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.

 

10/25/15 Sunday Night Weekly 10 PM Stem Cell Transplant Blog: Some changes are dramatic but most show up as small incremental differences over time.

Sunday Night

Thought I’d start it early in order to make sure that I don’t forget about it. Looks like the weather for the upcoming week is going to stay consistently good again. This is Buffalo? The place where they had the huge snowfall last year before this date? It’s entirely different this year. Very pleased with the weather we’ve had here since I’ve been out of the hospital. Nothing to complain about at all.

Doing the rest of the sleep study on Tuesday night. People in the Ward were kind enough to volunteer to give me the rides that I need there and back. Lynne is more or less night blind and Rte. 33 is a dangerous road with a speed limit that’s too high for the conditions. I’d drive except for the fact that I’m restricted. I don’t want to run “afoul” of either the doctors or enforcement.

Monday

A new work week. It’s a pleasant day and I’m feeling stronger again. I still have to make a point of eating enough to maintain or increase my weight. Eating heartily still isn’t coming naturally. I don’t like having to pay attention to things like eating. Eating should, naturally, take care of itself.

My blood values on the phlebotomy testing have slipped a little bit but they are still good. Nothing to worry about at this point. Let’s hope that it stays this way.

The dinner prepared by volunteers tonight is a pork tenderloin dish served with wine on some kind. People here are in to their wine! Hope they don’t have to drive.

Well, I suppose I ought to get over there to enjoy a good meal. Hope I’m hungry enough to eat! Too bad, wasn’t hungry but the food was great. There was an absolutely awesome squash soup with cayenne to spice it up. Delicious!

TUESDAY

That was last night. Tonight was every bit as good. We’ve had some wonderful dinners over in the main building. The company can be great!

We  were able to enlist some help with the rides. This way Lynne doesn’t have to make the trip. She doesn’t have to worry about driving and I don’t have to worry about her.

Saw some of the Buffalo waterfront today. There are three former Navy ships at anchor. There’s a submarine, a destroyer and a guided missile cruiser. It was pretty interesting but I wasn’t able to complete the entire tour because I am still weak. Saw about half of it and that was all I was capable of doing.

I’ve just run out of time. Need to start watching for my ride.

WEDNESDAY

Had my sleep study last night. Slept very profoundly. When I woke up I felt profoundly rested. Surprised that feeling didn’t last all day. Within a few hours I was back into my state of being semi-asleep all of the time where, if I sit down in a chair, I’m nearly asleep in a few minutes if I’m not concentrating on something at the time.

Fortunately, I was able to arrange rides both to and from the study. I wasn’t certain that I was going to be able to because I had misplaced the telephone numbers of those folks who were planning on giving me the rides. Thanks to some very patient members I was able to work that all out. Their help has been a great blessing to me. Everything worked out great.

When you’re sick or disabled, little things seem to grow in importance until they appear to be far more important than they would otherwise be. I hope I can get back to normal activity levels soon!

Had some good news and some bad news today. The good news first! I’m going to be visiting the hospital clinic much less than before. I’ll only be going in to see the doctors and the nurses three times each week. We started out at 6 to 7 visits per week. This will be such a relief.  According to them, I’m doing very well. I was glad to hear that.

Now for the bad news. I was in the clinic when my stomach began to ache. It kept getting worse and worse until it was almost overwhelmingly painful. This went on for almost an hour. I had no idea when it was going to end but it went on for about an hour. Don’t know what caused it. Every time I think that I’ve seen it all something else comes along and amazes me with how painful it can be.

Thursday

More good news today. Our 100 days after the transplant (the time we were told we have to remain in Buffalo) began on the day of the transplant not the day I was released. That shortens our stay by as much as 20 days potentially. We could be home well before Christmas. That would be wonderful! And, a little bit sad as well. For the most part, we’re really enjoying getting out of town this way. In some ways (with the exception of the disease), it’s almost like a vacation.

I’m not getting stronger very quickly. I’m disappointed with that. I was hoping for better results. Still, I’m doing okay. Hope it continues this way and they figure out where the graft vs. host disease is manifesting itself and how to keep it under control. Right now it appears to be in my stomach and digestive tract. We’ve also just been told they are going to try to keep us down to 2 visits per week. That will be wonderful! Maybe that will give me time to get some work done?

Got the results back from my sleep study. The pressure is supposed to be set at 14! It’s currently set at 8. No wonder it doesn’t work very well for me! Now I need to take the steps to get it changed. Not certain how to get that accomplished from here.

Friday

Life is an exhilarating experience but we become so used to it that we begin to see it as being mundane. Life is exactly as it was intended to be: A very difficult journey of discovery from start to finish with unending opposition and constant work right up to the end. It’s not something that we always appreciate.

