An Even Bigger Decision

Judge Robert Sweet is my new best friend. Yesterday, this honorable man ruled in a federal court that the patent on my genetic mutation is invalid and must be dismissed. Basically, March 29th should be made a national holiday among the high risk community. Here’s the back story:

Our BRCA1 gene - isn't it pretty?

Our BRCA1 gene - isn't it pretty?

In 1990, a woman by the name of Mary-Claire King noticed that families with a rich history of breast and ovarian cancer shared a similar piece of genetic material. Of the 23 chromosomes in DNA, Dr. King found that this common genetic factor resided within chromosome 17. With this discovery, the race was on to isolate the single gene, among 1,000 genes in this chromosome, that was linked to breast and ovarian health. In 1994, a Salt Lake City lab narrowly beat out all of the other competitors and Myriad Genetics claimed ownership over the BRCA1 gene as their prize. A year later, they also discovered the link to BRCA2 and patented this gene.

As a result of the patent, only Myriad could test men and women for a mutation of the BRCA1 and BRCA2 genes, and they charged a pretty penny. To be exact, before March 29th, Myriad priced a comprehensive genetic test of both genes at approximately $3,000. But now that the patent is invalid (that is, pending appeals at higher courts) the test will become much more affordable and available! Access to life-saving science will no longer be a privilege but a right.

That huge landmark aside, today I scheduled another consultation with a breast surgeon. Dr. Shawna Willey is the director of the Betty Lou Ourisman Breast Health Center at Georgetown University Hospital. I actually used to volunteer there, so I’ve crossed paths with Dr. Willey on a number of occasions, and I’ve always admired her intelligence and her warmth with patients. She’s so personable, and it means a lot to me to have a personal connection with the lady removing my lady parts. I’ll meet with her on June 7th at 1:00pm, followed by a consultation at 2:30pm with plastic surgeon Dr. Scott Spear, also at Georgetown. These two doctors are covered by my insurance, which is awfully persuading. Funny to think there’s a possibility I might have new breasts crafted at the same hospital where I was born and on the same campus where I was educated.

The weekend before, I’m going to New York City to meet with breast surgeon Dr. Lauren Cassell and plastic surgeon Dr. George Beraka. These two surgeons were the same pair who performed a prophylactic mastectomy with reconstruction for Jessica Queller, a screenwriter and national advocate for young women at high risk for breast/ovarian cancer, and a true inspiration to myself and so many others. Dr. Cassell and Dr. Beraka also performed the surgery and reconstruction for my friend, whose gorgeous new breasts I was able to see and feel two weeks ago. I’ll meet with Dr. Cassell on June 1st at 10:00am, followed by my appointment with Dr. Beraka at 12pm. The one setback is that they are not associated with any health insurance company, so I’ll have to see what kind of figures they give me in June.

In the meantime, I asked my friend, who is in medical school at Georgetown, if she would like to accompany me into surgery should I have it done at Georgetown. Since she’s a med student, and it’s a learning hospital, she should be able to be in the operating room and see the whole thing! Dr. Willey’s office said she’ll need to get some signatures, but it shouldn’t be a problem. My friend, gratefully, was not completely grossed out by my cordial invitation. On the contrary, she’s excited to not only be there with me but to also learn from the experience, which is what I’m really thrilled about! When I say I want to share this experience so others may learn alongside me, I really mean it, even down to the operating room. Should I have my surgery at Georgetown, it will be so comforting to know that my friend will be present in the same space, watching the whole transformation. Although I don’t think I’ll want to hear the entire play-by-play afterwards.

As I firm up consultation appointments, the reality of my decision is settling in more and more. Instead of feeling anxious, I have mostly felt great relief. That is, I’m more anxious for the day when I can wake up and know that breast cancer will never be apart of my life, despite the odds I was born with. The same odds to which my grandmother lost.

Truth of the matter, after testing positive for the mutation, I feel like I’ve broken up with my breasts. Before they were my most precious commodity, my dearest friends.  Now they’ve taken a direct hit not only upon my livelihood but also my womanhood. There are even days when I feel like I have two ticking time bombs strapped to my chest. This may or may not be a healthy or rational depiction, but it’s how I feel. So, for now, I look forward to the day when I make amends with my breasts. It’s like a big argument with a best friend that only makes your friendship stronger in the end.

And when it all boils down to it, I can’t wait for the day when my breasts reiterate my passion for life and make this visible to my friends, my family and the world. What a blessing.