I lost my father in 2009 to a rare form of cancer that had already metastasized when it was discovered. He was diagnosed in June and died in September. It was the longest 3 months of my life and my first horrific experience losing someone close to me from cancer. He always said he would live to be 100- he was 57 when he died. The phrase "life is short" took on new meaning for me. I grieved for my father everyday, and I tried desperately to figure out why this had happened to us. What was the lesson to be learned? What was the silver lining? The answers would reveal themselves in time, but for now, I had to keep living my life. My father would not have wanted it any other way.
It had always been a dream of mine to join the Peace Corps and learn Spanish- so I took a year to grieve, and in the fall of 2010 I was accepted to be an ecotourism volunteer in Guatemala. I lived and worked in Guatemala for 2 years and when I came back to the United States, my life started to come together. I snagged a job in my field of conservation biology, I met a great guy, my brother got engaged, and my mother, after being a widow for 5 years, was in a very happy relationship. There was a time that I didn't think any of us would recover from the profound loss of my dad, but here we were- recovered and thriving.
In April of 2015, I found myself alone and waiting in a sterile exam room for the results of a breast biopsy. I had found two lumps in my right breast, but the doctor assured me that a person of my age, and with no history of breast cancer in the family, the masses were not likely to be cancerous. When he came into the exam room he said, "Good news, the lumps were benign! You can go home now. Have a nice life!" This is the fantasy I often dream of still to this day; these were the words I yearned to hear. Sadly that fantasy did not come true, my biopsy results revealed that I had breast cancer, invasive ductal carcinoma. I remember the dread welling up inside of me as I left the hospital thinking of how I would break the news to my family. How can I drop this bomb on everyone when things are going so well? Suddenly it dawned on me- this is how Dad felt when he was diagnosed. I felt immense sadness in that moment for my dad and for myself- will I share his fate? Will I be gone in 3 months?
Over the next month, chaos ensued as is typical with a cancer diagnosis. A PET scan revealed cancer not only in my breast, but something suspicious in my neck and in my lung, both of which required painful biopsies to rule out cancer. I remember lying on my back while a radiologist and pathologist scanned my neck for the suspicious lesion found on the PET scan. I could hear their voices elevate with confusion- "It's not a lymph node, it's her thyroid." What's going on?", I ask with concern. They tell me "We need to biopsy your thyroid; the pathologist is going to read the slide right now." After a couple more minutes, the pathologist comes back into the room beaming and says "You do not have metastatic breast cancer, you have thyroid cancer!" I'm dumbfounded for a few seconds, and then I ask, "But, I still have breast cancer right? How can another cancer be good news?" They explain to me that thyroid cancer is very easy to treat, very slow growing and is much better news than metastasized breast cancer. "OK", I say, "but what about my lung?" Something suspicious showed up on the lung too. That was another biopsy for another day.
That day was on a Friday April 24, 2015, just 2 weeks after my diagnosis. We did the lung biopsy early in the morning and a few hours later I woke up to an enormous amount of chest pain and shortness of breath. My lung had been punctured from the biopsy and I required a chest tube until the lung re-inflated. They told me it would take about 24 hours, which was good news because I would begin my chemo regimen on that following Monday.
Monday came and went, my chemo was postponed, and I was still stuck in the hospital with a tube in my chest. I felt angry that this was happening to me, sad that my body seemed to be failing me, and helpless that I couldn'teven get going with the chemo to kill these damn cancer cells. After nearly a week in the hospital, a doctor came to tell me the results of the pathology on the lung biopsy. It was cancer; breast cancer that had spread to my lung. I was 34 years old and I had stage 4 breast cancer, and because I'm an overachiever, I also had thyroid cancer.
It was a very difficult time and I was struggling to process all the information that had been dumped on me in the span of two weeks. had to absorb this whole new identity: cancer patient. Metastatic cancer patient. I remember feeling immense despair in the middle of the night early in my diagnosis. I was curled up in the fetal position, rocking back and forth on my heels, crying quietly, but uncontrollably. I started mumbling a phrase, "I am young, I am strong, I am cancer free." I said it over and over again until the despair dissipated.
The next day I found the eulogy I had written for my dad's funeral and in the middle of the page was the same mantra I had spoken the night before. My dad and I created it together after his diagnosis. I hadn't spoken that mantra in 6 years, but it crept into my mind that night and brought me so much peace and comfort. It was like my dad had given me a warm hug and assured me everything was going to be okay. It lit a fire inside of me. We already lost one family member to this disease, we were not going to lose another.
