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 PM Stem Cell Replacement Blog: It’s all a mystery to me! What’s next?

That’s literally the truth, what’s next? I’m completely confused by what’s going on. Have no idea of what to expect next. Obviously, there has to be an order as to how the graft versus host disease manifests itself, how and why but I’m not knowledgeable about it.

It’s becoming obvious to me that the graft disease is going to manifest itself, at least in part, through skin problems. There have already been times when I’ve looked like a boiled lobster over most of my body. Itching, scratching and skin discolorations have all been characterized, so far, as “minor manifestations” of graft versus host problems. No doubt I’m going to have to learn to be very careful in order to avoid the morre dangerous problems. There’s so much to learn and, frankly, all I want to do most of the time is to sleep.

I’m just beginning to realize how dangerous and how uncomfortable going through this process can be. It can also be very uncomfortable. Some of what happens is hard to describe but it’s definitely not comfortable.

I’ve been falling asleep spontaneously all day. No idea of what’s going on there unless by body is trying to make up for not having slept on Thursday night.

For the first time since I was released from the hospital about 10 days ago, we have been given 2 days off from having to go to the hospital. Normally, we’re there every day for from two to five hours. The hospital is daily checking blood and doing other testing. Time off is a relief. It’s like having a vacation.

I can say this. We’ve been treated very well

10 pm Stem Cell Transplant Blog: On the outside, the blog and the healing continue in a really nice apartment .

Made it out! Had another casualty. My wireless keyboard quit. Gonna have to get another one. To go along with the second monitor. And the wireless trackball.  First, I’ll have to spend enough time on the outside to know how to go somewhere and get back home again. Spent on hour looking for a drug store today so that I could replace the batteries in the keyboard. Not the problem nor do I have any idea what is.  Depending on what the problem is or isn’t. It’s frustrating have to spend money on this stuff at a time like this.

This place where we’re living is so unbelievably nice. It’s a Victorian beauty updated so very carefully. So much better a place to be than the hospital. From hospital to heavenly atmosphere! This place is called the Kevin Guest House. It’s the very first hospitality “guest house” for hospitals in the United States. Today, it’s a series of several buildings where relatives can visit hospitalized family members for the short or the long term, depending on their situation. Payment is according to ability. We’re staying is a special stem cell transplant section consisting of 4 apartments. Most of us will be here for 3 to 4 months waiting our release back into the world! They’re performing a great service and we are certainly very grateful  for their efforts.

Beginning to eat again, finally. Feeling better. Looking forward to better days to come!

More tomorrow!

10 PM Stem Cell Replacement Transplant Blog. Watching every blast being replaced by new stem cells! Beginnings of a new life!

Huge numbers of WBC  (now 7.09) were created last night. My WBC is now above normal. My ANC jumped to 6.17, which i believe is also high. Didn’t even know those know those kinds of advances were possible for a single day! Now if only my appetite and desire to work out would come back. Now I can believe that I’ll be going soon! Doctor’s are talking about Monday.

Had trouble sleeping again last night but I don’t know why? This brain activity falls somewhere between mild hallucination and nightmares. meanwhile these days grind on but very slowly.

Funny, though, whenever I have a good day, I assume that it will continue. But it doesn’t. Only the painful days seem to do that. They endure and have a life of their own. It’s not such much that I’m in a state of pain but in a constant state of confusion not quite being able to orient myself to what is happening around me. I don’t know why this is going on at all or how long I should expect it to continue.

I’m watching that beautiful weather continue on the outside. Hope it lasts long enough for me to get out there and enjoy it!

I do enjoy getting to take showers without having to be tethered to a pole. It’s one of those little perks in life that you never knew was important until that day came where you weren’t permitted  to do it anymore. Cooking with fresh ingredients are another simple pleasures you didn’t think were important to you.

Looking for strength and not finding it! My vitality, in terms of blood chemistry, has largely returned. My physical strength has not. There seems to be some sort of a trick to it. I know that to some extent I need to “force” it. And, by that, it means to push myself physically. That used to come naturally. Doesn’t appear to happen that way anymore.

These days are wearing on me. I’ll be glad when they’re over. I hope that it is soon.

Hopefully, more tomorrow!

 

10 pm Stem Cell Transplant Blog: +Day 21, Replacing your Leukemia With Stem Cells 1 cell at a time!

Hallelujah! My white cells are back (of their own free will and choice!). The circle is closed. The process appears to be complete! While this is all true (and good), it’s only on the most fundamental level.

