Friday, July 1, 2011

Lots to write about but I don't feel like writing

Got back from Canada on Sunday after the memorial service for my father. It's been a rough time.

Monday I was at City of Hope and Wednesday I was at the infusion center for my first rituximab (R) in over 6 months.

Despite only using oral Claritin and Tylenol as pre-medications, I had no reaction to a full dose of 500 mg/M2. The infusion was a non-event, even with the IVIG chaser that kept me in the chair for a total of about eight hours

I cheated a bit and briefly upped my cyclosporin (CSP) back from 75 mg twice a day to 150 mg twice a day, as I believe (with no hard proof) that its antileukemic effects are more apparent at the higher dose, especially in combination with R. That's been my story so far. With that increase comes the increased toxicity, so I added a low dose of a long acting form of nifedipine, a calcium channel blocker, favored by transplant docs and nephrologists for blunting the hypertensive and nephrotoxic side effects of CSP. I am now on three drugs to protect my kidneys and control my BP, and before I started CSP I was on none. It ain't chemo, but it ain't benign either.

I will taper back down on the CSP starting tomorrow, but will repeat the same dance again next week and over all six cycles if my BP and renal function behave.

This is, of course complete voodoo, making up my own idiosyncratic treatment protocols, but there is a raw logic to it, so I am taking the slight risk. Plus it fits with what researchers like: Do an intervention and measure the results.

It is also self diagnosis and treatment, which is a fool errand, but I accept the folly and the responsibility of my acting out my plan. Besides, it is a rather trivial move. The big deal is the use of the rituximab for my >6 cm mesenteric nodes, and preventing my ITP from re-flaring, and really no other reason, just keeping the CLL, the tumor load, in check- dare I say maintenance therapy? That is the real blazing of new territory.

So far, only one day post R, many of my nodes are palpably smaller, but none of them are gone. This is the necessary prerequisite but no guarantee for getting the needed response in the pesky gut nodes. That story will need to wait until my follow up MRI two months after my last cycles. Nevertheless, it will be silly not be happily encouraged by my brisk response to such a gentle treatment.

Though "happy" escapes me these days. That will happen, but I will be patient and fake it for awhile.

I can't wait until Friday night services tomorrow to recite Kaddish for my dad. I promised myself to say that ancient prayer every Sabbath for the next year. It is a son's duty, even for a father who shared with me a healthy skepticism for all things religious. It feels right. It feels healthy, and maybe healing.

Lots of healing going on here.

Lots of healing still needed.

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Blogger Dragon Slayer said...

Lots of grief for a while. Lots of saddness and memories. In time, the pain will be duller, not as sharp as now.
My thoughts and prayers are with you, Patty and your children as you go through yet another journey in life.
See you soon my friend

July 1, 2011 at 6:47 AM  

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