Monday, July 5, 2010

Cleavage Creek

Brian and I love wine. He's a huge fan of a wine podcaster/guru/extraordinaire Gary Vaynerchuk, and watches his podcast, Wine Library TV, religiously. One day, Gary was interviewing a man named Budge Brown, the owner of Cleavage Creek Cellars. He started the winery in honor of his wife, who lost a long battle to breast cancer.

The winery donates 10% of gross sales to breast cancer causes, and features survivors on their labels. Even though I'd never considered doing anything of the sort before, I decided to apply to be one of their label models. Haven't heard back yet if I'm a finalist, but the questions asked in the application were very thought-provoking, so I thought I'd share my answers with you. I realize this makes for a very long blog post, but I think it's worth the read.

Describe your feelings when you received your initial diagnosis:

Due to a rookie resident goof-up, I basically had to ask him myself if I had cancer, even though I knew by his unprofessional previous statement how he would answer. I immediately went into my typical crisis response mode: as a military officer, I’m trained to absorb and resolve crises. I started asking questions right away about my prognosis and treatment plans. Unfortunately, since my biopsy was inconclusive in many aspects, I got a lot of “we don’t know yet” and “you need further tests” as responses. Looking back, I realize now that I was in a state of “I’ll just fix this and move on with my life” denial. As a 29 year old in perfect health with no family history of breast cancer, to say the news came as a shock is a huge understatement.

What are your feelings about how you were treated, both physically and emotionally, by your doctor(s), staff, hospital, etc.?

Besides that first resident’s mistake, I’ve received nothing but professional, compassionate care. Everyone has heard the horror stories of military medicine; I couldn’t have had a more different experience. I went through 18 rounds of chemo at a military hospital. My oncologist treated me with the utmost respect, both emotionally and physically. I had several appointments with him lasting well over an hour, mostly just discussing how my illness would (or would not) impact my life and my career. He listened to me and thoughtfully answered my multitude of questions. I never once felt like I wasn’t being heard. His nurses lovingly administered my chemo and addressed every concern I had promptly.

I have had the fortune to transfer my care to a very highly nationally rated cancer treatment facility in my area. My new oncologist there is just as good. While she doesn’t have the time or military experience to discuss my career with me at length, she’s brilliant in her field, and has been extremely reasonable going forward with my future treatment while being mindful of my priority to someday have a family.

My surgeon and plastic surgeon both did a fantastic job. Unfortunately for me, a bilateral mastectomy was my best option. Fortunately for me, I was a candidate for almost immediate reconstruction with temporary implants during the radiation process. I’m also fortunate that my radiation oncologist and medical oncologist were willing to bend the timeline a little bit so that I could get my reconstruction started before beginning radiation. Seven weeks following my surgery, I now have filled implants (albeit temporary) and look like I have breasts; this is really important for my psyche. I really liked my breasts, and was devastated at the thought of having to lose them. I really feel like everyone involved understood that and worked to get me to a stage resembling normal as soon as possible; for that I am forever grateful.

Where did you turn for support and information?

At my diagnosis, a nurse gave a book called Your Breast Cancer Handbook, by Judy Kneece, to read over at my leisure. I read it that night from cover to cover, absorbing all of the information and formulating a very long list of questions. I was warned to stay away from the Internet, and heeded that advice for quite awhile. Once I learned my treatment plan, I researched the chemotherapy drugs I would receive and all of their side effects to prepare myself. A friend of the family had breast cancer while she was young, and reached out to me; it was very important for me to talk to someone who had actually been through the experience instead of doctors and nurses telling me what it would probably feel like.

It took me a little while, but I finally was connected with the local chapter of Young Survival Coalition. This group has been vital to my mental and emotional heath through my treatment process; these women are my age with my same concerns. It is amazing to be part of such a wonderful group.

What was the turning point that made you decide that you had to fight your battle and win?

It was honestly never an option for me not to fight for my life. I am young and have a lot of years ahead of me. I have barely scratched the surface of a life together with my husband. I want to travel; I have dreams to see the pyramids of Egypt and the Great Wall of China. I long to be a mother. I have a lot of living to do. There was never once another option for me but to fight this with everything I had.

What was the turning point when you knew you were going to win?

I knew this was a winnable war when my initial PET scan came back free of any metastases. Stage III cancer was something I could handle; Stage IV cancer was a whole other world that I didn’t want to be part of.

What are you currently doing proactively to assure yourself that the cancer won't return?

