faith I have to apply to them. That’s when I do my best. The easier it gets, the harder the time I have with vision and the exercise of faith. Now that I am, apparently, past the worst of it, the harder it is for me to live with this disease and the problems it causes me. My “vision” is diminished.

This has been a terrible night (coming into morning now). Most things that could have gone wrong with this colonoscopy prep have. There was plenty to clean up to do. Now all I have to do is wait to go to the hospital until it’s time for the colonoscopy to begin.

It’s over now. Let’s hope this is the low point of my whole experience and everything else is uphill from here. I’m so glad it’s over! Last night was miserable! Now, may everything begin to resolve itself and come to an end! Let the healing begin! I’m sure it will happen because I just waved my magic wand! (Meanwhile, back in reality!)

Can’t stay awake. I need to be rested in order to get through the remainder of the day! Don’t know when that’s going to be.

WEDNESDAY

I’m missing the focus I should have in this blog and don’t know how to find it. I wanted accuracy so that I can remember what was happening at the time I wrote it. Unfortunately, that is incredibly mundane. I wanted to talk about important things too. Those two goals contradict each other. And, I wanted it to be interesting. I’ve reached my goals from time to time but not consistently.

I’ve rarely  done all three at the same time. I don’t know what the solution is. This is more like ramblings with some facts thrown in. The other question is just how discrete should i be? I’m confused. I have a great deal to learn when it comes to blogging.

Still don’t have the CPAP pressure change so my machine isn’t working for me very well. It never arrived although it was sent. Don’t know what’s going on. Everything I have done to get that pressure changed over the past year has failed. It’s a though there is a giant hand interfering with me getting the results I’m looking for. No matter what i do, this hasn’t worked out for me.

This needs to happen. Good rest is such an important component of health. I’ll keep trying. I know it was sent but never delivered.

That flash drive with the new CPAP pressure finally arrived a few minutes ago. I have no idea of why it took so long to get here. Put it in the CPAP and immediately changed the pressure to 14. I’m very pleased with it. I definitely feel better although the higher pressure also means that there is a greater potential for noisy leaks. Haven’t figured out what to do about that yet.

THURSDAY

Temperatures will rise up to nearly 70 degrees Fahrenheit again today. It’s so beautiful outside.!This is definitely “healing weather”. I’m loving it! Can’t believe this is November.

Learning, growing, becoming. Doing this in a difficult world working with a clumsy body filled with all kinds of weaknesses. Gollum is my idol and, perhaps, my mentor. Never thought I would ever be that “skinny” again. Went through that as a child. People used to compare me to concentration camp internees. Now I get to do it again. This is so cruel!

On the other hand, I can now claim to be a cancer survivor for a little more the 70 days. Ironically, in all of my weakness (and recognition of it), I am strong. When I’m humble, God is my guide, my shield and my weapon against the perils of this world. I’ve been totally destroyed and yet I am unbeaten. It’s one of the mysteries of this world. You can’t be beaten. You have to give up, capitulate, surrender. It’s a strange life indeed! Very little in our world is as it appears to be.

FRIDAY

This shows my problems with memory. I had something that I thought would be very important to include in my blog. By the time I was ready to write it down, I had forgotten what it was. Being this forgetful is very discouraging.

SATURDAY

Becky and Brian are here right now. They’re touring the hospital with Lynne. Now they’re going over to  PriceRight, our market, to see what it’s like. I didn’t feel strong enough to go to either of those places with them so I stayed home. It’s been nice to have them here.

SUNDAY

Time to publish. Not much more to say. Looking for a better week to come. My chiropractic visit on Friday was good. I was able to get a lot of relief. With just the two times I visited the chiropractor, my oxycontin use is down. This is a trend that I want to see continue. Time to start the new week.

10/25/15 Sunday Night Weekly 10 PM Stem Cell Transplant Blog: Some changes are dramatic but most show up as small incremental differences over time.

Sunday Night

Thought I’d start it early in order to make sure that I don’t forget about it. Looks like the weather for the upcoming week is going to stay consistently good again. This is Buffalo? The place where they had the huge snowfall last year before this date? It’s entirely different this year. Very pleased with the weather we’ve had here since I’ve been out of the hospital. Nothing to complain about at all.

