[Cancer]
[cancer] Another update, mostly concerning the second opinion process
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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Posted: 7:37 am Sat August 18 2012 |
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Comments
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Please make sure you get some rest in that crazy schedule! I’m so glad that your insurance company is covering so much. I don’t know how some people manage–there are some pretty crappy insurance companies out there.
Best of luck!
Jay, from what you’ve said about your oncologist in particular, I can promise she (really they, radiation and surgery oncology too) that they want to get this opinion from Hopkins as much as you do.
There is no territoriality here. No fight-picking. They’ll be psyched to see what Hopkins says. This consult is good for them too- if Hopkins suggests something else, they get to learn a bit more about the cutting, bleeding edge of thought on this cancer.
But, if Hopkins says “you guys have got this, carry on,” well, that feels good for them, too.
Hopkins may have some new symptom management tricks up the sleeve of their collective shiny white coat, so that’s potentially useful, too.
I’m glad your insurer is being helpful about this, too. Safe travels!
Glad that you’re getting a second opinion from a National Comprehensive Cancer Center facility. How wonderful that your insurer is covering the travel!
Everyone on my cancer medical team was comfortable with me getting a second opinion. They didn’t view it as doubting their abilities.
Jay
Really sorry to hear this. I am sure your doctors are cool with you getting another opinion; it’s a win-win strategy as Pelican and Janet have said.
But I do wish you didn’t have to deal with this bloody awful situation…
Stevie
Wild, given my note to you on this last night. Thinking alike. Good choice and reasoning.
I had the same struggle, since I had build up a close relationship with my oncologist.
I ended up writing a personal note explaining myself, and assuring him it was not a matter of trust.
Of course, he knew that. He admitted, he already had talked to Dr. Fisher at Stanford about my case, since I had unexpected complications. 2nd opinions are a good practice.
Your team will understand.
Best of luck.
I’d always get a second opinion in case of serious illnesses (and cancer is as serious as they come) and I’m glad your insurance company is paying for it, including the flight.
I freely admit that I have a personal bias here. I have several cases of severe medical malpractice in my extended family, therefore I am extremely wary of putting my trust in just one doctor’s opinion.
So in short, you’re doing the right thing here. And I’m certain your doctors will understand.