12/06 10:00pm Stem Cell Leukemia Transplant Blog. I should be wrapping it up here soon but, hey, you never know?

Monday

Today’s the day that I get the fluid around my lungs punctured and drained. I’m not looking forward to that. For me, right now, the worst part of this is not being able to eat or drink. I’m both dry and thirsty. I’m certain that being hungry and thirsty will be the least of my problems once this procedure gets started! Life in the fast lane! My appointments took way to much time today. As a result, I’m very sick again. Just don’t know what to do? Terrible! They only punctured the right side today. They removed 2500cc of fluid. Going to  do the other side on Friday. I was told there is somewhat less fluid on that side. I’m looking forward to getting this done and getting some relief!

Tuesday

I’m very disappointed with this constant round of sickness that doesn’t ever seem to end nor for no reason can be found. I’m totally confused by all of this. Why can’t I get past this point? If I don’t, I question whether or not I’m  going to survive this. Still don’t know what the problem is? My strength has come back a little bit. I spent the entire day in bed.

Wednesday

Today’s the day for my bone marrow biopsy. I hope that I’m healthy enough to get it done. Last time it was scheduled I wasn’t. I was very sick Monday evening through Tuesday evening and then I started to feel better again. while I was feeling sick, that meant another day without eating. Wish this would end, that the doctors would get to the bottom of this! I’m getting really discouraged.

Even with anesthesia and drugs to prevent it, I remember and felt the entire procedure. That’s going to make me more resistant to doing it in the future. Well, they’ll drain the other lung on Friday. That will make it 3 surgical-type procedures in a single week. If it gets me home, it’s worth it to me! I need so much more strength than I have now! I need to go to bed now.

Thursday Still sick and still eating. How’s this going to resolve itself. I appear to be making very uncomfortable progress while, nevertheless, still going forward. My blood chemistry continues to improve each time I have my blood work done. Something has to give here somewhere. I’m feeling more confident but I’m still puzzled why my experience is going like this. I feel very calm. Removing fluid from the left lung tomorrow. I hope that brings even more relief!

Friday

Day 100. I should be done and ready to go home. They took around 900CC’s out from around the sack surrounding the left side of my lungs. They did another cat scan of my lungs after that. They realized that I had pneumonia as well as graft versus host disease manifestation in my lungs. So they readmitted my back into the hospital on the very day when I ought to have bee going home. Of course they were all right but it stings. I can hardly stand up right now.

Saturday

I’m getting better again. Even though I was readmitted to the hospital yesterday,there was some very good news today. Ther was absolutely no sign of leukemia in the biopsy. Those are about all the results that we’ve gotten back from them so far. What a blessing!

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

11/01/15, 10 PM Sunday Stem Cell Replacement Blog: Need to do this blog for the sake of my own sanity whether this gets followers or not.

MONDAY

Didn’t have to go in to the clinic today. Found a cemetery to walk in and a gas station! We just barely bought gas for the first time since Lynne arrived here almost a month ago. That shows just how little driving we’ve been doing. We’ll be taking some more trips back to Forrest Lawn Cemetery for the peace that it affords. Hope the weather holds up for awhile longer.

It’s nice to be able to get outside in nature. Where we live right now in our apartment, we’re surrounded by new concrete and steel construction going up on two sides of us from before dawn until after dark every day. As beautiful as they have made this location where we live (there’s a street-side park), it will still be nice to get away from all the noise and the construction. The construction companies probably have to get some sort of covering over the construction site so that they can continue working through the Winter. They keep working everyday  until it’s no longer possible to keep working.

Last night we were awakened about 3:30 am by someone ringing our doorbell. Got up but didn’t go downstairs. Shortly thereafter I saw someone trying to get into the main building (probably ringing the doorbell). Shortly thereafter, the police showed up (which is what the signs on the door said would happen) and the individual in question was taken away. However, I was awakened and stayed up for about an hour.

I’m getting better but I don’t feel well most of the time. I cycle from feeling good to bad throughout the entire day. Might feel good at 2pm but miserable by 3pm. I’d like to feel better than this. Maybe the change will come soon. I’m hoping!

It was another beautiful day today. Hope they just keep on coming. Want to spend some more time outside before winter starts to set in.

TUESDAY

My blood chemistry took a huge hit. Not enough to put me into danger but it’s a big step backwards. That’s very disappointing. Next test is on Thursday. We’ll have to see what Thursday brings. Hopefully, results that are much improved. I’ve noticed that the blood chemistry tends to respond in a “wave-like” rhythm. Perhaps this is a very normal pattern. They’ve found a new infection. This one both worries and embarrasses  me. I’ll let you guess where it’s located. Apparently, all of the medical people who need to examine it are female. Does this ever end? I might as well just walk around naked! I’m very frustrated right now. Think I’ll take a nap!

