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Jay Lake
Date: 2012-08-18 07:37
Subject: [cancer] Another update, mostly concerning the second opinion process
Security: Public
Tags:baltimore, cancer, chicago, conventions, family, health, personal, travel
I have a second opinion appointment at Johns Hopkins Kimmel Cancer Center in Baltimore on Friday, September 7th. This bumps my appointments here in Portland for the port implant surgery and chemotherapy back by a week, with the first chemo now falling on September 14th.

My insurance carrier is fully supporting this effort, including underwriting my travel expenses to go to Baltimore. So kudos to them, for doing something right for me without reservation. (I understand why they're doing it — not altruism, but rather enlightened self-interest.) I did discuss with a cancer case manager which of a number of hospitals to choose. They felt Johns Hopkins was as strong as other choices for my kind of cancer. This lets me visit Lisa Costello as well as my brother, who lives in the Washington, DC area. The selection was obvious.

I spent much of my afternoon yesterday arranging the appointment at Johns Hopkins, then re-arranging a number of other appointments at OHSU here in Portland. I also had to place a number of calls to ensure that records were properly transferred and so forth, a process that will probably continue into next week. September 7th is later than I would have hoped for, but still within a window of reasonability for me.

All in all, I spent several hours yesterday on an absurd amount of logistical planning. Which was both necessary and tedious. On the plus side, this kept me busy.

I continue to struggle a bit emotionally and psychologically with even asking for the second opinion. I know this is faulty thinking, I really need to do this as my life is quite literally on the line here, but I also feel like I'm picking a fight with my doctors. I will get over it, but the thought is rolling around in my head.

In the mean time, I am keeping next week's trip to Omaha on the schedule as planned. Likewise my trip on August 29th to Chicago for Worldcon. None of those plans are materially changed. If you're expecting to see me in Chicago, you still will.

However, instead of flying home on September 3rd then turning around and flying back to Baltimore on September 6th, I am simply heading straight from Chicago to Baltimore on the 3rd. I will then fly home over the weekend following the oncology appointment.

Of course, the treatment plan scheduled for my return is potentially subject to change based on a significantly varying second opinion from Johns Hopkins. If so, I will work with my oncology clinic to revisit all the appointments set for the week of September 9th.

In the mean time, we are laying all the groundwork for another chemo series. Jen Scholes is assembling the calendar for my primary caregivers. Other friends are stepping up in many other ways. As always, there will be numerous roles to fill, including transporting me to/from chemo and other appointments, visiting me when I'm not in chemo, helping me with household chores and shopping, and perhaps most importantly, everyone directly involved helping one another cope with this huge, vile mess.

Schedule recap, updated to new information:

8/20 - Fly to Omaha, business trip as planned
8/25 - Fly back from Omaha
8/29 - Fly to Chicago, Worldcon as planned
9/3 - Fly to Baltimore
9/4 - Pre-operative telephone consultation
9/7 - Appointment at Johns Hopkins
9/9 - Fly back to Portland
Week of 9/10 - Follow-up CT scan
9/11 - Port implant surgery, probably with 6:00 am (ish) reporting time for me, to be confirmed
9/14 - First chemo session with FOLFOX+, through Sunday 9/16
9/28 - Second chemo session, through Sunday 9/3
Four additional sessions of FOLFOX+, roughly through the end of November
Followup CT scan in early December
Surgery in late December or early January
Six sessions of FOLFOX+, roughly February through April

Again and as always, one foot in front of the other.

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User: yourbob
Date: 2012-08-18 15:09 (UTC)
Subject: (no subject)
I'm sorry your travels won't bring us into contact unless I make it up there. I continue to wish you the best possible, think of you, and send you virtual hugs.

As you know, Jay*, it's okay to feel bad about your getting a second opinion. But I bet your doctors don't feel in any way awkward. They understand it's your life that their dealing with, and if they are any good will be hoping with you that there's something they didn't think of, while remaining within their confidence level.</p>

Enjoy. And know that many of us out here care, even the quiet ones.

* being Bob, I've always enjoyed that phrase.

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User: madrobins
Date: 2012-08-18 15:20 (UTC)
Subject: (no subject)
As always, if there's anything your far flung friends can do (spoons, hats, tattoo cozies) to help and support you, you have only to ask. But you knew that, right?
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Kari Sperring
User: la_marquise_de_
Date: 2012-08-18 16:26 (UTC)
Subject: (no subject)
Seeking a 2nd opinion is something many doctors expcet patients to do. They won't be offended or hurt: it's part of the process.
I am a silly distance away, but as ever, if I can do anything, just ask.
Kari xx
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User: torreybird
Date: 2012-08-18 16:47 (UTC)
Subject: (no subject)
I'd expect your doctors to be excited for the additional opinions.

When a writer wants to make the best book possible, she must learn to appreciate the feedback of editors. When a doctor wants to make the healthiest Jay possible, they must school themselves to appreciate second opinions--for expanding their knowledge, for validating their conclusions, for expanding their professional network. They're all mucking about, at some level, and each of them worries that they may have missed something.

You're not picking a fight, you're going above and beyond to help them make the healthiest Jay possible. Even if it means bringing tough feedback to the team that supports you.

They should appreciate this extraordinary cross-country effort, not fight it. If they fight it, that gives you other information.

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User: klwilliams
Date: 2012-08-18 17:00 (UTC)
Subject: (no subject)
Doctors have thick skins (how could they not, and do the job they do?), and they understand how odd the human body is. A second opinion may give them new medical knowledge as well as helping you, so it's a win.

Hang in there. I know this sucks so bad.
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User: cathshaffer
Date: 2012-08-18 17:15 (UTC)
Subject: (no subject)
I think if you asked your doctors how they felt, they would heartily encourage you to seek a second opinion and would take an academic interest in the result. Hang in there. What a harrowing schedule.
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User: dichroic
Date: 2012-08-18 18:58 (UTC)
Subject: (no subject)
Enlightened self-interest is really a good way to run a life, a company or even a planet. Glad your insurance company sees this.

OHSU is an excellent hospital, I know (my BIL went to med school there) but it's still good that you're going to Johns Hopkins. Even if your particular doctor were one of the best in the world, there's a chance that someone else at such a large research institution might happen to have encountered a different set of research or experiments.
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User: fledgist
Date: 2012-08-19 01:16 (UTC)
Subject: (no subject)
Keep fingers and toes crossed, and hope for the best.

Edited at 2012-08-19 01:16 am (UTC)
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