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

11/08/15 10pm Sunday Evening Stem Cell Replacement Blog: There are times when all we can see are the hard things we have to do.

MONDAY

This is a tough day because I’m prepping for a colonoscopy. Talk about misery! Much rather be doing something else. Almost anything else would be better than this. I hope I can get sufficiently prepped that I don’t have to do this again. It’s pretty terrible. Don’t know how I’m going to handle getting over to the hospital tomorrow without all kinds of accidents being possible. Got to figure this out. Want to get this thing done, once and for all!

Talked with the head doctor today. We talked about leaving here in about a month. He was pretty upset with me. Don’t know exactly why but it made this meeting uncomfortable. I wasn’t pleased with the results at all. Nothing was comfortable today. Simply trying to live through the day until things around me look a little better than they do right now. I’m discouraged and feeling misunderstood (whether that’s true or not). The longer this goes on the more brittle I feel.

My blood work was good today. My platelets were the highest they have yet been since the transplant. They were at 67k. One hundred thousand is the minimal normal level. I’m hoping this trend continues. Don’t know if I’m going to get any sleep tonight. How am I going to get to the hospital without having an “accident”?

To sum it up. Mostly good news today accompanied with uncomfortable physical symptoms and the like. Really beginning to want to go home and get out of this roller coaster. I want familiar and comfortable things in my life!

TUESDAY

In spite of all of the frustrations, and the doubts, and similar thoughts and attitudes, I suddenly realized (again), as I have over and over again, that I’m alive and will yet prosper and prevail through means long prepared, but not yet visible or obvious to me. This has always been the case. It’s only a question of faith, long-suffering, patience and humility. The Lord will take care of the rest, as He always has done and will do.

My older son has found a girl who seems to be compatible with him. I’ve been praying about that for a very long time. Have a good feeling about this one. Haven’t met her yet. I think they’re on to something.

The irony of all of this is, and has been, the harder the times are, the more faith I have to apply to them. That’s when I do my best. The easier it gets, the harder the time I have with vision and the exercise of faith. Now that I am, apparently, past the worst of it, the harder it is for me to live with this disease and the problems it causes me. My “vision” is diminished.

This has been a terrible night (coming into morning now). Most things that could have gone wrong with this colonoscopy prep have. There was plenty to clean up to do. Now all I have to do is wait to go to the hospital until it’s time for the colonoscopy to begin.

It’s over now. Let’s hope this is the low point of my whole experience and everything else is uphill from here. I’m so glad it’s over! Last night was miserable! Now, may everything begin to resolve itself and come to an end! Let the healing begin! I’m sure it will happen because I just waved my magic wand! (Meanwhile, back in reality!)

Can’t stay awake. I need to be rested in order to get through the remainder of the day! Don’t know when that’s going to be.

WEDNESDAY

I’m missing the focus I should have in this blog and don’t know how to find it. I wanted accuracy so that I can remember what was happening at the time I wrote it. Unfortunately, that is incredibly mundane. I wanted to talk about important things too. Those two goals contradict each other. And, I wanted it to be interesting. I’ve reached my goals from time to time but not consistently.

I’ve rarely  done all three at the same time. I don’t know what the solution is. This is more like ramblings with some facts thrown in. The other question is just how discrete should i be? I’m confused. I have a great deal to learn when it comes to blogging.

Still don’t have the CPAP pressure change so my machine isn’t working for me very well. It never arrived although it was sent. Don’t know what’s going on. Everything I have done to get that pressure changed over the past year has failed. It’s a though there is a giant hand interfering with me getting the results I’m looking for. No matter what i do, this hasn’t worked out for me.

This needs to happen. Good rest is such an important component of health. I’ll keep trying. I know it was sent but never delivered.

That flash drive with the new CPAP pressure finally arrived a few minutes ago. I have no idea of why it took so long to get here. Put it in the CPAP and immediately changed the pressure to 14. I’m very pleased with it. I definitely feel better although the higher pressure also means that there is a greater potential for noisy leaks. Haven’t figured out what to do about that yet.

THURSDAY

Temperatures will rise up to nearly 70 degrees Fahrenheit again today. It’s so beautiful outside.!This is definitely “healing weather”. I’m loving it! Can’t believe this is November.

Learning, growing, becoming. Doing this in a difficult world working with a clumsy body filled with all kinds of weaknesses. Gollum is my idol and, perhaps, my mentor. Never thought I would ever be that “skinny” again. Went through that as a child. People used to compare me to concentration camp internees. Now I get to do it again. This is so cruel!

On the other hand, I can now claim to be a cancer survivor for a little more the 70 days. Ironically, in all of my weakness (and recognition of it), I am strong. When I’m humble, God is my guide, my shield and my weapon against the perils of this world. I’ve been totally destroyed and yet I am unbeaten. It’s one of the mysteries of this world. You can’t be beaten. You have to give up, capitulate, surrender. It’s a strange life indeed! Very little in our world is as it appears to be.

FRIDAY

This shows my problems with memory. I had something that I thought would be very important to include in my blog. By the time I was ready to write it down, I had forgotten what it was. Being this forgetful is very discouraging.

SATURDAY

Becky and Brian are here right now. They’re touring the hospital with Lynne. Now they’re going over to  PriceRight, our market, to see what it’s like. I didn’t feel strong enough to go to either of those places with them so I stayed home. It’s been nice to have them here.

SUNDAY

Time to publish. Not much more to say. Looking for a better week to come. My chiropractic visit on Friday was good. I was able to get a lot of relief. With just the two times I visited the chiropractor, my oxycontin use is down. This is a trend that I want to see continue. Time to start the new week.

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!

 

 

10/18/15 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 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!