Posted by: julia
on Oct 30, 2015
My mom and I went to UCSF yesterday to meet with Liane Abrams, the genetic counselor, and get the results of the blood test I did last month. Much to my relief, 48 of the 49 different genes they tested came back as negative for any mutation (that’s including the BRCA-1 and BRCA-2 genes I was tested for last year), and the one that didn’t come back negative came back as a “variant of unknown significance” (which is a great phrase and totally my next band name). That variant one is PMS2, in case any geneticists want to know, and is apparently something that shows up in 1% of the Ashkenazic Jewish population. Liane didn’t seem to think the variation was any big deal at all in my case, and assured us that it certainly wouldn’t change my treatment plans in any way. So that was a big sigh of relief.
Weirdly enough, that meeting with Liane was kind of fun. She’s a nice Jewish lady with a New York accent and we felt very at home with her. She taught us some science (she’s clearly an experienced researcher and a great teacher) and we laughed a lot. She also took the time again to ask us about my treatment plan, and about how we each were feeling and how Josh and the boys were doing, and seemed genuinely and humanly concerned. She even asked me to email her to let her know my surgery date, I think she might be intending to come visit, which is very sweet.
On the way out we stopped by the main desk and got to meet Grissel (Dr. Ewing’s practice assistant and the one I’ve been going back and forth with about my surgery date), which was good. She was very nice in person and apologized profusely for the delays and the confusions in the scheduling process. I think having a human interaction face-to-face was helpful in making us each more sympathetic to the other, and we were able to confirm for sure that the surgery date will be 11/16, which removed the last bits of lingering uncertainty. She said she’d be letting us know about pre-op appointments as soon as possible, and would be sending us more info about what to expect and how to prepare as well (even though I have a lot of that already from Dr. Foster).
Posted by: julia
on Oct 25, 2015
Just got home from my first official handpan gig, doing some meditation and sound healing for Eileen Barker's Path to Forgiveness retreat attendees at Mount Madonna Center in Watsonville. It was both fun and satisfying to be a handpan ambassador and an honor to be of service to other people on their healing journeys. I would definitely do that again!
Posted by: julia
on Oct 22, 2015
This waiting bullshit sucks. I’m living 24/7 (yes, even in my dreams) in a weird, cognitively dissonant, limbo space of non-specific threat, and it is exhausting and I hate it. I realize I just have to accept that this is a time to “be” and not to “do”, but the “being” is uncomfortable (not that surgery is going to be any more comfortable).
Speaking of which, I still don’t have a first surgery date nailed down. I spoke yesterday with Grissel, the new practice coordinator for Dr. Ewing the breast surgeon, and she said she’s still waiting to get an official order for surgery in the system from the doctor. I have no idea why it is taking so long to get that order in (*grumble grumble bureaucracy grumble*). Meanwhile time is ticking away and I’m getting more and more anxious. I pushed Grissel to give me some possible dates, and she said how about 11/9, and I said “really, can’t it be any earlier?” and she said she’d try to find out about the possibility of 11/4, but that she’d have to email Dr. Ewing and Miriam (Dr. Foster’s assistant, who has to coordinate with her) and get back to me. I had to just say okay, let me know as soon as you know, even though I just wanted to scream and yell at her "don't you know how this FEELS?"
I so want to get this treatment journey started and this first surgery over with. I’ve spent almost 6 weeks living with this cancer diagnosis and 3 weeks constantly contemplating the difficult physical and emotional challenge of losing vital, identity-central pieces of my body. I’m a fighter and I’m ready to get in there and overcome this challenge with optimistic Supernova style and grace and with my super sharpened weapons of mental/emotional/physical preparation, but this fatiguing waiting is going to make me drop my weapons if it doesn’t end soon. Yet I’m afraid to put all my carefully prepped weaponry down and rest, because I could be called to the fight at any moment. Can’t fight, can’t rest, can’t do anything but distract myself and hope things start moving again soon...this sucks. I feel stalled out and stuck and unable to grow or heal from this trauma. I hate how everything else in my life has to be put on hold while this uncertainty resolves itself.