As enclosed sphere, the brain allows redirection of thoughts.

Something that keeps me thinking at the moment is this one:




Web-psycho-socio-technological it is a clone of TED. But it concentrates on the binding forces of religion & humankind. Usually, I see myself as having little missionary attitude. This time, I admit, I feel the need to share this over http.
Thanks for paying attention.

Crisis, what crisis?

There are two reasons why it took some time for this new entry.
The first one is that the last blog's title remained longer true than expected. Just after having started, and back from holidays, I broke my metatarsal. Which just sounds more sophisticated than "I broke my foot". Most likely, the pain is ignorant to sophistication. Am I starting to get old because such events make me wonder whether this happens because I get old? I had a cross country run with corresponding (new) shoes. And after a while off road and in the woods, back on a straight and easy road, I stumbled at the border from concrete to soil. At least, there are some stars who are by nature prone to this injury: football players like Mr Beckham.
The other reason for this sign of absenteeism from blogging turned into the title of this entry. At the moment, the percolation of the diagnosis throughout myself more or less ended; or there is no notable change in its meaning during every day, and other, life. A lot has changed in short time. Major mental adjustments. But then, there are again days where I might not have spend a single thought on the bone marrow and its production rate.

Holiday also meant Budapest. Which is famous for a long tradition in public pools / baths / spa. For the first time since the 18th of Jan. this year I was swimming in luxurious decorated facility with 50m outdoor pool, sauna, several hot in- and outdoor pools, with built-in chess boards on the side. I had a 5k swim, which was OK. But...since then...no second try.

Out of office

Retro medicine

My reduced posting frequency does not reflect a similar trend in the presence of the illness in my stream of thoughts. It is just that this presence gets more and more interwoven with the fabric of my thoughts. Nevertheless, I still feel more rapid changes of perspective than during usual times, a constant historical overdose. Which might become a new "usual".

As an example, the advice by health officials, to wash hands more frequently as prevention against a pandemic outbreak of one of the H-something-N-somthings gets instantly related to my illnesss. Here, it is one of the treatments of my illness, e.g. phlebotomy.
To me, both hand-washing and phlebotomy to manage serious illnesses sound very antique (In reality, phlebotomy is much older than hand-washing.) Compared along the historical timeline, I am lucky to get phlebotomy in a clean environment by trained staff, and with washed hands. From own experience and in comparison, phlebotomy gives me the better kick. The other week, I "received" the 2nd one ever. In contrast to normal people, this gave me 3-4 days of increased physical power and endurance. What spinach intake is for Popeye is blood outflow for me.
I still observe all recommendations from my Traditional Chinese Medicine (TCM) doctor (unfortunately, his business model is not traditional, i.e. successful prevention is not his only source of revenue). It does not hurt, but eating warm three times a day is no fun either, especially during summer. On the kick scale, his acupuncture is close to hand-washing.
On the retro scale of medicine, my treatments are real high scorers. In order to thrive under these circumstances, I added hand-washing. Maybe, I will grow this hand-washing into regular swims I had previously.

Experiments & Science

More than a week ago I saw one of THE experts for MPDs like mine. This might sound strange, but it was a lot of fun. In the way of thinking, he and I share a similar approach on medicine as a science. E.g. in case of MPDs, you have to monitor a lot of blood parameters, like hematocrit. I always wondered how comparable the numbers are, e.g. from one lab to the next or from just one sample to the next (which role has transportation time?). He was the first who confessed that he does not know (exactly), but who had studied those influencing factors systematically (like transportation time, temperature...).
The differences are huge!
Currently, he does research on how blood coagulates at a surface (I am surprised that this is not studied yet. But then, according to him, we do not even have a clue about possible chronobiological cycles of e.g. platelet count or hematocrit).
You might guess, I spend half of the entire time (2 hs) with his post-docs in the lab.

Back to my innermost reality, he runs some additional checks to verify polycythemia vera (PV) as my MPD-subtype. The bad thing, I do not have the results yet and the only other possibility is much worse than PV.

From my upbringing in a boarding school, I know how to obey the law. This is what I still do on the Chinese challenge. Of course, with experiments, it is at least double the fun (find the best container to bring warm breakfast to work).

Got milk?

Almost a month went by where I did not take the chance to apologize for the last post. Sorry, but for bookkeeping reasons, I do not want to delete a post.
The BASE jumping is work in progress. Its fascination in general should not be part of the blog. Nevertheless, it stands for parts of my life that seem to slip away. In those parts, "You can not do this, nobody..." (e.g. swims beyond 4 hs for no other purpose) was a big motivator. Now, having this "best before date" imprinted on my bone marrow, the longing to push the (physical) limits dropped to zero.
All of this is OK, I am just watching and reporting.

The other day, I saw an MD with strong background in Traditional Chinese Medicine. The natural scientist in me is always open for well designed experiments. But it is also an intrusion in my every day life. On my prescription it says "three warm meals, no cow milk / products". To someone who rarely eats warm and drinks 3 liters of milk/day, there are some changes ahead! I thought of founding an lactate anonymous: "Hi, I am John and I am the 3rd day without milk. They say, on the 4th, it becomes very hard and you start to moo. I know, this can not be cured, and beware, cow milk products are ubiquitous!"
If my Chi needs more warmth to flow more freely, and takes the blood with it - I do not want to stand in the way. After all, who am I? Currently, I am in "just follow the rules"-mode and try to not combine terms like energy or warmth with natural scientific reasoning.

