Sunday, December 13th, Stem Cell Leukemia Transplant Blog: I have 100 plus days since my transplant, what does it all mean?

Lasr week passed me by again,

Unlikely as that was

It could have been a “blast”

But it was so hard!

An epic struggle,

 

Survival was a constant question,

Wasn’t disappointed there,

But  in terms of quality of life (in the future)

Was told to beware

 

Very disappointing,

Almost haunting,

Only the exercise of faith,

Will get me through this short disappointing race!

 

Not doing well right now,

Future quality of  life.

More important to me.

Than survival feels right now?

 

Endure I must,

 

Never know where life will take me,

Can’t see the future right now,

If you must know,

But I imagine what I should expect,

And what I want to see,

 

Often leading to bitter disappointments too,

Because of hopes and dreams,

Which we should not have entertained,

Much less sought for,

But it’s the nature of life,

And the and the human condition.

 

 

My mistakes may still be short-term,

Won’t know till I the results are seen,

And like all the rest,

Hope to see the truth,

And accept it.

 

Much better than expected,

Sweeter than anticipated,

Only time will tell,

And time has been kind to me

All for now.

 

In spite of what I say,

Or the pains I express,

This time has still been the defining moment,

Of my entire life,

 

Made me a better man,

That what I was,

Or thought I could be,

And even who I am,

In some mysterious way,

I fail to understand!

 

Wednesday

Just started to eat again. Such pain. I thought I was a dead man this time even though now I am “cancer free”. I’m definitely not disease-free. This whole process has done great damage to me physically. The jury is still out regarding how much of my former strength can be recovered and what I’ll be able to do. I’m very weak right now.

Thursday

That was a poor attempt at self-expression while very sick. Maybe some of what I intended came across?

There have been some very difficult days this week but I’m feeling very different today. So much better. It’s hard for me to believe that I’m the same person that I was on Monday I feel so much better today. If I can eat well and exercise today and tomorrow maybe I can get out of here. I eat so much better at home.

Need to be able to walk too. If I can “stuff” my brace perhaps I can get the right “angles” that I need to be able to walk enough to make a difference?

Friday

Tried fixing the brace. Worked reasonably well. Both my appetite and my strength are coming back. Feeling better is a relief.

Saturday

My brother arrived today from New Mexico with his wife Susan. Should see both of them tomorrow. Looking forward to it.

I’m fighting foolishly with the staff but I am definitely feeling stronger again. All this give me more hope.

Sunday

Scott and Susan came and saw me today. It was great to see them. I’d love to see them with  prospering more than they are! They’ll be back tomorrow. Time to publish. Good night! This was a happy day! Should be going home on Wednesday!

 

 

 

 

10pm Sunday, 12/20/15 Stem Cell Leukemia Transplant Blog. Time to go forward again!

Monday

Starting another week. Definitely more healthy. Ate almost 3000 calories for my mid-day meal and I’m still eating. The change has come but I don’t know what it means. What does this all mean?

It’s about time to go. Problem is I don’t know where to go from here. It’s definitely time to start working again. I can feel that I have sufficient strength and clarity of mind to begin working again. And, I have a plan. Guess we’ll see how well it works!

Tuesday

Was able to work a little bit today in spite of the difficulties. Changing the direction has been difficult and will probably cause me some serious problems with my son but the changes are the right thing. Need some overt success or my feelings on this matter aren’t going to matter. This whole thing may be very difficult. Only time will tell.

Wednesday

Now I’m out! Feeling pretty good. Need to get to bed. See how I feel tomorrow. It’s pretty late right now! Can’t reconcile my medications right now!

Thursday

First day out. Very disappointing results. I’m sick all over again and I don’t know why! What am I doing wrong? Why can’t I figure this out myself? I’m worried that exactly the same thing (gradually being incapacitated) will happen all over again but without any understanding as to why! Don’t feel like eating again.

Friday

Walked out into the kitchen. On the way back tripped on the two steps up. Hit my head so hard! I was surprised. Didn’t expect that at all! How did that happen? No recollection at all. Just remember going down very quickly and uncontrollably. That’s gonna be so black and blue! It’ll be difficult to explain to medical staff on Tuesday when I go back there. Don’t want to have to do that at all. Enough of that!

Showing remarkably little damage from that terrible fall today. Did I “dodge the bullet” again? I can only hope so. I’ll have to learn to be more careful and “act my age”. What did I trip over? Absolutely no control over that fall. Hit the floor before I knew I was falling! And yet, I feel fine now?

Saturday

Back again. Feel better again today. Perhaps I’m making progress but at an uneven rate or something like 2 steps forward and 1 step back? I think that I’ve been surprised by the amount of work and time this “rehab or getting back to normalish” is taking. Wish I felt more courage!

It’s going to take just as much effort for me to rehab as it has for me to survive. I’m going to have to gear up for this. I didn’t understand how this is going to work. And, in some respects, it may be too late already.

