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.

 

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