10pm Sunday, 12/20/15 Stem Cell Leukemia Transplant Blog. Time to go forward again!

Monday

Starting another week. Definitely more healthy. Ate almost 3000 calories for my mid-day meal and I’m still eating. The change has come but I don’t know what it means. What does this all mean?

It’s about time to go. Problem is I don’t know where to go from here. It’s definitely time to start working again. I can feel that I have sufficient strength and clarity of mind to begin working again. And, I have a plan. Guess we’ll see how well it works!

Tuesday

Was able to work a little bit today in spite of the difficulties. Changing the direction has been difficult and will probably cause me some serious problems with my son but the changes are the right thing. Need some overt success or my feelings on this matter aren’t going to matter. This whole thing may be very difficult. Only time will tell.

Wednesday

Now I’m out! Feeling pretty good. Need to get to bed. See how I feel tomorrow. It’s pretty late right now! Can’t reconcile my medications right now!

Thursday

First day out. Very disappointing results. I’m sick all over again and I don’t know why! What am I doing wrong? Why can’t I figure this out myself? I’m worried that exactly the same thing (gradually being incapacitated) will happen all over again but without any understanding as to why! Don’t feel like eating again.

Friday

Walked out into the kitchen. On the way back tripped on the two steps up. Hit my head so hard! I was surprised. Didn’t expect that at all! How did that happen? No recollection at all. Just remember going down very quickly and uncontrollably. That’s gonna be so black and blue! It’ll be difficult to explain to medical staff on Tuesday when I go back there. Don’t want to have to do that at all. Enough of that!

Showing remarkably little damage from that terrible fall today. Did I “dodge the bullet” again? I can only hope so. I’ll have to learn to be more careful and “act my age”. What did I trip over? Absolutely no control over that fall. Hit the floor before I knew I was falling! And yet, I feel fine now?

Saturday

Back again. Feel better again today. Perhaps I’m making progress but at an uneven rate or something like 2 steps forward and 1 step back? I think that I’ve been surprised by the amount of work and time this “rehab or getting back to normalish” is taking. Wish I felt more courage!

It’s going to take just as much effort for me to rehab as it has for me to survive. I’m going to have to gear up for this. I didn’t understand how this is going to work. And, in some respects, it may be too late already.

Figured out what I “tripped over”. It was the floor. The  floor is covered with a wood laminate. The subfloor is very uneven. There’s a very obvious spot of “low to high” right before those two steps. Wasn’t paying attention. I am now!

Sunday

Very early Sunday morning (still Saturday night to me). I was able to work today, to get some stuff done. I think it may have been good. I don’t know if I was able to pack the tweets tightly enough to determine whether I was successful or not. Ultimately, with advertising, no response means that it can’t be successful (unless your metrics for success are incorrect). And therein lies my dilemma. Measurement and clear-headedness? Need some rest, time for bed once more!

Maybe a little bit more in the morning?

 

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!

 

 

 

 

11/01/15, 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 Replacement Blog: Looking for easy answers in hard times.

Leukemia has been the greatest single trial in my life. It has also been the single most powerful spiritual experience I could possibly have had and it continually provokes me towards righteousness. I’ve seen myself rise to great heights as well as be distracted to pettiness because of it. What does it all mean? I truly don’t know except that it was foreordained for some important purpose either in my life or the lives of those around me.

I wish I could consistently be strong spiritually but I’m not. I still struggle with faith, and service, and forgiveness, and vision and a host of other things. I do know that My Father in Heaven is capable of bringing me back to Him if I choose to be obedient, faithful and repentant.

I caught the last session of General Conference today. I’ve been so distracted and preoccupied with leukemia I managed to lose track of the General Conference schedule. It’s so easy to let the spiritual things in your life be swallowed up by the current cares and concerns. Still, even for that one session, it was a delight to hear God’s word for us through his duly appointed representative.

My life has been remarkably good even as it has been so terribly difficult. When I concentrate of what’s important and have faith, I can handle it. I’ve seen more than a few miraculous things happen on my behalf. When I fail to do so, then I stumble. The pattern is the same over and over again. I keep forgetting that this isn’t playing out according to my plan but as a part of a far greater plan of which my life is a part and it will be adjusted according to my performance and willingness to receive it.

As far as the leukemia is concerned, I didn’t know that I was going to get that dread disease but I knew that some event of grave importance was going to occur in my life in the future and that it would have very important implications for me. Didn’t know what it was but I recognized it when I saw it. For that reason, I was able to exercise great faith at the beginning of this illness, more so than I have any time since then. I become more uncertain as time goes by because I have less idea of what to expect. Like everyone else in my position, I want everything to work out well and to what I see as my “advantage” without really knowing what is best from this point forward. It’s so important that we walk with faith and a willingness to assume that everything will work out for the best, whatever that is. That’s not always easy to do.

To a few people what I’v written about today will have deep meaning in their lives and for a few others it will amount to superstitious prattling of an anxious old man trying to preserve his life for a few more years. I went ahead with the stem cell transplant because it felt like the right thing to do. It was something that I had to go through, regardless of the outcome. I still don’t know the outcome. Even if I survive the leukemia, I’m still 69 years old. What does the future hold? I doubt that it can be terribly long. I want to spend my time doing those things that will be of greatest value as long as the opportunity is there to do so. What will that end up being? I hope I get to work productively again. And, I want to write. And make peace with my family (the most daunting task of all). That will require all of the strength that I’m permitted to have!

More tomorrow?

 

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