Tuesday, July 27, 2010


I haven't written in soooo long. This is partially because the neighbor's wireless Internet connection, which I pay a monthly fee to use because it's the only one I can access from my bedroom, was killed by a lightning strike and I'm now reliant on public wi-fi that's frequently unreliable and has limited hours and is a hassle to get to.

But the bigger reason I haven't been blogging is because GUESS WHAT, I FEEL GREAT!!!! :) There are no cancer updates to give, because the cancer's gone and the treatments are over and I am living my life!!! Life is GOOD!!! (Or rather, my life of course has problems like everyone's does and I'm working on solutions, but the problems are thankfully not CANCER!) I've been on the Tamoxifen for almost 6 weeks now, and despite how incredibly scared I was to begin taking it because I was convinced I'd have all kinds of horrible side effects, I really don't have ANY side effects. I haven't even had a single hot flash! Well, my last period was a little weird, which is probably due to the Tamoxifen (e.g. super heavy for 2 days, then entirely gone for a day, then back, etc), but I can live with that.

I'm so grateful to be feeling so good right now. Now my tasks are to
A) Resume regular exercise (all I really do now is walk a lot - I need my yoga and trapeze back! But it's getting started that's the hardest part, now that it's not habit anymore!)
B) Figure out my post-treatment plan, in terms of check-ups/follow-ups/cancer screenings, which I'll need for the rest of my long, long life. The radiation oncologist wants me to see him in 6 months but I'm not going to, because I'm not having any radiation-related problems and I don't want to see him. I have a check-up with my medical oncologist in a couple weeks and will continue seeing her every 3 months for a while, then every 6 months, then once a year, etc., which I don't really mind. We've had a pleasant enough relationship ever since I realized she's not just chemo-obsessed and she realized I'm not a total hippie freak (e.g. we found a middle ground to meet upon). Then I have my 6-month check-up with my surgeon in September, which I'm totally looking forward to. (It would be great if K could just be my "everything" doctor!)

My upcoming visit with K was supposed to include a mammogram but I refused it. Or at least, delayed it. I'm worried about the radiation exposure from mammography, and thus will not automatically submit to the standard, recommended, annual mammogram. If I live to be 100 (and I plan to!), that means having like another SEVENTY mammograms! Geez Louise, that's way too much radiation, especially since I've already had so much, and especially because my breasts are so dense that mammography isn't even all that effective. I'm currently researching mammography more, and mammography alternatives, and compiling a long list of questions for K. At our Sept appt, we can chat about it all, and I'll decide when I would be okay with having a mammogram and how frequently after that. I'm not anti-screening... I'll have as many MRIs, ultrasounds, breast self-exams, clinical breast exams, and thermograms as she wants me to have. But when it comes to mammograms, I am being a Difficult, Non-Compliant Patient for the time being!!!! (Funny how K is my favorite doctor out of all of them, and the one I trust/listen to/go to the most, but I STILL can't simply follow her instructions/recommendations without first researching the crap out of everything myself and over-analyzing and thinking thinking thinking till my brain hurts!!!)

Thursday, July 8, 2010

Drill Baby Drill

I went to the dentist today, to have that temporary crown cemented on FOR THE THIRD TIME, dammit, and to get 2 fillings.

It was not pleasant. But I had them take a picture of me before they started, because I was cracking up at the set-up - they gave me a blanket for my legs because the A/C was cold, a cushy roll for behind my knees, a neck pillow, a protective bib, and purple sunglasses.

I can't decide which was worse, the novacaine and drilling, or my dentist's repeated attempts at a Cancer Conversation. He's a very nice guy and he means well, but really, I am so sick of not only having to go to so many doctor appointments in the first place (I'm being monitored or treated by a medical oncologist, radiation oncologist, surgeon, naturopath, psychotherapist, chiropractor, primary care physician, and dentist), but of having to talk about cancer with each and every one of them, whether cancer is my reason for the appointment or not. It gets so tedious.

This is what made me feel better while I was tired and woozy and dizzy from the novacaine:

And yes, I put on GOBS AND GOBS of sunblock...I looked like a demented clown!

