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?

 

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!

 

 

 

 

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!

10:00 PM 11/15/15 Sunday Stem Cell Replacement Blog: Don’t know what to expect so you learn to expect anything.

Sunday Evening:

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

Monday Evening:

Be going home reasonably soon.

Tuesday Evening:

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

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

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

Wednesday

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

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

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

Thursday

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

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

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

Friday

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

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

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

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

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

Saturday

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

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

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

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

Sunday

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

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

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

 

Bruce

10/25/15 Sunday Night Weekly 10 PM Stem Cell Transplant Blog: Some changes are dramatic but most show up as small incremental differences over time.

Sunday Night

Thought I’d start it early in order to make sure that I don’t forget about it. Looks like the weather for the upcoming week is going to stay consistently good again. This is Buffalo? The place where they had the huge snowfall last year before this date? It’s entirely different this year. Very pleased with the weather we’ve had here since I’ve been out of the hospital. Nothing to complain about at all.

Doing the rest of the sleep study on Tuesday night. People in the Ward were kind enough to volunteer to give me the rides that I need there and back. Lynne is more or less night blind and Rte. 33 is a dangerous road with a speed limit that’s too high for the conditions. I’d drive except for the fact that I’m restricted. I don’t want to run “afoul” of either the doctors or enforcement.

Monday

A new work week. It’s a pleasant day and I’m feeling stronger again. I still have to make a point of eating enough to maintain or increase my weight. Eating heartily still isn’t coming naturally. I don’t like having to pay attention to things like eating. Eating should, naturally, take care of itself.

My blood values on the phlebotomy testing have slipped a little bit but they are still good. Nothing to worry about at this point. Let’s hope that it stays this way.

The dinner prepared by volunteers tonight is a pork tenderloin dish served with wine on some kind. People here are in to their wine! Hope they don’t have to drive.

Well, I suppose I ought to get over there to enjoy a good meal. Hope I’m hungry enough to eat! Too bad, wasn’t hungry but the food was great. There was an absolutely awesome squash soup with cayenne to spice it up. Delicious!

TUESDAY

That was last night. Tonight was every bit as good. We’ve had some wonderful dinners over in the main building. The company can be great!

We  were able to enlist some help with the rides. This way Lynne doesn’t have to make the trip. She doesn’t have to worry about driving and I don’t have to worry about her.

Saw some of the Buffalo waterfront today. There are three former Navy ships at anchor. There’s a submarine, a destroyer and a guided missile cruiser. It was pretty interesting but I wasn’t able to complete the entire tour because I am still weak. Saw about half of it and that was all I was capable of doing.

I’ve just run out of time. Need to start watching for my ride.

WEDNESDAY

Had my sleep study last night. Slept very profoundly. When I woke up I felt profoundly rested. Surprised that feeling didn’t last all day. Within a few hours I was back into my state of being semi-asleep all of the time where, if I sit down in a chair, I’m nearly asleep in a few minutes if I’m not concentrating on something at the time.

Fortunately, I was able to arrange rides both to and from the study. I wasn’t certain that I was going to be able to because I had misplaced the telephone numbers of those folks who were planning on giving me the rides. Thanks to some very patient members I was able to work that all out. Their help has been a great blessing to me. Everything worked out great.

When you’re sick or disabled, little things seem to grow in importance until they appear to be far more important than they would otherwise be. I hope I can get back to normal activity levels soon!

Had some good news and some bad news today. The good news first! I’m going to be visiting the hospital clinic much less than before. I’ll only be going in to see the doctors and the nurses three times each week. We started out at 6 to 7 visits per week. This will be such a relief.  According to them, I’m doing very well. I was glad to hear that.

Now for the bad news. I was in the clinic when my stomach began to ache. It kept getting worse and worse until it was almost overwhelmingly painful. This went on for almost an hour. I had no idea when it was going to end but it went on for about an hour. Don’t know what caused it. Every time I think that I’ve seen it all something else comes along and amazes me with how painful it can be.

Thursday

More good news today. Our 100 days after the transplant (the time we were told we have to remain in Buffalo) began on the day of the transplant not the day I was released. That shortens our stay by as much as 20 days potentially. We could be home well before Christmas. That would be wonderful! And, a little bit sad as well. For the most part, we’re really enjoying getting out of town this way. In some ways (with the exception of the disease), it’s almost like a vacation.

I’m not getting stronger very quickly. I’m disappointed with that. I was hoping for better results. Still, I’m doing okay. Hope it continues this way and they figure out where the graft vs. host disease is manifesting itself and how to keep it under control. Right now it appears to be in my stomach and digestive tract. We’ve also just been told they are going to try to keep us down to 2 visits per week. That will be wonderful! Maybe that will give me time to get some work done?

Got the results back from my sleep study. The pressure is supposed to be set at 14! It’s currently set at 8. No wonder it doesn’t work very well for me! Now I need to take the steps to get it changed. Not certain how to get that accomplished from here.

Friday

Life is an exhilarating experience but we become so used to it that we begin to see it as being mundane. Life is exactly as it was intended to be: A very difficult journey of discovery from start to finish with unending opposition and constant work right up to the end. It’s not something that we always appreciate.

We forget what a great blessing it is and what a wonderful experience. Crises such as my leukemia make that point abundantly clear. Every day in our life is such a blessing but also a challenge of almost equal dimensions. Life is a struggle from beginning to end. It was meant to be this way. Our resentments, our fears and our woundedness come from the fact that we forget this or never knew it to be true in the first place.

Our Father in Heaven is always waiting to help us. Unfortunately, that is an understanding had by remarkably few people. Satan has been extremely effective in obscuring this fact and other essential truths as well. And the world groans under the weight of darkness and sin because of the deceiver’s influence.

People are very worthwhile. Definitely worth the effort it takes to deal with them yet we often fail to see it because of their faults and ours. That’s tragic. We have to do better than that. The only way that I know hoe to do that is to develop an ever increasing humility. Humility permits us to see the good in the people around us and to recognize that we are not in-charge of our lives. There are a few things which we can control in this life and more which we are not. We have a great deal of difficulty in distinguishing which is which. That creates many of our problems.

WordPress can be such a problem is to use. Without even knowing it, I just added on several paragraphs to an older blog while I thought I was adding on to this one. Things like that shouldn’t be possible. Furthermore now I can’t find that blog anymore. It shouldn’t be this difficult to use.

Saturday

My blood chemistry is approaching normal. My platelets are are 66 which is the lowest number that I have. When it gets up towards 100 I’ll feel pretty comfortable with the numbers. The tests tell me I’m healthier but how I feel betrays the numbers. Feeling sick so much of the time is very discouraging. Hopefully it will start improving soon.

Sunday

Went to church today. Generally, I enjoyed it. Three hours is a long time when you’re not feeling well. And I’m not but I know that it could be a good deal worse. Well, that’s it for this week. Now the question is, was this a better way for me to present the blog or worse? It’s hard for me to tell.