Decisions, decisions, and then peace

It's been three weeks since my diagnosis and I feel like I'm just now coming up for air. Thanks for your patience as we settle in. We are so grateful for your emails and prayers and letters and sweet gestures. We feel so surrounded by love. 

Let's get into the latest updates. 

In the waiting/purgatory period before receiving my BRCA and HER-2 test results I found a calm confidence. I knew what we would have to do if I was HER-2 positive and I felt so sure that I had BRCA-1 or BRCA-2, the two identified genetic mutations linked to breast cancer. What else could cause this? I had found my scapegoat in BRCA and I was holding on. I was completely comfortable with the idea of having a double mastectomy, as developing more breast cancer is closer to inevitable than not for women who have BRCA. Lo and behold, I'm BRCA negative. You may think this negative test result had me jumping for joy. It did not have that effect. I do not have the known genetic mutation that causes this cancer. I don't have a scapegoat. Now, that's not to say that we'll never know why I have cancer. Geneticists are constantly researching and identifying new genetic links and I'm on the short list with my geneticist to be notified when another breast cancer gene mutation has been identified. Whether we learn of a genetic link or not, the environment has played a part in this cancer showing up when it did. I've started doing a lot of research on environmental links to cancer and making real changes to remove and reduce toxins. Easy fixes that everyone should consider? Replace all plastic tupperware with glass. Do not eat or drink from any plastic that isn't BPA-free. Only use soaps/shampoos that are free of parabens and phtalates. Eat more fresh, organic vegetables and less meat.

A few minutes after learning about BRCA we also found out that I'm HER-2 negative, which means that I don't have to have chemo before surgery to try to wrangle in the cancer. Chemo isn't off the table yet, but it's not happening now. Feeling good about that. 

So, after receiving both of those results back we were essentially back to square 1. All surgery options were still on the table: 

1. Lumpectomy + radiation + maybe chemo + annual carousel of mammogram, MRI, and ultrasound + years of hormone therapy
2. Single Mastectomy + single reconstruction + maybe chemo + annual carousel of mammogram, MRI, and ultrasound + years of hormone therapy
3. Contralateral Prophylactic Mastectomy (CPM) + reconstruction for matching breasts + maybe chemo + years of hormone therapy

My survival and recurrence rates are essentially equal among all three options. Wild, right? Having a double mastectomy only reduces the risk of a new cancer in the breast, but doesn't reduce the risk of a new cancer or this cancer metastasizing in another part of the body. Without getting too carried away with those hypotheticals remember that the top priority is treating this cancer now. So, if these three options are essentially equal in their ability to treat this cancer, where do I base my decision? 

I base my decision on my life and how I want to live it. One of my favorite poems of all time is "The Summer Day" by Mary Oliver. The last two lines of the poem are "Tell me, what is it you plan to do / with your one wild and precious life?" This quote resonates with me. 

I am going to have a contralateral prophylactic mastectomy so that I can live the rest of my life without the constant reminder of this cancer every 4-6 months in the form of a carousel of appointments and false positives and biopsies. This decision was not made without a lot of careful, deliberate thought. Interestingly, double mastectomy numbers are rising, a trend that is sparking some controversy in the medical world because it's not medically necessary to have the cancer-free breast removed. I argue that it is necessary for my confidence and sanity. 

I spoke with a young woman in North Carolina who had found her cancer in a self-check and underwent surgery in February. She had also chosen to have a contralateral prophylactic mastectomy (CPM). Hearing her very real account of her decision process, surgery, and recovery gave me a glimpse into the path ahead. She gave me invaluable tips like "Stock up on comfy button down shirts!" and, "Buy bolster pillows to prop up your arms!" Getting advice from someone on the other side of a double mastectomy made it all very, very real. Oh shit. I'm about to do this too.

The day before my second appointment with Dr. Funk I had what I think was my first anxiety attack. My heart beat faster and faster, my thoughts were uncontrollable. I flipped to thinking the lumpectomy would be just fine and radiation was better than major surgery. I let myself play through that scenario and 15 minutes and a shower later I was back, and better. I was not being rational or thinking about the rest of my life. I'm facing the very major forever decision of removing my breasts. I'm allowed a breakdown or two, right?

On Tuesday Shaw and I drove to LA to meet with Dr. Funk again and spoke about my options for surgery. Telling her I wanted a double mastectomy was an empowering experience. She heard my reasons and feelings and gave me nothing but support and confidence back. I'm making the best decision for me, she knows that and I know that. Once again I felt a huge weight lift and my confidence soar after leaving her office. I hope everyone who ever has to have any surgery feels this way about their surgeon and medical team. You deserve nothing less. 

This week I'll meet with my plastic surgeon who will perform the reconstruction so we can set the surgery date. Dr. Funk and Dr. Chopra work together frequently and will actually do both surgery and reconstruction while I'm under anesthesia. I'll go to sleep with a cancer breast and wake up with two new cancer free breasts. Amazing!

We are now working with a reproductive endocrinologist at the Santa Barbara Fertility Center. We've decided to move forward with harvesting my eggs so that the effects of potential chemo and the hormone therapy drugs will not take away our ability to have a baby. The cost of the fertility drugs will be covered by the Livestrong Fertility Program, drastically reducing the cost. Soon we'll have healthy frozen embryos, just waiting for the right time. 

So, with all of this going on, Shaw and I also celebrated our first year of marriage. We spent four glorious days camping on Santa Rosa Island. We swam, snorkeled, hiked, laughed, and smooched without interruption or stress. We really needed that. I'll end this post with photos of that trip, one of the most purely peaceful and simple experiences I've ever had.

Sending love,

Jessie