527 days to go and all in my head?

Naturally my mind races all over the map given my recent news. While I don’t quite go into denial I do switch back and forth from more pessimistic to more optimistic on the basic question of longevity, or, IOW, which of the IPSS stages I’m in (my days to go is based on assumption of IPSS Int-1, but so far I don’t actually have any firm diagnosis). One of the reasons the diagnosis of MDS doesn’t fit is my lack of anemia (despite blood counts indicating pancytopenia, RBC is fairly close to close). Unlike neutrophils and platelets abnormally low red blood cell counts has symptoms, one of which is fatigue (not enough oxygen getting around, time to contact Lance Armstrong and get some EPO).

So, of course, now I’m beginning to feel more fatigued, or at least I think I am. In reality prior to this diagnosis and while preoccupied just with weight loss I often felt tired (from excessive exercise) but of course then dismissed the feeling and just pushed through it. Now my diagnosis tricks my mind into interpreting any little feelings I have in my body as being connected with myelodysplastic syndrome. But especially now I’m tuned into any potential onset of anemia, because it’s possible that will be more debilitating (a little less dangerous, however) that shortages of other myeloid cell lines. Plus the idea of having to get transfusions is really icky (I never gave blood because I hated needles and getting poked, now that’s becoming routine (and minor in relative terms)). But having emergency transfusions just to avoid worst symptoms (not really get energy back) and then chelation to address iron buildup is a real gloomy prospect. OTOH, my mind also gets optimistic news: I’m getting weekly B12 shots, plus had to do some vaccinations and weeks ago I had a little bleeding with the injections (uncommon, but for me possibly sign of my reduced platelets) and lately I’ve had no bleeding – coincidence or possibly the B12 is boosting my cell counts? Am I violating Nate Silver principles and just amplifying (fitting) the noise?

And in fact that’s still the bad part (for me) of this whole MDS thing. Having it kill me isn’t as bad as the potential scenario of last days being sick and having lots of treatments just to stay alive (not get better). And now the uncertainty of whether stem cell transplant is even on the table (some sources hint that it’s not done at my age, but others hint it is since I’m in good shape (otherwise) and thus not likely to die of some other cause, so the most aggressive treatment is indicated). And there won’t be any answers on any of this for another two months and maybe not even then.

So in some ways, at least before adverse symptoms arise, the worst part of cancer is the worrying about the future path of the disease. People with solid mass tumors get to have immediate treatment that provides hope and then they worry about relapse or metastasis, but MDS doesn’t have the “cure” treatment so what I get to worry about is how fast it progresses and how long I will stay fit enough to live a “normal” life. Is it like 80% of my remaining lifetime will be reasonably satisfactory or is it only 20% (whereupon having much more longevity is a curse, not a blessing)? Today I don’t know and I don’t really have a clear idea when I will know (maybe never) so it’s hard not to worry. Just a couple of days ago I was feeling the opposite, that I’d almost forgotten about my MDS (since I have no symptoms) but an exhausting workout on treadmill then forced me to think about it again.

Meanwhile I’ve made no progress on halting (and slightly reversing) my weight gain. As per previous posts allowing a little weight gain as reserves for treatments (likely to cause weight loss, possibly a lot) is OK, but since treatment is probably at least two months in future AND now with a vacation planned plus holidays just maintaining weight will be hard, so I really have to get more serious about pushing it down a little. Plus I can tell the difference; I’m up about 10lbs from my minimum and it seems to have all migrated to my belly so I’m on the road back to my former shape and I don’t want to allow that.

So today it’s off for a joint appointment (me and my wife) with our regular doc to discuss how we’ll manage my MDS, then a bit more geodashing (so maybe I can get the individual win this month, possibly my last ever), and perhaps to Lincoln for more dining out (not the right move to start reversing weight gain). Then tomorrow it’s wait for Subie repairs (impeding intense exercise) for our Oct Texas trip, so that’s three days this week without intense exercise and controlled eating, so it is hard to pull off even the slight weight loss I need. Soon being concerned with something that minor (a few lbs swing) probably won’t be on my mind.


About dmill96

old fat (but now getting trim and fit) guy, who used to create software in Silicon Valley (almost before it was called that), who used to go backpacking and bicycling and cross-country skiing and now geodashes, drives AWD in Wyoming, takes pictures, and writes long blog posts and does xizquvjyk.
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