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Jay Lake
Date: 2013-05-10 05:24
Subject: [cancer] Field notes from Cancerland, finding the way forward edition
Security: Public
Tags:cancer, family, friends, health, personal, radiantlisa

I have been going 'splat' emotionally and mentally since receiving the CT report on Tuesday. Sometime yesterday afternoon, I started my bounce back upward. That's just what I do. I'm not irrepressibly optimistic — in fact, I am so pessimistic about all this that it worries some of the people close to me. I'm not immune to depression — I spent years coping with serious clinical depression, including a suicide attempt and hospitalization in my teens. I'm just so aware that every day is a gift, and my ration of days is growing quite, quite short. To waste them being bleak and withdrawn is a betrayal of myself and everyone who loves me. So I find a way forward, because that's what I do.


There have been several extremely significant acts of generosity directed toward me in the past few days. I'm not discussing details yet both because there is some confidentiality involved on the part of others, and because nothing has firmed up so quickly in any case. But I was literally brought to tears at one point yesterday. As I said yesterday on Twitter and Facebook, "Unexpected generosity can break my heart so much faster than any amount of grief. Cancer makes me brittle."

Bizarre Coincidences

I received my terminal diagnosis on Wednesday. On Thursday, the mail brought me a fundraising letter from my hospital asking me if I had included them in my estate planning. I know how data mining works, but I also know how print-and-mail operations work. This is purely a coincidence, but it's a mighty bizarre one. Frankly, it made me laugh.

Forward Planning: Medical Care

This morning, Lisa Costello, Dad and I are going to see my primary care physician to review the progression of liver failure and identify end of life issues we might want to anticipate and plan for. Also another discussion of palliative care and hospice care. After that, we are meeting with the oncological nutritionist to talk about dietary considerations with a failing liver.

More Forward Planning: Disability and End of Life Issues

Tomorrow morning I am getting together with some of my crew to go over the numbers and details on disability planning and end of life planning. This basically means reviewing some of the key items I posted recently [ jlake.com | LiveJournal ]. There is an enormous amount of work to do in fairly short amount of time. Thankfully I have some very loving, dedicated and competent people around me. I will report on this in a lot more detail once some business issues have been ironed out in confidence.

Even More Forward Planning: The Jay Wake

Another generous and capable crew is taking on the task of planning my wake. Because we have no way of knowing in advance if the Regorafenib will be effective in delaying the explosive growth of my numerous tumors, we don't know if I'm dealing with a 3-month horizon of relative good health, or a 6-12 month horizon. So we're going ahead with my living wake. Watch this space soon for more details.

Getting Back to What We Laughingly Call Normal

Per my above comments about going "splat", today I hope to get back to my writing/editing/WRPA schedule. Likewise, I have an ongoing commitment to house paperwork and general simplification which I hope to take up again today. The exception would be if this morning's medical consultations give me some more heavy duty coping challenges.

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User: martianmooncrab
Date: 2013-05-10 18:40 (UTC)
Subject: (no subject)
Mad Jay Beyond Cancerdome... complete with rocking soundtrack. In Hawaiian shirts instead of that tacky leather.

fingers crossed on the Coping, that is essential.
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Elf M. Sternberg
User: elfs
Date: 2013-05-11 02:57 (UTC)
Subject: (no subject)
This all sucks. Still, have to ask, are you having an International Fuck Cancer Day (first weekend in June, if memory severs me right)? 'Cuz that's a pilgrimage I'd make to let you know we care while you're still about.

You and Iain.

Fuck Cancer.
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Fluttering Things: eye
User: moxie_raqs
Date: 2013-05-11 15:04 (UTC)
Subject: (no subject)
Speaking as someone who has been working at hospice for a year:

Talking to hospice sooner rather than later is a good idea. Hospice is for someone with a diagnosis of 6 months or less; palliative care is for anyone with a life-threatening condition. Both can provide a lot of comfort and assistance in the respective stage of the journey. There is often more than one hospice/palliative care in any metropolitan area, so asking medical professionals and local trusted friends for recommendations is also important. I worked for one organization that covered ten counties, and their programs blow others out of the water. So it's good that you're considering it already, and if you would like any insight, I am happy to help in any way I can.

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