Doing the rest of the sleep study on Tuesday night. People in the Ward were kind enough to volunteer to give me the rides that I need there and back. Lynne is more or less night blind and Rte. 33 is a dangerous road with a speed limit that’s too high for the conditions. I’d drive except for the fact that I’m restricted. I don’t want to run “afoul” of either the doctors or enforcement.

Monday

A new work week. It’s a pleasant day and I’m feeling stronger again. I still have to make a point of eating enough to maintain or increase my weight. Eating heartily still isn’t coming naturally. I don’t like having to pay attention to things like eating. Eating should, naturally, take care of itself.

My blood values on the phlebotomy testing have slipped a little bit but they are still good. Nothing to worry about at this point. Let’s hope that it stays this way.

The dinner prepared by volunteers tonight is a pork tenderloin dish served with wine on some kind. People here are in to their wine! Hope they don’t have to drive.

Well, I suppose I ought to get over there to enjoy a good meal. Hope I’m hungry enough to eat! Too bad, wasn’t hungry but the food was great. There was an absolutely awesome squash soup with cayenne to spice it up. Delicious!

TUESDAY

That was last night. Tonight was every bit as good. We’ve had some wonderful dinners over in the main building. The company can be great!

We  were able to enlist some help with the rides. This way Lynne doesn’t have to make the trip. She doesn’t have to worry about driving and I don’t have to worry about her.

Saw some of the Buffalo waterfront today. There are three former Navy ships at anchor. There’s a submarine, a destroyer and a guided missile cruiser. It was pretty interesting but I wasn’t able to complete the entire tour because I am still weak. Saw about half of it and that was all I was capable of doing.

I’ve just run out of time. Need to start watching for my ride.

WEDNESDAY

Had my sleep study last night. Slept very profoundly. When I woke up I felt profoundly rested. Surprised that feeling didn’t last all day. Within a few hours I was back into my state of being semi-asleep all of the time where, if I sit down in a chair, I’m nearly asleep in a few minutes if I’m not concentrating on something at the time.

Fortunately, I was able to arrange rides both to and from the study. I wasn’t certain that I was going to be able to because I had misplaced the telephone numbers of those folks who were planning on giving me the rides. Thanks to some very patient members I was able to work that all out. Their help has been a great blessing to me. Everything worked out great.

When you’re sick or disabled, little things seem to grow in importance until they appear to be far more important than they would otherwise be. I hope I can get back to normal activity levels soon!

Had some good news and some bad news today. The good news first! I’m going to be visiting the hospital clinic much less than before. I’ll only be going in to see the doctors and the nurses three times each week. We started out at 6 to 7 visits per week. This will be such a relief.  According to them, I’m doing very well. I was glad to hear that.

Now for the bad news. I was in the clinic when my stomach began to ache. It kept getting worse and worse until it was almost overwhelmingly painful. This went on for almost an hour. I had no idea when it was going to end but it went on for about an hour. Don’t know what caused it. Every time I think that I’ve seen it all something else comes along and amazes me with how painful it can be.

Thursday

More good news today. Our 100 days after the transplant (the time we were told we have to remain in Buffalo) began on the day of the transplant not the day I was released. That shortens our stay by as much as 20 days potentially. We could be home well before Christmas. That would be wonderful! And, a little bit sad as well. For the most part, we’re really enjoying getting out of town this way. In some ways (with the exception of the disease), it’s almost like a vacation.

I’m not getting stronger very quickly. I’m disappointed with that. I was hoping for better results. Still, I’m doing okay. Hope it continues this way and they figure out where the graft vs. host disease is manifesting itself and how to keep it under control. Right now it appears to be in my stomach and digestive tract. We’ve also just been told they are going to try to keep us down to 2 visits per week. That will be wonderful! Maybe that will give me time to get some work done?

Got the results back from my sleep study. The pressure is supposed to be set at 14! It’s currently set at 8. No wonder it doesn’t work very well for me! Now I need to take the steps to get it changed. Not certain how to get that accomplished from here.