I have cells but we have yet to determine who they originally belonged to. Were they mine? Did they somehow survive the bone marrow apocalypse? Did they belong to my 26 year old donor? (by the way, thank you!). Right now they are still so fragile that they could be wiped out in a single bad day! But today is a day for rejoicing.  Some of them survived and are repopulating my bone marrow! It’s a day for hope, for calm, for restoration!

I apologize for my periodic absence. My strength is very minimal. At times I can sit at this computer for 8 or 9 hours and produce 1 or 2 short paragraphs of very poorly written material. Today I’ve been stronger but I’m still weak compared to almost everyone else. In spite of all this, I was able to complete a reasonable amount of work today. For the moment, at least, my business accounts are in reasonable shape and the responses that I’m getting are adequate for the current situation. On the other hand, I’ve been forced to neglect my personal and political accounts have suffered the worst. I take them very seriously. I had to make a choice and those were the results. I would that it could have been different!

I have a strong need to research the science of social media and social medial marketing. I think much of the glitzy (and impressive) productions you see out there miss the mark. Or, it could be, that I’m so far out of touch that my personal preferences don’t even come close to mirroring reality! Sometimes you just don’t know but my gut feeling keeps telling me otherwise.

Man! Do I get sidetracked easily. Back to the leukemia! I’m very thankful to be alive. Although I’m not a positive person by nature, I never really thought that it was going to kill me. This was at the same time I was receiving all kinds of horrible news about it! Strange, isn’t it?

And, as it turned out tonight, I waited too late to work on this and my body and mind just crashed. I know I promised to write some more on dreams. I did. I promptly misplaced the file. I’ll keep looking for it tomorrow or I’ll try to rewrite both pieces. I hope what I’ve written is sufficient for one night.

More Tomorrow!

 

10 pm Stem Cell Transplant Blog: +Day 19, Replacing your Leukemia With Stem Cells 1 cell at a time!

This is not a political blog nor was it ever intended to be. But I am going to make a short one here as a result of what I heard just before I began to write tonight.

I don’t ever want to hear anyone of us objecting to taking refugees from the middle east. Why? Because no matter who we were bombing or blowing up or for what reason, we created many of them (probably most of them). My experience tells me that most refugees are apolitical and are just trying to get by!

I’m tired of seeing the victims victimized and blamed for their own victimization as has so often been the case. If we can afford the cost of dispossessing them of all they have, then we should be able to help them afford to put a roof over their heads and food in their stomach.

It was a miserable day today for me. Fought with my doctor over what I said and he said. No future in that!

It’s interesting. My leukemia was diagnosed almost a year to the day from today. This is my leukemia birthday! My life expectancy at that time was 2 to 8 months. Fortunately, for me, that fact was misrepresented to me (probably in error) and I was told that, Leukemia All is one of the simplest childhood leukemias to manage. It is in children. In adults, it’s just the opposite. You’re fortunate to survive it even for a few months.

The treatment for it, with multiple chemotherapies, is very unpleasant. And, because it can kill you so quickly, the pace at which you have to get treatments never slackens. The drumbeat of the pain is incessant and you find yourself struggling to keep up with them or even justifying the reason that you want to keep on doing them!

For reasons that I don’t entirely understand, I’ve always (or almost always) thought that I was going to survive this leukemia.

However, there was that day when I was told that my bone marrow biopsy showed that 70% of all my bone marrow was producing leukemia blasts and that the cancer had crossed the blood barrier into the brain. Both of those statements got my attention!

More tomorrow!

Friday

Life is an exhilarating experience but we become so used to it that it appears to be 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.

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 wounded-ness 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 so worthwhile yet we often fail to see it because of their faults or ours. That is very tragic. We have to do better than that. The only way to do that is to develop an ever increasing humility which means a recognition that we are not in-charge of our lives. There are things which we are in-charge of in this life and others which we are not. We have a great deal of difficulty in distinguishing which is which. That creates many of our problems.

The Pain

THE PAIN

Pain,
Returns again,
Distills my thoughts,
Gives sight to my grief,
And purpose to my guilt
Requires me to exercise faith,
I’ll find relief again.

Pain overwhelms my senses,
Tracing the outlines of my consciousness
With a dull rusted blade,
Touching the conscience of my soul,

It’s a vision
Reminding me of who I am,
And what I’m meant to be!
Both vision and distraction follow me!