Figured out what I “tripped over”. It was the floor. The  floor is covered with a wood laminate. The subfloor is very uneven. There’s a very obvious spot of “low to high” right before those two steps. Wasn’t paying attention. I am now!

Sunday

Very early Sunday morning (still Saturday night to me). I was able to work today, to get some stuff done. I think it may have been good. I don’t know if I was able to pack the tweets tightly enough to determine whether I was successful or not. Ultimately, with advertising, no response means that it can’t be successful (unless your metrics for success are incorrect). And therein lies my dilemma. Measurement and clear-headedness? Need some rest, time for bed once more!

Maybe a little bit more in the morning?

 

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 Stem Cell Leukemia Transplant Blog 11/29/15 Is this what is actually happening? I find it hard to believe!

MONDAY

I’ve been sick far too long!  I’ve been on a sickness carousel. This has been a revolving door of low-grade and high-grade misery. Sometimes it feels as though it will never end or that the ending that I get is one that I’ll find very disappointing (even after all of this). I can’t make sense out of any of this.

Now I’m feeling better again. My lungs are beginning to clear the fluid out from around them. I’m feeling quite a bit better.

It can be very easy to lose perspective. I’ve come close. Doing my best to persevere.

TUESDAY

I feel a little bit better again today. This is giving me more relief.

Had a bone density test today. I also saw the doctor. They are beginning to zero in on the lungs and the fluid around them as the main cause of my afflictions. That seems to be closer to the heart of the matter. I’m satisfied that I’m getting the help that I need. Now I’ve got to take enough of the medicine to ensure that I can regain my health. Missed almost all of my medications today because of being so busy, on the one hand, and weak on the other. Have to make sure this doesn’t happen again. I’m so tired and weak all of the time plus, there are more than 30 medications that I take every day. Need to get this done! Never thought that survival might come down to an issue as simple as this. Can’t let that happen.

WEDNESDAY

So far this has been a very difficult week. In spite of all of the problems, my blood chemistry is looking better every time I receive the results. Considering how I feel, this is amazing! Eating a little bit more all of the time. At some point there has to be a breakthrough, doesn’t there?

Gerrit and Cheryl will be here tomorrow. A touch of reality in an otherwise surreal situation. Nothing is proceeding the way that I would have expected it to or wanted it to.

THURSDAY

Cheryl and Gerrit arrived around noon. Very good to see them. Still don’t feel well. I want to feel healthy again so badly!

Swollen ankle due to water retention? Didn’t sleep much last night. Need to get all of these things under control. There are so many ways to be uncomfortable! I’m discovering more of them all the time. I need to be able to eat and to rest before I get to go home. As simple as all of this appears, I need to figure out how to do it.

At least I’m beginning to eat better again. Wish I could get clear of these other problems.

Living this way takes courage, more than I could ever have imagined. The longer this goes on, the harder it is. I’m very hard-pressed!  The only saving grace that I can find in this situation is that I am gradually getting better!  It was good to see Cheryl and Gerrit. Cheryl played her piccolo for us after dinner. She played the movements that she soloed in her concert the previous week which means I was privileged to hear them. She is so good. It was wonderful to hear her play again. Too bad they went back home the same day.

FRIDAY

If  I were a drinker, I would say that I felt “hung over”. At any rate, I’m feeling the same lack of clarity and a similar level of confusion. It’s begun to pass during the course of the day. Was it something that I ate yesterday? Eating very slowly but eating almost continually now. I’m eating simple foods but they have appeal to me! I’ve been able to eat and rest all day. It’s been really nice.

SATURDAY

It’s a dark and gloomy day with temperatures close to freezing. The good news is that I’m feeling better again. Wish I could get rid of this water retention. Everything is beginning to look up. I should have enough strength soon to show some  initiative and get things done, perhaps work a little bit. I’m looking forward to it.

Right now, I’m eating Oreo cookies and a new type of Town House cookie, neither of which I probably should be eating but which demonstrate how much better I feel right now.

SUNDAY

Definitely getting better. I’ll go to church then I’ll rest up today for a trying week to come: Removing fluid from around my lungs on Monday and a bone marrow biopsy on Wednesday. For the most part, I’ve enjoyed the week. Hoping next week is even better.

This has been a promising week with a complete change of directions regarding my health. It looks as though my primary health problems are being resolved. I relieved and very thankful! Let’s see what next week brings instead!

Good night!

Sunday Night Stem Cell Leukemia Transplant Blog, November 22, 2015 Trying to express my thoughts with a clarity that I often lack.

Monday

Arrived here at this apartment on the 28th of September. My wife, Lynne, has had to take care of me. She prepares my pills (about 30 a day), makes sure that I take them and gives me my Tachrol (which controls graft vs. host disease). She also prepares most of my meals. She’s responsible for seeing that I do what the doctors’ tell me to do and that I remember and go to all of my appointments. I can’t explain the process much better than this.  In other words, she takes care of me. She’s been so diligent! I’m very thankful. She’s shown so much dedication! She’s been a blessing to me for certain.