WEDNESDAY

When in doubt or frustrated, take a nap! That seems to be my solution. Speaking of solutions, I’ve found an answer for changing the CPAP pressure by remote. My supplier, Marra, suggested that I take the monitoring flash drive out of the CPAP and insert it into my computer. When they receive the authorization to change the pressure, they will download it to the flash drive. When I take the flash drive and re-insert it into the CPAP, it should automatically change the pressure to the correct level. It sounds good to me! I’m looking forward to getting the pressure correct on the CPAP and sleeping well for the entire night. This is very encouraging. It’s a rainy and windy day today. I’m glad that I don’t have any appointments that I have to go to. I’m so pleased with all of the good things that I have in my life. I have a great deal to enjoy and I do.

Wasn’t able to change the pressure. Didn’t work. Tech is sending me a flash drive with the pressure already set in it. Need to insert it and the pressure should automatically change.

Still, I need to take care of the spiritual side of my life.When it comes to prayer I do a pretty good job. Scriptures, on the other hand, are another matter. I need that influence in my life. The same is true of church attendance. I’ve been attending regularly but I’m still pretty feeble. People from church want to visit us but I’m really not up to it. Neither is Lynne. She’s always been a little bit reclusive. She prefers to spend her time with family. That’s all the energy that I have (and have had) for many years.

I’m finding the need to use a little bit less painkiller. Is it because of less pain or less anxiety? Inquiring minds want to know! Next thing I need to do is to find a chiropractor. That could bring down the need for pain medicine considerably!

THURSDAY

Once again, here I am, betwixt and between. This week has been a time of minimal energy and little progress in terms of improving my blood statistics. Something’s holding me back and I have no idea what is going on. I’ve been sliding back but not very much. I don’t know how to read these things so I become confused and anxious. So much more to learn and so little ambition. Trying to follow through but my mind isn’t clear. If it were, it would help me so much. The other problem is this computer. Often, when I’m ready to work, the computer isn’t. Sometimes it won’t let me log in (with the correct name) or the internet doesn’t function the way that it should. Impediments to getting work done. These are concentration destroyers as well. Oh, well, there is truly opposition in all things. I need more strength and insight into my own character. Tomorrow’s a new day. Anything’s possible. That’s the good part. Never know what is going to happen next.

FRIDAY

Had a tough day today with intestinal problems. There was a lot of pain and, frankly, it had me scared. According to my doctors, I’m losing weight. I know for certain that my mind isn’t very clear. Don’t know what to do about either issue. In general, I’ve been enjoying myself and often feel reasonably comfortable. Then it passes and I’m not feeling well again. I’m actually beginning to look forward to my colonoscopy on Tuesday in hopes that it will provide me with some meaningful answers that will help me get beyond this point. I feel that I need some kind of a breakthrough but I don’t know what or how.

This whole process is bewildering to me. I wish I could rest but I don’t feel as though I’m able to. Still don’t have the pressure change in my CPAP. I’m certain that will help as well. At least it will mean better rest. What a struggle it has been to get this done! Getting this pressure changed should not have been difficult.

Still don’t feel like eating. Every time I eat I feel bloated. Then I have burning in my intestines which continues right up until I have a bowel movement. That can go on for an hour or so. I don’t understand what’s going on at all. I wish that I were done with all of this but that’s not up to me (obviously).

Went to a chiropractor today. He was able to adjust my neck (which is notoriously difficultly to do).Definitely felt better afterwards.

SATURDAY

Same thing again. Expecting one thing, getting another. The way that I feel during a day changes kaleidoscopically. It just never ends. I don’t know what to do about it. Every time it appears that I’m making straightforward progress, something else happens. I’ll be so glad when this is over. Right now, I think I’ll take another nap. Beats sitting around being frustrated.

SUNDAY

Went to Church today. Lasted about 2 1/2 hours. They had a joint meeting at the end that was too much for me. Too many people in too small a space. I was glad to be able to go to church and equally as glad to be able to leave that crowded place. Nevertheless, got a spiritual boost from the effort! Oh, the great news at church is that they just started a Spanish speaking class today. I’m in heaven. I was largely ignored but I still enjoyed myself!

More tomorrow. (I’ll publish again next Sunday). I hope somebody finds this useful because I have a pretty boring life. At least the pain is diminishing. Notice it less and less. I’m hoping that the chiropractic visits help me with that too! That’s all for now folks!

 

 

10 pm Stem Cell “Ramble”, a blog about overcoming leukemia one stem cell at a time!

My blog is an attempt to communicate thought and feelings about my experience going through the healing process with Leukemia. I’m not sure but I don’t feel as though I am able to do this very well.

I need a certain amount of energy to communicate effectively to other people. I’ not feeling it. I don’t eat because I’m not hungry. I’m not hungry because I don’t sleep. Then the process repeats itself all over again. If I could break though on the sleeping, and get the rest that I need, everything else would fall into line as well.

Having leukemia for me has most often been a process of being continually tired. When it gets this bad, I don’t have any understanding as to how I”m getting that tired. Can’t even remember what happened the last time I felt like this. Can’t remember anything very well right now! What happens next, why and how?

