Posted by: Sarah | May 1, 2005

Echos, Ports, and BRCA

I never reported back on my echocardiogram on Friday. It was the usual, if you’ve had an echocardiogram before (oversimplified version: ultrasound of your heart), except that I discovered how divine it is to have a wedge pillow to sort of rest against while lying down. Ever since then I have been trying to duplicate the Magic of the Wedge Pillow to my satisfaction, but it’s quite hard to duplicate with a little bolster pillow or regular bed pillow. I would order an actual wedge pillow except then I’m not sure there’d be room for all three of us (me, Tom, and the wedge pillow) in the bed. Tom brought Alexander in the bed this morning when he woke up before dawn, and it was mighty tight quarters for a while.

Anyhow.

Tomorrow is my oncologist appointment, here in Oxford. I presume/assume we will be deciding if it is Go Time on the Chemo or not, maybe even setting up the schedule. I’m half hoping that he’ll hear about my super-exciting node negative status and will decide that I only need to do four rounds of chemo versus a full six, but then again, I will understand if he decides I need to pitch a complete game.

We’ll also discuss the option of a Port. A port is something my mom considered, but never did, and I think she regretted. It isn’t as pressing a situation for me as it is for many people receiving chemo because my surgeon told me I am allowed to use my surgical arm for blood-sticks and receiving chemo; most times when lymph nodes are removed from near your underarm, that arm (the “surgical arm”) is off-limits for anything like IVs or chemo or even, I understand, blood-pressure cuffs. However, my surgeon said that since they took so few lymph nodes (three, compared to twelve of my mom’s), my arm is not off-limits.

That said, chemo can wear out veins and I don’t have great veins to begin with. It took three tries for the pre-op nurses in Jackson to get my IV inserted, and I still have a wicked bruise from one attempt (nearly three weeks later!). Seeing as how every chemo round will require A) a blood stick, and B) an IV for chemo and fluids, that could wear out my veins mighty fast.

My Jackson surgeon suggested a port and a few visits ago, the oncologist mentioned it as well. I’m Pro-Port, but not so much if it’s going to delay the start of chemo too long. Also, how does a port affect the reconstruction? I asked the plastic surgeon’s nurse, but she didn’t really give a hugely satisfactory answer (”we wouldn’t finish anything until after chemo,” which I already knew).

Oh, and last, I’ll be meeting the genetic counselor again tomorrow at the oncologist’s. He’s got my gene testing results. He told me in late March when he drew the blood for testing that I should not read anything into his calling to say “the results are in; let’s schedule an appointment to discuss them.” He does that with everyone.

But I’m almost positive I’ve got BRCA1. The genetic counselor said at our first meeting that, based on my family medical history, there’s a 90% chance that I have BRCA1. I have vague answers to the “what would that mean having the BRCA1 mutation?” question, but let’s just table that for tomorrow, when I do know for certain if I’ve got a mutant gene or not.

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