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It’s going to happen

June 16, 2012

Hi,

I returned from COH in LA yesterday after 2 days of testing.  Because I had such a long delay from my last test, everything had to be repeated.  On one hand it seems like unnecessary bureaucracy but my tract record has shown that surprises can and do happen.  So far, no surprises.  I’m to call Monday for the final go ahead.  When I was there, I went to a meeting where potential BMT recipients were being briefed.  There was this one black girl about 10 years old and her mother.  She smiled and said her brother was the donor.  One of those touching moments.  I wish I didn’t know as much as I know.  This is definitely going to be an E ticket (Disneyland).

The plan is Claire and I drive to LA Monday 6/25 and the games begin Tuesday.  They place a PICC line in me for IV access and I see my primary transplant doctor, Margaret O’Donnell.  She comes well qualified and seems like a good doctor.  Wednesday to Saturday is outpatient chemotherapy (Fludarabine) from about 10AM to noon.  They don’t call it Chemo.  They call it “Conditioning” but a rose is a rose by any other name.  They need to knock down my immune system so I don’t reject my brother’s stem cells.  They say I should feel OK, so during the afternoons I want to go to some museums like the Huntington, Neon show in Pomona, Getty Museum in Malibu, and Gene Autrey Museum.  Claire’s brother-n-law works at the Autrey designing exhibitions.  I also plan on seeing some old friends in LA.

The fireworks start Sunday, 7/1.  They add Melphalan to the regimen and Tacrolimus and Sirolimus and they admit me to the hospital.  This continues till July 6 when I get the stem cells from my brother John.  I spend the next month in the hospital in isolation waiting for his cells to set up house and my immune system to come back.  It’s a party I’d rather not go to.  The food is lousy, low bacterial diet, and they guarantee me that I’ll be fatigued, nausea, no appetite, can’t focus etc…  Hopefully I won’t have some of the really ugly things that can happen like opportunistic infections, kidney and Pulmonary problems.   Claire can stay with me in the hospital room if she is healthy and wears a mask and gloves.   Having an advocate is important since I won’t be “all there”.   Now is the time when someone in the audience says, “What else is new”.

I really appreciate hearing from everybody.  I’m the first to admit that I’m scared and anxious.

Jim

 

 

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12 Comments
  1. Mike Leslie permalink

    Best of luck Jim!! Dante and I are thinking of you and Claire, and sending tons of positive vibes your way.

    We’re so close to the Getty (up Mandeville Canyon). Give us a call if you folks want to have tea or say hi, or meet you at the Getty, etc.

    And once you are in isolation, if Claire wants a distraction, just give us a call. Home: 310-476-1443; Dante cell: 310-508-8774.

    Mike and Dante

  2. Gwynn permalink

    So glad to hear that you are finally on your way to getting back to health. I know how tough this must be, but you and your family are strong and will get through it. Our thoughts and prayers are with you. Lee and Gwynn

  3. Kris and Bob Bloom permalink

    Dr. E. …Glad to hear you finally have the green light. It seems like the rest of the journey is a long one, but when it’s all over you will hardly remember the long wait. Lots of prayers and our thoughts are with you. Thank you for keeping us up to date. …Kris and Bob

  4. Julie Dresner permalink

    Hi Jim,
    I am wishing you all the very best.. I have been there and done that and know that you will do well. It’s no picnic for sure, but it’s not as bad as one might think. Take advantage of the Phys. Therapy as often as you can even if your feeling lousy… they are great and it really helps..Even a few minutes. Any questions I can help answer please feel free to ask me. Please keep me up to date. My thoughts and prayers are with you and your family,
    best,
    Julie Dresner [friend of Bob & Sarah]

  5. Mark Lewis permalink

    Hey Jim, We really wish you the very best now that it’s actually happening. We will be away from L.A. June 27-30 (up in Berkeley). But let us know if you feel up to getting together, seeing the museum or just saying hi.

    Mark, Kathy and Nicki

  6. john filice permalink

    Hi Jim: Marsha and I are thinking great thoughts and hope you can sail through all this and in a short time it will just be one of those distant memories. John Filice

  7. Laura maslon permalink

    Just wanted you to know Jim and I are praying and rooting for you. Laura

  8. Randy Danto permalink

    Sometimes the wait is worse than anything else. If anyone has the strength and fortitude to beat this, it’s you, Jimmy. Claire is a perfect support person for you and I am completely confident you will be back in the garden sooner than you think. Much love to you both. Randy & Mark

  9. Ann S. permalink

    Doc E,

    I can’t help noticing that nobody in the ‘audience’ has claimed ‘What else is new” – so I guess it’s up to me. Rough job, but someone’s got to do it, and who better?

    And, while I’m picking on you. . . have you scheduled your absence from Santa Cruz County just to avoid the construction on Hwy 1 & Soquel Dr? Planning to go off on a little spa vacation, eat bonbons, read trash novels and come back to a widened highway? OK, so canned bonbons not even sounding good to me. I”ll visit Mother See’s and eat some fresh ones in your honor. Another rough job, but I’m up to it.

    Have a safe drive to LA (did I mention you might want to avoid 1?), get lots of rest and get the show on the road.

    I’m sending best thoughts for a successful procedure and a quick recovery. You’re on my mind, and I’m anxious to see you back soon. Am also saving all my worst email jokes to send to you when you’re too miserable to hit me.

    Ann

  10. Chip Goldeen permalink

    Jim,

    I guess you are driving to LA today, ready to start everything tomorrow. Lisa and I are thinking of you and hoping all goes easier than planned! We can not wait until you beat this thing and are back in Santa Cruz for good. Stay strong.

    Aloha,

    Chip

  11. Esther Levandoski permalink

    Jimmy, We wish you the best and easiest time. And more importantly, a cure and happy life ahead.We’re thinking of you as you begin your treatment today.
    All our love,
    Esther and Gerry.

  12. Dante brown permalink

    Hi Jim and Claire, I can’t find a cell phone or contact for you here in L.A. Please call me at home at 310 476 1443. Hope all is going well. Mike is unfortunately still in trial in orange county but definitely please call me. Take care, Dante

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