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February 2012


Today's post is a science lesson, courtesy of Genetic Counselor Michele, with whom I met this afternoon.

I had heard of this genetic test and mentions of "the cancer gene" before, but really didn't understand it all until I got my own diagnosis (which was one month ago today,  incidentally). I always assumed they tested you to see if you had "the gene" - a genetic marker that you're predisposed to breast cancer. But that's not exactly the case.

You see, we all have "the gene." It's actually two genes, BRCA1 and BRCA2, that work in concert to repair damaged DNA (apparently strands break all the time and a group of "caretaker genes" of which the BRCAs are a part work to repair them) and prevent tumors (abnormal cells) from growing in your body. We all get two pairs of them - one from our mother and one from our father.

The problem is when one of these genes is faulty - or mutated - in which case it doesn't do its job properly and abnormal cells multiply unchecked. Cancer (the uncontrolled growth of abnormal cells in the body) ensues.

About 90% of breast cancer cases are spontaneous, meaning doctors can't figure out what caused the cancer. Crazy.

About 5%-10% are hereditary (and I guess the balance must be tied to a known environmental factor) and there is a genetic test that can be done to determine if that's the case. It is wildly expensive and is only done by one lab, called Myriad Genetics who cloned the gene back in 1994 (Dad: NASDAQ MYGN ... get on it!).

The test was controversial in the past (insurers using it as evidence of a pre-existing condition and an excuse to drop coverage), but it is now illegal for insurers or employers to discriminate based on this information. It's a simple blood test, with results turned around in 2-3 weeks.

A positive result doesn't necessarily mean you'll get breast cancer, it just means you have a higher likelihood of getting it than the average woman. A woman without the mutant gene has a 10%-12% chance of developing breast cancer in her lifetime, whereas a woman with it has a 50%-85% chance of developing it. Plus a 40%-60% chance of developing a second cancer at some point thereafter. Eek. That is why so many women who test positive for the gene - even those with no evidence of cancer - opt for preemptive measures like a double mastectomy. And it is why they recommend that people like me, who already have it, go ahead and get the test so that we have as much information as possible when it comes time to make the surgery and long-term treatment decisions. There is also a high correlation between breast and ovarian cancers, so if you test positive for the gene they do much more rigorous testing for the latter (which is MUCH harder to detect...there is no mammogram equivalent for ovarian cancer). Oh - and first-degree relatives of those with gene mutations have a 50 percent risk of carrying the same mutation.


So, Michele and I mapped out my family [cancer] tree (they should add that module to Ancestry.com) as a starting point. They actually don't think I'm a candidate for the mutation because there is no history of multiple cases of  early onset breast cancer in my family (yes, my Mom's a survivor, but she got it very late in life, as did her mother and they are the only two known cases) and I am not of Ashkenazi (Eastern European) Jewish descent (which apparently has a higher incidence). But they also told me that my initial scans indicated the cancer hadn't spread...and it had...so who knows. I'm learning that there are never really any definites with these things; the doctors do the best they can with the information they have available, but sometimes that isn't enough.

I guess that's where faith comes in :)


Going Public

Those who are close to me know that I've been dealing with a health issue for the past few weeks, and until now I wasn't ready to talk about it here; I was just too mentally, emotionally, and physically drained to talk about it at all, nevermind throwing it out on the Internet for all the world to see.

But now - perhaps selfishly - I think it's time. You see, I've had an overwhelming outpouring of support, concern, and questions from all sorts of people (family, friends, coworkers, medical professionals, hair stylists...even complete strangers!), and while I'm so grateful for the concern, I'm finding it difficult to keep up with the correspondence. I think periodic blog updates on my progress will be a great way for people who care to easily check in and see how I'm doing (but feel free to still call/email/text!).

So here goes:

On January 27, 2012, I went into MGH at 9am for my annual mammogram.  The doctor looked at the images while I was there because I had been complaining about a cyst that was diagnosed a year prior, and she ordered an immediate ultrasound. So we went down the hall where I lied on a bed with 4 residents observing the situation, and the doctor pointed to the image on screen and said, "this has me really worried." From there it was kind of a blur, but what followed was a biopsy to remove a tissue sample and place a marker at the suspicious site, a second mammogram to ensure the marker was in place, and a second biopsy to retrieve additional tissue. I went home at 3pm with a diagnosis: ductal carcinoma. Breast Cancer.

At this point I didn't know much. They had to do tons of tests to understand what stage it was and how to proceed. So I went in at 7am the next day and had a breast MRI. And I spent the whole day there the following Thursday, Feb 2nd, having a bone scan and three CT scans (chest, abdomen, pelvis). That day I went home with a card indicating I was radioactive, thanks to the injections. Would come in handy if I'd gone to the airport and set off the bomb detectors (!). I wish I could've taken photos of all the crazy machines I was in, but no cell phones allowed :) But they weren't enjoyable experiences...I have an irrational fear of needles and blood so all the IVs and infusions put me on edge, but I made it through. And the next day I got the more formal diagnosis: stage 2 breast cancer that would likely require chemotherapy.

I then postponed things for a week while I went on a much-needed vacation to celebrate my 40th birthday (Thanks, John).

And then back to reality: I had a sentinel lymph node biopsy on Monday, February 13th, to see if the cancer had spread. They removed 5 lymph nodes and found cancer in 4 of them. Bummer.

So here's where we're at:

  • I have a 4.6cm cancerous tumor in my left breast (which is large, apparently; too large to just remove), but nothing in the right (thank God)
  • It is stage two three due to its size and the fact that it's spread, but it's grade 1 (meaning it's slow growth, which I find bizarre since there was no evidence of it in last year's mammo)
  • My treatment regimen is 8 chemotherapy infusions over the course of 16 weeks (so, every other Friday). The first 4 are a cocktail of Adriamycin and Cytoxan. The last four will be a different drug, but I forget what it's called.
  • The goal is for the chemo to shrink the tumor so that it may be surgically removed. I would have surgery 2-3 weeks after the chemo has ended, followed by a course of radiation. I will also need to have the lymph nodes removed at the same time.