I have been blessed by a fantastically supportive employer who has offered me medical leave throughout my treatment process. Since I have had time off of work to heal, I made it a priority to continue with physical activity throughout chemotherapy. I was very healthy and fit before diagnosis; I continued to work out and eat well through my treatment. I was very cognizant to get daily exercise and not to gain weight while on steroids. I am also under advisement of an oncology dietician who has me following a low-fat, high fiber diet. Since I have hormone-negative breast cancer and would not benefit from any post-treatment hormone regimen, diet and exercise are my only weapons against preventing recurrence, and I take that very seriously.

Include any areas of involvement where you currently volunteer or lend support to other women diagnosed with breast cancer.

Because I am still in active treatment, it has been difficult to find the time and energy to volunteer/advocate. I do plan on attending a National Breast Cancer Coalition LEAD course very soon to increase my knowledge and experience in breast cancer advocacy. My goal is to advocate for breast cancer research and treatment within the Department of Defense, since I am a Naval Officer. I feel like the military is woefully lacking in guidance to help its members deal with situations such as mine.

Currently, I am an active member of the Seattle chapter of Young Survival Coalition. I’m at the point right now where I feel like I’m mostly getting supported by other members, but hope that as I move past my treatment, the tables will turn and I can provide support and insight to others.

Background info you might want to share: where you were born, where you live, school, career, family, hobbies.

I was born in Tacoma, Washington, to amazingly supportive parents. I was fortunate enough to grow up in the shadow of my entire extended family, and we’re all very close. I graduated in 2002 from University of San Diego with a BA in International Relations, and was commissioned two days later as an Ensign in the United States Navy. I completed my first tour on a guided missile cruiser, the USS SAN JACINTO (CG-56) out of Norfolk, VA, where I met my husband. We were married in 2005 at the United States Naval Academy (he was an alumnus) and moved three months later to Pearl Harbor, HI. We spent the first four years of our marriage together on Oahu and enjoyed every minute of it.

We moved back to the Seattle area shortly after my diagnosis. It has been wonderful to be surrounded by my supportive family during this time. I’m also really grateful to live in a region that leads the nation in both cancer research and holistic/naturopathic treatment.

I grew up with a father who was passionate about wine. My husband did not know much about it before we married, but started taking an interest shortly after our wedding. In 2007, after he returned from a deployment, we took a two-week vacation to the north island of New Zealand and Australia. We planned the trip around wine, taking a wine tour surrounding Auckland, and staying several days in Hunter Valley, Australia. We both enjoy wine so much that we took a post-chemotherapy, pre-surgery vacation to Napa, CA. We stayed for five days, tasted some amazing wine, and ate delicious food. We both cannot wait to return. Along with travel and good wine, I really enjoy cooking, gardening, and taking long walks.

Include a short biography of your cancer experience and explanation of how it made a positive difference in your life: date of diagnosis, treatments & procedures, thoughts and emotions you experienced, anything you want to share with others diagnosed with breast cancer (if only someone had told me __________), anything you might be doing now that impacts your life as a breast cancer survivor (diet, medications, support group, lifestyle changes, meditation, herbs, etc.)

It said that people never forget the details that surround the receiving of traumatic news. My grandparents remember exactly where they were and what they were doing when they heard of the attack at Pearl Harbor; for my parents, it was President Kennedy’s assassination. My “Pearl Harbor” happened on September 1, 2009. I was in a small room, sitting on the exam table at Tripler Army Medical Center. My husband was a few feet away in a chair—home on emergency leave from the Middle East-- and a breast health liaison from my medical center was standing next to me. I wasn’t told those three dreaded words. No one said “you have cancer.”

I knew it was bad when three doctors walked in; who has three doctors tell them everything is fine? The surgeon who did my biopsy told me that my results were “unfavorable.” The trouble was that because they rushed my biopsy (to get the results faster), it wasn’t definitive for a diagnosis. All that my medical team knew at that point was that the lump in my right breast was cancerous; they could not rule out Ductal Carcinoma In Situ (DCIS—Stage 0 Cancer). DCIS is a best case scenario in the breast cancer world: easily treatable and incredibly good prognosis, so I right away I was very hopeful that this would be just a short bump in my otherwise very healthy, active life. I scheduled a lumpectomy for the following week, and meanwhile underwent genetic testing and had a full chest MRI. This is when everything went downhill.

