[cancer] Field notes from Cancerland, heading out of town tomorrow edition

Generosity of Spirit

More generosity flows my way. @howardtayler has done some amazing things for me this week, with an able assist from his colorist Travis Walton. Howard teases his work here. Suffice to say this will be public soon, and you can all marvel at Howard’s skill and wit, and understand how impressed and humbled I am by his support.

Airline Mileage

Yesterday’s airline mileage appeal was a bit of a fiasco. I’d not checked into the airline policies for a while, and they have both monetized and restricted mileage transfers between private individual. Thank you so much to everyone who made the effort. Another reader found points.com, which I will be investigating today or tomorrow in hopes of arriving at a more useful solution. In the mean time, the original Big Project has proceeded down another path. I have several other Worthy Projects in mind, so if I can get this straightened out, the appeal will continue, albeit on slightly different terms.

Regorafenib

I’ve been told that my prescription for Regorafenib has been approved. This drug is a specialty pharmacy item, which means it falls outside the usual infrastructure of pharmaceutical benefits. This includes pre-approval letters and me dealing with a designated mail order pharmacy for my medication supply. It also potentially included a whopping co-pay, but it turns out my carrier’s pharmacy plan treated this as simply being at the high end of the formulary. Which is modestly annoying, but that’s same $50 co-pay I have for Celebrex, Levitra, et cetera.

My Next Scan

I have been corresponding with my oncologist about my next CT scan. Those are supposed to be eight weeks apart right now. That’s the minimum spacing recommended for clinical benefit. I also believe there are significant radiation exposure concerns with excessive scanning. In my case, I won’t live long enough to experience that set of problems, but nonetheless the health and safety guidelines exist. The problem is, they want me to have the next CT scan eight weeks after I start taking the Regorafenib. As I am going out of town tomorrow for eleven days — the Nebulas in San Jose, then Rio Hondo in northern New Mexico — I won’t be able to start taking the Regorafenib prior to May 27th at the earliest. And even that date assumes the specialty pharmacy comes through in a timely manner. Which puts me to eleven weeks or longer between CT scans. And creates the situation that we have 3+ weeks of tumor growth prior to the beginning of any hoped-for effects from the Regorafenib. I think we’d have both a growth rate assessment and a clean baseline for evaluation the new medication if we did a scan shortly after May 27th, but that is far too soon per the generic clinical guidelines. No answer yet, but it’s one of the things I’m worrying about.

Tasking All the Things

Remember that big list of mine, of things that need doing before I die? [ jlake.com | LiveJournal ] Well, it’s grown. And we’re doing them. So an enormous amount of administratrivia is happening around Nuevo Rancho Lake. So far, most of the customer service reps, managers and whatnot we’ve dealt with have been very gracious. I feel like Robert DeNiro’s Harry Tuttle in Brazilimdb ] being consumed by paper. Still, progress is being made.

My Coping

I’ve had several people note that I’m pretty cheerful lately. The not very hidden subtext is them wondering why I’m not wailing and rending my garments. Honestly, I’m not sure why I’m not wailing and rending my garments. I suppose because there’s no time for that sort of thing. I don’t have much life left to live, especially in something like normal health, and I have too much to do. Love my child, write my stories, be good to Lisa Costello and Jersey Girl in Portland and mother of the child and my family and my friends and my fans and my co-workers and and and. It is true that my current good nature is a very thin veneer, subject to cracking at even a glancing blow. Beneath that is a bubbling stew of anger, grief and terror, spiced with a catalog of other negative emotions. Nonetheless, here I am. And forward is the only direction for me.

Thank you all for reading, for caring, for reaching out.

17 thoughts on “[cancer] Field notes from Cancerland, heading out of town tomorrow edition

  1. I’m glad you’re making progress on various fronts, Jay. Thinking of you often and sending good vibes your way.

  2. Stevie says:

    Jay, I am so sorry; I have been away, and webless for all practical purposes, and I have only just read your posts.

    I hope that the to do list gets done, but I also very much hope that the additions to the list include some amazing fun things for you and yours to do together.

    Incidentally, vis-a-vis the fundies convinced that all would be well if you just started praying and bought lots of guns, I hope you will be cheered to know that I made a formal complaint about what was supposed to be an expert commentary as we transitted the 100 miles or so of the Suez Canal. No rational person would expect this to entail a lengthy discussion of Moses, and very little else…

  3. IANADoctor, so I may be speaking out of my ass on this on.

    Just as general information, yes, a CT scan delivers a much higher radiation dose to the patient than a standard x-ray (here’s a page with some approximations on dosage). I don’t know all the regulations around CTs, in general there is no upper limit of exposure to the patient for medically necessary imaging (radiation workers, however, have certain yearly limits of exposure).

    Another possible reason for not doing another CT scan is they already know you have tumors that need addressed. They’ll start the therapy they hope to halt their growth. While it might be good to have a scan just before the start of that therapy to measure the direct effects, they might have enough of a model to estimate the growth of the tumors and then can compare that estimate to the next CT scan. They may also be hedging their bets that you’ll need another CT scan later in the year, so why give you the extra exposure now?

    Also, as I’m sure you know, many hospitals have committees that set standards of practice and ethical treatment. It could be that this rule comes from that committee. Intentionally violating those standards of care could result in a revocation of privileges of the doctor.

    Again, not a doctor, could be completely wrong on these things.

Comments are closed.