Amy's America

I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

• Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
• Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
• Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
• One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
• Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
• Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
• Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
• So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
• Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
• So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
• Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
• And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.