I’ll be getting a bone marrow biopsy today. It’s terrible test. I both remember it and I don’t That’s because I’v had it with both the drug that makes me forget the results and the without it. I know that it can be incredibly painful and takes about 15 minutes. I also know it’s the only way we can tell whose stem cells are repopulating my bone marrow. They could be mine or the other guy’s. The could belong to both of us. Frankly, with the massive effort they put into killing my bone marrow off. I find it hard to believe that any of  mine remain. And, on top of that, the recover patterns are entirely different this time than when they were mine.

Now that you’ve heard my entirely unscientific evaluation, you’ll get to there would really happened in about a week.  That’s about how long it takes to get the results back. I slept a few hours since I last wrote so I’m feeling “okay” right now. I’m lucid. I can’t say how long that is likely to continue. Every time I’m about ready to give up, something happens that makes me capable of living with all the pain and the problems. I feel very fortunate in that. How I want to get out of here! Hopefully I’ll know more on Monday.

Even though I’m miserable today, I am glad to be alive. I would hate to think that I had wasted all of this for nothing’ although I no know that even “nothing” can be so much more than we can imagine. This is definitely one of my hardest times during this entire recovery process. They tell me it can get much harder before it gets easier. They’d know better than I would.

The bone marrow biopsy was the hardest that I remember having. Uncomfortable before, during and after. I think this is the third but it may have been the fourth biopsy I’ve had. I’m not 100 per cent sure. Downsizing the line was no fun either but the process was more familiar to me. I’ll be very happy when, and if, I don’t have to do any of these things any more.

Well, this day’s over. Hopefully,  Tomorrow  will be better!

More tomow

Birthday Wishes!

 
 
 
 
At 68
Life is great!
As long as you don’t stop,
Or ever hesitate!
 
Because if you do)
You’ll be feeling the fool!
Asleep you’ll be
Even when playing on the Wii!
 
With little time
Between the naps!
The day went by quickly
 
While listening to birthday greetings
From family and friends,
Written by Mr. Binkley!
(refer to Mork & Mindy)
 
You will remember
When you approach December
Many memories from May to September
And you’ll say with such joy
I remember when I was a boy….
 
And everyone else will roll their eyes
And try to disguise their reluctant sighs!
Well, at any rate
Thanks a bunch!
 
Well, now it’s time for lunch
Or is it brunch?
Well, does it really matter?
 
It’s just my fate,
Whatever I eat,
I’ll  only be getting  fatter!
 
Thank you!
 

South African Sam, Immigration Article #3

It was 1968. I was working at my second adult job. My position involved working as a computerized inventory control clerk at a food warehouse. Shortly after I began working for the company another guy started working with us. His name was Sam. He was very different from the rest of us.

He was an intern which as a concept with which I had no previous experience. Sam was the only intern working with our company while I was there. He was in the process of obtaining an advanced degree and he was working on completing his thesis. Sam was a black man from South Africa. He was the first South African any of us had ever met. He also was the only black man working in the office.

Physically, he was also exceptionally short man which gave him an almost childlike appearance. Sam was definitely less than five feet tall. Because he looked so young I was surprised to learn he was a married man and that his wife was still in South Africa. Although he spoke English, he spoke it with a heavy accent that made him difficult for us to understand. He came from a tribal background (Zulu). He had a last name that none of us had any hope of pronouncing properly so we didn’t even try. Sam was here legally but he was a refugee from his own country. The South African government  had refused  him permission to leave. During the short time that we worked together Sam told me the story of how and why he ended up in the United States. Continue reading

Musings

CHAPTER I

We all have hopes and dreams,

Reflected by our plans and schemes!

And a God whose plans are crafted for us above,

Showing us He cares and how much he loves.

Of which we choose to be impatiently unaware,

Looking for prospects that appear more fair!

Eager to test, to sample and to try,

We want it all  but we don’t know why?

We don’t hear and we choose not to listen,

Never understanding the contradiction.

That in order to listen we first must hear,

To know the direction that we ought to steer!

In this life there are many voices,

Presenting us with so many choices!

The best of which can only be measured,

In terms of how much our happiness is treasured!

We need to learn to follow that quiet voice,

That always presents us with our best choice!

So that our progress can be the most,

Before we’re required to give up the ghost!

CHAPTER II  (still a-writing)

A second chapter,

Hardly comprehended?

But intervention acknowledged!

But not thoroughly understood?

Three times I was called to task,

By an entity with power to deliver

No power to prevent it

At such a dark time,

When all seemed lost,

And while tempest tossed,

There was an intervention

And these purposes prevented

As though,

They did not exist

Or had no power to thwart me

To count me as coup in those times!

A voice saying not now,

Forbear, no need to rush,

There are yet more arrangements to be made,

And deeds to be counted.

All needs to be weighed,

In the measure of eternity.

The rest is irrelevant,

None other measure matters!

You have questions?

The management would be happy to oblige,

If there’s a judgement,

Such an appeal shall be made with zeal!

All accounts must be reconciled,

And audited as well!

Whether by the powers of earth, or heaven, or hell;

All our actions will be known for what they are!

And, as always, the truth will out,

To our shame or our glory!

That’s the end of this chapter

And the conclusion of this story.

(For now!)