MPNforum Magazine

arch mcc archm49@gmail.com
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 When you’re gathered at a family holiday dinner table, a good cook beats a biochemist.  When you’re building a house, a master carpenter beats an architect. …and when at home at 2 a.m. you are seized with severe chest pains and cold sweats, a good EMT beats a multi-published medical researcher a thousand miles away.

Ideally, I see our local hematologists as comparable to good cooks, our surgeons as master carpenters, our family physicians as friends more than just medical advisors and our EMTS as being there for us when we need them -Now!  This is no put-down of scientific researchers. It’s true that scientific study is a ‘sine qua non’ for the knowledge of the facts of  medicine to advance. but knowledge without action doesn’t get the platelet or red cell count up or down nor ameliorate a stroke or heart attack.There are real world practicalities in treating humans instead of mice, cute as they might be.

You may have learned all about the intermediary signaling pathways of Jak2 & Jill2.5 from the work of scientists whose prolific publications are measured in pounds instead of pages, but when your platelets have sky rocketed or nose-dived, your red cells sport designer nuclei and you are sick and tired of being weak and worn out, which would you rather be in charge, a leading edge researcher/publisher or a readily available hematologist? Small town residents living miles from a medical school can mutate their genes just as well as big city dwellers living near experts, maybe easier according to what is dumped in their backyards.

Be careful who you are impressed by when back home in the ER at 2:30 am far from the well rested competent and courteous denizens of university level research departments closed weekends and at 4;30 pm week-days.

Don’t rush to judge harshly the local nurses and hematologists whom you belittle for not knowing all about the heavy allele burden shouldered by your neutrophils when C`Z^XN*W goes into a gain of function mode. A cerebral embolism is a scary thing not to be suffered on the road and you just might need some help at home. Be careful not to burn your bridges.

As always, my posts have a large margin of error, ~ 50% + or -. ie.basic coin-flip conclusions, but nothing is certain in construction sites, kitchen or clinic. I’ve heard it said that if an experiment works the first time you must be using the wrong equipment. Some geneticists may be good carpenters, some biochemists may be really good cooks and some MPD researchers may be excellent clinicians, but on average, I’ll take a master carpenter, a good cook and a good doctor just to be on the safe side. They may not know the answer to the perennial question; If a red cell falls in a blood stream and no one is there, is there a sound? But their grits aren’t lumpy and they can tie a suture and treat a sore throat …and a forlorn and  frightened heart.

I am neither a proper humorist nor a insightful philosopher, I wish I were. But I don’t consider myself as being an MPN iconoclast or doomsayer either. I happen to believe that a silly smile in the midst of a frightened cry isn’t a wasteful denial nor does it diminish the importance of facing the inevitableness and reality of death and dying for all of us. If I didn’t laugh sometimes I’d cry.It’s my defense for no longer being able to stand for five minutes or walk fifty yards or remember what I once could study with pleasure and recall with accuracy.

As they say on the internet, “HTH.”    I hope this helps someone to wipe their tears and summon the courage to face their MPN life as it is rather than the way they want it to be.

Best,  Arch