[cancer] Field notes from Cancerland, new week edition

Working over the weekend

I received emails from the NIH doctors at several times over the weekend, including 11 pm Friday evening and 9 pm Sunday evening, as well as a few others along the way. All of which I responded to, in as much detail as possible. This team is very focused on me right now. That’s both gratifying and slightly unnerving. I’m not complaining, not in the slightest. Just pleased at the level of focus.

This week’s activities

This week’s activities are as yet almost entirely unknown. My case is on the agenda for a midday team meeting of the group I want to work with. I’ll get the official go-ahead this afternoon, presumably. There are still several decision points ahead even if everything is green-lighted. Once the go-ahead happens, I’ll formally enroll in the trial, and they’ll schedule a variety of follow-ups and pre-tests and whatnot. If the current proposes plan holds, I’ll be flying home Saturday the 11th. Subject to change, of course. Everything is subject to change. Like I said before, it’s a bit akin to dancing on ice floes.

Mental and emotional focus

Being so very busy has kept me mentally and emotionally focused. Also, being two months off the Regorafenib helps. But underneath it all, not very far underneath, is a great deal of fear and panic and depression. It’s good to be so very distracted, but I know that further down the tunnel, there is deeper darkness yet to come.


I want to thank everyone for their various comments on logistics. You’ve been very helpful, both with direct suggestions and for clarifying our thoughts. A few notes to make.

One, the car sharing availability and terms around here really don’t work for our needs. It’s a terrific idea that just doesn’t match up well to what we’re doing here.

Two, given what I’m going to be doing, using the bus service or the Metro rail is going to be very challenging. I’m a terminal cancer patient with impaired mobility and very poor cold tolerance. Standing for long periods of time is difficult. Any treatments I undergo at NIH are going to make me a lot more sick, more weak and more vulnerable to infection and other problems. That’s not a good mix for public transit, especially in the winter.

Three, our housing needs are somewhat specific. Lisa Costello needs to be able to work full time from her accommodations. She, Dad and I all need a certain amount of space and level amenities. So couch surfing, RVs, and most b-and-b solutions don’t work well for us there either.


Per above, housing is our greatest out-of-pocket cost. While NIH does provide some free housing for patient caregivers during in-patient stays, space is limited and offered on a first-come, first-serve basis. The inherent instability of my medical schedule means we won’t have much lead time when we need to book space. So we’re very unlikely to be able to use NIH’s housing. That drives us toward any of several solutions, all of which cost close to $200 per day or more. Yes, this is going to be expensive. At dinner last night we were discussing the possibility of additional fund raising. Once I know what I’m actually doing, and what I can disclose about it (this is some pretty cutting edge science, I’ll tell you that), I’ll bring this topic up. For now, suffice to say there’s a lot going on.

3 thoughts on “[cancer] Field notes from Cancerland, new week edition

  1. skiffy_grrl says:

    If you have qualified for mobility assistance in your home county, WMATA can offer you up to 21 days on Metro Access, a shared ride van service. Check with WMATA to see if you can qualify while you’re here.

  2. Matte Lozenge says:

    Stay warm, Jay! Stay inside.

  3. Asakiyume says:

    very happy to see things moving forward with this.

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