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What in the hell is going to happen next!?




I've had better Septembers

September can be summarized in one sentence: Everything the doctors did made things worse.

In our last installment I was being put on a rituxan course of treatment. The deal on that is that rituxan is another miracle drug, mostly used for chemotherapy symptoms but also used for hapless victims of ITP. You get four treatments spaced out a week apart. In each treatment they do an IV drip that takes several hours as they feed a big bag of miracle drug into your veins.

The first time went well enough. I read and slept while the miracle drug infused itself into my system. Unfortunately it didn't seem to do anything for my low platelet count. Doctor says, it may take some time to take effect.

Okay, that's the way things work, sometimes. Treatment two did not go so well. The treatment itself was okay but the aftermath wasn't. All of a sudden I was exhausted all of the time and I had a lot of shortness of breath. What is worse, my platelet count went down instead of up. Boo! Hiss!

Conference with doctor. We agreed to cancel rituxan treatment. He started me on tapering off prednisone. (Miracle drug #1 that didn't work.) Miracle drug #3 coming up. This was something called Rho(D) immuno globulin. What is does is convince the spleen not to destroy stuff. It is mostly used with RH negative mothers who might have an RH positive baby to convince her body not to make nasty anti-bodies.

I had high hopes for this one. After all, if we could convince my spleen not to eat my platelets my platelet problem should be solved. I think you can how that worked out for me. Or, maybe not. I had been wandering about in "going from bad to worse country".

Deborah and I drove down to Sioux Falls (a mere 190 miles) to a hospital where I was going to have WinRho (brand name) infused into me. The stuff (technical term alert) was in a tube that was maybe 5 inches long and 1.5 inches thick. It turns out that you can't just stuff that much stuff into your veins in one swell foop. They have to do it by pushes. The WinRho pusher pushed some stuff into my veins and then waited a bit for my system to absorb it. Then she did it again - and again and again until I was full of it, er, I had absorbed all of the stuff.

I sat there fat, dumb, and happy, cracking jokes, and generally being the life of the party. The chief stuffer allotted me half an hour to see if there were any side effects. There was nary a one ... then. The chief stuffer pushed me out the door (I guess she didn't like my jokes - fancy that) and we took the elevator to the ground floor to get the car. On my way down I felt a chill and started shivering a bit. Deb told me to wait while she negotiated with the valet parking people to get the car there now!

Getting outside and getting into the car was a proposition. By now I was shaking badly. I thought I would be okay once I got in the car and got warmed up. Not so. As Deb pulled out I kept shaking more and my chest started hurting. I mentioned these little facts to Deb and she quickly made an executive decision - she drove around the block and pulled into the emergency room entrance. She jumped out of the car; she may have been a little rattled as evidenced by the fact that she couldn't find the door. Fortunately the people inside figured out that things were not quite right. By the time Deb found the door the people inside were streaming out with a wheelchair and oxygen.

Thus it was that I got my first ride in a wheelchair. Unfortunately I was a little distracted and didn't quite appreciate that I was in the midst of a momentous occasion. Almost immediately I was on a gurney, wrapped in warm blankets, hooked up to an IV, and breathing oxygen. (Another first.)

Did I mention that I had had chest pains? You may be sure that the ER people seized upon that fact and shuffled me off to the cardiac ward for observation. I don't blame them, I suppose, because it could have been a heart attack. It wasn't, of course. It was the pain you get when you push yourself really hard and it starts to hurt to breathe. Thus began one of the more exotic nights of my life.

Every few hours they wanted to take another blood sample. They wanted three of them to check whether I had had a heart attack. They wanted one for an INR. They wanted one initially to check whether I was human or not. They wanted one to check how my platelets and red blood cells were doing. Apparently the WinRho had worked - the platelet count had bounced up from the 20's to 48.

There was a little problem with all of this blood sampling. My right arm couldn't be used because there might still be some cellulitis hiding in my skin. The veins in the left arm are shy. By the end of the evening they were running out of places to stick their furshlugginer needles.

