TACKING INTO THE WIND

"We cannot direct the wind, but we can adjust the sails." --Bertha Calloway

My reaction from the taxol treatments seem to be a few days delayed compared to the AC and involves pain from about Thurs-Sunday. On Saturday I wasn't feeling that great and as I labored to get up from the couch I lamented to Jim, "I feel like I'm 85." To which he responded, "but you only look 40." Leave it to sweet boy jim to put it all in perspective for me. :)

The past few days have involved doctors appointments with the infamous "Dr. Data" of oncology appointments past, and a plastic surgeon to try to get a handle on the path forward given the BRCA1 positive gene status. Hats off to dr. data for answering my (printed out) 29 questions patiently and in an understandable (and entertaining!) manner. He is so confident in his numbers, it's amusing. But I guess I liked what he had to say better this time (and this is a true testament to the power of the theory of relativity). According to him (and believe me I've seen different numbers) here are some of the things I've learned:

• I have a 58% chance of getting breast cancer again in my lifetime, based on the specific "jewish" gene mutation that I have (average woman ~14%)
• I have a 16% chance of getting ovarian cancer in my lifetime (average woman ~ 1.5%)
• There are very good screening techniques for catching breast cancer in the very early stages, such as digital mamomgraphy
• There are no screening techniques that would catch ovarian cancer before it was late stage
• I would not need radiation if I got surgery, because my cancer was less than 5cm and had fewer than 4 positive lymph nodes
• (This is the one I really liked) a mastecomy would be easier to recover from than the lumpectomy I already had because they wouldn't take out any more lymph nodes
• Having your ovaries removes greatly reduces the chance of breast cancer
• If I got breast cancer again, I would likely need chemotherapy again
• He thinks gene therapy will be a reality in 10-15 years (i.e., they inject you with something that "fixes" the mutation)
• This mutation primarily effects ovaries & breasts, thus men with this gene mutation have a very minor increased risk of getting cancer (good news for dad and the boys!)
• Having breast or ovarian surgery does not completely remove the risk of getting breast or ovarian cancer, but reduces it very significantly.

Tues we met with a plastic surgeon, which is right up there on the top 10 list of things I thought I would never do in my lifetime. There is apparently a big difference in wooing elective patients vs. those that are there because they have no choice. First of all, the waiting room looked like a living room out of architectural digest magazine. Next, the dr.'s exam room "table" was a leather reclining chair, and most importantly, the gown they had me change into was actually a fuzzy bath robe! I can not tell you what a difference hanging out in a bath robe vs. those paper napkin things they give you at the surgeons makes. I understand that fuzzy bath robes may be above and beyond, but why can't all dr.s offices give you a gown/robe that allows you to feel somewhat human?! but I digress...

So this plastic surgeon (who must've said "ok?" every third word, but was a nice guy, overall) gave us a glimpse into the wonderful world of breast reconstruction. It was a total "who knew?!" experience. As I have said in the past, it is truly amazing what people come up with. Anyway, (**Warning: Potential TMI!!!**) turns out there are several options. Although reconstruction is always an option down the road after a mastecomy, it's easier to do at the time of initial surgery. I had had this (wrong) idea that they somehow just lopped off your boobs, but actually, they keep a lot of the skin, and mostly just make an ellipse around the nipple and take everything out-- there are a few ways to fill the void, as it were:

One involves putting in what are called "expanders." Here I was (again wrongly) envisioning these metal expanding vegetable steamer type contraptions that would provide a sort of internal wonder woman/madonna look, but no. In reality, tissue expanders are more like balloons (although I assume not as fragile-- could you imagine Wham giving me one of his patented head butts and then POP?!) that go in under the muscle. The surgeon injects saline to "pump up" the expander and stretch the skin/muscle every few weeks over about 4 months, after which a saline or silicone implant is inserted in a follow-on surgery. He said there would be tightness and soreness for a bit after each pump-you-up injection (I'm reminded of when I was 12 and got my braces adjusted). He said the recovery from this (recovery = able to lift kids) is the same as the mastecomy-- 2-3 weeks.

The other option is called "TRAM flap"-- they take tissue from the tummy and transplant it to the breast. I call this the "belly boob". Also possible are the "back boob" and "butt boob" but these aren't really an current options. It's a tummy tuck and a boob job at the same time. This, not surprisingly, is a much more significant initial surgery than the expanders. It takes about 8 hours and involves the surgeon reattaching blood vessels through a microscope (!) Recovery time is much longer (more along the lines of 6 weeks). Advantages are that there is no implant, so it's more natural, and the TRAM flap doesn't entail all the follow on pumping up and implant surgery. Plus, it wouldn't require new implants every 15 years or so, as is potentially needed with the expander option.

With either option they do nipple reconstruction a few months after surgery. Which is a relatively easy procedure in which a new nipple is (get this) tattooed on. I had always thought I might consider getting a tattoo if I could think of the right thing to get. Who knew.

Craziness. Mostly I'm just looking at this all in a "wow, how fascinating" sense. Thank god for scientific curiosity.

So, in any event, there is a lot yet to be learned and scheduled and decided, but armed with information I'm finally ready to tack into the wind and aim back to shore. (I've switched from the train to boat metaphors.) On with the journey...