Tuesday, April 28, 2009

appointment moved up

Mom's May 14 appointment with Dr. Meister, the doctor involved with her chemotherapy (and the same gentleman who delivered the grim prognosis), has been moved forward to tomorrow, April 29, at noon. I assume Dr. Meister will be talking about Mom's Temodar regimen; we also plan to ask him questions about other treatment options (David found yet another possibility for Mom), and about whether Sean can bring his dog Maqz (yes, you read that spelling right) to see Mom, given how much she loves that dog. Personally, I wonder how often Maqz will be able to visit: once Mom is immunodepressed by the Temodar, there's a chance that Maqz's presence might be harmful to her. I'm hoping the doctors can allay my fears about this.

We also need a clearer picture of how, exactly, the Temodar treatment is supposed to be scheduled in tandem with the radiotherapy; the latter won't start until after our May 11 talk with Dr. Tonnesen ("TAH-nuh-sen"), the radiology expert who works with Dr. Meister.

We're all hoping that Dr. Meister will have the long-awaited pathology report so that we can finally face the question of what grade the glioma is. We've already been informed, several times, that the tumor is aggressive; on the four-point scale for gliomas, this makes it either a 3 or a 4. If a 4, this puts the prognosis for Mom at around 1-2 years' survival, per the statistical average for people with such a tumor. Only 4% of patients with grade 4 gliomas (also known as glioblastoma multiforme; see here) survive beyond 5 years after the initial diagnosis and "debulking" surgery.* As Dr. Meister had told me, "She will never be cancer-free."

Now, the above quote came during the same conversation in which my aunt had asked whether Mom could be said to have cancer. You'll recall that this is where the whole "cancer versus tumor" confusion arose. Dr. Meister had answered my aunt by saying, "She has a tumor," which could have been either a polite evasion (is that ethical?) or a technical clarification. If the latter, why use the phrase "cancer-free"? I'll be asking Dr. Meister about this during the consultation tomorrow.

I plan to bring along a voice recorder; these docs have made it clear that they don't like taking the time to email people with detailed information, and I certainly won't be able to take notes on paper fast enough to assimilate what I anticipate to be a blizzard of information. The best solution, then, is the voice recorder. We can review it afterward as a family.

I'm hoping that the session will be informative and productive, and I'm sure I'll have more updates after we're done.

SIDE NOTE: Our thanks to the people who have called us (or tried to call us). Mom spoke with Lorraine Swerdloff, a friend from Mom's NALC job; she also spoke with Mrs. Walters of the Washington Korean Women's Society (WKWS, for whom I emceed this past Christmas). Thanks, as well, to Mom's good friend Cheong Burns for delivering flowers and a card, and to WKWS for delivering their gift of flowers as well. Along with all this, we wish to float a humble thank-you to my brother David's company, Hager Sharp, which has offered to treat our family to a dinner-- a very kind gesture, indeed.

My brothers were both over tonight, taking time out of their busy schedules to sit with Mom and my aunt. Thanks, guys, for doing that.

*The difference between the terms "grade" and "stage," when applied to tumors/cancers, is that "grade" refers more to a species of tumor, classified not merely by type but also by level of aggressiveness. "Stage," on the other hand, is a measurement of a given cancer's progress, e.g., stage IV ovarian cancer. Such cancers are usually assigned an earlier stage number, and this number increases over time. Tumors referred to by grades, however, normally maintain the same grade, though this may change over time.

ADDENDUM: Another source, this time from UCLA, on GBM (glioblastoma multiforme) can be found here.


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