International MPN News, Science & Opinion

Tonight in the house of MPD, what really goes on?  What pain, what eruptions lurk in these proliferations?  One friend has written me that he is in hell and I think hell must be very large  
     I need to work tonight, so I sat down at the computer, checked my e-mails and visited our Facebook page.
    To come into our Facebook Forum is, at first, confusing. The gaiety and life, more like a ballroom than a waiting room.  Life goes on, greetings and exchanges of photos,  birthdays and babies, life roars its greeting on opening our Facebook page. Jeremy’s childhood photo, a grinning happy host.  Stories and questions.
      There’s compassion, sympathy, advice, tall tales, outright myths flying all around the room.  It’s like a warm family gathering, hard to resist and hard to take too much of.
  

And under it all another life, clasped tightly together two lives, each asserting, proclaiming its needs, rolling round together metastasized into one another. Another subterranean life. Some of us have had difficult procedures this past week, painful and uncertain and are recovering, drugged. Some are in clinical trial, some in the middle of stem cell transplant, some just struck dumb.

       I was enormously cheered to read about Jocelyn’s shaving cut and Barbara’s prompt 5 blade Venus Embrace by Gillette response!  So healthy.  My Gillete Mach3 has lasted almost a year, I think. .
       What I’ve found is there is a soft side to proliferating blood disease, diffuse and subtle along with a harsh and blinding side.  These past days I have been in a fugue state, neither awake nor asleep but often rammed solid on my back, in bed, legs leaden, eyes heavy.  This is the familiar soft side paralysis. It’s tough on the animals.  I am unsteady, drop and break things – a favorite cup and rare lamp today – forget what it is I planned to do next.  I stop eating, mostly,  This time just about completely. Food seems to be a mistake my throat refuses to accept.  This is a bad place to be as the deadline for the October issue nears. It passes.
       But there is a far worse place, a place of pain that can’t be ignored, a serial deep cramping of blood, bone and muscle and organs  from which there is no escape. We each have our catalog of pain, our strategies to slip its bonds, but its release is the punch line of a long joke, the sudden clarity that MPNs are real, cannibals boiling up kettles in our bones.
       For many of us, for most of us for some period of time, our MPN is a distraction, an occasional talking point, a background shadow, a phlebotomy or a few too many CBCs, a baby aspirin.  It is rare, I think for the snake to lie coiled, unmoving, forever.  But so long as it’s not slithering around and raising its agate eyed head in hunger, let’s party on.

      During this tough slog, I’ve been working primarily on Joyce’s story for the Magazine.  There could not, I think, be a better testament to the double life we lead with these diseases.  I didn’t cry for Joyce until the end, until I felt our common struggles, until I read her last posts.  

Be well, be happy,

    Zhen

Comments on: "Facebook and the Double MPN Life" (7)

  1. Beautifully written as usual. I am so sorry that you are having a rough time and will certainly keep you in my prayers – hopefully tomorrow will be better.

  2. Zhen, Thank you for this post. You said it all so eloquently. I truly “felt” every word you said. We are all in this together but your efforts do not go unnoticed!

  3. I to suffer from MF, the symptoms are stable, counts are dropping somewhat, my HGB is 10, anything lower then 9 we are talking transfusions. My platlets have been running high, I take 2 Hydrea per day and 3 on Fri. and Sat. This year I had a thymoma tumor, I had to have a thymactomy and had it removed, it was stage 1 cancer and they got all of it out, no chemo no radiation. Thank God. I gained alot of weight from menopause and lack of exercising. I also have a change in Taste buds. Im all swollen, hands, feet and now they are doing a check on my heart. It never ends, Im tire of being sick and going to doctors. I also stopped all painkillers, I was taking way to many to take the pain away, the pain of being sick. What I got out of being sick is enjoying each day and being gratful of waking up and for the most part feeling good. I see life different then most people, I see the gift of life!!

  4. Barbara Kurtz said:

    Sometimes I find it easy to forget how ill some people are with an MPN. It’s because of how much folks contribute to helping others. When I’m reminded how sick some folks are, I find it amazing how each person copes and their accomplishments. Zhens writing, Joe’s painting, Jeremy’s cycling. And all of MPN-Forum’s participants. Bonnie and Joe’s love story reminded me that we are much more than our disease. Cyndy’s cooking reminds me that there is still a normal. Which is why I enjoyed the Facebook discussion about leg shaving. I hope the new season brings better health. Though cold weather is not our friend. Makes my fingers and toes hurt.

    • Barbara Kurtz said:

      Cyndy and Sam. I am so sorry for calling Sam “Joe” when I mentioned his painting. I knew better. A senior moment or chemo brain. …
      And I’m glad Zhen mentioned Karl. I still think of him often He offered advice to others right up until his end. And allowed us to share a very personal moment with him.

  5. Mariel Strauss said:

    I too am living ini hell. I find that it’s REAL common right now. People on my Porphyria e-mail list are complaining that they feel “crazy” or “are crazy” at this time, wondering if there is anything to help. We suggest a few bandaids like Klonopin, a change in diet, a dropping of a probably triggering drug. Sanity may briefly return.

    Now trying to decide whether to take low dose Hydrea, my 6th attempt at chemo this year.
    I will probably get painful feet (more painful than usual) a worse rash, etc. Should I go have p32 and risk this radiation to lower platelets stirring up my Porph Monster, which NO ONE has ANY idea whether it would happen. Hematologists do not know about these things. A trip to any of the teaching hospitals would almost certainly be useless; Mayo and Hopkins know nothing, at least not those “experts” I’ve talked to. I’m on my own. My local heme speaks against p32, saying it could put me into fibrosis.

    I sent I’m my sample to 23andme. I’d like to know my haplotype. There is a possibility I might come out with one of yours, Zhen even though I am supposed to be descended from UK nations. My medieval Scottish ancestors and some of their compatriots were probably Jews or part Jews, as many Jews escaped there from the holocausts of their time.

    Mariel

  6. Thanks, Zhen. As usual, you impress me with your words. It is hard to be happy when there is uncertainty. When will I feel well enough to do my work? When will I die? Reading that the disease progresses even though your blood counts are stable. I try to ignore all that, I try not to complain, because I realize that I can bore everyone to death with my complaints. But it is good to know that you can “let it all hang out” to those who understand. I’m so sorry to hear of your bad days. Feel better. You are such a talented guy!

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