Tuesday, March 23, 2010

Radiation Day 2, and Oncologist Appt

I was double-booked today, with both radiation and my oncology appt at 2 pm - annoying! Radiation was difficult again, emotionally. I had to wait a few minutes for my turn, after I'd changed into the hospital gown, and the chair they have you sit in to wait is directly across from the entrance to the radiation room. The door has always been open, but this time it was closed while some other patient got X-Rays in there, and thus I got to stare at the door with its huge orange and yellow sign:

That sign made my stomach heavy. Yeah, radiation is scary & dangerous & BAD... we've all been told this for years. So it's hard for me to wrap my head around the fact that right now, in this situation, radiation is GOOD for me. I'm trying, I really am. But so far I hate these daily radiation treatments and I'm only forcing myself through it because 6 weeks of this is preferable to being breastless for life.

I was 15 minutes late for my oncology appt, because it took longer than expected for the techs to position my body exactly/correctly on the table underneath the linear accelerator. They had to call in the physicist to check the field. I have no idea what that even means, but I had the physicist plus the two techs taking turns touching my sternum and saying numbers to each other, nudging my hips like 3 millimeters to the left, then tilting my torso half an inch to the right, and on and on. At least I wasn't crying with anxiety today, I was more impatient and annoyed because I was late for my oncology appt.

Not that I was in any hurry to get upstairs to have 4 vials of blood drawn!! That was no fun. But E was there to keep me chatting and laughing and distracted from the blood. E is the manager of the clinical trial I have joined, the TAILORx Trial. At first the only reason I signed up for the TAILORx Trial was because it was a way to get the Oncotype test for free - which normally costs $3000+!! TAILORx is complicated, but in a nutshell: the researchers' goal is to determine what effect chemotherapy has on breast cancer patients who are at "intermediate risk" for recurrence, based on Oncotype scores. Half of the intermediate-scoring women in the trial will receive chemo, and half won't, and you don't get to choose whether to be in the chemo or no-chemo group - it's randomized.
The catch: the creators of the Oncotype test say that no one with an Oncotype score less than 18 benefits from/needs chemo, and is thus categorized as "low risk." TAILORx, in order to have a larger study group, categorizes you as "low risk" only if your score is less than 11, and categorizes you as "intermediate risk" if your score is between 11 and 25. This meant that even though the ONCOTYPE people say my score of 15 indicates that I'm at "low risk" for recurrence and do not need chemo, the TAILORx people say I'm "intermediate risk" and thus I had a 50/50 chance of being randomized to the chemo group. If I were put into the chemo group, I would have chosen to drop out of the trial, because there's no way I'm doing chemo experimentally, just to verify that the Oncotype people are right that chemo won't benefit me. I'm gonna believe the Oncotype people that I don't need chemo!

But anyway, I was randomized to the "no chemo" group, THANK GODDESS!!! This means that, for starters, my relationship with my oncologist has greatly improved, now that chemo's off the table and there is no longer that tension caused by her pushing chemo and me resisting it. This also means that I can stay in the TAILORx Trial and my participation in it will contribute to research that will help other women in the future, and that makes me really happy. Helping women (and kids!), in general, is what my life is all about. I was pissed off when I was dx'd with cancer and had to put so many things on hold, including applying for a job at the Women's Crisis Center, facilitating Girls Circles, and sponsoring the girl in Pakistan that I'd been sponsoring for 8 years... right now I'm still in the process of putting on my own oxygen mask before attempting to help others again, and I'm frustrated by being A Cancer Patient and impatient to get back to my activist life...so I'm thrilled to be able to at least participate in a research project that is designed to help women. The other great part of being in the TAILORx Trial is that now that I'm not in the chemo group, there are no negatives/downsides to being in the trial - I don't have to participate in any risky or experimental treatments; I'm receiving the same treatments I would have chosen even if I weren't a part of the trial. I guess you could say I'm part of the "control group" - if the researchers want to know what effect chemo + Tamoxifen has on women with intermediate scores, they need to compare that with women receiving Tamoxifen only, and that latter group includes me. (Tamoxifen won't start until after radiation, so I'm trying not to think too much about it right now!) And because my information/progress is being used for research, I'll be monitored extra carefully by all of the doctors, which certainly isn't a bad thing... And, so far, the manager of the TAILORx trial, E, is my second-favorite person on my medical team (second to K, of course!). She is friendly and chatty and keeps me laughing. We already have running jokes about silly stuff, and I appreciate her/that.

SOOOO, so far so good. I'll complete the 6 weeks of radiation (hopefully - there's always that slight chance that I'll say SCREW THIS and choose mastectomy), then my oncologist will pitch her case for Tamoxifen and I will probably agree to at least TRY it even though I'm resistant to it/scared of it, although like I told her, I can't promise I'll be able to stick with Tamoxifen for the full 5 years that it's prescribed for... we'll see. One step at a time. And the next step is Radiation Treatment #3, tomorrow at 2 pm. Sigh.

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