BASE

The title is an acronym and stands for building, antenna, span, and earth. Contemplating on how to fill a list of things that one must do before whatever happens to prohibit doing, I found out that people can jump from building, antenna, span, and earth structures. Currently, I am wondering how time and cost intensive are parachute gliding lessons? It seems if you want to do this more than once, you have to know the basics. Actually, these "basics" are more than 2000 conventional parachute drops.

Chances, Options, and the Presence

I cam across an old TED talk by Harvard psychologist Dan Gilbert. From what I know about my future (close to nothing) I can only agree with him, "our beliefs about what will make us happy are often wrong". In my particular case, I am somewhat worried about dying from a consequence of the gene defect, more from the uncertainties of how and when. But it seems not unlikely that my week-daily bike rides bring about a much higher risk of death, including painful death, including life long severe disabilities than the defect. In this sense, I found Gilbert's slide impressive where he contrasts the images of an crashed airplane, a 9/11 skyscraper, a house destroyed by an earthquake - and a swimming pool. Statistics has it, the swimming pool is far more dangerous than any of the other. Actually, he could have included fire weapons, the hallmark of ever discussed US American freedom of citizens. According to "Freakonomics", you should be really worried if your child meets a friend whose parent have a swimming pool compared to the parents owning a fire weapon: "children are 100 times more likely to drown in a backyard pool than they are likely to die while playing with a gun."

The only problem, we are irrational beings. And as one contributor in the discussion with Gilbert mentions, the master equation in the theory of decisions (the expectation value as product of likelihood and gain) does tell us as much about the perceived (v.s. abstract) reality as the fundamental equations of quantum particles, symmetry laws, and the like: Nothing.
It hurts when you hit the floor and it does not help that Pauli's principle is responsible* for the "hardness" of the floor and your body - as you both are more than 99% nothing, space-wise.
*it is only an explanation, but this is how I mistreat principles, sometimes.
My expectation value is my_likelihood multiplied by my_gain. If you ask patients of, what we call bad and grave illnesses, their_gain might not be as negative as our_gain anticipated. Which might correspond with the fact that their_likelihood is at 100%.

Currently, I find it hard to readjust to a "realistic" perspectives on the future. Half an hour ago I had this disturbed vision that comes from a bad circulation in the retina. The awareness of bike-risk is not a day-to-day companion as the "other". And there is more routine and practice to avoid the bike-risk. The other is hard to avoid as reasons, causes, and interdependencies of PV are not (yet) researched. So, there is always room for speculation to fall in.

If You Meet The Buddha On The Road, Kill Him!

Of course I neither met, nor did I even try to kill him. Mr. Gautama is dead. Since more than 2.5 thousand years. But since the last post, I also did not kill the ZEN master whom I did meet in the meantime. Quoting numerous scientific, medical, and statistical studies, he made a big point about the healthy effects of transcendence, love, and compassion.
Yes, our second nature is the social network of other human beings. No, I see no need to have these on the same level like daily exercise or healthy eating, i.e. as measure of medical prevention. But no doubt, I currently experience a state of medical extraordinary that makes me think about quintessences of life, such as transcendence, love, and compassion. Even to the point where I start to question most of my previous goals. Just recently, I saw a documentary on quite intelligent people who at some point in their life stopped working altogether. There was a medical doctor who decided that it is not the meaning of life to work each day to empty the waiting room of all ill people, to go home tired and in expectation of the next day's daily grind. I started a new job not half a year ago, I study for another academic degree, I still do a lot of things where I am not that sure whether, and how much, these are really necessary.
"If things are not necessary to do, it is necessary to not do them".
There are other things, where I do not even think about whether these are necessary. Like art (I had the chance to see the original above one year ago in Madrid. It is a lot of fun to see, and you have to be quite careful with your ankles if you try to re-enact the posture of the women to the right :D). These are just outside this category. Maybe this is the way to go. Maybe I need some life re-engineering or retrofitting - buzzwords of my professional career.

BTW, the image to the right shows the above mentioned ZEN master (to the left) with one of the first of this kind from the Western culture, an ordained Jesuit priest. I see no reason to kill one of them; of both, one can learn a lot.

Reality Check & Continued Lists

Time is passing, as if nothing has happened. Spring arrives and without the knowledge about the disease, everything would be ... just like last year. Actually, this is the only measurable difference. Most likely, I have had the genetic defect for more than three years.
No surprise, the difference is all in my mind. No big revelation, in the end, what is not only in my mind?
Slowly, I try to catch up with the previous everyday life. Today, I even managed to bike to work, pretending that the pain in my toe is ... just in my mind.
Those close to me redirected my attention to the big pros of this disease. As a short list, I will not die after a long unconscious state of e.g. Alzheimer's disease, I will not die for sheer boredom or loneliness. Actually, there is a bunch of really bad things and suffering, I will most likely not experience.
Today, I also got an update on the blood values that are now artificially monitored. Those values that make my blood highly viscous, causing things like the thrombosis are approaching normal values. Which matches the experience that every time I am bleeding, it takes 10 times longer as before until this stops.

A few weeks from now and most likely, I will be able to live my everyday life as before. Hence, the real problem is, has and will be, my mind. Tonight, I will have the chance to see one of the few ZEN masters here where I live (You guess correct, I am not living in Japan :D). Most likely, this will not inspire me to continue any of these list. I guess, I have to expect the unexpected or even trivial, i.e. the one moment in time. It is very hard to be prepared for this, as it seems too easy.

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...