7-24-10 Saturday

(Ghost Written once more.)

Status:  8.0/10. Steady as she goes.  Got a better night’s sleep last evening,  but still very tired as you might expect.   Platelet transfusion waited until the morning, so they obviously knew I was serious about refusing one in the middle of the night. 

Events:   Lisa and the nurse nagged me so much to get out of bed, that I finally got up to walk to quiet them down.  Did three laps around the ward, despite weak quad muscles.  Then sat in a chair for a while.  As anyone who has gone through something like this knows, even that takes an enormous amount of energy to pull off.

Appetite remains nil – and nothing tastes good.   I will clearly have to go on the pickle diet again when I get home to get my taste buds up and running. 

Dr. Rick Jones, the head of transplant at Johns Hopkins came in to meet us.  He’s been following my case from the get go, but we had not had a chance to meet him in person until today.  We had an interesting chat about bone marrow transplant.  He likened the procedure to mowing down a dandelion.  In about half the cases you get the root too – but in half you don’t and that dandelion (leukemia) grows up again.  So he says the protocol now is to continue maintenance therapy of some sort after transplant (just what drug therapy depends on the characteristics of your leukemia) to increase the chances of a permanent remission. 

Today was all about resting and taking it easy with everyone’s expectation that I would go home tomorrow.  The problem is, that message was not communicated to my GI tract.  I had another GI bleed.  They’ve decided they need to do a scope to see what’s going on.  Our attending will see if that can happen tomorrow, but more likely on Monday.  So my hope of sleeping in my own bed is still just that – a hope.

Comments:  Lisa has had great help this weekend from friends handling the kids so she can be up here with me.  And my brother Hank flies in tomorrow to help out once again.  It really does take a village. Thanks so much for being part of ours.

Love,

-Bruce

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10 Responses to “”

  1. Wendi Says:

    I hope this dreadful round ends soon so you can go home and be with your family. Sending love and healing energy your way.

  2. Ashby Says:

    You know, Bruce, the Stones (Jagger/Richards) wrote a song called “Dandelion” in 1967 and that John Lennon and Paul McCartney contributed the falsetto backing vocals. Personally, I never liked the song . . . so take that dandelion down to its roots!!!

  3. wendy Says:

    B- while my back surgery L4-L5 ( you well remember yours too) was nothing compared to the chemo…I do remember that getting out of bed was a mountain to climb and walking to the bathroom was like a marathon.. our mind say ok, I’ll get up and the body says…nope there’s no gas in the tank….it’s amazing how our energy levels change and can be depleted and recover…here’s to your recovery soon..and if it takes nagging to get you moving…so be it… sometimes it’s support and encouraging and sometimes naggin’ and even threat, if necessary

    “Hanker” will be there and he’s got the right stuff… I know he will be your 2nd best asset after the amazing Lisa who is obviously #1

  4. Sharon McDonnell Says:

    I can hear the effort. Wish we could bottle up something and send it your way. A little buoyancy infusion could be nice. I hate all these procedures and find I am also a little hostile about the dandelions. I mean really, if the goal is to get the roots of the dandelion you don’t use a mower.

    Yes yes, metaphor and all but out here in the peanut gallery I’d say a new metaphor would be a good idea.

    Cheers to you and all your helping hands. Sorry for the long stretch of hard days.
    Thinking of you
    Sharon

  5. Jill Stewart Says:

    Thinking of you throughout this ordeal, Bruce. You are just so darned good at explaining all aspects of the treatment, side effects, unexpected twists and turns: the entertainment/education value is quite high for the layperson and you exhibit such a great degree of patience and forebearance in the process.

    You are really providing the patient’s experience through the doctor’s eyes and knowledge. For those of us with friends and relatives in similar circumstances, you provide a level of depth, insight and explanation that is not being given by their providers to us, the family.

    Thanks for communicating so regularly, so knowledgeably, and so beautifully. Be well and I’m wishing for you to be in your own bed soon!! Love, Jill

  6. Debbie Blum Says:

    Dear Bruce,

    I am just back from my first vacation since 2007, and catching up on your progress. Sorry to hear you have hit some big bumps on your road to recovery–yes, your road to recovery, so hang in there.

    Here’s to a better week, and going home to your family.

    Thinking of you,

    Debbie

  7. Laurie Samuels Says:

    I’m hoping today is a better day. Would love if you could get the scope over with today…sooner the better. Continued love and hugs to you and Lisa….I hear Lewis Weiss makes the best pickles!!!!

    Laurie

  8. wendy Says:

    the doctors are tricking you…the scope is simply looking for all your strength , intelligence and wisdom that they can’t account for under this circumstance…they want to know your secret and they are desperate to look anywhere…

  9. Hopie Says:

    Just Hopes for a good day today and every day from now on to Transplant, should we send you some of Lewis’ pickles? Much like Uncle Henry’s. Love you so very much, Hoppe( MY mother used to call me that!)

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