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 11/15/15 Sunday Stem Cell Replacement Blog: Don’t know what to expect so you learn to expect anything.

Sunday Evening:

This has been difficult. Trying to decide what to do next! To say the least, I am confused.

Monday Evening:

Be going home reasonably soon.

Tuesday Evening:

Rainy day today. Most of my thoughts and thinking are on hold. Need a clear head.

Going home soon (to Adams) but have no idea of what I’ll be doing after that. Need to develop a viable plan and then follow it. I need clarity. That’s the starting point.

I’m stunned by how quickly this is coming up. I was expecting to spend about another month here.

Wednesday

It’s been another slow day. Very tired. Not getting anything done. Need more strength and understanding of what is happening with my health. Not getting any insights. I need more strength! Don’t know how to achieve that goal. I’m still eating almost nothing. I wish I understood what was going on. So far I don’t. I’m going to try to get more sleep tonight. The CPAP pressure has been raised and I have a new mask.This should make it possible for me to sleep much better. I’ll find out for sure tonight.

My Hootsuite program isn’t permitting me to send out tweets to multiple addresses. That’s the whole reason I have that program. All of my programs, those that I need, are so buggy! It makes me feel helpless and incompetent.

Need to get past this point in my healing and my “incarceration”. I’m ready to go home and find some normalcy in my life. This has been going on for more than a year. I’m beginning to lose perspective.

Thursday

Trying to do better.  I still don’t have much of an appetite or any desire to do anything. It’s tough trying to care right now. I don’t know what I can do or have to do in order to make the progress that I need to make to get from here to where I need to be. What do I need to do in order to get beyond this point? I just don’t see any progress being made at all.

Anyway, the CPAP is working properly but it is very difficult for me to put on. I should be getting better rested as a result. Maybe that will help? Something has to work in order to get me out of this state of mind. I’ve reached the point that I’m neither going forward nor backwards.

I’m concerned about the future. Have no idea of what it’s going to be. I know what I want to happen but I have no idea of how my life is going to go forward. Anything could happen. I have absolutely no control  over what anyone else does and my actions, at the present, are not very effectual towards meeting any of my own goals.

Friday

I’m still mystified. Don’t know what to do in order to break this “deadlock” in which I don’t feel as though I’m progressing. This frustrates me. What are these problems connected to? Is the issue with my stomach? Does it involve all of the fluid surrounding my lungs? Is it some subtle form of graft versus host disease that I can’t detect? What about the sore in my mouth? I have absolutely no answers myself. What do I need to do next in order to move my “healing” forward?

I bought some supplements like ensure to make sure I’m eating at least the minimum that I need. I get at least the minimal amount of exercise so that shouldn’t be an issue. I can’t make any sense out of this at all.

My attitude is beginning to break down but maybe that was inevitable anyway after the passage of so much time. It doesn’t help that I have no idea of what I’m going to be doing. Nor, at the moment, do I have any desire to do anything anyway! That’s not typical of me. So much I don’t understand. Definitely lacking a sense of direction.

Begun to eat more. It’s uncomfortable to eat but, when I do, I feel better. There has to be a way to get past this so that I can eat normally again and have  my body respond normally to it.

Just heard about the Paris terror attacks. Terrible! This has to change our overall response to the international terrorists! Will we find the “will” to wipe the known terrorists organizations off the face of the earth? If not, I can assure you that this will continue.

Saturday

ISIS has been provoking the West more and more directly. Sooner or later they will get a massive response which should lead to their elimination as a power in the Middle East. So far, the Western powers haven’t been focused enough to employ enough of their power to eliminate them. The Paris attack may be the beginning of the end for ISIS. Only time will tell.

Feeling better today. Going to take the supplements again today. Is this a trend? I think that it may be. As my strength comes back my appetite seems to as well. Reverse of what I would have expected. Each day needs to get better than the last from here on forward or I’m probably not going anywhere soon. We’ll see.

Went into the clinic today without an appointment. Lynne changed the dressing on my central venous catheter last night. Looked really irritated today. Decided not to take any chances. The nurses changed it again today with different products. Looks okay now. Can’t be too careful at this point. I definitely want to get to go home soon.

