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begin the countdown, day minus 12

June 27, 2012

COH likes to use the infusion date of the donor’s stem cell as day zero.   The countdown actually begins with the first day of conditioning, that is the euphemism for chemotherapy.  For me, that begins this Wednesday, day minus 12.  We drive down today, Monday,and tomorrow I get a PICC line and see the doctor for final clearance.  The first 5 days, I go to COH in the morning and get outpatient Fludarabine.  I’ve been led to believe that I’ll have the afternoons free and will feel generally OK.  So, I’ve filled up the time with going to museums including the Autry, Getty in Malibu, Huntington, and Frederick Weisman art foundation in Holmby Hills.  Night time is equally as full with dinner with old friends Claire and and I haven’t seen in a long time.  Sort of sounds like a vacation.  Ya!!!   Sunday or next Monday, day minus 6, I get admitted to the hospital and they add some other “conditioning” agents that will take down my immune system.

This getting ready and packing for 3 to 4 months to be in LA is a bit of a challenge.  Actually, clothes are the least of it.  Its all the other things.  I’ve walked through each room in the house a dozen times opening droors and seeing if there is something that I might need or want.  The diversity is impressive, from a flexible head massage device with little fingers to all the electronics.  I’m bringing a flower water color painting of my mom’s to put in the hospital room and photos of the kids and family.  I found a lot of stuff that I can’t live without and other stuff that is currently sitting in the trash cans.  The yard looks beautiful.  I’ve been working in it for several hours a day.  But now its sort of like “when the cat is away, the mice will play”.  Who is going to pull those weeds and water the way Claire and I do.  If for no other reason, she’ll need to check on the house every couple of weeks for my peace of mind.

It’s Wednesday.  I thought I’d continue Monday night but I didn’t.  I got the PICC line, it was a breeze.  My last drink of alcohol was last night.  The doctor read me the riot act about alcohol.  Today I go for my first infusion of Fludarabine.  The doctor said I should do OK, maybe a bit of Nausea.  But she also said the next several weeks in the hospital will be rough but things will get better.

Someone asked about how things are going for my wife and kids.  If anyone has a question, please ask.  Claire, my Eleanor Roosevelt, has been supportive and strong.  She brought quilting projects to last a while.  I think for sanity seek, she’ll go back home periodically for a couple days if I’m OK.   Sam is 26 living in Indianapolis with his girlfriend looking for a job.  He is doing well.  Naomi, 22, will know today if she got a job in SF and moving from our house.  Joe, 19, rented a room in SF for the summer and has a job doing mobile car washing.  This whole thing has been going on for such a long time that it has given the family time to process it and adjust to it in a healthy way.  My family in LA and friends at home (everybody who are reading this) helps me get through this ordeal.  It feels good to have such a strong support system.

 

 

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7 Comments
  1. Alexis permalink

    I. Hope it all works out

  2. laura maslon permalink

    we just wanted you to know we’re thinking good positive thoughts for you. if you need a place in the next week to just see the ocean and breathe in it’s goodness. the house is always open to you. love, cousins jim and laura

  3. Julie Dresner permalink

    Hi Jim, sounds like things are moving along well. Yes, fludarabine is very tolerable..you’ll do fine. I have a few tips that helped me.
    – decorate your room so it feels as close to home as possible- people sent me cards and I put them up all over the walls.
    -change your clothes every day in the am I put on sweats and changed at night. It made me feel less like a sick person and I wasn’t in pj’s all day.
    -the foods not great so I had little snacks – nuts, candies to suck on – things to munch on in between meals
    -take advantage of the P.therapy team. They are great and will come to your room during your low count days. Before your counts drop- walk the halls a few times a day.
    – they have a laundry facility in the village where Paul snuck in to do my laundry.
    So here are a few things I remember, if I recall more I’ll let you know.
    If you have any questions– please get in touch..
    wishing you the very best,
    Julie Dresner
    jstarrd@aol.com
    310.573.9310

  4. That is all well and good, but (despite my great admiration for Eleanor R.) couldn’t I be someone alittle more glamerous? Jackie O. or Dolly Madison? I think Dolly was a quilter…

  5. Gwynn permalink

    Thanks for the update. I don’t know if this will help, but my friend just went through Chemo and she said what saved her from the nausea was drink lots of fluids. Think water water water…they make some vitamin waters that are kind of sweet, but if you put just a small amount in your water it helps add just a touch of flavor.

    We are sending you hugs and prayers to get through with no problems!!
    Lee and Gwynn

  6. Ann S. permalink

    I’d offer to help with the gardening, but am afraid my own Homeowners’ Association would not give me a good reference.

    Do you guys know about the Cabrillo student job center? Phone is 479-6413. You might be able to get a student from the horticulture program. I know of several folks who have lucked out and gotten interested and knowledgeable students who are happy for the $, experience & a reference.

    So glad things are finally happening. Keep us posted and know that we’re all sending strong & healthy wishes to you and Eleanor.

    Ann S

  7. Duffy Grant permalink

    Thanks Jim, for keeping us updated. If you need someone to check on the house, I would be happy to but I don’t come close to the C & J gardening talents. Along the lines of Cabrillo students to assist you, people in my neighborhood have used students from the UCSC gardening program with great success.
    When you get to a place where you will want to have visitors in LA, Stephen and I would like to come down and see you. Give us a heads up.
    With much love,
    Duffy and Stephen

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