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!

 

 

 

 

10:00 PM 11/15/15 Sunday Stem Cell Replacement Blog: Don’t know what to expect so you learn to expect anything.

Sunday Evening:

This has been difficult. Trying to decide what to do next! To say the least, I am confused.

Monday Evening:

Be going home reasonably soon.

Tuesday Evening:

Rainy day today. Most of my thoughts and thinking are on hold. Need a clear head.

Going home soon (to Adams) but have no idea of what I’ll be doing after that. Need to develop a viable plan and then follow it. I need clarity. That’s the starting point.

I’m stunned by how quickly this is coming up. I was expecting to spend about another month here.

Wednesday

It’s been another slow day. Very tired. Not getting anything done. Need more strength and understanding of what is happening with my health. Not getting any insights. I need more strength! Don’t know how to achieve that goal. I’m still eating almost nothing. I wish I understood what was going on. So far I don’t. I’m going to try to get more sleep tonight. The CPAP pressure has been raised and I have a new mask.This should make it possible for me to sleep much better. I’ll find out for sure tonight.

My Hootsuite program isn’t permitting me to send out tweets to multiple addresses. That’s the whole reason I have that program. All of my programs, those that I need, are so buggy! It makes me feel helpless and incompetent.

Need to get past this point in my healing and my “incarceration”. I’m ready to go home and find some normalcy in my life. This has been going on for more than a year. I’m beginning to lose perspective.

Thursday

Trying to do better.  I still don’t have much of an appetite or any desire to do anything. It’s tough trying to care right now. I don’t know what I can do or have to do in order to make the progress that I need to make to get from here to where I need to be. What do I need to do in order to get beyond this point? I just don’t see any progress being made at all.

Anyway, the CPAP is working properly but it is very difficult for me to put on. I should be getting better rested as a result. Maybe that will help? Something has to work in order to get me out of this state of mind. I’ve reached the point that I’m neither going forward nor backwards.

I’m concerned about the future. Have no idea of what it’s going to be. I know what I want to happen but I have no idea of how my life is going to go forward. Anything could happen. I have absolutely no control  over what anyone else does and my actions, at the present, are not very effectual towards meeting any of my own goals.

Friday

I’m still mystified. Don’t know what to do in order to break this “deadlock” in which I don’t feel as though I’m progressing. This frustrates me. What are these problems connected to? Is the issue with my stomach? Does it involve all of the fluid surrounding my lungs? Is it some subtle form of graft versus host disease that I can’t detect? What about the sore in my mouth? I have absolutely no answers myself. What do I need to do next in order to move my “healing” forward?

I bought some supplements like ensure to make sure I’m eating at least the minimum that I need. I get at least the minimal amount of exercise so that shouldn’t be an issue. I can’t make any sense out of this at all.

My attitude is beginning to break down but maybe that was inevitable anyway after the passage of so much time. It doesn’t help that I have no idea of what I’m going to be doing. Nor, at the moment, do I have any desire to do anything anyway! That’s not typical of me. So much I don’t understand. Definitely lacking a sense of direction.

Begun to eat more. It’s uncomfortable to eat but, when I do, I feel better. There has to be a way to get past this so that I can eat normally again and have  my body respond normally to it.

Just heard about the Paris terror attacks. Terrible! This has to change our overall response to the international terrorists! Will we find the “will” to wipe the known terrorists organizations off the face of the earth? If not, I can assure you that this will continue.

Saturday

ISIS has been provoking the West more and more directly. Sooner or later they will get a massive response which should lead to their elimination as a power in the Middle East. So far, the Western powers haven’t been focused enough to employ enough of their power to eliminate them. The Paris attack may be the beginning of the end for ISIS. Only time will tell.

Feeling better today. Going to take the supplements again today. Is this a trend? I think that it may be. As my strength comes back my appetite seems to as well. Reverse of what I would have expected. Each day needs to get better than the last from here on forward or I’m probably not going anywhere soon. We’ll see.

Went into the clinic today without an appointment. Lynne changed the dressing on my central venous catheter last night. Looked really irritated today. Decided not to take any chances. The nurses changed it again today with different products. Looks okay now. Can’t be too careful at this point. I definitely want to get to go home soon.

I’m feeling a little bit better. It’s beginning to warm up again. Easting better than last week. The energy drinks are helping with that. Hopefully, I’m beginning to move past these problems. I’m doing what I can.

Sunday

Water is beginning to taste good. So I’m drinking more of it. I like roasted peanuts too. Eating those things and the protein drinks and some vegetable and rice. At least I’m eating now. It’s disappointing having to go through this process of learning how to eat all over again. Oh, my facial hair is coming back in again but, this time, it’s almost all white. That’s a real disappointment. Would have preferred a mixture with red in it again!

Can’t help but wonder who it was who so generously offered my his stem cells? Know nothing about him except he was 26 years old. My first donor backed out. For some reason he only wanted to do a “bone marrow transplant” which, according to what I’v heard, would have been considerably more painful. Don’t know if their are any particular advantages to it either. That was a strange situation. Had a feeling that he was going to be a no-show but I didn’t know why.

As long as I can rest, I think I’ll take a nap. I sleep much better now that I have a new mask on my CPAP. So, see you all later.

 

Bruce

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 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 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: Aftermath and after thoughts!

I lived through the transplant process, so far, everything is proceeding more or less as expected. Because of that, you’d think that I’d begin to relax, wouldn’t you? That’s not happening. Why?

I have a theory. To me it appears that when the pressure is on, your mind chooses to respond by “hunkering down” and dealing with the real and present danger with which you are faced. When those challenges begin to fade away, your concerns come back and begin to take over again. Those anxieties can manifest themselves in a large variety of ways.

What I’m experiencing right now is unfocused anxiety. I”m worried about everything, not knowing what to be concerned about in the future. I’m worried about what will happen next. I’m also concerned about whether or not the Leukemia will come back. These worries rotate from one series of things and then through a series of others.

I’m getting better every day but the path isn’t totally straightforward. I’d like to see some more warm weather. This cold is more than I can handle at this point. I’ve already made one “nearly complete” recovery from Leukemia ALL. This time I’m hoping it will be totally complete and, I suppose, subconsciously, worried that it may not. Life takes faith and I need to exercise faith more consistently. Sometimes it’s easy to do and other times it isn’t.

I’ve received excellent medical care but I am so happy to be out of the hospital. i’m beginning to feel more like a human being all of the time. I hope to be able to stay out of the hospital! One day at a time. Only time will tell!

More tomorrow.

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.