Friday, February 25, 2011

An update, after 3.5 months!!!

Wow, I can't believe I haven't posted in 3.5 months! I'm super grateful that I haven't had anything to post about. But since I'm snowed in right now and very cranky about not being able to go out and do the things I was going to do, I thought I would post an update here instead.

Here's what's been going on:


  • I had my 6-month check-up with my oncologist. Everything was fine. I'd now been taking the Tamoxifen daily for 7 months and still had no side effects, hooray! She did her usual physical exam, and then I had her check this sore spot on/in between my ribs, right under my left (treated) breast. It had been hurting for about a month, but not in an "OMG I HAVE BONE METS" way - it only hurt when I reached up and out. This made me think it was a muscle injury, possibly from my one trapeze lesson in November (god, I miss it), or that time when I maxed out on pull-ups without warming up first. M confirmed that it was probably a muscle thing, and suggested warm compresses and anti-inflammatories. She got a kick out of the fact that when she was trying to examine my rib(s), I was laughing and wincing simultaneously, because it hurt but I'm also ticklish. I briefly saw E, the clinical trial manager and my 2nd favorite person on my cancer care team, and she wished me a happy early birthday and apologized for not wearing polka dots. Ha!
  • I had what was probably my last visit with my naturopath, because she's not going to be seeing patients anymore, wwaaaah! I have yet to make an appointment with the new naturopath. She sent me off with a bunch of really helpful literature on integrative treatment for breast cancer, which re-affirmed my commitment to take all of the supplements... sometimes I forget, wait, what's so great about green tea? Why am I taking this melatonin? So it helps me to read about exactly what each of my supplements is for...then I remember, oh yeah, this capsule provokes any lingering cancer cells in my body to commit suicide, YEAH!!! and I swallow another one happily. :)
  • Interestingly, the staff at the multi-disciplinary clinic where I've been seeing my naturopath learned that giving me the "post-radiation" thermogram a month after radiation ended might not have been all that useful, because the effects of radiation may linger for a whole year. So they want to give me another (comped) thermogram when it's been a year since the end of radiation. I'm curious to see what it will show.
  • I had my BIRTHDAY MOCHA!!! :) As you may remember, I gave up sugar last January and decided to only allow myself two mochas per year, one on Strolling of the Heifers day in June, and one in January for my birthday. A (my super amazing girlfriend whom I'm head-over-heels in love with) came for the weekend, and we went to Coffee Country on my birthday and we each got a double mocha with whipped cream. It was so so so sooooo delicious, even better than I had imagined/remembered. Super chocolately, like hot chocolate with coffee, but better, and ohmygod, I was so in heaven. And then, happy surprise, my friend D showed up with her 3-yr-old daughter, R, and they joined us for a while and it was so nice!
  • I'm now eating a little bit of sugar, even beyond that mocha. My naturopath encouraged me to relax with the "self-flaggellation" over my sugar consumption, haha. A and I made an amazing pear ginger spice cake for our birthdays (hers is 3 days before mine!!), with a butter/maple/apple cider sauce, and it had sugar in it, and it was so good that I had 3 pieces in one day. I still try to avoid refined sugar whenever possible, but I've decided it's okay to have a little bit here and there. I at least eat much smaller portions of sugar-y things than I used to... e.g. instead of a big ice cream sundae, I will have literally a tablespoon full of ice cream, and it still makes me happy.
  • I had my first annual breast MRI, up at DHMC. A brought me to the appnt, in the middle of a snowstorm. I'm not sure how long I was in the machine for, but it was approximately 20-25 mins, and the strangest part of the whole thing was having to have little packets of olive oil (or something?!) taped to my nipples!! The MRI tech said they were "markers." She also wanted to put a "marker" on my biopsy scar, but that was weird, because the biopsy scar was LONG gone since I'd had a lumpectomy and 2 reexcisions since then. I pointed out the big lumpectomy scar (big compared to what the biopsy scar had been, that is), but she didn't put anything on it. Whatever! Then I lay completely still, face down on the table in that spaceship-like tube, and listened to the loud bangs and clangs, the whirring and the buzzing, for however long it was. It wasn't nearly as difficult as last year's MRI, maybe because this year I knew what to expect, and I daydreamed and sent metta to myself and others. At the end of it, I could barely get off the table, though - my breasts were a bit sore from being compressed by the sides (nothing as bad as a "smash-o-gram" would've been, though!), and my whole body was stiff from having been so completely still in one position for so long. My closed eyes had apparently been smushed against the thing you put your face in, because for like half an hour afterwards, my vision was blurry. I couldn't read the signs in the hallways as we were leaving, and it was freaking me out. (I'm the only one in my family who DOESN'T need glasses/contacts!)
  • I waited NINE DAYS for my MRI results and still hadn't heard anything, so finally I emailed K. Turns out there'd been some kind of mistake, and she hadn't gotten the report like she was supposed to, and I hadn't received the letter that someone was supposed to have sent me. So she looked up the report and then told me in that email, "it is NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! go have a GREAT WEEKEND" yay! and i did just that. I have my 6-month check-up with K in the beginning of March, btw. I'll keep you posted.
  • I went had two appointments with an Occupational Therapist who has training in lymphedema (LE), and specifically in breast and truncal lymphedema. Because yes, I have breast lymphedema! My left breast was swollen after surgery, which wasn't a big deal - I mean, I expected it would be - and at the time I just kind of joked about how funny it was that my treated breast was bigger than the other, despite having had tissue removed 3 times. But then, the swelling never went away and in fact increased after radiation. It's been a year since my surgeries, and 10 months since radiation ended, and my left breast is still bigger than the right one. However, it's pretty mild, compared to other women's LE, and it doesn't hurt, thankfully. (I'd say the difference is less than a cup size, so no staring at my chest, people!!! You likely won't notice a difference!!!) This OT did Manual Lymphatic Drainage Massage, gave me some exercises to do at home, put some Kinesio tape on my breast and the rib that had been sore, suggested I could wear a compression bra if I wanted to, and sent me on my way. I was glad my LE was mild enough to not need more than that. In fact, I was skeptical of my need to be there at ALL, but I know that with LE, it's best to get some treatment and education at the very first signs of a problem, because with LE there's no cure and there's no going back. Once you have it, it can be "managed," but never really goes away. So in that sense, I'd rather be overtreated than undertreated. And, this woman was very nice, and it was relaxing to lie there for an hour while she gently massaged my torso and told me fascinating stories about being a part of the women's movement in the 70s, and insurance covered it, so why not? :)
It feels a bit strange to be publicly writing about something as personal as a swollen breast, but the thing is, breast lymphedema is much more common than most people realize. It's not something even breast cancer survivors talk about much. Most of the LE conversations are about ARM lymphedema, which is most commonly triggered by axillary node dissection surgeries (i.e. having a LOT of your lymph nodes removed), but can also happen after just a sentinel node biopsy (SNB), which is what I had. I only had 3 lymph nodes removed. The OT thinks my LE was likely caused by the radiation, not really the SNB. Step Up Speak Out, a great LE resource page, has this section on breast and truncal LE.

Next up is my 6-month check-up with K, in a week or so. I don't mind seeing K, of course, but I'm a little confused about why I need to see her 2 months after I just saw my oncologist. An MRI + two breast exams in the span of 2 months seems like overkill... but oh well! At least I don't have follow-ups with the radiation oncologist to add to the mix!! (I was supposed to have made an appnt with him for like December or something, but I don't plan on ever going back to him!!!)