The situation was that I was in rough shape when I came in - my pulse rate was bouncing all over the place. As the night wore on I began to recover and by morning I was back to normal - with a few caveats. I informed the nurse that one way or another I was leaving that morning. She allowed as how that was my right, but that I might as well wait for the doctor, the hematologist.

He had shown up in the evening and had explained that I was in the cardiac ward because I had a heart problem and had probably had had a heart attack. Deb suggested that I had had an anaphylactic shock. The doctor poohpoohed that, saying that if I had had one I would be dead by now. Oddly enough, the Mayo hematologists agreed with Deb. Fancy that. I don't suppose we will ever know.

In the morning he retreated from the heart attack hypothesis (there being no traces of one in the blood) and suggested that it was a fluid on fluid reaction, whatever that might be. However he did sign me out, which was his good deed for the month. It was just as well - the natives were getting pretty restless.

My shining moment came when a lab tech came to draw blood for an INR. This was silly. Firstly, I take my warfarin in the evening. Secondly, I wasn't going to be there in the coming evening. Thirdly, if by chance I were there, they could take their silly blood test later in the day. I flatly told her to go away. She was a bit flustered by this but she went away. The nurse came in and expostulated. It was, it seems, a matter of policy. It didn't matter that the policy made no sense and that they had made a mess of my left arm. I allowed as how an exception was going to be made for common sense.

She didn't argue with me, mostly because she had an end-run available. They had yet another blood test scheduled, this one to check on what my platelet count might be. This I wanted to know. The lab tech who did this one took enough blood to do the INR and the platelet count. You may be sure that I pointed out that they could have scheduled this to begin with. Apparently, though, common sense is not hospital policy.

The platelet count was back in the 20's. Sigh. More ominously my hemoglobin level dropped down to 9 eventually to 8.0. I ended up needing a blood transfusion to get more red blood cells. Double sigh. Somewhat later I learned that one of the side effects of WinRho is that it knocks your hemoglobin level down. Triple sigh.

Well, that was my September. How did yours go?

What about October?

After the September fiascos Deb laid the law down. We are going to Mayo, she said, and we are going to stay there until we get all these medical issues straightened out. And so we did.

We spent two weeks at Mayo, with the intervening weekend being spent at Nick and Stephanie's place. (Nick is Deb's son and Stephanie is his fiance.) Briefly, I saw a cardiologist, two hematologists, a dermatologist, and an endrocrinologist. The upshot of all of this was:

  1. According to the Mayo hematologists I do not, repeat, do not have ITP. Instead I have a rare - possibly unique - bone marrow stem cell disorder. The actual diagnosis is myeloprolifterative disorder wih myelodysplastic features. Technically this is a blood cancer. My system can stay much as it is, or can eventually develop into leukemia. According to the specialists there are no drugs that can put me back to normal, but there are drugs that can treat the associated anemia.

    It turns out that the series of treatments for ITP were exactly the wrong thing to do. All I really got out of the prednisone was a lot of side effects. The worst of these were opportunist skin diseases. The worst treatment was the WinRho which put me in the emergency room. The long time effect was to knock my hemoglobin level down from 12 to 8 (it should be at least 14). A blood transfusion brought it back up to 10.

    I am starting a regimen of Danazol which, among other things, stimulates the production of red blood cells. Wish me luck.

  2. The cardiologist says that my heart is not a problem - at least not any more than it was before. He insisted that I get off warfarin, the argument being that the danger of brain bleeding was much greater than the danger of stroke.

  3. I had been having trouble with cramping in my hands. The local doctors pretty much blew me off when I mentioned it. However Deb insisted on bringing up all of my issues and the Mayo doctors listened. They sent me to an endocrinologist who determined that (a) my cramping was symptomatic of calcium deficiency, and (b) my calcium levels were at the low end of normal. He explained that it can be hard to get enough calcium when one is on a proton blocker (omeprozol) because one is not making much stomach acid. The right thing to do is get your calcium in a soluble form, i.e., in dairy products, i.e., drink a couple of glasses of milk a day. This I am doing, and the hand cramping has gone away.