Even with absolutely no family history of breast cancer, I tested positive for the BRCA-1 genetic mutation, a breast cancer mutation that carries upward of an 80% lifetime risk of developing breast cancer, and about 60% risk for ovarian cancer. This mutation also increases the risk of recurrence and secondary breast cancers. I was probably more surprised to hear about my BRCA-1 status than I was for my initial diagnosis. However, still assuming that I had very early-stage cancer, and that I had longed to breast feed my future babies, I still opted to go ahead with the lumpectomy.

I had my MRI two days before my scheduled surgery. The results came in late the night before I was to be at the hospital: the tumor appeared to be invading my chest wall. I also had significant lymph node involvement. Therefore, the surgeon did not think that it was possible to obtain clean margins via a lumpectomy. He went further to say that clean margins would be impossible even with a mastectomy. My surgery was cancelled. I was devastated. At 29 years old, I loved my breasts. My breasts made me feel beautiful and sexy. The thought of losing them was almost beyond comprehension.

The new plan was to go ahead with chemotherapy before surgery with the hope that it would shrink the tumor away from the chest wall for a more successful surgical outcome. I had another biopsy to test for hormone and HER/2 status so that my cancer could be staged. The results came back as unfavorable on all counts: I had a triple negative tumor. Triple negative cancers do not benefit from any treatment other than surgery, chemotherapy and radiation. Doctors do not know what causes this type of tumor to grow, and unlike hormone-positive tumors treated with hormone suppression, they have no way to prevent this type of cancer from returning except to eradicate it the first time around. My final diagnosis was Stage IIIB Invasive Ductal Carcinoma—advanced stage breast cancer.

I underwent 18 rounds of chemotherapy spanning seven months. Even though it was not a fun experience, the chemo was very effective at killing the cancerous cells that threatened to kill me. I went into my bilateral mastectomy with a complete pathologic response; no cancer remained in any tissue the surgeon removed! This was my absolute best-case scenario and greatly increases my prognosis.

I am two months out from surgery and have done well with the recovery process. While I dreaded losing my breasts, it was nice to have seven months to contemplate and come to terms with it. After putting my body through all of the stress from so much chemo, I knew I had to do everything in my power to prevent the cancer from returning. I have already started my reconstruction, and am so grateful for some semblance of breasts so soon after my surgery. I will be starting radiation in the next week or so, and am so looking forward to the finish of this almost year-long journey and getting on with my life.

For as negative an experience as is cancer, I feel blessed in so many ways. The physical and emotional support I’ve received from my family and friends has been amazing. I have never felt so loved in my entire life. I also feel incredibly fortunate to have such fantastic medical support from my employer. Military medicine has an infamously bad reputation, but my experience has been nothing short of amazing. I have received the absolute best in medical care, both at the military medical center, and at the civilian cancer center where I was referred. The only out of pocket expense I’ve had after nine months of intense medical care is parking fees!

My diagnosis of BRCA-1 positive, hormone negative, advanced stage breast cancer has been filled with scary statistics. But I am not a statistic; I am a human being with a lively, fighting spirit, not just a number. Not many people my age have the opportunity to be confronted by a potentially life-threatening experience. This cancer has given me the chance to stare the ultimate challenge in the face, and make the decision to do whatever I can to conquer it. I fully understand that every breath I take is a gift, and tomorrow is never guaranteed.

To this end, I’ve met with a dietician specializing in oncology prevention. I’ve changed my already healthy diet to follow a low-fat, high fiber lifestyle and am now eating and exercising as though my life depends on it, because it really does. As soon as I’m cleared after radiation, I plan on making yoga an integral part of my post-cancer life, as it is great for both body and mind. I will continue with my support group, and am fully confident that soon I will transition from a member of the group who needs support to one providing it to another young woman facing a new cancer diagnosis and all of the confusion, frustration and heartache that comes with it.

I realize this was supposed to be a short biography, but nothing about this process has been short or simple. I could go on and on about how I dreaded going to each round of chemo, or about how badly I wanted to keep my breasts, or about how incredibly fortunate I have felt to be going through this experience surrounded by love and fantastic medical care. I could write for pages more about how one moment I can be sobbing on my bathroom floor about the unfairness and hideousness of this horrible disease, and the next moment happy and hopeful about my future as a breast cancer survivor and advocate. I know that as I move past my treatment into remission, that the tears will be less and the smiles will be more.


  1. Congrats, Erin on being a survivor!

    I know the feeling behind your words, being a BRCA1 breast cancer survivor myself. And, as a model for Cleavage Creek, I applaud your decision to apply. The owner of the winery and the cause behind it is wonderful.

    Good luck on your journey.

    Theresa Larson

  2. Erin, would you please contact Barbara at Cleavage Creek wines?


    Many Thx