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!

10:00 pm Stem Cell Leukemia Transplant Blog 11/29/15 Is this what is actually happening? I find it hard to believe!

MONDAY

I’ve been sick far too long!  I’ve been on a sickness carousel. This has been a revolving door of low-grade and high-grade misery. Sometimes it feels as though it will never end or that the ending that I get is one that I’ll find very disappointing (even after all of this). I can’t make sense out of any of this.

Now I’m feeling better again. My lungs are beginning to clear the fluid out from around them. I’m feeling quite a bit better.

It can be very easy to lose perspective. I’ve come close. Doing my best to persevere.

TUESDAY

I feel a little bit better again today. This is giving me more relief.

Had a bone density test today. I also saw the doctor. They are beginning to zero in on the lungs and the fluid around them as the main cause of my afflictions. That seems to be closer to the heart of the matter. I’m satisfied that I’m getting the help that I need. Now I’ve got to take enough of the medicine to ensure that I can regain my health. Missed almost all of my medications today because of being so busy, on the one hand, and weak on the other. Have to make sure this doesn’t happen again. I’m so tired and weak all of the time plus, there are more than 30 medications that I take every day. Need to get this done! Never thought that survival might come down to an issue as simple as this. Can’t let that happen.

WEDNESDAY

So far this has been a very difficult week. In spite of all of the problems, my blood chemistry is looking better every time I receive the results. Considering how I feel, this is amazing! Eating a little bit more all of the time. At some point there has to be a breakthrough, doesn’t there?

Gerrit and Cheryl will be here tomorrow. A touch of reality in an otherwise surreal situation. Nothing is proceeding the way that I would have expected it to or wanted it to.

THURSDAY

Cheryl and Gerrit arrived around noon. Very good to see them. Still don’t feel well. I want to feel healthy again so badly!

Swollen ankle due to water retention? Didn’t sleep much last night. Need to get all of these things under control. There are so many ways to be uncomfortable! I’m discovering more of them all the time. I need to be able to eat and to rest before I get to go home. As simple as all of this appears, I need to figure out how to do it.

At least I’m beginning to eat better again. Wish I could get clear of these other problems.

Living this way takes courage, more than I could ever have imagined. The longer this goes on, the harder it is. I’m very hard-pressed!  The only saving grace that I can find in this situation is that I am gradually getting better!  It was good to see Cheryl and Gerrit. Cheryl played her piccolo for us after dinner. She played the movements that she soloed in her concert the previous week which means I was privileged to hear them. She is so good. It was wonderful to hear her play again. Too bad they went back home the same day.

FRIDAY

If  I were a drinker, I would say that I felt “hung over”. At any rate, I’m feeling the same lack of clarity and a similar level of confusion. It’s begun to pass during the course of the day. Was it something that I ate yesterday? Eating very slowly but eating almost continually now. I’m eating simple foods but they have appeal to me! I’ve been able to eat and rest all day. It’s been really nice.

SATURDAY

It’s a dark and gloomy day with temperatures close to freezing. The good news is that I’m feeling better again. Wish I could get rid of this water retention. Everything is beginning to look up. I should have enough strength soon to show some  initiative and get things done, perhaps work a little bit. I’m looking forward to it.

Right now, I’m eating Oreo cookies and a new type of Town House cookie, neither of which I probably should be eating but which demonstrate how much better I feel right now.

SUNDAY

Definitely getting better. I’ll go to church then I’ll rest up today for a trying week to come: Removing fluid from around my lungs on Monday and a bone marrow biopsy on Wednesday. For the most part, I’ve enjoyed the week. Hoping next week is even better.

This has been a promising week with a complete change of directions regarding my health. It looks as though my primary health problems are being resolved. I relieved and very thankful! Let’s see what next week brings instead!

Good night!

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.

10/18/15 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

10 PM Stem Cell Replacement Blog: A less difficult day.

Woke up this morning. Simply felt better than yesterday. Don’t know why. This seems to be the pattern. Wish I understood what’s going on.

The hardest part of explaining what leukemia is like is that it tends to be very different for various people. I know that I that I’m uncomfortable and it’s unpleasant but how is it for the other people? You can see that they’re stressed by it, but how? How do they cope with it?

I think that we have to resolve, every day, to do our best with what we get. People survive this all the time. The illness doesn’t give you the impression that’s where it’s going. All the symptoms that I get are so unusual that they don’t give me anything to judge by. I go from sick, to very sick and, occasionally, feeling almost normal. I really would like to have much strength and feel it increasing on a regular basis. That would encourage me a great deal.

My blood chemistry today was very good today. Closest to normal that I’ve seen. My stomach is killing me right now. Feeling bloated.

This will be last daily blog. I don’t have enough material to do a good job of this on a daily basis. I’m going to start publishing once a week every Sunday night at 10 pm. It will either be a better blog or it will disappear. Only time will tell.

10 PM Stem Cell Replacement Blog: A dark and stormy-looking day. What’s next?

With leukemia most of my time is spent waiting in line or waiting for an appointment. Not very much happening here. I need to talk to the group that did the sleep study to reschedule the rest of the test. I should put in some hours at work as well. Trying to decided what would be effective. I need to find a way to tie my tweets back to the company I work for without being overbearing. That balance is delicate. The objective is to create a positive reception for them and their products without having to beat prospective clients over the head with the material that is being presented.

It’s a quiet day in Buffalo. Here, we’re disconnected from every facet of our everyday life. Being able to go to church on Sunday was a good thing because it is something that we would normally do even if all of the people are different.

Buffalo is a very different city from Syracuse.  Much more vibrant and alive and much larger.Most of my time will be spent near the medical centers. My doctors are trying to “coax” additional performance out of my bone marrow.  The results haven’t been bad so far but neither are they spectacular. It looks like this is going to be a slow process.

Sick again today. There have been so many days like this! Got up in the morning, ate breakfast, sat in this chair and never moved again until around 4pm this afternoon. Don’t have any idea. Getting weaker by the minute. Don’t know what to expect. I hate being sick all  of the time! Wish I knew what to do about it. Being sick all of the time is so demoralizing!

Don’t know what the problem is but I’m getting sicker by the hour. The only thing I’m certain is that it has something to do with digestion. I’m very  uncomfortable right now. With they exception of dinnertime, I’ve been sitting in this chair all day, dozing, doing nothing. Don’t have any energy. It’s raining and the wind is picking up. Feels as though it is likely to rain all night. I really enjoy these Fall nights!

More Tomorrow