  4. One of the side benefits of prednisone is a nasty fungal infection on my right leg that started spreading. There also a different fungal infection on the back of my neck. The dermatologist prescribed a regime of treatments which include putting a vinegar and water soaked wash cloth on the back of my neck for half an hour. Much of the fungal infections are being wiped out by the treatments; however the worst ones are responding quite slowly. We shall see.

  5. I am still having problems with shortness of breath and fatigue, but I like to think that I am picking up a bit. I am starting the danazol today (Oct 28) so we shall see what that does for me.
All things considered, October was a pretty good month. Here's hoping you had an even better one.

Don't even ask about November

Actually November hasn't been too bad. That's my story and I'm sticking to it.

It may be legal but it still is murder

I am strongly opposed to the death penalty. One reason, one that I hope that most people can understand, is that from time to time innocent people are executed. Supposedly our standard of justice is that it is better that a hundred guilty people go free than one innocent person be convicted. In practice things are somewhat different.

The truth is that the justice system runs roughshod over the ill-defended. There are ethical police and prosecutors who hold true to the oaths they have sworn. Yes, there are, but there are many who aren't. And if you are poor, or a minority member, or mentally challenged, it is easy to be overwhelmed by the system, particularly when the police know who they want to be guilty, and the prosecutors want convictions.

People on death row are mostly poor, black, or mentally challenged or some combination thereof. Most were poorly defended. Many were coerced into confessions. Quite often the major evidence against them consisted of eye-witness identifications by people who had never seen them before.

It is hard to tell how many innocent people are on death row and how many have already been executed. Since 1976 over 1000 people were executed. In the same time 138 people on death row have been released for having been wrongfully convicted. How many were wrongfully executed is problematic. The legal system takes the view that once you are convicted you are guilty until proven innocent. Once someone is executed, it is virtually impossible to exonerate them.

You might think that the standard for actually executing someone is virtual certainty. It is not. The innocent must establish their innocence; reasonable doubt is not enough. Boards of pardons and governors regularly take the view that if suffices that all of t's have been crossed and the i's dotted. Justice is neither needed nor wanted.

That said there are lists of the innocents slain by the judicial system. If you are curious you might visit the Death penalty information center.


Even if the death penalty were fairly applied and even if it were administered so that there is no chance innocent people are executed I would still be against it. To put it baldly, the death penalty is more immoral than simple murder.

If it is wrong for me to deliberately and with malice aforethought take the life of another human being, then it is wrong for all. The actions of governments are often couched in euphemisms. Very simply, when a person is executed there is another person who kills him; someone does the deed. That person is the killer, a killer who will never be tried for deliberately taking the life of another person.

Those who see nothing wrong with this might say, "It's not murder because these killings have been authorized by the state in accordance with the justice system, and state licensed killers have a right to their kills." But what is this "authorized by the state"? The speakers for the state claim to speak on behalf of "the people of ...". These killings, these (dare I say it) murders are sanctioned by us. We citizens of the USA bear the onus of what our country does. I never authorized anyone to invade Iraq; none-the-less it was what my country, acting in my name, did. So it is with these judicial murders; Willy nilly, I am stained with their taint whether I agree with them or not.

So much for rants

The truth is that rants are a waste of their author's time. Not in may case, of course. When I write essays of opinion I am illuminating and elucidating. Other people, however, are merely let their natural supply of indignation overflow. Thought is not needed for this; all that is wanted is a ready supply of slogans and talking points, along with the firm conviction that the ranter is on the side of the angels.

I will take it kindly if my readers would not mention the above paragraph when I next illuminate and elucidate.

The consequences of Christmas Tree Lights

Seen on slashdot:
"North Korea warned South Korea on Sunday of 'unexpected consequences' if Seoul displays Christmas lights near the tense border, and vowed to retaliate for what it called 'psychological warfare.' From the article: 'The tree-shaped, 30 metre-high steel structure on Aegibong hill - some 3km (2 miles) from the border - was illuminated by thousands of small light bulbs last year. It could be seen from the North's major city of Kaesong across the border, according to media reports. Pyongyang has previously accused Seoul of using the tree to spread the Christian message to people inside the secular state.'"
Does Fox News know about this?

This page was last updated December 11, 2011.

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