Monday, June 3, 2013

Q: Where would Mr. Weinberg and Sheik Zayed Be Neighbors?

A: On the campus of Baltimore's Johns Hopkins Hospital, naturally. 

I walked the corridor between Mr. Weinberg's and the Sheik's respective buildings today, several times. I'm at Hopkins for what has now become a two-day visit. The initial purpose was to see if I qualify for any of the drug trials they have going on here. There are at least 3 possibilities, but my eligibility won't be known until later this week. 

While poking around, Dr. Browner (more on her later) noticed a good (actually, bad) amount of fluid in one of my lungs, which is consistent with the coughing and shortness of breath I've felt increasingly over the last two weeks. A CT confirmed it, and tomorrow I get to experience my first "lung tap," which is probably less fun than it sounds.

Dealing with the Hopkins Bureaucracy to arrange this visit was as painful as anything I’ve experienced in any mega-cancer-center. I received a call at noon last Thursday telling me I had 24 hours to provide any “missing records” from the medical history I had sent in over two weeks earlier. Failure to do so would result in my appointment being cancelled. I happened to be in Europe at the time, which they had no way of knowing. Still, I had to call to ask specifically what records were missing. The list included things as obscure as the surgery notes form a lung biopsy in early 2011. Not the biopsy results, which I had already sent, but the report that would read something like this:

Patient was lying unconscious. I inserted a needle and extracted 3 ml of fluid. Patient was then awakened and taken to recovery. See biopsy report for anything meaningful.

Marcie was able to find another 30 or 40 pages of stuff, scan it, and send it to me so I could forward it on to the folks who must live their lives by a checklist:

 ___ Rise from bed
 ___ Pee and/or Poop
 ___ Brush teeth
 ___ Make coffee

Lest you think I’m going to bash Hopkins, let me go back to Dr. Browner. I had an hour with her, at the end of which, she walked me out to the insurance desk, spoke to the clerk, and stayed there until we knew my CT scan was approved. Who does that?

And it turns out, we have a connection to her. One of Marcie’s best friends growing up was named Sheryl Goldstein. Dr. Browner is married to Cheryl’s brother.  She had already displayed her amazing level of care before we figured that out, so I don’t think it was one of those proverbial “I’m going to take extra-good care of my sister-in-law’s friend’s husband” things.

This post is dedicated, with much love, to Aunt Ilene and Uncle Eliot, who have opened up their home to me, fed me, laundered my clothes, driven me to and from Hopkins, and generally treated me like a lifelong member of the family, even though it’s only been 20 years (plus 4 days). I cannot thank you enough for all you have done for me and for my family!



1 comment:

  1. We are all thinking about you Myles and praying that you get good news about the fluid. We love you!
    Erin (and the rest of the crazy Tasman's)

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