December 27, 1999Dear Family and Friends,
Can you stand reading one more holiday letter? This is the first one I've ever written. I missed the "deadline" due to the enormous project I had undertaken of making pajamas for everyone in the family for "the first present of Christmas" - to be given out on Christmas Eve. (Can you believe I still got behind schedule, even with hardly working at all?) Everyone got to pick out their own material, which, according to the pattern had two coordinating fabrics, one for the top and another for the bottom. I knew I was in trouble when the material Devin picked out was a Halloween print with a black background and psychedelic cats. He finally settled on brown game animals romping through a dark green forest on a tan background, with a coordinating green and tan plaid. The PJs came out very cute, but since certain members of the family refused to have their pictures taken in them, you are left to your own imagination.
I was also hoping to have more definitive results of my health by now. I have been in a holding pattern for several months. I probably hold the record for having the most MRI's and spectroscopies (similar to an MRI but with the capability of analyzing the chemical composition of tissue in question to determine whether it is tumor) in the least amount of time. I have a small spot they have been following which has doubled in size over several months, although has remained stable over five weeks. The results of the MRI and spectroscopy have been inconclusive - could be tumor, could be scar tissue. The "brain tumor board" (No this is not a board citizens can volunteer to be on! Rather, it's a group of brain tumor experts at a particular hospital who meets regularly to determine treatment recommendations.) decided that it was too small and too unclear what it was to warrant doing surgery or even a biopsy at this point. They recommended continuing chemo (I'm on Temodar, recently approved in the US, which has relatively few side effects. Also high doses of Tamoxifen.). So, I'm continuing to live in a world of great uncertainty, which I'm getting quite good at.
Actually, all things considered, family life and life in general is solid, stable, and predictable right now. Devin's focus is Scouts, and participating in fund raisers for the Troop Y2K trip in July out West. He thinks winter camping is fun, and spends lots of time playing video and computer games. Devin has come into his own right as a cook this year. Initially, when my deficits were so bad, he often cooked supper to have ready when Dan came home from work. Now that I am back to cooking we get into squabbles about the proper way to cook food items. Since Devin has generally learned his cooking technique from camping expeditions with the Scouts, this leads to some very different opinions.
Cara finished her first semester at Binghamton University with all As and Bs, and the monumental achievement of a B in Chemistry (she's a bio major). This was after much gnashing of teeth and many late-night phone calls. We are so proud of her growing independence! She also has quite a social life. It is not uncommon for her and I to be chatting on line when I'm getting ready for bed and she's getting ready to go dancing. Cara has maintained a size five, thanks to the fitness program at college (and all that dancing).
Dan continues to work at the Capital District Psychiatric Center, where is in charge of an inpatient unit of the most difficult patients in the hospital. As a stress releaser, Dan maintains a rigorous exercise program and listens to music. Speaking of music, Dan and I are listening to a fantastic "course" on tape, a lecture series of 48 lessons on classical music by Robert Greenberg entitled, "How to Understand and Listen to Great Music." Professor Greenberg is from the San Francisco Conservatory of Music, and is very engaging and knowledgeable. He emphasizes how music is a mirror of society, and the development of musical forms. I highly recommend it.
I have learned a lot about LIVING with illness this year. About seeing the glass half full. About how to put illness into the background, up on the shelf in a little box, as best as I can, and go on with my life. Sometimes it sneaks out of the box and becomes the monster who's really under the bed. Nevertheless, I have learned how to focus on the silver lining of this experience - old and new friendships become so much dearer, connections with family so much more special, the kaleidoscope of nature so exquisite.
Despite the dire prognosis in September,1998 of 12 to 18 months, since I still seem to be quite alive and have gradually overcome most of my deficits, I decided to do something meaningful with my time. In September I became a Parent Advocate for our High School's Committee on Special Education. A pinnacle experience in November (and in fact, for the whole year) was facilitating a church service with other members of our church cancer support group in which we all contributed our poems, essays and writings. Buoyed by these successes, in December I expanded my teeny (since my illness) private practice to a tiny one (the Catch-22 is that due to the great uncertainty of my health, I cannot go off disability, so I can only earn a ridiculously low amount - and cannot subtract business and professional expenses from this amount). I also was hired by the Consultation Center, a cozy little mental health center run by the Catholic diocese of Albany where I do individual and family counseling.
Highlights of our Holiday so far:
The best of Christmas Eve: Eating our traditional meal of artichokes and Swedish meatballs. Lighting Neighborhood Luminaries and then taking a walk to see how they looked.
The worst of Christmas morning: Couldn't find the traditional Christmas lox for the bagels.
The best of Christmas Night: Receiving surprise tickets to see Andrea Bocelli from our friends, Gari and Don.
Carrie, Dan, Cara, and Devin
|The Albany Medical Center Cancer Resource Center
47 New Scotland Avenue
Albany, NY 12208
|T.H.E. Brain Trust
186 Hampshire Street
Cambridge, MA 02139