I have a number of medical tests and appointment tomorrow. Hopefully, they will reveal what the problems are which are holding me back right now. I need to be able to eat and to regain my strength. Hopefully, someone will be able to help me understand the best way to do this. I have to learn what I need to do to begin eating again. Definitely losing strength. Can’t afford to lose any more weight. I don’t understand what’s happening to me.

Tuesday

Not eating for me ha reached a critical level. If it’s not already too late, unless I begin to eat as I should now I’m going to have serious, if not critical problems. I’ve got to impress this upon Lynne so that she can understand just how crucial this has become (although there’s little she can do about it). I don’t want to go back into the hospital again. Don’t think I could handle it. I want to get some “jasmine” rice because I know that I will eat it. Hopefully, my new prescriptions will help make it easier for me to want to eat.

Wednesday

Yesterday was a day of testing for lung and heart problems. The only results that I got back were for my breathing capacity which has diminished by 50%. I was given inhalers and antibiotics with which to deal with these problems. Just using them today I feel better than before. I was able to eat a modest amount of food tonight. It felt good after not eating more than a bite or two at dinner each evening. I’m relieved. I’m beginning to think I’m going to get past this, heal and go home. That, at least, is the plan. Tomorrow, in addition to blood tests, I’m having a bone marrow biopsy. We’ll see what progress I’ve made. I just want to go home! More tomorrow.

Thursday

Discovered that I’m not very good at this kind of “documentary” blogging. If I blog in the future, it will have to be on other topics about which I feel more passionate and committed to. Had to cancel the bone marrow biopsy because I wasn’t healthy enough to go through with it. I’m very uncomfortable. This is really disappointing.

Friday

Haven’t been able to keep up with my medicine. Yesterday was way too hectic. Today I need to do it right. What a struggle the last few days have been. How fragile my mortality is has become more and more obvious. Talk about uncomfortable! I’m so weary of being sick constantly! Makes me wonder if this ever ends? Where does the courage come from that it takes to live?

I’ve had many insights into who and what I am. I am by no means, necessarily, an “evil” person, someone who seeks to do the wrong things and delights in it. On the other hand, there are definite limits to my virtue, and vision, and desire to do the “right thing” continually. I try but I continually fall short. I’ve made many mistakes, some of which have had long-term consequences for me and for others; especially my family. Looking back at it, I would have hoped to have done better, much better. Instead, I became blinded by my own pain (or shame) which allowed me to pursue a path that was damaging to myself or others. I can describe it but I can’t excuse it. I wish I had seen it earlier and made a more genuine effort to correct my path. I see my responsibility and my guilt in these things. How do you make right what you’ve done in the past in the present? Especially when those who were injured, don’t want to forgive you?

Ate a little bit for breakfast. Still struggling to eat. It’s a real problem. Had one scoop of ice cream. Was able to tolerate it. Still struggling. I’ll get all of my pills down tonight! I think that I’m getting a little bit better?

Saturday

What a week this has been! I’ve been so sick, at times, that I wondered if I was going to make it. Couldn’t have been much more distressed or depressed. Can’t really talk about my anxiety without causing problems. I’ve tried to have courage throughout this whole ordeal but I find that it’s “slip-sliding” around and not easy to maintain. There’s a price to be paid for every day. Hopefully, I’ll be able to eat today? Going to try some Jasmine rice as soon as it is ready. At least I’m up early enough to make sure that I get all of my medications taken care of before the end of the day. It seems that I take at least 30 separate medications.

It’s raining today and will be all weekend. Lynne is worried about the rain turning into snow while she’s traveling to and from Oswego on Sunday and Monday. I’m not too concerned yet. This will just be a dusting. Later on will be different. This is probably the most treacherous snow area in the country but, usually, not until after the first of the year. Last year was a very remarkable exception.

Woke up very early this morning. Went back to bed and slept for an additional 5 hours. Feel a little bit better. Can’t believe that I slept that long!

What a miserable week this has been. Don’t know the nature of the problem exactly but I was miserable. It was so bad, I feared for my life. I’m certain that I’ve been this sick before since I had leukemia but I can’t remember ever feeling worse. Because of weakness, I’ve been in danger of falling all week long. Had to be very careful all week.

It’s miserable when you can’t eat.  This seems to be passing. Feeling quite a bit better right now but still very weak.

I’ve been very concerned about Lynne going to Oswego tomorrow for my daughter-in-law’s concert both because of the condition of the car (very old with a check engine light on) and because of my deteriorating condition. Those shadows are being dispersed. Is it a renewal of faith or an improvement in my health, or both? It’s all going to work out. I’m thankful for that reassurance. I have an appetite again and it’s regular if not very strong right now.

Sunday

Sunday morning came without warning,

Arriving far too early,

For thoughtful reflection to occur

Need more sleep,

And some of that deep.

To maintain strength and integrity.

Right now I’m too weak.

 

10:00 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!

 

 

10/25/15 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