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!

 

 

 

 

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!

Sunday Night Stem Cell Leukemia Transplant Blog, November 22, 2015 Trying to express my thoughts with a clarity that I often lack.

Monday

Arrived here at this apartment on the 28th of September. My wife, Lynne, has had to take care of me. She prepares my pills (about 30 a day), makes sure that I take them and gives me my Tachrol (which controls graft vs. host disease). She also prepares most of my meals. She’s responsible for seeing that I do what the doctors’ tell me to do and that I remember and go to all of my appointments. I can’t explain the process much better than this.  In other words, she takes care of me. She’s been so diligent! I’m very thankful. She’s shown so much dedication! She’s been a blessing to me for certain.

I have a number of medical tests and appointment tomorrow. Hopefully, they will reveal what the problems are which are holding me back right now. I need to be able to eat and to regain my strength. Hopefully, someone will be able to help me understand the best way to do this. I have to learn what I need to do to begin eating again. Definitely losing strength. Can’t afford to lose any more weight. I don’t understand what’s happening to me.

Tuesday

Not eating for me ha reached a critical level. If it’s not already too late, unless I begin to eat as I should now I’m going to have serious, if not critical problems. I’ve got to impress this upon Lynne so that she can understand just how crucial this has become (although there’s little she can do about it). I don’t want to go back into the hospital again. Don’t think I could handle it. I want to get some “jasmine” rice because I know that I will eat it. Hopefully, my new prescriptions will help make it easier for me to want to eat.

Wednesday

Yesterday was a day of testing for lung and heart problems. The only results that I got back were for my breathing capacity which has diminished by 50%. I was given inhalers and antibiotics with which to deal with these problems. Just using them today I feel better than before. I was able to eat a modest amount of food tonight. It felt good after not eating more than a bite or two at dinner each evening. I’m relieved. I’m beginning to think I’m going to get past this, heal and go home. That, at least, is the plan. Tomorrow, in addition to blood tests, I’m having a bone marrow biopsy. We’ll see what progress I’ve made. I just want to go home! More tomorrow.

Thursday

Discovered that I’m not very good at this kind of “documentary” blogging. If I blog in the future, it will have to be on other topics about which I feel more passionate and committed to. Had to cancel the bone marrow biopsy because I wasn’t healthy enough to go through with it. I’m very uncomfortable. This is really disappointing.

Friday

Haven’t been able to keep up with my medicine. Yesterday was way too hectic. Today I need to do it right. What a struggle the last few days have been. How fragile my mortality is has become more and more obvious. Talk about uncomfortable! I’m so weary of being sick constantly! Makes me wonder if this ever ends? Where does the courage come from that it takes to live?

I’ve had many insights into who and what I am. I am by no means, necessarily, an “evil” person, someone who seeks to do the wrong things and delights in it. On the other hand, there are definite limits to my virtue, and vision, and desire to do the “right thing” continually. I try but I continually fall short. I’ve made many mistakes, some of which have had long-term consequences for me and for others; especially my family. Looking back at it, I would have hoped to have done better, much better. Instead, I became blinded by my own pain (or shame) which allowed me to pursue a path that was damaging to myself or others. I can describe it but I can’t excuse it. I wish I had seen it earlier and made a more genuine effort to correct my path. I see my responsibility and my guilt in these things. How do you make right what you’ve done in the past in the present? Especially when those who were injured, don’t want to forgive you?

Ate a little bit for breakfast. Still struggling to eat. It’s a real problem. Had one scoop of ice cream. Was able to tolerate it. Still struggling. I’ll get all of my pills down tonight! I think that I’m getting a little bit better?

Saturday

What a week this has been! I’ve been so sick, at times, that I wondered if I was going to make it. Couldn’t have been much more distressed or depressed. Can’t really talk about my anxiety without causing problems. I’ve tried to have courage throughout this whole ordeal but I find that it’s “slip-sliding” around and not easy to maintain. There’s a price to be paid for every day. Hopefully, I’ll be able to eat today? Going to try some Jasmine rice as soon as it is ready. At least I’m up early enough to make sure that I get all of my medications taken care of before the end of the day. It seems that I take at least 30 separate medications.

It’s raining today and will be all weekend. Lynne is worried about the rain turning into snow while she’s traveling to and from Oswego on Sunday and Monday. I’m not too concerned yet. This will just be a dusting. Later on will be different. This is probably the most treacherous snow area in the country but, usually, not until after the first of the year. Last year was a very remarkable exception.

Woke up very early this morning. Went back to bed and slept for an additional 5 hours. Feel a little bit better. Can’t believe that I slept that long!

What a miserable week this has been. Don’t know the nature of the problem exactly but I was miserable. It was so bad, I feared for my life. I’m certain that I’ve been this sick before since I had leukemia but I can’t remember ever feeling worse. Because of weakness, I’ve been in danger of falling all week long. Had to be very careful all week.

It’s miserable when you can’t eat.  This seems to be passing. Feeling quite a bit better right now but still very weak.

I’ve been very concerned about Lynne going to Oswego tomorrow for my daughter-in-law’s concert both because of the condition of the car (very old with a check engine light on) and because of my deteriorating condition. Those shadows are being dispersed. Is it a renewal of faith or an improvement in my health, or both? It’s all going to work out. I’m thankful for that reassurance. I have an appetite again and it’s regular if not very strong right now.

Sunday

Sunday morning came without warning,

Arriving far too early,

For thoughtful reflection to occur

Need more sleep,

And some of that deep.

To maintain strength and integrity.

Right now I’m too weak.

 

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

10 PM Stem Cell Transplant Blog: The good, the bad, the unexpected and uncertainty!

I was doing reasonably well for the last few days and then I started getting sick I didn’t feel well but I couldn’t tell why. This has been going on now for a couple of days. Gradually getting sicker but no idea exactly why. I’m sicker tonight than I have been in a long time. My mind is clouded and almost my whole body is in pain. My back and neck look like a lobster. My arms are covered with strange mottled red marks. I’m having diarrhea about 10 or 15 minutes. Feel as though I’m hung over.

Saw the doctor today. She thinks this is a continuation of the graft versus host disease that started before I left the hospital (at a minimal intensity). This isn’t minimal. realize that it could get a great deal worse. I’m feeling the pain. I’m almost overwhelmed and I know that this is just a “touch” of what could come.

I’m not very tolerant of pain. I was almost overwhelmed today. It doesn’t take long for something like this to break me down. I’m getting so tired of getting sick! Every time I start feeling better then something else comes along.  I’m tired. I’m old. I’m feeling the pain. It’s so hard to keep perspective even when you know you’ll come out the other side of every crisis. Perspective is so difficult to keep. Time to get my attitude under control and get the help that I need to minimize the discomfort so that I can keep perspective.

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?