So I went for my first round of chemo last week, on Friday, February 17th. It wasn't bad, really - I had a private room and a wonderful nurse who even made the IV in my wrist tolerable. It's a slow process - 3 hours for the infusion - but my parents kept me company and provided tons of support.

Here is the note that I sent out after that session to all the folks who had inquired (I've since added links to my care team):

----- Forwarded Message -----
From: Stephanie
Sent: Saturday, February 18, 2012 9:05 AM
Subject: I made it!

Good morning, Everyone -

Thank you for all the well wishes, thoughts, and prayers...they worked! Made it through my first (very long) day at MGH pretty well. I am in the care of an amazing team over there: a nationally recognized breast surgeon who is supremely upbeat and one of the most down-to-earth people I've met; a crazy-smart oncologist who is on the bleeding edge of medicine and involved in all sorts of clinical trials (I'm considering one), and a wonderful infusion nurse who made the hardest part for me (the 3 hour IV) quite doable. I also got two calls from my primary care physician back at MGH Downtown, "just to see how you're doing," and a call and visit from a social worker offering up support groups, massage therapy, acupuncture, whatever. So...I'm really seeing this whole Accountable Care Organization come to life!

Will respond to you all individually at some point, but in the interim, here's what happened:

My wonderful parents fought the commuter traffic into Boston to get me there bright and early and provide some much-needed moral support.

From 9-10 I had an echocardiogram. Have you ever had this done? It's wild...they took 120 pictures of my heart from all different angles which I could see & hear on a monitor, up close and pumping in real time. Creepy but cool. They do this to establish a baseline so the can then monitor any impact the chemo is having on blood flow. The machine highlights direction and volume of blood flow via bright red and blue color overlays, making it look like a rather beautiful piece of abstract art. I'm hoping for a color print out so that I can add it to Pinterest ;)

I then met with my surgeon & oncologist who informed me that the cancer has in fact spread to my lymph nodes, which means my original 4 treatments over 8 weeks will now be 8 treatments over 16 weeks, followed by a couple of surgeries. Not great, but totally doable. And it was all the info I needed to decide to go ahead and buy the oh-so-expensive-Newbury-St-wig I eyed earlier this week ;)

Last part of the day was the lengthy chemo infusion, which I had done via an IV in my wrist. Getting the needles placed was really the hardest part for me (I am notoriously squeamish with these things) but once that was done we just had to sit there and let it do it's thing. I opted for a private room for this first time, and my folks were able to stay with me the whole time. We ate sandwiches, read books, watched tv, and chatted until about 5pm when it was all done and we could go home. I felt pretty good! Tired from all the excitement, but not ill.

And so far today, so good.

Talk soon,


The past week hasn't been quite as rosy as that email was. Later that day I got an injection of Neulasta in my stomach (thanks, Mom) to ward off infection, and sort of went down hill from there. I am definitely feeling the side effects of the chemo (nausea and insomnia among others) and while none of them on their own are debilitating, the cumulative effects can be draining. But it's really day-by-day. Today I actually felt fantastic - met friends for coffee this morning and another for lunch this afternoon. It was the first time all week I ate anything besides gingerale, toast with peanut butter, oatmeal with raisins, yogurt or chicken soup! Progress :)

And now you're all up to speed.

IMAG0592Getting my first chemotherapy infusion.

Very Pinteresting...

You've likely heard of Pinterest by now; it's the hot new social networking site (I hate that phrase) that combines the bookmarking ease of delicious with the image sharing of Flickr. Here are a few of my pinboards - Critters, Farm Stands and Landscapes:


What's so interesting to me - aside from the incredible growth spurt and the beautiful imagery - is how differently people engage with this site versus, say, Flickr (which could have been Pinterest all along). The social sharing here is on steroids; consider this: I pinned about 80 pictures from my long-standing Flickr account to Pinterest and this is what happened to traffic on my Flickr pages...


The spikes occuring around Jan 20th are when images were cross-posted on Pinterest. There was of course a drop off when I stopped "pinning" but it's interesting to see the new life Pinterest infused into the old Flickr account.

And now Flickr is planning a redesign of its own...one that will look decidely like Pinterest.

Da Conch Shack

We're loving all the fresh seafood on this island!

Last night we had dinner with another couple from Boston at the restaurant Coyoba, where I had a Corvina fish special.

Today, we travelled out to Da Conch Shack, a fantastic spot on the beach serving all manner of conch (deep fried, pan fried, stewed, curried...) and some really good jerk chicken.

The best part was seeing how the conch go from sea to table (and glossy souvenir shell, as well). Check out the photos below: (1) entrance to the restaurant (2) empty shells are plentiful in the water; below them are large nets full of live conch; (3) men cart buckets of conch up onto the beach and (4) give 'em a whack with a hammer to dislodge the conch from its shell; (5) another man then pounds it with a meat tenderizer before sending it into the kitchen. It was very tasty!

Da Conch Shack

Da Conch Shack

Da Conch Shack

Da Conch Shack

Da Conch Shack

Lazy Thursday

Today was such a lazy day! Breakfast on the beach followed by lots of reading/sleeping/swimming/sleeping :) Later, we walked up the beach and had a bite at The Somewhere Cafe and a drink next door at the Gansevoort. And would you believe they had fireworks last night, on my birthday?! Here are some shots:

Lazy Thursday

Lazy Thursday

Lazy Thursday

Lazy Thursday

Lazy Thursday