Thursday, July 1, 2010

Tamoxifen again

I found more information about Tamoxifen that makes me feel better about taking it.

The Clinical Journal of Oncology, in 2005, published findings from a study on which patients benefit the most from Tamoxifen. And as it turns out, I fit that profile.

The conclusion states: "Not all ER + pts [patients with tumors sensitive to estrogen] benefited equally from tamoxifen. The largest benefits of tamoxifen were observed with high quantitative ER and low RS [recurrence score/Oncotype dx score], while smaller benefits were observed with low quantitative ER and high RS."

There's a table that shows the information -

Women with LOW Oncotype scores (less than 18) have a 7.2% absolute risk reduction from Tamoxifen (at 10 years out).
Women with INTERMEDIATE Oncotype scores (18-30) have a 17.3% absolute risk reduction.
Women with HIGH scores (over 30) only have a 1.6% absolute risk reduction.

Since my Oncotype score is a 15, at the higher end of the "low risk" category (and called "intermediate" by the National Cancer Institute) and the tumor was also highly ER+ (10 on a scale of 6 to 12), this means that I'm in the group that is likely to benefit the most from Tamoxifen. I was surprised to learn this, because I had thought that since my Oncotype score put me at such "low risk," the Tamoxifen might not even be very important. But it turns out it's the opposite - it's the women who are at high risk for recurrence that don't benefit nearly as much from the Tamox; for them, chemo is what's more important/effective.

What also helped me was a great visit with my naturopath, A, two days ago. She asked about my Tamoxifen decision, and I told her that I'm taking it, but not really feeling good about that. I told her I don't feel like taking it OR not taking it is a "good" decision; that I'm equally scared of the consequences of taking it or not taking it.

A then said that she feels really good about me taking the Tamoxifen, which was such a relief. And I surprised myself by reacting with surprise - I blurted out, "Really??" when she told me that. And I hadn't thought about it consciously, but that made me realize I had subconsciously been wondering/thinking that maybe A, being my NATUROPATH, would be disappointed that I'd chosen to take the Tamoxifen but would continue to help me on my path in spite of that. It was great to learn that she doesn't just "tolerate" my Tamoxifen decision - she supports it. She was excitedly telling me about studies that show that patients taking Tamoxifen PLUS the supplements I'm taking (some of them, anyway!) do even better than patients taking just Tamoxifen. I was happy to know that her position is "Tamoxifen and [your supplements] work really well together!", not "If you're determined to take the Tamoxifen, these supplements can at least help you counteract the evilness of it." I'm feeling much more at peace about my decision now.

I love it that A is truly integrative. She's one of the few people not trying to get me to choose either conventional medicine or alternative medicine and shun the other, and I so appreciate that. She also told me that I'm in that "narrow window" of patients who tend to be most successful in overcoming cancer, in the sense that I am not too rigid in either direction - I'm neither a person who is so dogmatic about natural health that they won't even consider the conventional therapies, nor am I a person who goes on smoking and drinking and continuing a mainstream lifestyle despite evidence of its harms....I'm open, but with a healthy skepticism, which is the most helpful way to be. All of that was so great to hear. She did add, however, that while it's great that I can look at things from all angles and see all the possibilities, it's not helpful if I get too caught up in this and can't find inner peace with my decisions because of it, etc.

Sort of related to that, A thinks I need to relax a bit. :) One suggestion was to get off the computer for a bit, stop the endless researching "and reading books like this" (she said while gesturing to a stack of cancer books in her office), "and read a novel! Do you like novels?"

Oh dear. I hadn't told her about my current stack of books, but maybe she's psychic. Because she's right - I just finished reading "Brightsided: How the Relentless Promotion of Positive Thinking Has Undermined America," by Barbara Ehrenreich, and now I'm currently reading:

"Final Exam: A Surgeon's Reflections on Mortality," by Pauline Chen
"Living Downstream: An Ecologist Looks at Cancer and the Environment," by Sandra Steingraber
"Life Inc: How the World Became a Corporation and How to Take it Back," by Douglas Rushkoff
"The Vegetarian Myth: Food, Justice, and Sustainability," by Lierre Keith

So, yeah. Anyone have suggestions for relaxing novels I should be reading? ;)