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 PM Stem Cell Replacement Blog: Looking for easy answers in hard times.

Leukemia has been the greatest single trial in my life. It has also been the single most powerful spiritual experience I could possibly have had and it continually provokes me towards righteousness. I’ve seen myself rise to great heights as well as be distracted to pettiness because of it. What does it all mean? I truly don’t know except that it was foreordained for some important purpose either in my life or the lives of those around me.

I wish I could consistently be strong spiritually but I’m not. I still struggle with faith, and service, and forgiveness, and vision and a host of other things. I do know that My Father in Heaven is capable of bringing me back to Him if I choose to be obedient, faithful and repentant.

I caught the last session of General Conference today. I’ve been so distracted and preoccupied with leukemia I managed to lose track of the General Conference schedule. It’s so easy to let the spiritual things in your life be swallowed up by the current cares and concerns. Still, even for that one session, it was a delight to hear God’s word for us through his duly appointed representative.

My life has been remarkably good even as it has been so terribly difficult. When I concentrate of what’s important and have faith, I can handle it. I’ve seen more than a few miraculous things happen on my behalf. When I fail to do so, then I stumble. The pattern is the same over and over again. I keep forgetting that this isn’t playing out according to my plan but as a part of a far greater plan of which my life is a part and it will be adjusted according to my performance and willingness to receive it.

As far as the leukemia is concerned, I didn’t know that I was going to get that dread disease but I knew that some event of grave importance was going to occur in my life in the future and that it would have very important implications for me. Didn’t know what it was but I recognized it when I saw it. For that reason, I was able to exercise great faith at the beginning of this illness, more so than I have any time since then. I become more uncertain as time goes by because I have less idea of what to expect. Like everyone else in my position, I want everything to work out well and to what I see as my “advantage” without really knowing what is best from this point forward. It’s so important that we walk with faith and a willingness to assume that everything will work out for the best, whatever that is. That’s not always easy to do.

To a few people what I’v written about today will have deep meaning in their lives and for a few others it will amount to superstitious prattling of an anxious old man trying to preserve his life for a few more years. I went ahead with the stem cell transplant because it felt like the right thing to do. It was something that I had to go through, regardless of the outcome. I still don’t know the outcome. Even if I survive the leukemia, I’m still 69 years old. What does the future hold? I doubt that it can be terribly long. I want to spend my time doing those things that will be of greatest value as long as the opportunity is there to do so. What will that end up being? I hope I get to work productively again. And, I want to write. And make peace with my family (the most daunting task of all). That will require all of the strength that I’m permitted to have!

More tomorrow?

 

Transplant Blog: 11-12

The mystical: Beginning and end of life. Where does one begin and the other end? And we know this for certain how?

It’s not my intention to deal with such imponderables as these. I’d rather deal with the intersection of everyday life with them. In other words like now: I just found out that my best friend while growing up had died! Why is that important? It just is!

Although we lived all over the country at one time or another, when he died he lived within 50 miles of my home! What a pity! Death, the great equalizer!

While some people believe the guy with the most toys when you die, wins! I think most of us see beyond this too!

Life is so precious. To think we lived our whole lives (after 40 yrs. of age) without even speaking to one another!

Joe was 3 months younger than me. He had a good career as an architect. Before that, during Vietnam, he was a Marine who had the good fortune of sitting the war out in Hawaii. He had some interesting stories about Hawaii! He never married. Don’t know how close he ever got to it. From what I saw of it, probably not too close! But, we never took the time to find out. Sad!

The last couple of days were mixed reviews. I can see definite changes coming that will really impact my circumstances here! Although I’ve been disappointed twice, I sill suspect I’ll see an upward bump in the white blood cells in the next couple of days. Looking forward to it. Don’t want to be disappointed again! Close enough to the changes to be disappointed if they don’t come right away!

Keeping this blog undated on a daily basis is going to be difficult because of my constantly changing circumstances. It’ll be a quite a challenge but I’ll try to accomplish it! In terms of my health, I’m doing well. I’m looking forward to getting some control back over my life. Don’t know when or how that’ll happen. Birthday plus 12. I’ve been here for 19 days. There’s no change now that would be too soon!