We forget what a great blessing it is and what a wonderful experience. Crises such as my leukemia make that point abundantly clear. Every day in our life is such a blessing but also a challenge of almost equal dimensions. Life is a struggle from beginning to end. It was meant to be this way. Our resentments, our fears and our woundedness come from the fact that we forget this or never knew it to be true in the first place.

Our Father in Heaven is always waiting to help us. Unfortunately, that is an understanding had by remarkably few people. Satan has been extremely effective in obscuring this fact and other essential truths as well. And the world groans under the weight of darkness and sin because of the deceiver’s influence.

People are very worthwhile. Definitely worth the effort it takes to deal with them yet we often fail to see it because of their faults and ours. That’s tragic. We have to do better than that. The only way that I know hoe to do that is to develop an ever increasing humility. Humility permits us to see the good in the people around us and to recognize that we are not in-charge of our lives. There are a few things which we can control in this life and more which we are not. We have a great deal of difficulty in distinguishing which is which. That creates many of our problems.

WordPress can be such a problem is to use. Without even knowing it, I just added on several paragraphs to an older blog while I thought I was adding on to this one. Things like that shouldn’t be possible. Furthermore now I can’t find that blog anymore. It shouldn’t be this difficult to use.

Saturday

My blood chemistry is approaching normal. My platelets are are 66 which is the lowest number that I have. When it gets up towards 100 I’ll feel pretty comfortable with the numbers. The tests tell me I’m healthier but how I feel betrays the numbers. Feeling sick so much of the time is very discouraging. Hopefully it will start improving soon.

Sunday

Went to church today. Generally, I enjoyed it. Three hours is a long time when you’re not feeling well. And I’m not but I know that it could be a good deal worse. Well, that’s it for this week. Now the question is, was this a better way for me to present the blog or worse? It’s hard for me to tell.

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 Transplant Blog: Aftermath and after thoughts!

I lived through the transplant process, so far, everything is proceeding more or less as expected. Because of that, you’d think that I’d begin to relax, wouldn’t you? That’s not happening. Why?

I have a theory. To me it appears that when the pressure is on, your mind chooses to respond by “hunkering down” and dealing with the real and present danger with which you are faced. When those challenges begin to fade away, your concerns come back and begin to take over again. Those anxieties can manifest themselves in a large variety of ways.

What I’m experiencing right now is unfocused anxiety. I”m worried about everything, not knowing what to be concerned about in the future. I’m worried about what will happen next. I’m also concerned about whether or not the Leukemia will come back. These worries rotate from one series of things and then through a series of others.

I’m getting better every day but the path isn’t totally straightforward. I’d like to see some more warm weather. This cold is more than I can handle at this point. I’ve already made one “nearly complete” recovery from Leukemia ALL. This time I’m hoping it will be totally complete and, I suppose, subconsciously, worried that it may not. Life takes faith and I need to exercise faith more consistently. Sometimes it’s easy to do and other times it isn’t.

I’ve received excellent medical care but I am so happy to be out of the hospital. i’m beginning to feel more like a human being all of the time. I hope to be able to stay out of the hospital! One day at a time. Only time will tell!

More tomorrow.

10 pm Stem Cell Transplant Blog, October 1st, 2015. Surely a journey of discovery!

For now on, I’m planning on using the date in order to identify the blog. What I was trying to do before was simply too complicated.

The weather has definitely changed. I had the opportunity to enjoy one last day of the extended summer-like weather before it changed. I’m very happy that I got to do that! It helps me to keep going for some reason.

I woke up this morning feeling good. More than that, I felt normal! I’d almost forgotten what that felt like! That made it a pretty good day. Next thing we need to do is to learn how to turn on the heat. I might have figured that out already. I hope so! It’s getting cold.

My strength and my appetite are coming back too. I’m eating a little bit almost all of the time. Could be better days are ahead soon where I begin to feel like myself more often.

The question becomes who I am. Some of the results from the bone marrow biopsy are back. From what they have so far, 85% of my bone marrow belongs to the donor which makes 15% of it my own. What I don’t understand is this, is how in the world could any of my bone marrow have survived what they did to it? Eventually, it has to become all my own otherwise I’ll have a whole new set of problems.

They’re telling me that all of the surviving bone marrow should belong to the donor by the end of 90 days and certainly by the end of the process. All of my blood chemistry numbers are looking better than before. Progress is being made.

I so much want to forget all of this. It will be wonderful when, and if, that happens.

today was a good day. I’m hoping for many more like it.

More tomorrow.