International MPN News, Science & Opinion

arch mcc archm49@gmail.com
to ourMPNforum
 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

Comments on: "A letter to the editor," (9)

  1. Nathalie said:

    Hi Arch,
    Thanks for this. Beautifully written, so true and I had a good chuckle reading it!
    kind regards
    Nathalie

  2. Arch M said:

    Thanks All, for your comments. Just wanted to be a ‘can opener’ for ‘letters to the editor’. Please post your own letters too. Opposing opinions welcome. Hey Ellen, “The two faces of Ellen” might be handy for taking both sides of an issue. Maureen, I’m sure many Canadians will pitch in and add experts from the land of Osler, Banting and Best and world famous medical schools and hospitals in Toronto and Montreal to Ellen’s list. (I can see our Western Province patients getting set to comment; “What about our experts? They aren’t chopped liver, you know!” :) A.

  3. Maureen said:

    Good points Arch and Ellen, thank you. I have an excellent local “general” hematologist (and GP), who I believe manage my PV very well and are super kind and attentive. But then when I read about people flying off to see the MPN experts my anxiety goes way up and I think, well maybe I am missing out on the best new treatment approach. Plus, I live in Canada, and as far as I know, we don’t have any “big guns” MPN experts, and I am not comfortable traveling to the US for a medical assessment (no medical coverage for that). Also, the new MPN drugs that seem to be more readily available in the US and some parts of the EU, are not an option for me. Anyway, your posts helped me to count my blessings!

  4. Arch, thanks for your musings on this topic. You put it so well – there is much to admire about researchers in the MPN field (thank you, all you researchers, and please find a cure soon!) but it does not mean they are necessarily the best choice as a regular hematologist. We all have to evaluate what we need in a doctor, and whether a given doctor meets those needs. Far from the big cities with well-known MPN specialists, I want someone nearby who is there when I need him to answer questions or see me tomorrow if scary symptoms show up. A consult with a big wig is definitely in my future, but a local hematologist who cares is what I really need – and fortunately, have.

  5. Just keep kicking up those heels….and when no longer can we kick…we will shuffle.

  6. Lu Valesh said:

    So very true, Arch. I always did like your way of seeing things.
    Best,
    Lu:)

  7. Excellent advice as usual.

  8. Diane Cowan said:

    Hi Arch,
    Thank you for your words of wisdom they have helped me a lot tonight
    Dont ever stop Diane C

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