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Jay Lake
Date: 2012-08-22 04:31
Subject: [cancer] The medical and life logistics of treatment
Security: Public
Tags:cancer, child, family, friends, health, personal, work
For those just tuning into our program, I've had Stage IV colon cancer for four and a half years, since April of 2008. As of last week, I was diagnosed with my third metastasis. In other words, this is my fourth cancer presentation in those four and a half years. Each metastatic recurrence further depresses my life expectancy (this is a statistical observation, not a personal prognosis), and increases the odds of further metastases.

In other words, I've been doing this for a while, and I'm quite likely to be doing it again in the next year or so, after I've passed through the forthcoming round of chemotherapy and surgery.

Like anything one spends time practicing, I've become good at being a cancer patient. I sometimes joke that I've gone pro. By the time I finish the upcoming chemotherapy course, I will have spent 18 out of the previous 40 months on chemotherapy, with another 4 of those months spent in surgical recovery. I figure if I spend more than 50% of my time being a cancer patient over the course of years, that qualifies me as pro. Not even counting all the bloodwork and CT scans and whatnot during the off-seasons.

It's confusing and overwhelming and baffling. The current round also has me seriously evaluating disability and end-of-life issues. I'm not at elevated risk for those right now, but my increased likelihood of recurrence means I need to understand my options going forward.

In no particular order, here are some of the life and medical logistics I have been dealing with:
  • Arranging sick leave, FMLA status and vacation time at work

  • Following up with my oncologist's office to confirm the FMLA paperwork is being properly filled out and submitted

  • Discussing short term and long term disability plans with my employer's HR

  • Investigating public benefits options should that become necessary, done by delegation to Dad

  • Speaking to my insurance carrier about cancer case management and coverage, specifically including the second opinion benefit

  • Arranging a complex series of interdependent appointments at two different hospital systems (tests and treatments at OHSU, my home hospital, and second opinions at Johns Hopkins; this has involved several dozen phone calls so far, all of which I have documented in call notes)

  • Getting my teeth cleaned, my eyes checked and a general physical with metabolic screenings for diabetes, cholesterol levels, etc., while I'm still in good baseline health

  • Stepping up my appointment schedule with my therapist

  • Seeing my attorney about literary executorship, estate planning, end of life and power of attorney issues (and doing this pre-chemo while I am still in an unchallenged state of mental and legal competence)

  • Mapping out my likely available writing time through this treatment cycle and beyond

  • Making priority decisions about which projects to pursue, which projects to seek collaborators to work with on, and which to shelve

  • Working out my chemo care schedule, though this is largely being done by delegation to a dear friend

  • Making physical arrangements in my house to support my forthcoming diminished capacity

  • Making care and housekeeping arrangements for the same reason

  • Arranging homework helpers and other support for [info]the_child

  • Spending time with her, both in person and by remote communication while we're both traveling

  • Focusing on friends, family and loved ones while I have the energy and clarity to speak my mind

  • Arranging my traditional pre-treatment party

  • Documenting this experience in hopes of helping others

  • Telling people I love them

  • Letting go

I'm pretty sure I left a bunch of things off this list, but that's just a glimpse of what I've been dealing with in the week since the diagnosis came down. Being a cancer patient is hard and complicated work, before, during and after.

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Reynardo the Red
User: reynardo
Date: 2012-08-22 13:31 (UTC)
Subject: (no subject)
Documenting this experience in hopes of helping others

Telling people I love them

Letting go

Don't forget "Letting people tell you they love you - but only if you're ok with that."

And by "love" I include "appreciate", "have learned from", "consider I owe you for your openness and information" and "when you go, there will be small but significant jay-shaped hole in my Universe."
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User: deborahjross
Date: 2012-08-22 18:45 (UTC)
Subject: (no subject)
Oh, Jay. This is so hard. I'm in awe of your courage and honesty.

I'm holding my friend as she goes through her 3rd round (she's 3 1/2 years post diagnosis), actually 4th as the first chemo drug on the 3rd round didn't work. Treatment is palliative at this point. The name of the game is extending quality of life. So she still goes tango dancing and horse camping in the mountains while she can.
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Kari Sperring
User: la_marquise_de_
Date: 2012-08-22 18:47 (UTC)
Subject: (no subject)
Can I bring you anything from the UK?
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User: tyellas
Date: 2012-08-22 20:51 (UTC)
Subject: (no subject)
-loving & respectful hug from an acquaintance who just might know you better if our lives were different-
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