Outlandish Lists

My outlandish feelings about everything persist. I just do not feel a difference whether I carry a valine or phenylalanine group at position 617 on the JAK2 gene on my chromosome 9. So, it is hard to understand that this at the heart of the problem.

I have to get used to the difference of treatment and cure. In my old world, both terms were synonymous, in the new one, there is no cure. Just for the records, here is the list of my current treatments.
The most enjoyable part, I am allowed to use opiate pain relievers. The pain comes from the necrosis that developed on my toe. This keeps me from walking more than 2 kms, swimming, and biking. Timewise, activities that made a highly two digit percentage of my previous life.
And I get weekly phlebotomy. AFAIK, this is one of the oldest treatments of humankind. Participating in this heritage, from ancient pharaohs, I sit together with chemo guys waiting. They make jokes that I am more pale but not as bald as they are. I did not know, but it only takes half an hour until you have lost 7% of your blood. This calculation is based on the 0.5 litres of blood I see slowly pouring into the beaker and the 7 liter blood content of an average human body. Beware with extrapolation, it can be expected that the rate of blood outflow decreases significantly after the first two liters.
On a daily basis, I also get infusions. Infusions to make my blood thinner, to make my veins grow, to do whatever the M.D.s think might help.
The only medicine I have to take on my own and on a daily basis is 100mg acetylsalicylic acid.
Because my blood content and behavior is now artificially regulated, corresponding data is collected on a weekly basis. As part of a "deformación profesional" (I am natural scientist), I like the resulting data plots over time. Up to know, I got only unsatisfactory statements from the M.D.s about the error bars for those values.

To finish with lists, here the list of symptoms. A very good friend's recommendation was to make up lists, but more of the kind of things "I ever wanted to do":
At times, my vision blurs, especially in the focal area of my retina. An effect of the bad circulation there. And the hyperactive spleen (it takes over some functions of the bone marrow) somehow hurts. At least, you feel it. Ultrasound says that it is not growing yet. I also feel my spine. Here, the explanation is the expansion process of the bone marrow.

Lucky you and me, dear reader, we are done with those list. Others and updates on these might follow.

If this did sound too desperate, I end with something really positive (and fun). Here is the02/2008 TED talk of brain scientist Jill Bolte Taylor. She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one. Parallel processing of left and right brain hemispheres seems to lead to a sort of enlightenment. So, there are very valuable spiritual consequences of one of the possible risks of my physical state*. At this point, thanks for the commenting links about Buddhist / Tibetan medicine and other's recommendations for a holistic perspective on this. Following these paths already before, any sign pointing in these directions are very much appreciated!


*I still have to keep myself from adding a "current" to my physical state. As such, it will persist at best, or transit into something that is again very different from what has been "current" before.

Sooner or later, the survival rate of everyone drops to zero...

Sooner or later, you then start the first blog; which is what I do.
Maybe, the reason is somewhere behind the last events in my life. As background, I am in the beginning of my 40s, usually had daily 3+ km swims and 50+ kms bike rides in the morning. It seemed like the common causes of the diseases of the Western culture are light-years away.
Just five weeks ago, my toe began to develop an inflammatory wound. Over that weekend, it got from bad to worse, and I ended up in the emergency ambulance. The meds took care of the toe but noticed a bad circulation in the corresponding foot. A week passed until I found an angiologist, a M.D. for blood vessels. He diagnosed a vascular obliteration. An additional blood test showed that I had way too high platelet count (the blood cells who keep a wound from bleeding forever). The next step was a bone marrow aspiration. Not funny. They more or less turn a screw into your hip bone, turn it some times, and, finally, force it up and down, slightly. Then the extracted hard and software is analyzed. At this point, in around 1.2 people in 1000.000 you can see quite strange things going on. Compared to healthy human beings, the blood cell precursors just run crazy. They are just too much. genetics has it that in my case, it is a developed (in contrast to inherited) mutation of a gene, i.e. the famous JAK2 mutation.
Lo and behold, since Wednesday last week, I know that I do have polycythemia vera.

This means that my live expectancy has not only significantly dropped, and that chances are good that I will suffer from a stroke or another vascular obliteration...In the lucky case it will take around 10 years until all will slowly pass into the highly malignant state of the classical(?) leukemia.

It seems like a felt state of publicity helps. Well, I do not know. How could I?
In only five weeks, a former person died, another one was born, but as an old man. I tend to be a Buddhist, but this was not how I thought about the whole business.

More to follow, sooner or later...