Friday

Life is an exhilarating experience but we become so used to it that we begin to see it as being mundane. Life is exactly as it was intended to be: A very difficult journey of discovery from start to finish with unending opposition and constant work right up to the end. It’s not something that we always appreciate.

We forget what a great blessing it is and what a wonderful experience. Crises such as my leukemia make that point abundantly clear. Every day in our life is such a blessing but also a challenge of almost equal dimensions. Life is a struggle from beginning to end. It was meant to be this way. Our resentments, our fears and our woundedness come from the fact that we forget this or never knew it to be true in the first place.

Our Father in Heaven is always waiting to help us. Unfortunately, that is an understanding had by remarkably few people. Satan has been extremely effective in obscuring this fact and other essential truths as well. And the world groans under the weight of darkness and sin because of the deceiver’s influence.

People are very worthwhile. Definitely worth the effort it takes to deal with them yet we often fail to see it because of their faults and ours. That’s tragic. We have to do better than that. The only way that I know hoe to do that is to develop an ever increasing humility. Humility permits us to see the good in the people around us and to recognize that we are not in-charge of our lives. There are a few things which we can control in this life and more which we are not. We have a great deal of difficulty in distinguishing which is which. That creates many of our problems.

WordPress can be such a problem is to use. Without even knowing it, I just added on several paragraphs to an older blog while I thought I was adding on to this one. Things like that shouldn’t be possible. Furthermore now I can’t find that blog anymore. It shouldn’t be this difficult to use.

Saturday

My blood chemistry is approaching normal. My platelets are are 66 which is the lowest number that I have. When it gets up towards 100 I’ll feel pretty comfortable with the numbers. The tests tell me I’m healthier but how I feel betrays the numbers. Feeling sick so much of the time is very discouraging. Hopefully it will start improving soon.

Sunday

Went to church today. Generally, I enjoyed it. Three hours is a long time when you’re not feeling well. And I’m not but I know that it could be a good deal worse. Well, that’s it for this week. Now the question is, was this a better way for me to present the blog or worse? It’s hard for me to tell.

10 PM Stem Cell Replacement Blog: A less difficult day.

Woke up this morning. Simply felt better than yesterday. Don’t know why. This seems to be the pattern. Wish I understood what’s going on.

The hardest part of explaining what leukemia is like is that it tends to be very different for various people. I know that I that I’m uncomfortable and it’s unpleasant but how is it for the other people? You can see that they’re stressed by it, but how? How do they cope with it?

I think that we have to resolve, every day, to do our best with what we get. People survive this all the time. The illness doesn’t give you the impression that’s where it’s going. All the symptoms that I get are so unusual that they don’t give me anything to judge by. I go from sick, to very sick and, occasionally, feeling almost normal. I really would like to have much strength and feel it increasing on a regular basis. That would encourage me a great deal.

My blood chemistry today was very good today. Closest to normal that I’ve seen. My stomach is killing me right now. Feeling bloated.

This will be last daily blog. I don’t have enough material to do a good job of this on a daily basis. I’m going to start publishing once a week every Sunday night at 10 pm. It will either be a better blog or it will disappear. Only time will tell.

10 PM Stem Cell Transplant Blog: The good, the bad, the unexpected and uncertainty!

I was doing reasonably well for the last few days and then I started getting sick I didn’t feel well but I couldn’t tell why. This has been going on now for a couple of days. Gradually getting sicker but no idea exactly why. I’m sicker tonight than I have been in a long time. My mind is clouded and almost my whole body is in pain. My back and neck look like a lobster. My arms are covered with strange mottled red marks. I’m having diarrhea about 10 or 15 minutes. Feel as though I’m hung over.

Saw the doctor today. She thinks this is a continuation of the graft versus host disease that started before I left the hospital (at a minimal intensity). This isn’t minimal. realize that it could get a great deal worse. I’m feeling the pain. I’m almost overwhelmed and I know that this is just a “touch” of what could come.

