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!

 

 

 

 

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!

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!

 

 

10/18/15 Sunday Night Weekly 10 PM Stem Cell Transplant Blog: Slow but definite progress day by day.

THURSDAY

Can’t believe it. Lost another blog on WordPress. I don’t have any idea of how that happened! I am so frustrated. The stuff I wrote wasn’t bad either.

Think I need to find a different way of publishing. I can’t afford to keep losing my material like this. Whether or not I did this to myself, there should have been some system of failsafes that would have prevented me from doing this to myself. That’s providing I did it to myself.

All in all, with the exception of losing my blog, this has been a pretty good day. My blood work looked very good this morning. Apparently, in spite of the difficult days, the graft is taking well with a minimum of serious problems. Knowing that is very comforting because I assumed all of those problems I’ve been having were indicative of more serious problems. But they’re not.

I’m feeling much better today as well. I feel is like I’m living on a pendulum. One day I feel good and the next day I feel sick and I never know why. Apparently, that’s less important than what’s going on with my blood chemistry. Still I’m happy that things are looking good. When I start to feel better consistently that will be a real plus.

It’s beginning to get cold. We’ve had a wonderful Fall so far. I’m so glad I got out of the hospital in time to see these beautiful days.

I want to be able to start looking forward instead of wondering what’s going to happen next. I’ve been able to work three out of the last four days. Not high quality stuff but coherent enough to be useful. I need more clarity of mind and can only hope that it’s coming. The transplant process is very unnatural. It’s hard to tell just how much damage it did to my body as well. I think I’m seeing some of that.

FRIDAY

It was a better day today. Didn’t have to go to the hospital today so I slept in. Felt very rested. I got some work done. Not nearly as much as I wanted to do but, in the process, forgot to eat breakfast which, for me, is definitely not a good idea. I can’t afford to lose any weight.

It was a little bit cold outside and it felt like Fall. It was a great day to take a little trip. For me to do any serious work I need to have a clearer mind (for longer periods of time) than I have yet had on a regular basis. Hopefully, that will come soon. I’m about half way through my stay in Buffalo.

Thank goodness for this place where we live. It makes our confinement here so much easier! We are so fortunate. I have hospital appointments tomorrow. Sunday we have off and we’re going to church. Tomorrow’s another day.

SATURDAY

I’m alive! I’m still here! Why am I so surprised? Doesn’t matter. Today I’m delighted that, in spite of all of the difficulties and dangers of the last year, I am still alive. It’s been a long thirteen months but, I’m pleased to say, I’m still here.

You might ask: “What brought that on?” First of all, I’m feeling pretty good today. Secondly, I have a report on my blood chemistry in my hands. White blood cells normal. Hematocrit low. Platelets very low (44). Red cells high. ANC normal. With the exception of the platelets, I’m very comfortable with what I’m seeing. Of course, low platelet numbers are what got this whole party started in the first place. Today may be the first day since the transplant when I don’t “feel” as though I have a dread disease. I’m feeling like a man with a future.

Went to the hospital today. It was a cold day but the wind was absolutely piercing. It portends an absolutely fierce winter once the temperatures drop. I don’t know where the wind is blowing from but I suspect it’s one of the lakes (either Erie or Ontario). That wind, if it’s consistent, would make it colder than Adams.

With the leukemia, each time I received chemotherapy successfully (and they were all at least marginally successful), I felt as though I had received a new lease on life. It was a short-term lease, to be sure, but it was a new one. Now I’m beginning to feel that, with the transplant, I have a new lease on life of the unspecified long-term variety.

My hair is coming back. Will it come back again this time with the full range of colors that it had last time? It came back red, brown, black, grey and white. (When I first got leukemia my hair color was pure white). Only time will tell on this. I’m hoping for more of the same. That was one of the nicest surprises that I’ve had since the start of all this.

SUNDAY

Went to Church for all three meetings today. It felt good. It may have been the first time in a year that I’ve made it to all three of my meetings. This ward is the size of a branch but it is very comfortable. Very easy to attend. The members are very friendly. We were very fortunate. We ended up with a great apartment as well as a great Ward to attend. However, because I slept in, we got to church just barely too late to take the sacrament. I’ll have to do better next week.

Gradually getting colder. Last year about this time, I had either just gotten back home after my first round of chemotherapy or was about to. I remember just how cold I was all of the time. I’d lost so much weight and all my hair. Losing the hair mortified me. Looked so much goofier (and older) without the beard. It would be awhile before the hair would come back.

The lost weight was tragic too. When I was a boy I was exceptionally skinny, constantly picked on. When I finally approached normal weight I was so happy. In regards to that, the first time “tragedy” struck was during my mission when I became very sick and for many years,my weight was very low again. I hated it but there was nothing that I could do about it. Gradually I gained the weight back again. And now, here I am, looking “Gollumesque” once more. I don’t like the memories that looking like this evoke in me.

More importantly, I am glad to be alive. I’ll be even more pleased if I get to be (and feel) productive once more. I’m hoping to be able to regain enough strength and the means to be able to do many things again. At any rate, I need to find that sense of being productive again. I suppose I won’t get to see what that means until I achieve it.

More next Sunday, October 25, 2015