11/01/15, 10 PM Sunday Stem Cell Replacement Blog: Need to do this blog for the sake of my own sanity whether this gets followers or not.

MONDAY

Didn’t have to go in to the clinic today. Found a cemetery to walk in and a gas station! We just barely bought gas for the first time since Lynne arrived here almost a month ago. That shows just how little driving we’ve been doing. We’ll be taking some more trips back to Forrest Lawn Cemetery for the peace that it affords. Hope the weather holds up for awhile longer.

It’s nice to be able to get outside in nature. Where we live right now in our apartment, we’re surrounded by new concrete and steel construction going up on two sides of us from before dawn until after dark every day. As beautiful as they have made this location where we live (there’s a street-side park), it will still be nice to get away from all the noise and the construction. The construction companies probably have to get some sort of covering over the construction site so that they can continue working through the Winter. They keep working everyday  until it’s no longer possible to keep working.

Last night we were awakened about 3:30 am by someone ringing our doorbell. Got up but didn’t go downstairs. Shortly thereafter I saw someone trying to get into the main building (probably ringing the doorbell). Shortly thereafter, the police showed up (which is what the signs on the door said would happen) and the individual in question was taken away. However, I was awakened and stayed up for about an hour.

I’m getting better but I don’t feel well most of the time. I cycle from feeling good to bad throughout the entire day. Might feel good at 2pm but miserable by 3pm. I’d like to feel better than this. Maybe the change will come soon. I’m hoping!

It was another beautiful day today. Hope they just keep on coming. Want to spend some more time outside before winter starts to set in.

TUESDAY

My blood chemistry took a huge hit. Not enough to put me into danger but it’s a big step backwards. That’s very disappointing. Next test is on Thursday. We’ll have to see what Thursday brings. Hopefully, results that are much improved. I’ve noticed that the blood chemistry tends to respond in a “wave-like” rhythm. Perhaps this is a very normal pattern. They’ve found a new infection. This one both worries and embarrasses  me. I’ll let you guess where it’s located. Apparently, all of the medical people who need to examine it are female. Does this ever end? I might as well just walk around naked! I’m very frustrated right now. Think I’ll take a nap!

WEDNESDAY

When in doubt or frustrated, take a nap! That seems to be my solution. Speaking of solutions, I’ve found an answer for changing the CPAP pressure by remote. My supplier, Marra, suggested that I take the monitoring flash drive out of the CPAP and insert it into my computer. When they receive the authorization to change the pressure, they will download it to the flash drive. When I take the flash drive and re-insert it into the CPAP, it should automatically change the pressure to the correct level. It sounds good to me! I’m looking forward to getting the pressure correct on the CPAP and sleeping well for the entire night. This is very encouraging. It’s a rainy and windy day today. I’m glad that I don’t have any appointments that I have to go to. I’m so pleased with all of the good things that I have in my life. I have a great deal to enjoy and I do.

Wasn’t able to change the pressure. Didn’t work. Tech is sending me a flash drive with the pressure already set in it. Need to insert it and the pressure should automatically change.

Still, I need to take care of the spiritual side of my life.When it comes to prayer I do a pretty good job. Scriptures, on the other hand, are another matter. I need that influence in my life. The same is true of church attendance. I’ve been attending regularly but I’m still pretty feeble. People from church want to visit us but I’m really not up to it. Neither is Lynne. She’s always been a little bit reclusive. She prefers to spend her time with family. That’s all the energy that I have (and have had) for many years.

I’m finding the need to use a little bit less painkiller. Is it because of less pain or less anxiety? Inquiring minds want to know! Next thing I need to do is to find a chiropractor. That could bring down the need for pain medicine considerably!

THURSDAY

Once again, here I am, betwixt and between. This week has been a time of minimal energy and little progress in terms of improving my blood statistics. Something’s holding me back and I have no idea what is going on. I’ve been sliding back but not very much. I don’t know how to read these things so I become confused and anxious. So much more to learn and so little ambition. Trying to follow through but my mind isn’t clear. If it were, it would help me so much. The other problem is this computer. Often, when I’m ready to work, the computer isn’t. Sometimes it won’t let me log in (with the correct name) or the internet doesn’t function the way that it should. Impediments to getting work done. These are concentration destroyers as well. Oh, well, there is truly opposition in all things. I need more strength and insight into my own character. Tomorrow’s a new day. Anything’s possible. That’s the good part. Never know what is going to happen next.

