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: Your life redefined and there you are without the definition!

This leukemia, although very difficult, has been a great blessing to me in my life. It’s been a wakeup call highlighting what is important in my life. It’s obvious to me that family is the most important thing in life. I knew that before I got leukemia. Love, as expressed through service and kind acts, is of the essence. I’ve seen some wonderful and selfless service under many sets of circumstances.

When I survive this, and I believe I will, how will this play out? Will everything simply slip back into old familiar patterns or will I find new opportunities and different possibilities? The old question of “What am I going to do when I grow up” keeps raising it’ ugly head.

How do you decide it’s what you want to do unless you know what that is? Starting over again, regardless of your age, is a daunting prospect. Yet, with leukemia, and other life-changing and traumatic illnesses it happens all of the time. Worst part of it all, you never know for certain, whether the disease is coming back or not?

I suppose the only answer to the last question is to simply to accept each day for the gift that it is. For me, the remainder of those issues are open to examination. Personally, I know that I need to write.

I chose not to write for many years. Now, I’ve reached a point where writing has become a compulsion for me. The raw talent is there but I never developed it to the extent that I might have. I have a lot of catching up to do if I intend to pursue this course seriously.

I already know that my writing has some commercial value. I’ve seen that already. I suspect that will remain more or less static unless I can boost my production levels and showcase my skills in more lucrative markets.

I enjoy writing many things. Sometimes I’m a gifted (although very impatient) poet. I write philosophically and politically as well.

I was surprised to find just how much I enjoy writing tweets for twitter, especially political ones. Don’t know what to do with that. Is there an avenue to be pursued there? Then, there is also the issue of time. How much time do you have left to pursue you’re passions? How committed are you to what you want to do? Is it really as important to you as you think it is? Those are the questions to which, at present, I have no answers.

Writing this blog is an experiment. To do it right, requires a balance and dedication that I’ve been unable to replicate on a continuing basis. I want to be able to document what happened. In spite of that, I get sidetracked very easily. Some of that may be the leukemia (chemo-brain) and the rest of it is probably personality.

The most important role in life appears to be service through self-expression. All of us have a need to add value but we all have a different idea of how to do this.

More tomorrow!

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

Well, talk about being confused. I’m in shock! From 0 to 60 mph in 5 seconds with a rusty old Mazda 626! Just got told I’ll be leaving the hospital on Tuesday. I thought that the end of next week would have been the earliest possible date! I wonder if we can get ready on time?

My WBC was 1.33 this morning They expect that to more or less double by tomorrow! Freedom, what will that be like? Difficult comprehending it. Unfortunately, too, I’ve been somewhat easing up on my preparations in terms of diet and exercise. I thought I was going to have some time! This is bewildering!

I think this is my blog for today. I have preparations to make!

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!