Hasta la vista,
Tal vez,
Hasta Las Vegas,
O cualquier lugar asi!

Un mundo nuevo,
Hasta que la viera,
Otra vez,
Hasta nuevo,

Me entiendes?
Ojala que manana,
Me muestre algo de nuevo
Como pasar la tarde contigo!

Transplant + 2 Blog

Today’s the third day of my new life or Transplant + 2. It was a good day. I’m very tired but I’ve had a full and active day. Played with my Twitter accounts and did a little bit of work. Felt good about the day but wanted to spend more time reflecting on this blog. I find that I’m still trying to avoid it.

The first 5 days prior to transplant were as difficult as any in my life. Very traumatizing (as I expected them to be). Transplant day and beyond have been such a relief! In 10 to 12 days graft vs. host disease will probably start to kick in and this may be a totally different story. Right now, my biggest concern is simply staying alive with white blood counts approaching zero. It should only take a day or two for that to happen. After that, and maybe before, there will be platelet and whole blood transfusions. I’m also filled with anti-bacterials and anti-viral medication and various supplements and hydration. None of that’s too interesting.

Yesterday was my first blog Transplant +1. Got zero response which was disappointing because it will be hard to keep writing this without some outside motivation to push me. Too many demons. I’m alive. Don’t feel I deserve it. So much serendipity, and I know it!

I’m still not eating anything besides protein drinks and the diarrhea continues but with less intensity. Walked my mile again and went up and down my four step stepper 25 times. I admit I was tired.

But I want to go back to the beginning of my leukemia for awhile. It was the middle of September 2014. There were subtle changes in my health in the first two weeks of September. I hardly noticed them as I pursued my everyday passions. Besides, I had no idea that I might have been sick!

Ironically, in spite of minor injuries, I had just completed my “bucket list” of hills to climb on my bike about two weeks prior to diagnosis. Then the weather got bad (as it often does around here) for about a week. So, I didn’t ride my bike. The following week was better but I found myself hesitant to ride. Couldn’t explain it. Just didn’t feel up to the hard rides that I normally take in September, and, for which, my “bucket list” rides had me prepared.

Feeling a little bit tired all the time, I awoke one morning with traces of blood on one nostril, the corner of my lip and dried blood on one knuckle. There were just trace amounts and I tried to puzzle my way through this occurrence. I couldn’t. Didn’t happen again so I passed it off.

Began to find myself straining at mild physical exertion. Normally, I’m pretty active but I started to rationalize avoiding physical activity.

It had been a difficult bike riding season for me because of a number of minor injuries. It had taken me all summer to reach my minimum performance goals. My conditioning should have been better than what it was. I was ready to go ahead, but just couldn’t make myself do it. Felt like a slacker!

More tomorrow.

Dilemma: Write what and why?

Maybe I’m just like most people? I’m conflicted and inconsistent in what I’m trying to accomplish. On the one hand, I want to express myself, be who I am and benefit those who read what I write. On the other, I’d like to have a substantial readership, too. Those goals may be mutually exclusive. That’s my dilemma.

As I implied, there’s a part of me that doesn’t want to cater to the whims of the public. I’d rather find people who are interested in, and might benefit from, what I have to say (assuming there is a benefit and there are such people).

Considering the number of people on Twitter, theoretically, that shouldn’t be a problem. For that reason there should be more than enough people who are interested in what I have to say. Having said that, how do I reach them?

Continue reading

TO TWEET OR TO BLOG: That is the question!

I’m relatively new to twitter and I’ve been blogging for just a short while. I think that I figured out a way to decide whether I should blog or tweet on a subject.

This is why it’s an issue. Often, l find myself sending out repeated tweets, one after another, as part of a conversation that interests me (perhaps to the dismay of the other people who might be involved). On the other hand, most of my blogging attempts feel over-developed and lacking in spontaneity. Continue reading