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DAY 64

September 9, 2012

My doctor says “I’m one of the easiest patients she has”.  I’m not having any significant complications and she still thinks I’m on the right path, all be it a bit slow.  I’m OK with that.  I’ve made peace with myself that I’ll be here till they release me.  The target is 100 days post transplant but I’ve learned that it isn’t written in blood, some leave sooner and some stay longer.  Maybe most important is that I truly feel in my mind, heart, and soul that this transplant is going to turn out all right.

I think it’s a combination of so many things.  All the support I’ve received from family, friends like you, and fellow transplant patients has been enormous and so wonderful.  I’m receiving great medical care and the housing and ambience is quite nice here at Hope Village and so favorable for healing.  I’ve found a lot of power and solstice in chanting (I finally got it down).  Every day on my morning walk  and in the shower at night I say repeatedly  “Make this transplant fully successful with complete healing of my bone marrow, body, and soul”.  After that I say the Shema prayer.  But I also know there are no guarantees on my future.

My days are fairly quiet and predictable in that I am somewhat limited in my activities.  I go to clinic every Monday and Thursday where they draw my blood and then I see the doctor and discuss the results, how I’m doing, and she adjusts my medications.  The last 3 weeks I’ve been getting Neupogen weekly to stimulate my WBC.  I seem to be in a pattern where they respond temporarily and then need another boost.   The highlights of my days are going to clinic and hoping and waiting for that day when my WBC and Platelets are up and stay up.  I get physical therapy 2 times a week which beats me up a bit and I’m trying to eat, eat, and eat and yes, I’m still on a low bacteria diet.  I’m supplementing with ensure (the trick to making it tolerable is by adding chocolate ice cream to it) and protein powder.  I take naps, watch the Giants baseball games, play my flute, and read medical journals.  The COH has ongoing CME (continuing medical education) and the next one in early October is titled “How the Experts Treat Myelodysplatic Syndrome”.  That one caught my eye and I’ve been given permission by the powers here at COH to attend.

Outside of my cottage I have to wear a mask and be completely covered from head to toe because of the photo dermatitis risk.  It’s a routine that I’ve grown accustomed to but I can’t say I really like it.  I’m still not allowed to be in crowds like museums, retail stores, or around anyone sick but the day will come.

I guess I’ll close with a little infomercial.  Something I found out recently is the cost to the hospital to buy blood and platelets.  I guess that  includes purchases from red cross?  Anyway, blood is $300.00/unit and platelets are $800/unit.  I’m making a pitch for donations, not for me but for those in need.  I just heard my oldest son, Sam, was contacted to be a potential bone marrow donor.  He must have matched with someone.  What a potential Mitzvah

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12 Comments
  1. Nna Haedrich permalink

    Hi Jim — I hope you will be willing to mentor a dear friend of mine–Carolyn Lehman– who is in the early stages of this process. I think your blog and your “hand-holding” might be very helpful to her at this point. I have given her your blog site address and she may log in as me. But I’m not sure if that will work, so if you would be willing to be in touch with her: carolynleh@gmail.com that might better help foster the connection. She also has a caring bridge contact option where she documents her process which might be very interesting to you; she is a writer and a very insightful person.. I love you both so much and imagine that this link will be a joy to you both. I’m off to Moline Ill to my Dad and then on to Europe. I’ll have a computer with me and will be keeping up as i can but I may be a bit sporadic. But know you are daily in my heart, and in my meditations & prayers. Big warm Hugs Nina

  2. Chip Goldeen permalink

    Jim,

    Sounds good. Keep it up! The Giants lost a close one to the Dodgers today, but won a great one yesterday. Hopefully you got to see a bit of the games. Tomorrow night hopefully we will get another win. Weather was beautiful here in Santa Cruz today, no waves, we need some surf to make it perfect. You can tell summer is over though, Santa Cruz traffic is way down, you can actually drive around without getting stuck in beach traffic. Hopefully you have passed the half way mark and are closer to coming home. Stay strong.

    Chip

  3. Betsy Walsh permalink

    Hi, Jim, Tim and I are thinking about you a lot! We look forward to seeing you back in Aptos!! The combination of visualization, prayer, chanting and of course, playing music is a good recipe for engaging the body in its healing process. Sound has created the universe and the power of those vibrations fills us with energy, light and power.

    Tim went to Hidden Beach today (I was playing music at our church!) and he said the dolphins were leaping high out of the water. He said it was amazing!Friends in Carmel saw whales doing a great fandango in Monterey Bay. Well, I may wax poetic about the style of dancing but the whales were definitely putting on a show!

    Betsy and Tim

  4. susan garfield permalink

    Hope to see you soon. Interesting about Sam. Hmm.

  5. Lee & Gwynn permalink

    Great to hear the slow and steady progress. You need to be careful rooting for the Giants. You might die of a broken heart! Giants baseball…..TORTURE! All our love….Lee & Gwynn

  6. Charlie Young permalink

    Hi Jim, great news things are settling down from the roller coaster of highs and lows. We are both looking forward to seeing you next week and will contact you for specifics. Contributing to COH sounds good and will look into that. Three cheers to your finally approaching normalcy!

  7. Bob permalink

    My doctor says “I ‘m one of the easiest patients she has”- you are such a slut! Go bro go! See you tomorrow with Sarah and the Buzz. He is driving Gary down for his follow-up appointment at 10:30. I give platletes tomorrow. $800.00…hummmm…. maybe they can do better than a teashirt and dorito chips?

  8. Lorna permalink

    Hi Jim, so glad to hear about your progress, also great that you have that course that interests you to look forward to in October. I’m glad to hear you are playing your flute. I feel certain that your daily affirmation and the Shema are activating and guiding your healing. This daily practice may be one of the great gifts that this experience is bringing into your life.

  9. laura maslon permalink

    i have always thought that Shema prayer has great power to it. we should all recite it with you in mind every night.
    i have so loved your letters. full of insight and introspection. wonderful to read. i worry when i don’t get one for a few days. jim sends his love. laura

  10. Clarke Parsons permalink

    Jim, I have saved all your blogs. So informative. I hope that you will write a paper, etc. when you have won your battle. Keep up the good work. Miss seeing you. Clarke.

  11. Alexis permalink

    That’s awesome that your healing process is going so well

  12. marc yellin permalink

    Shabat Shalom and wishing you the Bestest, Ever Most Finest and Shiniest (and Totally Awesome) L’Shana Tovah. May all of the healing powers of the New Year and our community come your way and infuse your body. I’ll miss your company in the Temple’s Bleacher Bum section but will be thinking of you. Regards and noogies from all. Keep up the Great Work!!

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