Monday, November 25, 2013

Waiting to Sleep with Brad Pitt

Since you can't talk about being brca1 positive in 2013 without talking about Angelina Jolie, I figured it was time I did so. Even prior to the whole breast cancer gene/preventive mastectomy thing, I have always found myself relating my life to Angelina’s. We were born the same year, we were pregnant at the same time, and (this is going to sound crazy) but we have similar lips! My bottom lip is kind of plump, okay not Angelina plump, but plump enough that it was once something that I felt self-conscious about…until Angelina came on the scene and suddenly plump lips were sexy. So, Angelina Jolie has a long history of making me feel more comfortable in my body.

The timing of Angelina's New York Times Op Ed in May 2013 (http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0) could not have come at a better time for me for several reasons. I was already scheduled to meet with a genetic counselor and was tentatively exploring a preventive mastectomy to respond to a brca1 diagnosis. I was also having fleeting thoughts that if I followed through with the surgery,  it might impact my sense of self or my relationship. Then all of a sudden, out comes the sexiest couple in the world, as the face for preventive mastectomies! I mean, do you remember Brad Pitt in Fight Club? If that's the reward for a preventive mastectomy, then sign me up!

My research, post-diagnosis, kept leading me to Angelina Jolie. Because of her celebrity, I was easily able to find out things like the difference between brca1 and brca2 and get quick and accurate statistics about my lifetime likelihood for being diagnosed with breast or ovarian cancer.  Since Angelina’s story was pop-culture news, I had the ability to peruse sources like the Huffington Post, New York Times and even People Magazine - reading material which was much more suited to my reading skill level than JAMA (the Journal of the American Medical Association) or any other medical journal for that matter.  

In one of my friendly sources, I came upon the age of Angelina's youngest children at the time of her surgery. (For the record, her twins Knox and Vivienne were 5). Once again I felt connected to Angelina when I thought about how surgery would impact my daughters, particularly my youngest, who is just 2. I was worried about the repercussions of not being able to hold her post-surgery. I read Angelina’s Op Ed piece and and felt validated about my worry. 

I'm so grateful Angelina put words like “brca1” and “preventive mastectomy” in the daily lexicon of so many people. When I tell my friends and family about my diagnosis and upcoming surgeries, I'm able to simply say, "you know, like Angelina Jolie." (Which makes it so much easier than explaining in great detail a medical diagnosis and procedure that I don't necessarily fully understand myself.)  So thank you Angelina for being a sexy, strong, and powerful voice for women taking control of their own health.  I, for one, am proud to be on Team Angelina and am now just waiting patiently for my turn to sleep with Brad Pitt when this is all done.


Monday, November 11, 2013

Reflections on October, A Month of Magic and Loss

It's November and I keep seeing Facebook friends posting their daily lists of what they are thankful for. At the top of my list, I'm thankful that October is over! First of all, October is breast cancer awareness month - this is probably displaced anger, but I'm not a fan of the month devoted to the color pink. (For more on that see http://butterbeliever.com/i-will-not-be-pinkwashed-why-i-do-not-support-susan-g-komen-for-the-cure/) October also was littered with eight "breast cancer gene" related appointments...quite the breast cancer overload. So this November, I'm thankful for an appointment free, pink ribbon free month. Since October was so intense and in honor of Lou Reed, I'm breaking it down to highlight all of the magic (highs) and loss (lows) that happened:


Lets start with my experience with PEOPLE in October:


The Magic
After releasing my blog, the response has been nothing less than surreal.  People who I least expected to express support, were suddenly there for me.  My oldest friends, closest friends, casual friends, friends of friends, and family showed their support through private messages, by reposting my blog, by reaching out to me with emails, phone calls, even by mailing gifts to me.  People shared stories with me about their own challenging times and experiences with cancer. New adjectives were used to describe me that I'm not even sure I deserve: strong, brave, amazing (is that really me?).
The Loss
Well intended, generous, and kind people have their own lives, their own kids, their own jobs and their own problems. People can't be at my beckon call. Nobody could possibly keep track of all my appointments and check on me after each one. As helpful as people are, and as genuine as everyone is when they proclaim that they want to "be there"  for me, I still spent many days of the month scrambling for childcare and often feeling overwhelmed and stressed.

On to another topic...the WAITING ROOMS I spent time in this past month:


The Magic
While waiting for a mammogram I witnessed the most amazing thing. Two friends, who I later discovered were 79, were sitting together in the waiting room awaiting their yearly mammogram. As they sat in their medical gowns talking and laughing, they ran into another girl they grew up with. The three women gossiped and reminisced (again still in medical gowns) about high school crushes, losing their husbands - but having new male companions, they caught up on who among their peers had died, stores that weren't around anymore and grandkids who were too busy with the internet. Eavesdropping on their chat was such a wonderful reminder of how bittersweet life is.
The Loss
I came this close to writing an entire blog entry about doctor's office waiting rooms, but it sounded like a bad stand-up act. Have you ever noticed how depressing the reading selection at the oncologist's office is? But seriously folks... So yes, there were a series of waiting room mishaps: an old lady crying for help from her changing room after an accident with her walker, a two hour wait, and of course the magazines and pamphlets that are exclusively limited to depressing reading material.



Next, I’ll share the good and bad in the content of those many APPOINTMENTS mentioned above.


The Magic
There was the hopeful appointment with the plastic surgeon. Yes, it was the hopeful appointment that included my husband kneading a silicon implant for an embarrassingly long time, but it was also the appointment where we created a realistic game plan for my surgeries (mastectomy and reconstruction) in August.


The Loss
Remember my last blog post about the appointment with the breast surgeon where she found something that ended up being nothing? (http://mymastectomy.blogspot.com/2013/10/i-have-bunny-boobs-blog-post-that_28.html) Well psych, just kidding, it still might be something. The breast surgeon still wants to do a biopsy - so yeah, that sucks. It also sucked when I got a glimpse of my lab paperwork at my pelvic ultrasound. I saw the ‘reason’ for my referral stated in black and white. “High risk of ovarian cancer".  It was kind of a harsh reality that freaked me out quite a bit, on the day of an already not so fun exam.


And one last thought to tie it all together:
The day I found out I was brca1 positive, my husband and I stayed up all night talking ‘till morning. That night, I created a list of dream bands/singers who would come to play my 40th birthday party bash. Number one on my list was Lou Reed. Reed died on October 27, at the end of my month of magic and loss. It seems appropriate then to end with a quote by Lou that speaks to life's lows and highs: “There's a bit of magic in everything, and some loss to even things out.”