10-13-10 Wednesday

(Bruce wrote his blog but then it mysteriously disappeared off his iPad so Lisa is picking up the pieces. Any medical errors are hers.)

There are always curves in the road.

Status: 8.0/10. You will notice quite a drop from my 9.5 status yesterday.  It corresponds with a drop in my hematocrit.  Hematocrit is the proportion of your blood occupied by your red blood cells.  On my visit to Hopkins on Monday it stood at 32  Normal range for males is over 40 or so, but in my condition, 32 was okay.  However, by this morning it measured 26, and by early evening it had dropped further – below 24.  It essentially means I am very anemic and quite dizzy and lightheaded when I stand up.  The concern is that I may have another GI bleed.  (I tried to convince the nurses today’s drop was due to the 15 or so tubes of blood they took out of me – but they weren’t buying it.)  By tonight, my levels had dropped to 20.

Events:  Woke up this morning determined to get onto the next phase of my treatment.  My body had other ideas.  I was dizzy and short of breath.  I suspected my hematocrit had dropped, and as noted above, it had. We arrived at Hopkins at noon as scheduled and as always they were amazingly organized and ready for me.  However when I told them how I felt, it started a flurry of activity. Extra blood draws, a visit by the resident and the attending.  Still, we were on track to start my test dose of the chemotherapy drug Busulfan tonight.   That plan came to a halt when I continued to feel dizzy and my hematocrit kept dropping. 

  In an attempt to figure out if I do have a GI bleed they threaded a tube through my nose, down my throat and into my stomach. (I don’t recommend it.)  That turned up no good answers about any internal bleed, but the process did manage to start a nose bleed which has not yet abated.  It may mean the ENT guys get to come see me in the wee hours of the morning.  Meantime the tube has to stay in for the night so they can continue to check every three hours for any stomach bleeding. And they’ll keep checking my hematocrit levels every four hours.  So it won’t be a restful night. 

  They’ve also given me platelets and blood – and I suspect that may continue overnight as well.  

  So a very bumpy start to what we thought would be a routine beginning to a transplant next Tuesday.   Our doctor has decided that we can’t move forward now until we figure out what’s going on – so the transplant will be put off at least a few days.  It means putting a brake on wheels already in motion – our Johns Hopkins transplant coordinator must notify the National Marrow Donor Program, which has to notify the donor center, which has to notify the donor.  We’re just hopeful they can all start rolling again as soon as we can. 

Comments:  On the positive side we were lucky enough to get one of the larger corner rooms on the transplant wing – a little extra room is nice.  Lisa has promised me when this is all over we will head to Hawaii and I can once again own a convertible sports car (my old one gave way to a Minivan when the kids came.)  So to give me extra incentive she commissioned sister-in-law Michelle Stark to put together two large posters – one a beautiful Maui sunset (from a picture Lisa and I took when we were there eons ago), and the other a beautiful silver Porsche!  They are now up in my room – along with pictures of the kids.  Also – for the first time we’ve decided we need our own refrigerator – so Lisa hauled up a mini-fridge, it was blessed by the Hopkins engineers, and we plugged it in.  It now holds my stash of Gatorade and Boost.  

  So we are settled in for whatever lies ahead.  Our hope obviously is to get  this bump in the road straightened out and move on without much delay.

Thanks so much for traveling with us.

Best,

-Bruce

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15 Responses to “”

  1. Judy and Larry Says:

    We are so sorry for this bump in the road and hope that you will have straight-aways from here on out. We are thinking of you.
    Judy and Larry

  2. Art Ulene Says:

    Hey, Bruce….. Does that convertible have a back seat? Save one for me.

  3. Margot Mahoney Says:

    sorry about the bumpy start – ready to drive the bulldozer myself to smooth out those bumps. Hang in there – as Milton wrote in 1634 “Was I deceiv’d, or did a sable cloud Turn forth her silver lining on the night?” the room, the trip, the car…there are good days ahead.

  4. Lynn Oliver Says:

    The words that come to mind are not fit for a public blog.

    OK, voting for the removal of the NG tube, and a straighter road for the Porsche.

    Traveling with you…
    love,
    Lynn

  5. Esperanza Says:

    ESPERANZA! LOVE!

  6. Eileen Breslin Says:

    Bill and I are reading this with expletives in mind…but know that the silver porsche and warm ocean breezes are in store for you sooner than later. Illegetimi non carborundum! We’re pulling for you, Bruce. love Eileen and Bill

  7. Leslie Singman and Family Says:

    Hoping for some smoother road soon so you can get started on your path to being well. And looking forward to when we all can take turns riding in that car! 🙂

  8. bob price Says:

    bruce, where do I get it line to sign up for my car ride—better yet, naw, you don’t want us with you in Hawaii. But we are with you on this trip !! All the way….all of us. Praying, pulling & pushing to get you through & on the other side of all this. The hell with building charecter-you’ve got enough. all our thoughts, prayers , love & wishes are with you. bob

  9. Catherine Says:

    I read your blog religiously and share your ups and downs. I felt my heart drop on this one but am amazed that you keep eyes on the prize at all times. Hoping for a better day for you.

    Love,
    Catherine

  10. Charlie Dan Says:

    I bet it was tempting fate with all those “9.5”s that did it!

    Kidding aside, I hope this doesn’t throw a kink into the donation process.

    Feel better!

  11. Sheryl Stolberg Says:

    Vroom! Vroom! That’s the sound of the Porsche you will be driving soon.
    Love you,
    Sheryl

  12. Gail Lehmann Says:

    BUMMER, but we know you will weather this storm as you have others in the past. Hang in there!!
    Love,
    Gail & Mark

  13. Judie Davidson Says:

    Hang in there, Moose.

  14. Jackie J Says:

    Hi Bruce
    I just returned from spending a wonderful evening with your kids. Ethan taught me Palace and we had a deep discussion about the World Series. Rachel filled me in on doings at G D S and all the sleep she got at the lock-in Great kids. You should be so proud!
    Best, best, best wishes
    Jackie

  15. courtney =) Says:

    hi bruce,

    i confess that i have not been following the blog as closely i had been (i blame it on too much school and research work). i am catching up on the week’s entries today, and i find your strength and resilience immensely inspiring…and am absolutely amazed that even through all the trauma, you still manage to keep us informed and well-educated on your experiences!

    still cheering for you from champaign-urbana…but looks like i need to cheer louder for you!!! GO BRUCE!!!!

    wishing you all the best,
    courtney =)

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