Surgery is scheduled

Surgery has been scheduled for September 12th. What a mix of emotions. The goal-oriented side of me is happy to have a date locked in to prepare for. The surgery first-timer side of me is scared of going under anesthesia. The nester side of me wants to buy all of the support pillows and mastectomy bras that I can find. I have 2 weeks to get all of this sorted out so I can walk into surgery feeling prepared for all of it, even the unknown parts. 

On September 5th (one week before the big surgery) I will have a surgical procedure called a nipple delay. This is one of my surgeon's secret weapons that she created for mastectomy success. Basically she will make the planned mastectomy incisions and lift half of the skin off of the breasts. She'll also excise the ducts to be analyzed to confirm if it's safe to keep my nipples or if there's more cancer there. Then she'll put the skin back down and sew me up. So why do this? The lifted skin will call out for more blood flow that will be present in my skin for weeks and will help during the mastectomy and recovery. You can read all about the nipple delay procedure on page 249 of Breasts: The Owner's Manual. During this surgery Dr. Funk will also remove a few sentinel lymph nodes to be analyzed to confirm that cancer hasn't spread there. The MRI didn't pick up anything there, but a biopsy will confirm. This sentinel lymph node biopsy and nipple delay surgery will only take about an hour and I'll be home that night. 

The big surgery on the 12th will be more intense. We will arrive at the hospital in Santa Monica at 5:00am for a 7:00am start time. The surgery will take about 3 hours and will be both the double mastectomy and reconstruction. I will need to spend 2 nights in the hospital and should be discharged on Friday the 14th. I've been told to expect a full month of recovery. 

So what are we doing to prepare? SO MUCH! I've stocked up on all of the vitamins and supplements that Dr. Funk recommends for pre- and post-op, 11 in all! I'm in touch with Jean-Paul LuVanVi, a chef who has 20+ years of experience preparing meals for people with cancer. He will be preparing nutritious, healing meals for us for a week before and a few weeks after surgery. Shaw and I are looking into renting an electric reclining La-Z-Boy and a TV for the month so I can be really comfortable and entertained. I hear most women end up sleeping in their chairs and the electric recline/incline is essential for getting up -- no pulling myself up! There are a lot of products out there that are marketed to women who are undergoing a double mastectomy - special pillows and robes and shirts and bras - and it's a little difficult to know what I'll actually need. I am my mother's daughter, the mother who bought me 4 winter coats for my first East Coast winter...so I'm going to go ahead and buy all of it. Love you Mom. 

Beyond the tangible preparation we're also preparing emotionally. Shaw and I have been seeing our therapist again (who we worked with as a pre-marital foundational support) and I've been upping my yoga and workout routine to 5 times per week. My team at work has been incredibly supportive and has lovingly told me that they 'don't need me around' for the next month anyway. I'll miss them while I'm away.

Tomorrow my sweet lifelong friend Kathryn will accompany me to Los Angeles for a full day of 3 appointments - pre-surgery blood work and EKG, oncologist consultation, and plastic surgeon consultation. Can you believe her? Enthusiastically volunteering to drive around Los Angeles all day and sit in waiting rooms?? I'm the luckiest to have friends like her.

Things are moving quickly now which feels like a mixed blessing. We're handling it and the details are being taken care of...and I have two weeks left with the current shape of my body. I'm embracing what I have now, and welcoming getting comfortable in my next shape. Life sure is full of challenging, beautiful, and baffling transitions.

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

One Week Ago...

I was diagnosed with breast cancer on August 3rd, 2018. I've never had to write anything like this and I've already given away the punch line, so let's back up to the beginning of the story.

In mid-May I felt a bump in my right breast that I just simply hadn't noticed before. Ever since college, where each dorm shower stall had a diagram showing how to self-inspect your breasts, I've done regular self-checks. I did research online and found out that the majority of lumps in women are harmless cysts that come and go with hormones. No big deal. It'll go away on its own. Six weeks later (and a full hormone cycle come and gone) the lump was still there, so I saw my GP who sent me for an ultrasound. The ultrasound was able to tell us that the lump was not a cyst (fluid-filled) but a solid mass. I was told that it was most likely a non-cancerous tumor called a fibroadenoma. 

Here's my first ultrasound. The dark area is the solid mass.

The radiologist even wrote "prob fibroadenoma" on the ultrasound report that was then sent to a surgeon who took a needle core biopsy on July 31st. 

As I lay on the table, watching the ultrasound screen as a needle probed and took samples of the lump in my numbed breast, I had one resounding thought, "This is surreal. This is not happening to me." The surgeon had asked Shaw to leave the room and I was alone with her and her nurse. That moment is haunting. Get this thing out of my body. Whatever it is I want it out. 

As a 28 year old woman, my chances of developing breast cancer are extremely low. A woman's lifetime risk of developing breast cancer is 12.4%, about 1 in 8 women. At 30 years old women have a 0.5% chance of getting breast cancer in the next 10 years. There are many factors that increase your chances of developing breast cancer - everything from your age at your first period to your height. The factor that everyone is paying special attention to is the fact that my maternal grandmother was diagnosed and treated for breast cancer at 40. This family history could prove to be a significant piece to the puzzle.

The results of the needle core biopsy came to me in an email on the morning of August 3rd around 11:30am while I was at work. 

I immediately lost it. I got in my car and drove straight to my husband who enveloped me in his arms.

In the week since diagnosis I have spent hours on end researching cancer and talking about cancer. Waking up every morning thinking this bad dream is finally over. Crying. Floating in and out of doctors' offices. I have met with surgeons, a geneticist, a nurse navigator, a fertility specialist, and an OB/GYN. Hearing 60% of what they say if I'm lucky. 

What we know about my cancer so far from my pathology report: 

• Invasive ductal carinoma (80% of breast cancer starts in the ducts like mine did - invasive means the cancer has now broken out beyond the ducts into other breast area)

• Nottingham grade 1 of 3 (low number is better, means the cells look more normal than not)

• Estrogen and Progesterone receptor positive (this is good and means that my hormones are part of what is feeding the cancer cells. Hormone therapy can block the cancer from receiving my body's natural hormones, essentially starving it)

• HER-2/neu studies pending (we want this to be negative to avoid chemo)

We are anxiously waiting 2 important test results: HER-2 and the genetic report that will contain information about the BRCA gene mutation. These two results will determine my treatment and what combination of surgery, radiation, chemo, and hormone therapy I will need to have. We will have both results within the week and we are anticipating treatment starting within 6 weeks. 

In the meantime, I still feel great physically. I'm exercising almost every day, going to yoga, riding my bike, and have committed to eating 85% vegan and whole foods (give myself flexibility of 3 "cheat" meals per week). My goal is to be in very good shape before treatment so that my body will rock recovery.

In the face of the uncertainty of my next step I have so much confidence. I have confidence in my new surgeon. I have confidence in my understanding of each potential treatment. I know my husband's love for me is unwavering. I feel the love from our family and friends near and far. And I know that although breast cancer is now part of my story it will not define my story. It will all be okay.

Shaw and I will do our best to send regular updates, and your texts and calls are welcome. It's a gift to know that we're in your thoughts. 

With all my love,

Jessie

P.S. If you're like me and immediately looked up every term in the pathology report on the internet...beware. Resources are abundant but not necessarily current or written in an understandable way. I recommend reading Breasts: The Owner's Manual by Dr. Kristi Funk. I'm proud to say she will be my surgeon. Her book was published this year and has the most up-to-date information about reducing cancer risk, making treatment choices, and optimizing outcomes.