FRIDAY

Had a tough day today with intestinal problems. There was a lot of pain and, frankly, it had me scared. According to my doctors, I’m losing weight. I know for certain that my mind isn’t very clear. Don’t know what to do about either issue. In general, I’ve been enjoying myself and often feel reasonably comfortable. Then it passes and I’m not feeling well again. I’m actually beginning to look forward to my colonoscopy on Tuesday in hopes that it will provide me with some meaningful answers that will help me get beyond this point. I feel that I need some kind of a breakthrough but I don’t know what or how.

This whole process is bewildering to me. I wish I could rest but I don’t feel as though I’m able to. Still don’t have the pressure change in my CPAP. I’m certain that will help as well. At least it will mean better rest. What a struggle it has been to get this done! Getting this pressure changed should not have been difficult.

Still don’t feel like eating. Every time I eat I feel bloated. Then I have burning in my intestines which continues right up until I have a bowel movement. That can go on for an hour or so. I don’t understand what’s going on at all. I wish that I were done with all of this but that’s not up to me (obviously).

Went to a chiropractor today. He was able to adjust my neck (which is notoriously difficultly to do).Definitely felt better afterwards.

SATURDAY

Same thing again. Expecting one thing, getting another. The way that I feel during a day changes kaleidoscopically. It just never ends. I don’t know what to do about it. Every time it appears that I’m making straightforward progress, something else happens. I’ll be so glad when this is over. Right now, I think I’ll take another nap. Beats sitting around being frustrated.

SUNDAY

Went to Church today. Lasted about 2 1/2 hours. They had a joint meeting at the end that was too much for me. Too many people in too small a space. I was glad to be able to go to church and equally as glad to be able to leave that crowded place. Nevertheless, got a spiritual boost from the effort! Oh, the great news at church is that they just started a Spanish speaking class today. I’m in heaven. I was largely ignored but I still enjoyed myself!

More tomorrow. (I’ll publish again next Sunday). I hope somebody finds this useful because I have a pretty boring life. At least the pain is diminishing. Notice it less and less. I’m hoping that the chiropractic visits help me with that too! That’s all for now folks!

 

 

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.

10/18/15 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

10 PM Stem Cell Replacement Blog: Your life redefined and there you are without the definition!

This leukemia, although very difficult, has been a great blessing to me in my life. It’s been a wakeup call highlighting what is important in my life. It’s obvious to me that family is the most important thing in life. I knew that before I got leukemia. Love, as expressed through service and kind acts, is of the essence. I’ve seen some wonderful and selfless service under many sets of circumstances.

When I survive this, and I believe I will, how will this play out? Will everything simply slip back into old familiar patterns or will I find new opportunities and different possibilities? The old question of “What am I going to do when I grow up” keeps raising it’ ugly head.

How do you decide it’s what you want to do unless you know what that is? Starting over again, regardless of your age, is a daunting prospect. Yet, with leukemia, and other life-changing and traumatic illnesses it happens all of the time. Worst part of it all, you never know for certain, whether the disease is coming back or not?

I suppose the only answer to the last question is to simply to accept each day for the gift that it is. For me, the remainder of those issues are open to examination. Personally, I know that I need to write.

I chose not to write for many years. Now, I’ve reached a point where writing has become a compulsion for me. The raw talent is there but I never developed it to the extent that I might have. I have a lot of catching up to do if I intend to pursue this course seriously.

I already know that my writing has some commercial value. I’ve seen that already. I suspect that will remain more or less static unless I can boost my production levels and showcase my skills in more lucrative markets.

I enjoy writing many things. Sometimes I’m a gifted (although very impatient) poet. I write philosophically and politically as well.

I was surprised to find just how much I enjoy writing tweets for twitter, especially political ones. Don’t know what to do with that. Is there an avenue to be pursued there? Then, there is also the issue of time. How much time do you have left to pursue you’re passions? How committed are you to what you want to do? Is it really as important to you as you think it is? Those are the questions to which, at present, I have no answers.

Writing this blog is an experiment. To do it right, requires a balance and dedication that I’ve been unable to replicate on a continuing basis. I want to be able to document what happened. In spite of that, I get sidetracked very easily. Some of that may be the leukemia (chemo-brain) and the rest of it is probably personality.

The most important role in life appears to be service through self-expression. All of us have a need to add value but we all have a different idea of how to do this.

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!