I’m not very tolerant of pain. I was almost overwhelmed today. It doesn’t take long for something like this to break me down. I’m getting so tired of getting sick! Every time I start feeling better then something else comes along.  I’m tired. I’m old. I’m feeling the pain. It’s so hard to keep perspective even when you know you’ll come out the other side of every crisis. Perspective is so difficult to keep. Time to get my attitude under control and get the help that I need to minimize the discomfort so that I can keep perspective.

10 pm Stem Cell Transplant Blog: It’s one day at a time. Two steps forward one step back. Not an easy path!

The Kevin Guest House is a wonderful place to stay. We’re very happy that we were fortunate enough to find it. Being the occupant of an upstairs Victorian apartment is stretching me. I’m barely strong enough to get around it because of my month or so of relative inactivity. At the least, it’s helping me to get my strength back quickly or I wouldn’t be able to get into the house and out and about on a regular basis.

The activity is forcing me to eat because I now have the need for the energy. That’s helping me too. Being active is letting me get tired enough to sleep normally. That part of it is working out well. These are probably the most important things that needed to happen to me in order to become healthy again. Now if I can avoid getting sick, it should go well for me.

I finally figured out that I shouldn’t be eating with the other residents because it amounts to too much contact with other people while my resistance is low. I don’t know why it didn’t occur to me earlier when it should have been obvious. I have a feeling that my doctor is going to be telling me that tomorrow. They decided that they wanted to have a meeting with them tomorrow. We’ll see. I don’t want to have to go through another recovery again. I definitely think that I’ve been weakening my immune system. I’ve got to do better.

Going back to the topic of having a blog. I’m going to have to reconsider doing it again. I know that I ought to be setting it up in such a way as to increase interest. However, I’m finding myself so weak (and pushing so hard so much of the time) that I simply let it all out in a massive jumble of thoughts and emotions (most of which are presented in such a way) that it would only interest me. Thinking clearly is still a real problem for me.

So I’m going to think it over again and try to make a final decision.

More Tomorrow!

10 pm Stem Cell Transplant Blog + day 31. Getting rid of each leukemic blast from the past a single cell at a time.

I realize that the fact that I am still alive has less to do with me than it might seem. Still, my willing participation in the process is totally necessary as well.

I was extremely disappointed last night when my blog simply (and inexplicably) disappeared from my browser and my program. WordPress can be like that. If copy disappears it may simply be gone unless you’ve already had the opportunity to put a save in on the article. Last night I wasn’t even touching the article and I watched it disappear. It’s not the first time WordPress has done that! Ihink that I may have found it again. I still can’t conceive of how an article I’m not working on, am looking at, can spontaneously disappear from my screen and “hide” in my word processing program?

I”m hoping that getting out on Monday will speed up the healing process. I’m almost certain that it will. Being with my wife Lynne and seeing my family will help me too. I haven’t seen any member of my immediate family for well over a month. I’m looking forward to the prospect of enjoying life again. What a joy that can be! I’m hoping that no unforeseen circumstances interfere with that!

Right now I”m locked in place. Need to start going forward again. Getting forward motion, as anyone who’s done it knows, is easier said than done. I simply have to do it. Wish that the only things that I knew how to say were encouraging words! I’m pretty far from that too at the present. All that I can say right now is that I lived through it. Now I have to get excited about it again. When I get out of here, I think I can muster that. I find it amazing how quickly my courage can fail. One man’s life’s challenge can be so different to another person.

Still, I know I’m where I ought to be doing things that I know I should be doing (in a general sense). And much more specifically, some of what I’m experiencing is absolutely necessary for my salvation. So, the game grinds on. Some of my most profound insights can come through the my most mundane experiences.

The restrictions they’re placing on me are onerous. It will be a definite challenge for me to keep them. I don’t know how these things will affect my wife Lynne. Somebody has to be the anchor here?

My next question is: “What’s really next?” What will constitute the real challenges?

I’ll talk about that more tomorrow (if I can remember). At least tomorrow I get out on the street again! Feel the sunshine and the breeze. Walk in crowds of people with a penguin mask on feeling, I suppose, totally normal? We’ll see.