Medical: From Soup Ladle to Teaspoon

In the olden days, or in Cuba, where doctors actually touch patients, I'm sure that it would have sufficed to say that chemo is working if anybody would simply apply the "five-fingered caliper" to my neck mass and note that it has shrunk thusly:

• Pre Chemo: size of a Soup Ladle (late July)
• Early August Chemo 1
• After Chemo 1: size of a Serving Spoon (mid August)
• Early September Chemo 2
• After Chemo 2: roughly a Tablespoon (mid September)
• Early October Chemo 3
• After Chemo 2: roughly a Teaspoon (mid October (now))

For some patients, their lymphomas might have shrunk to un-feelable (which should be a word), but the Ocologist isn't worried: that you can still clearly feel the lump results some combination of:

1. natural variability
2. that mine started out bigger-than-normal (because we delayed hoping to prove it was limited to Stage 1)
3. Some of what I'm feeling is probably extra tissue that had been stretched out and is having trouble retracting
4. Some may be scar tissue from the biopsy

I have a PET scan at Beth Israel Deaconess Medical Center (BIDMC) tomorrow at 8:30am.  How anyone with cancer keeps a full-time job is beyond me (I'm 80% time).  I want to start a medical plan for working people that uses fancy machines "after hours" *and* would be cheaper because it was using hours when the expensive machines would sit idle.

Meanwhile, yes, this being 10 days since my Oct 4th/5th Chemo Days, I'm doing well.

The "blahs" cleared up around Tuesday last week (which meant the blahs lasted about 2 days longer than in the first two Rituxan/Bendamustine cycles).  The Oncologist did warn that as time goes on, the side effect may worsen as my white blood count gets "worn down" alongside the Mantle Cells (the whole Leukemia-Lymphoma family of cancers is a family precisely because the blood and immune systems are cousins/siblings descended from the same stem cells).

Anyway, I'm doing well, and this week has "non treatment" visits: the PET (Monday) and a Meet the Inpatient Doctor(Tuesday) in which I meet the doctor at BIDMC in whose care I will be for the next 3 rounds of Chemo, which require weekend hospitalization.

I'd like to figure out a way to have friends visit me during my weekend captivity, either by video con, or by smuggling me out to the Museum of Fine Arts or Isabella Stuart Gardener Museum.

The Early Nov*, Early Dec, and "New Years" in-patient hospitalizations are for BIDMC's convenience (not worrying about me missing appointments) and their billing (so they can officially bill me as an inpatient in a semi-private room). As a hospital they can only charge for inpatients, so I have to be an inpatient.

Which is to say, there's no medical necessity for me actually being at BIDMC in my room:

• Infusions every 12 hours.
• Sleep between each days "late" infusion and the next day's "early" one
• Waste 10 hours Sat & Sun between the early infusion and the late infusion

During those 10 daylight hours, I'd prefer to sneak out  rather than spend time in a semi-private room with "the other guy's" visitors, or listening to the other guy's choice of art/music/literature/news/nonsense

Email me if you're in Boston  Early Nov, Early Dec, and "New Years" and you'd like to be on the escape-mission team. It will probably not involve body doubles or laundry hampers.

*
Early Nov might actually be Oct 28/29 or Nov 4/5
Early Dec might actually be Thanksgiving Sat/Sun or Dec 2/3
New Years might actually be in the week between Xmas and New Years