Wednesday, July 2, 2008

Nice and easy does it every time

I choose the rooms that I live in with care,
the windows are small and the walls almost bare,
there's only one bed and there's only one prayer;
I listen all night for your step on the stair.
But I know from your eyes
and I know from your smile
that tonight will be fine,
will be fine, will be fine, will be fine
for a while.

Leonard Cohen

The first paragraph of this post is somewhat medical, the second mostly philosophical. You have been forewarned. Today was a better day. Counts are still holding up and headaches and stomach are calming down. Got a ton of Rituxin (1000mg /m2) after a very sedating dose of Benadryl 50 IV push  Slept for hours. Rituxin (Vitamin R to the hematologist) never met a B cell it liked  and since my leukemia is a B cell clone, this mouse derived monoclonal antibody is poison to CLL. It, with an immunosuppressive drug, cyclosporin A, is the magic that helped get me into remission so there would be less  tumor around for my new graft to battle. So I get this massive doses ( almost 3 x  what I got as treatment before) on days +1. +8 and +15. not just to knock back any lingering CLL, but also to control graft versus host (GVH). Wait a minute, you students of immunology say. GVH is mediated by T cells, not B cells. Correct, and that is why Campath, a rat derived  broader spectrum monoclonal antibody which hits both B and T cells is so darn effective against GVH. But B cells play a role as antigen presenters to the big bad T cells, and so the Rituxin may ameliorate some of my GVH. Not too much because the less GVH, the less GVL (graft versus leukemia). It is a narrow bridge we cross.

I wanted to share some wisdom from my friend, Dr Arthur Zimmerman. Today has been a good day, but I am starting on Micafungin (to prevent fungal infections) in anticipation of the upcoming neutropenia (low white blood cell count which puts me at a high risk for unusual infections, similar to an AIDS patient). I may have some less chirper days. And while I refuse to get sick, I accept that there will be some tougher times ahead. Anemia, low platelets, possible diarrhea, mouth sores, and profound fatigue.  Dr Z's advice is to not climb on the roller coaster. Don't get too celebratory over the good days and certainly don't get too down over the bad ones. That takes too much energy! Expect highs and lows. Remember the good times, because you will be coming back to them, but try to stay centered and focused on the long term goal of beating this cancer. That old Zen magic, the middle way again. Let's see how well I do over the next few weeks.


Blogger Unknown said...

Take the middle road (I will remember that when it is my turn at bat). We will have many high roads together after we both kick CLL in the butt.

How is your appetite? Are you counting how many calories you are taking in? How much of your food is hospital prepared vs. family prepared?

Keep up the great spirit and hard work. 98 days to go.

Your CLL Friend
Robert and Family.

July 3, 2008 at 9:05 AM  
Anonymous Anonymous said...


Thanks for the update and Dr Z is spot on! You sounded great on the phone yesterday and w hope your down days are few and far between!

All the best, Russ, Jutta and Erika

July 4, 2008 at 12:29 AM  

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