I’m feeling a little bit better. It’s beginning to warm up again. Easting better than last week. The energy drinks are helping with that. Hopefully, I’m beginning to move past these problems. I’m doing what I can.

Sunday

Water is beginning to taste good. So I’m drinking more of it. I like roasted peanuts too. Eating those things and the protein drinks and some vegetable and rice. At least I’m eating now. It’s disappointing having to go through this process of learning how to eat all over again. Oh, my facial hair is coming back in again but, this time, it’s almost all white. That’s a real disappointment. Would have preferred a mixture with red in it again!

Can’t help but wonder who it was who so generously offered my his stem cells? Know nothing about him except he was 26 years old. My first donor backed out. For some reason he only wanted to do a “bone marrow transplant” which, according to what I’v heard, would have been considerably more painful. Don’t know if their are any particular advantages to it either. That was a strange situation. Had a feeling that he was going to be a no-show but I didn’t know why.

As long as I can rest, I think I’ll take a nap. I sleep much better now that I have a new mask on my CPAP. So, see you all later.

 

Bruce

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: 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

STEM Cell Transplant Blog: It’s more than a process, it’s a way of life for now.

Hooray! Got to go to church today. First time in a couple of months. It felt good even though I had to “keep my distance” from the other members while I was there. Can’t afford to get an infection at this point. It was a good experience for me!

What the future holds is another matter. We’ll see about that when the time comes.

I’ve felt very quiet for the last couple of days. There are times when I wish that I understood myself better. Is this something everybody goes through?

Where do I go from here? Survival is looking more and more likely with a good chance of complete recovery. If that’s the case, what will I do with the rest of my life?

Will I be able to live a high-energy lifestyle or will I be reduced to living the life of an idle witness to the events in the world around me? Above all, I want to  spend my time wisely and well. I’d like to be productive in the most complete sense of the word. What’s really going to happen and how much control will I have over it?

My mind hasn’t been very clear or really active in the last several days. This is probably due to the changes that are taking place in my body as a result of the transplant.

At least I’ve been able to relax. When I get back to the hospital tomorrow the blood tests will show how “stable” my blood chemistry is capable of being without 24/7 monitoring which, frankly, is beginning to wear on me.

Have a lot of things that I need to get done in the next several days including the completion of the sleep study or, at the very least, get it scheduled.

I’m eating and gaining weight a little bit every day. This is crucial. Can’t do much of anything else until I’ve reached safe weight levels with a corresponding increase in strength. It’s becoming easier to do now that food tastes good again.

As a footnote to all of this, I have 29 regularly scheduled pills that I take on a daily basis as well as those which are administered on an “as needed” basis. I have no idea of how I would keep track of all of this without my wife’s help.

Ever since the graft versus host medicine was adjusted I’ve been feeling calmer and quieter. The flareups of skin irritation and itching have been less severe and less frequent as well. My gastric problems have almost been eliminated as well.  Now if I could only think, and plan, and follow through most of the time I’d be doing pretty well. Hopefully, I’ll have more to say tomorrow than I have today.

More tomorrow!

10 PM Stem Cell Replacement Blog: Finding my cure for leukemia and a lot of surprises.

It seems that every day I feel a little bit better, in some way or another and, at the same time, I find myself exhibiting a new or unexpected symptom of graft versus host disease. Or, at least I think it is. Symptoms vary so much.

Didn’t have to go into the hospital today. Slept in. Forgot to eat breakfast and lunch. More than made up for it at dinner. About four nights a week we eat dinner at the”main” house. We get fed sumptuously. Stopped eating in the hospital. Since I’ve been here, I haven’t stopped eating. I enjoy the people. Their stories are fascinating. It makes me realize just how fortunate I have been.

At the end of each day, no matter how it goes, we get to lock ourselves away in our apartment where we have peace and quiet. That’s a special blessing. More than enough comfortable space in which to rest and relax. I feel rested for the first time since I left the hospital.

Wish I had more to say tonight but I don’t. I think I’ll go to bed and get some rest. So, my apologies. Time to go to bed.

More tomorrow!