[Cancer]
[cancer] Field notes from Cancerland, Friday edition
Meeting with my primary care provider
I was recently exchanging emails with my primary care provider. I’d asked them if I should come in for my more-or-less annual cholesterol screening now, while I’m in the relatively healthy trough between chemo series. They replied that it wasn’t worth doing, as monitoring my cholesterol levels would neither improve my quality of life nor extend it.
I really had to think about that one. Just another affirmation that while I have not yet been given a terminal diagnosis, I am on a terminal path. We’re no longer worrying about my long-term heart health.
My primary care provider also suggested I come see them to talk about palliative care and hospice. Their point was while I certainly didn’t need that now, it would be better to understand my options and plan ahead than try to deal with this in the moment of maximum stress. As this has been my general view of forward planning for late life, end-of-life and post-mortem issues, I agreed. We’re meeting near the end of the month.
That will be a sobering consultation.
This is my reality now, planning for the manner of my death. Not the overwhelming reality, or even a majority of it, but still a hard nugget at the center of my world.
The genomic sequencing
The genomic sequencing has been done, and we’re now wrangling with the lab about how many copies of the data to release. They are grudgingly agreeing to produce a second copy, at my cost, and are flatly refusing to produce more. Which seems sort of strange, and extremely patient-unfriendly. The issue from my perspective is that the data comes encrypted on a high-capacity hard drive. It’s not clear to me that I’ll be able to make copies myself, depending on the nature and degree of the encryption.
I may be putting out a call for some help from a white hat hacker soon, on this one. Ideally someone in the Portland area, so I don’t have to keep mailing this thing around, once I have received it.
At any rate, the data now exists. Our next step is to get it off to the analysis group.
Coping
I continue to cope in various ways. (See below.) Mostly I’m keeping it together pretty well. This has surprised my therapist, considerably I think. If my family and friends are likewise surprised, they have kept it to themselves. But who has time to melt down, or slip into a black depression? Either of which would be reasonable responses to the unreasonable stresses in my life. But life is too short. Figuratively and literally.
Archives
Sunday we are having an archive party at my house. We will be boxing up and prepping for shipment everything that needs to be sent to Lynne Thomas the Northern Illinois University Special Collections. There will also be cookery, as Jersey Girl in Portland has threatened a bacon explosion. Meanwhile, Lisa Costello and I stumbled upon Benesse whilst out and about yesterday, and came home with several high end flavored olive oils to go with the bread and cheese I will be providing that day. So a small, artery-clogging feast will accompany our labors on the part of literary posterity.
Tattoos
Speaking of coping, I got three new tattoos yesterday. The work was done by Spike Palmer at Sea Tramp Tattoo in SE Portland.
Me and Spike, setting up
The man at work
The results
That’s one new zodiacal cancer symbol, to commemorate the fifth surgery I just had, and two outlined biohazard symbols, one to commemorate the chemo series we just broke off halfway finished, and one to commemorate the reduced chemo series I will be embarking on in March.
We’re also discussing the possibility of a modest tattoo on my upper left chest marking my status as a permanent cancer patient. I didn’t want to deal with it all at once, though. Ah, pain. (Though to be honest, I would describe tattooing as extreme discomfort rather than actual pain.)
Making a spectacle of my death
My dear friend John Pitts recently described me as making a spectacle of my death. I was mildly offended by this at first, but then I realized he meant this in a literal sense, almost a Roman sense, rather than in the contemporary pejorative use of that phrase. And he’s right. I’ve been public about this cancer since the second day, even before we knew it was cancer. Five years later, I have lived out this disease and its discontents in a very public forum. I can do no less with the process of my death and dying.
I do it because it helps. It helps me cope, to spell things out clearly, to try to wipe away the fears and assumptions in cold, objective words. It helps others, demonstrably so from the mail I receive on a far too regular basis. It demystifies the processes of cancer just a little more, for those who come across my blogging. And I have to believe I’m making the world a little bit better place for this.
As I said to John, one of my great gifts is story telling. If I can’t tell the story of this cancer, who can? It’s perhaps even the case that my entire fiction career was little more than preparation for my career as a cancer patient and cancer blogger.
I can’t say for sure about any of that. What I can say is that I embrace John’s comment. Yes, this is spectacle. Whether you are amused, edified or horrified, if you are reading this, you are participating. I’ve stripped away the confining veils of privacy and common decency in favor of as much honesty as I can muster. And so many of you have paid me back in kind, as well as paying it forward.
Thank you for coming along this far. I hope you can follow the rest of the journey without too much heartbreak, and I hope this story makes everyone’s process a little easier when they or their loved ones approach this dark door I am on the step of.
Photos © 2013, Lisa Costello
This work by Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
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Posted: 6:44 am Fri February 15 2013 |
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Comments
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Re the genome sequence copies… I find it really disturbing that you cannot have open access to your own sequence once it is obtained. I understand companies need to make a return on their investments, but it’s discouraging that they can hold hostage what came from your cells.
{{{hugs}}} you are brave and strong and I am proud to know you.
you had me at “bacon explosion”
Re: copies and access. Yeah, super unfriendly. How nice of them to understand /sarcasm.
Re: palliative/hospice planning. I can empathically affirm that this is a good idea. Because, honestly, there may be surprises ahead as well as stress and preparation really helps when they happen.
no more cholesterol screenings? aw, sugar…. can haz as much bacon as can eat?
though it is painful to read – I understand how difficult (at the VERY least) it must be for you … I’m glad you share – by sharing maybe us (your cyber audience) can learn, b/c no doubt all of us will be on the same path one day. Not the exact one, but the one from which there is no return certainly.
It seems like the sequencing company needs to at least be a bit more forthcoming about the data that they will be releasing to you. At minimum, you need to know the approximate size, what format it is in, and the metadata that is necessary for interpreting it. Also, aside from only releasing one copy to you, are there additional restrictions on YOUR usage of the data. In terms of making it available to others, the most logical thing that comes to mind is just encrypting it and dumping it on a secure FTP (or similar) site somewhere. If you’re working with any academic teams who are interested in your data, they might be a better option than trying to shop around for the hosting yourself.
The problem with the FTP solution is that we’re talking about several hundred GB of data. I do expect to know most of the rest of this, I just don’t know it yet. These are the perils of being patient zero in a new process.
Too much heartbreak? If this goes on like you describe, all of us who admire you will have a broken heart. And lay you down with a will.
Well, since you’re one of those weird science fiction writers. OF COURSE you’d use the genomic data as the frist step in creating a CLONE ARMY of Jay Lakes and then use the marching hordes to CONQUER THE WORLD. Because that’s what all those skiffy guys really want to do.
Jay Lake, Super-Villain. Hmm, I don’t know, I think the idea has a certain charm.
Question/observation regarding the sequencing data: Isn’t that the result of “work for hire” and therefore owned by you, and therefore, if you want it in un-encrypted form for your use…..? IANAL….. But if Disney can pull nonsense like this and people are Cor- Oh, Corporations are people, well….
I suspect this is in part a HIPAA issue, though no one has said those words to me. Shipping the data to me via UPS on unencrypted drives is probably undue exposure with respect to HIPAA privacy rules, which are stringent as hell with draconian penalties for violation.
The funny thing about sequence data is that because the sequencing methods are patented the sequencing company retains proprietary right to the sequence itself. This keeps customers from taking the sequence and analyzing it for other purposes or by other services. It’s kind of messed up. The same applies to Brca1/2 breast cancer screens. It’s your sequence but it takes big business to extract it and they are for profit.
Ms. michelle – *This* *Must* *Change*.