Tuesday, April 24, 2018

Results; no cancer was discerned in the CT Scan images.

I won't be released to "maintenance" treatment, however, until I have no lingering side effects, which have been identified as:

Impared executive function (impared learning and focus), which we will address with 30 minutes of uninterrupted book-reading per day followed by writing a summary of exactly 3 sentences. I managed 27 minutes of solid reading before peeking at the timer. (Thanks Tim M. for Ron Chernow's Grant biography!)

Gastro distress. I will stop my antiviral to see if it has been an irritant. I will cut my milk consumption and focus on lactaid and Kefir when I do. Also will do pre-biotic soluble fiber (oats, citrucel) followed by probiotic fermented foods (sauerkraut, kimchi, kefir).

Chemo is generally hard on the GI tract, and the effects can especially linger in the fine structures of the intestines (and the particular digestive processes that happen there).

IGR and IRR are things (enzymes?) That are produced by gut lymphocytes that keep down bad bacteria in the gut. The problem can be that the bad bacteria get entrenched in the interval where the BEAM chemo has wiped out all lymph cells. Sometimes the good bacteria naturally succeed in recolonizing, but sometimes a special (non absorbable) antibiotic is used to knock out the bad gut colonies to clear a spot for good recolonizing.

Ear canal pain. This may be scar tissue in my right neck (where the lymphoma began and was most present) messing up my right eustachian tube. My right ear hurt like crazy on my recent airline flight--recalling the pain that all kids risk when flying--and it still hurts occasionally if touched wrong. We will begin with heat treatment---funny because that's exactly the treatment I tried for a month a year ago hoping my cancer was just a matter of drainage!

Monday, April 23, 2018

Am sipping a big jug of salty iodine contrast in advance of my CT Scan. This scan's intent is to show remission.

Out the door at 6:58am I drove myself and Waze worked the backstreets hard, resulting in 30 minutes spot-to-spot (it is 23 minutes off peak and 45 at rush hour)

I got a little bit emotional in the parking garage, feeling a wave of memories--arrivals and departures before so many "big" treatments.

The 4th Floor of the Shapiro Clinical building is Radiology and I think I have been here for 1 of everything they offer except a mammogram: PET, MRI and CT (ok I think they offer sonograms, but mine were down in the Emergency Department).

This is like a 1 year anniversary of my journey's start. You may recall that when, in late May 2017, my PCP asked "when did you first notice you lump?" I picked the best disaster date I could think of, April 20, 2017, as the day I noticed my neck lump.

April 20 is the shared anniversary of Hitler's birthday, Columbine, and Deepwater Horizon, and the Ides of March had seemed too long to have been between noticing the lump and finding a doctor. The truth probably lies between the two. April 15 could have been a good choice too.

(I am pretty sure I learned Hitler's birthday from 'Hogan's Heroes." Thanks TV!)

It has been strange coming to BIDMC without an overcoat, too, since my main visits ran October-January.

If everything is good today, I will find out tomorrow, and expect to be told what happens next. Six months ago the idea was I would go back to the more laid back Harvard Vanguard ocology outpatient office in Fenway, probably for maintenance immunotherapy (periodic Rituxan). 

More Tomorrow!



Monday, April 16, 2018


I wrote this to a friend and thought I'd copy it here:

At this point the main "tell" is just that my head hair is 1/4" long, revealing skull lumps that a phrenologist would go nuts over--pretty sure I've got the High Criminality lump. 
I'm down to minor immune precautions (a daily antiviral + antibiotic, plus generally avoiding fungus (no gardening) since they don't really have good antifungal tools compared to the whole world of possible funguses--they can treat thrush and that's about it).  I'll get my "infant" immunization shots next Jan/Feb 
They cleared me to travel by air and I hope to get pool & ocean priviledges by June, though my legs are strangely hairless except--double-strangely--the side of my knees. 
The worst part is the antibiotic which makes my gut work erratically and requires that I not get sun (so, yeah, at the beach, between no sun and no hair, I'll look like a naked mole rat or something 
April 22/23 is the next scan (Monday) and clinic visit (Tuesday) and then I'll probably be moved from the care of Beth Israel back to my neighborhood Harvard Vanguard.

Day 1 of Ibrutinib

 I took my first pill of ibrutinib today at 7am.  The pill "wallet" (individual pills in individual "blisters" on a 4-we...