Wednesday, July 7, 2010

The Good, The Bad, and the UGLY

I saw the newest members of the team, the neurosurgeon at the House Clinic in L.A. and the radiology oncologist at Cyberknife in Pasadena, last week. Here's what I got out of it---the good, the bad, and the ugly:

The Good

The dr says the person sitting before him does not match (defies) the imaging. He says whatever I'm doing, to keep on doing it! He will focus on treating my symptoms, not my imaging. He was clearly amazed, as the norm is only a downhill slide, not improvement like I'm seeing.

The Bad

  • Nothing we can do to regain the hearing or the facial nerves, although he does encourage me to continue exercising my facial muscles the way I've been doing.
  • I need to see an ophthalmologist regarding the left eye, because of both the cerebral nerve issue and the inflammation of the cornea the chemo drug causes. Also, my vision has deteriorated and needs assessment.
  • I have to do another lumbar puncture (spinal tap). I knew that was coming; standards of care require we repeat it until we have 1 positive or 3 negatives. (So far I've had one negative.)
  • The imaging shows the cancer in the spine is mostly diffuse cells ("zuckerguss"), so Cyberknife is not appropriate at this time. (It should be saved for "salvage treatment" if other treatments are not successful in beating it back.) I will have to undergo radiation to the spine (in sections). In particular, there is a very dangerous issue at T5/T6 that threatens my mobility. (Read: can put me in a wheelchair)
  • The tumor panel in LA is still recommending intrathecal infusion of chemotherapy (typically methotrexate) via an Ommaya reservoir implanted into the brain to deal with the leptomeningeal carcinomatosis and cancer cells in the cerebral spinal fluid. (I instead want to explore a very experimental option.)

The Ugly

The prognosis remains nothing but grim. With treatment, surviving 6 months is the norm. Good thing I've never been mistaken for normal, huh! Statistically, 15% make it one year. So far, no such thing as anyone surviving for years.

Since the cancer I fight is a rarer form, and Leptomeningeal Carcinomatosis is so rare a complication, I did ask how many patients he's treated that have this same diagnosis. Answer: One, and it did not go well. : (

OK, so now there's me! I'm up for pushing the envelope, but I wish the prognosis weren't so grim. But the only antidote for dying is living, so you know what I did after I got all this news -- I went backpacking!

So I'm WAY behind now; I still have to finish the Mt Islip photos and TR and now I have a TON of beautiful pics from climbing Kearsarge Pass out of Onion Valley in the Eastern Sierras this past weekend. So stay tuned -- I'm still here, and I'm still going, and I'll have more posted as soon as I get a break from all these doctor appointments!

Panorama of the view from Kearsarge Pass.
Inyo National Forest to the left; Kings Canyon National Park to the right.

DH admires the view of "the other side": Kearsarge Pinnacles and Kearsarge Lakes. Amazing!

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