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DAY 35

August 10, 2012

I left the hospital yesterday and moved into our studio cottage at Hope Village.  They are like the old nicer hotels rooms about 400 sq. feet.  There are about 40 units within the COH 120 acre campus grouped in clumps of 4 with adjacent units having irregular common walls.  They are simply decorated and very clean.  They clean them daily knowing that they need an extra level of cleanliness due to people being immune suppressed.  All have small kitchens so Claire will be able to prepare low bacteria meals for me.  I’m sure this is just how she wants to spend the next 2 months.

I was a little surprised that I was discharged yesterday and not today, Friday.  They advanced the date by 1 day because I didn’t need the acute care of the hospital and they have people in need of  the room.  But, we had planned for today .  Claire went back home to Soquel and is taking care of house stuff, mail, garden, etc…and isn’t returning till this evening.  Naomi is coming with her for a visit and can’t get off work till noon today.  So the long and short is I had to find a care giver till Claire returns this evening because every BMT patient in the village has to have a care giver 24/7.  There was only 1 person, my mother.   Things have actually gone fairly smoothly and she has been helpful.

The view from COH looking north is actually pretty spectacular.  It’s about 5 miles from the San Gabriel Mountains that jet up several thousand feet from the flats of Duarte and adjacent towns.  It is very dramatic.  As many of you know, Southern California is having a heat wave.  It’s about 104.  I can’t tolerate this heat so I’m inside all day except when I have to go to the clinic or pharmacy.  We call for a tram which takes us from our cottage to wherever because I can’t walk the distance in this heat.  The good news is that at night, the temperature drops to a comfortable tee-shirt and shorts attire.  Last night we walked around the gardens.

COH was originally a TB Sanitorium.    It then became a cancer and BMT center.  In the early days, most of the doctors, patients, and contributors were Jewish.  We walked by an old Synagogue last night on the COH grounds that used to have weekly shabot and Saturday minyan services.  It no longer functions but it’s a beautiful building and open during the day time.  Now a days, COH has all religions, international doctors, and about a 1/3 of the patients are Roman Catholic.  They have a huge rose garden, sculpture garden, and  magnificent Japanese garden.  They have some huge trees in a grassy area that are spectacular.  I was very impressed.  Even without being a patient, this place is worth looking at, unless it’s 104 degrees.

So, what have I learned.  It’s a drag being a patient.  This disease has some quirks.  There is no normal course for BMT.  Everybody walks this path alone.  Don’t bother asking when will this go away and when will I be able to do this or that.  The answer is, it’ll be when it’ll be, one day at a time.  Its taken me a while to make peace with that reality.  Also, progress is measured not in days but weeks, months, and even years.  For example, my WBC have gone up and down like a yoyo.  It was climbing for 1 to 2 weeks and then dropped.  I ask myself what is going on?  Did I do something, is the BMT failing, etc…  Nope, it’s just the way it is.  As I mentioned in a previous blog there are land mines, GVHD,  that can go off for apparently no reason even months and years after a BMT.  Lastly, there is no end to this syndrome.  Things can happen for the rest of my life and probably will but… right now, I fell OK.  I still feel that I will get through this pretty good all be it with some bumps and bruises.

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10 Comments
  1. laura maslon permalink

    it seems like this must be progress getting to walk around, even if it’s at night. and soon your guardian angel claire and naomi will be at your side. all good wishes. shabbat shalom, laura

  2. Pam Pacht permalink

    Spectacular News. May this be a blissful cottage for you and Claire…
    Warmly (and I mean that literally)
    Pam Pacht (Betty’s friend)

  3. Chip Goldeen permalink

    Jim,

    Glad you’re out of the hospital and in your new “home-away-from-home”. Lincecum pitches tonight against Colorado in San Francisco at 7:15pm. Hope he has a good night and the Giants get a win. I just got home from a Trade Show in Orlando, Florida—what a dump! High temperatures and humidity, so I can sympathize with your uncomfort in the hot LA temperatures. Hang in there and try and enjoy your new “freedom”.

    Chip

  4. alexis permalink

    glad you are in the cottage-from your descriptions it sounds amazing. now you have time to listen to the cds you’ve gotten from me.

  5. lydia kohler permalink

    Great to hear your descriptions of the mountains, the gardens, the trees, the old Synagogue. I am imagining your mother, grateful to be able to step in and be with you when you really needed her. I am glad you have had a good time together.

    I am with my mother now. It is hot here, too, but there is a two and a half acre pond that I can swim in (complete with dragon flies, tiny fish, frogs). There is a summer chamber music festival here. Yesterday we drove to Saint Helena to hear an open rehearsal of Beethoven’s last and first string quartets and a musical biography by Smetana “From My Life” in which the first violin plays the high pitched tinnitus the composer heard ringing in his ears.

    I’m sorry I missed the woodwind quintet concert Wednesday night: Summer Music, Farkas 17th Century Dances from Old Hungary (I’ve read this one at Humboldt), Irving Fine Partita, a quintet by Miguel de Aguila (1957) with the following movements: Back in Time, In Heaven, Under Earth, Far Away; and a suite by Julio Medaglia (1938) The Gilded Age in South America: Tango, Vals Paulista, Chorinho: “Walter’s Requinta Maluca.

    Sounds like you’re learning to dance with uncertainty and it does sound like you are making magnificent progress in the longer arc that includes all the smaller ups and downs.

  6. Esther Levandoski permalink

    Congrats on your new-found freedom! Yeah!

  7. Richard & Annie Staniford permalink

    We are following your blogs, and we are so happy things are progessing so well. Keep up your wonderful spirit – eventhough it is sometimes difficult.

    Annie and Dick Staniford

  8. ann and patrick ryan permalink

    Ann and patrick ryan watching olympics as we hope you are. Very cool to watch people doing their best as we know you are doing your best to regain your feet. Eagerly awaiting your return, we remain your faithful and patient patients, A and P

  9. marc yellin permalink

    Greetings from the Yellin’s. Glad that they’ve extended your leash. Now you can bark louder. Next step a personal fire hydrant?
    Are you allowed to have visitors?
    mahalo

  10. nina@asis.com permalink

    Dear dear Jim — you’ve already gone thru IT pretty well, more than pretty well from others I know. And living in the NOW is a way of life many of us strive for — it has gotten dumped on you BUT maybe you’ll start levitating soon. Keep me posted. I’ll likely still have to stand on the floor to talk to yat the CMW next year. Much Love & warmest hugs Nina

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