It was quite a harrowing experience seeing this disease through the eyes of the patient rather than the caretaker, but once I moved past the initial shock, I began to feel more in control. I didn't now how to help my dad, I ached to take his pain away, but I couldn't. But now that I was the patient, I knew how to help myself. I did eventually get out of the hospital, start my chemotherapy treatments, and begin the fight for my life. When times got tough, I would often ask, "What would dad do?" I tried to channel his good nature and patience, but frankly, I sucked at it. What grace and poise my dad maintained through it all, while I could only express anger and sadness. This difference in our attitudes bothered me, but as the months went on, that anger and fire I felt inside served me well. I fought like hell to save my dad and now I had to fight like hell to save myself. All the lessons we learned from my dad's experience, we applied to my own - we weren't afraid of the doctors in their white coats, we challenged their strategies, we sought second opinions, we didn't make the same mistakes. The differences between my father and me became even more apparent. I was younger and stronger and I was responding very well to the chemo. I was never bedridden and in fact, I exercised everyday even when I felt like I would pass out from nausea. I was feisty and fearless; it couldn't get much worse than a stage 4 diagnosis. As I saw it, the only way to go from here, was up.
At the end of 4 months of weekly chemo, the spot on my lung had disappeared which meant I had had a complete response. After a lumpectomy, thyroidectomy, and 5 weeks of radiation, I had no evidence of cancer in my body. It was surreal. My only experience with metastatic cancer was death, but I had somehow been able to cheat death this time.
It has been 2 years since my diagnosis and I continue to thrive. I still have a port in my chest so that I can receive targeted biological treatments once a month, but this is a small price to pay to be alive. I am also on medication that suppresses my estrogen, which has some challenging side effects, but I do feel that my quality of life is very good. I've incorporated yoga and meditation into my daily routine, and this has helped immensely to manage my fears and anxieties, and has also proven beneficial for gaining back mobility and flexibility in my surgical arm.
I feel more grateful than ever to live in a time when metastatic breast cancer can in some cases, be treated as a chronic condition and not a death sentence. I had no idea the treatment options that are now available to people facing a stage 4 diagnosis, though I feel cancer research still has a long way to go.
The way we treat cancer now is almost barbaric- chemotherapy and radiation may kill cancer cells, but both methods destroy healthy cells and can have permanent damage. Even more remarkable is that many of these treatments for cancer, can actually cause second cancers to arise. I have high hopes that a cure will be found in my lifetime with the burgeoning fields of immunotherapy and genetics, but I see the most promise in the field of cancer genomics.
My breast cancer for example, was treated initially with chemotherapy, but I also receive two biological agents that target the numerous HER2 proteins found on the surface of my tumor cells. Herceptin in combination with Perjeta work together to halt division of cancer cells with minimal damage to healthy cells. The overexpression of HER2 proteins is a mutation found in the cancer cell- it can be seen as a "weak link", and I am hoping cancer research, specifically cancer genomics, will focus more on finding and exploiting these weaknesses. I think we need to move away from categorizing cancer by its origin (e.g. breast, lung, pancreatic) and begin categorizing cancer by its genetic makeup so that we can better tailor treatments specific to the individual.
I want people to understand that metastatic breast cancer is not a death sentence. I've had the privilege of meeting many of these people living with MBC and they are mothers, fathers, wives, husbands, artists, advocates, doctors- they are contributing members of society that still have a lot to live for.
Many of us metastatic breast cancer patients do not fit the profile of a terminal patient. We can have hair, we can run races, we can continue to work, we can be young, we can look healthy, we can go on vacation, we can enjoy life. Even I was ignorant to these facts before my diagnosis. For those newly diagnosed as metastatic, I hope to inspire them to maintain a positive outlook and to understand that a stage 4 diagnosis is not always the end of the road. I would encourage these patients to take advantage of the countless resources available to them through the various organizations that are dedicated to supporting women and me with breast cancer.
The virtual world is also an incredible resource for finding support and can allow a person to remain anonymous if they so choose. It would be remiss of me not to mention those who are diagnosed stage 4 after several lines of treatment, who have tried everything possible to beat their illness, and who really do not have that long to live. For those patients, I would want them to understand that accepting their disease and their fate is not an act of weakness; it's an act of strength and bravery. Knowing when to let go is a very difficult and very personal decision. Family members will often disagree about when that time is, but the person with metastatic cancer is the only person who can make that decision. And though it might sound strange, death can be a very beautiful process. I would have never believed this statement until I saw my father pass- he too had fought metastatic cancer with all his might, but towards the end of his life, we as a family had to accept that it was time for him to leave his ravaged body and find peace. And ultimately that decision was not ours to make, it was his.
I believe very strongly that people have a lot more control than we realize near the end of their lives. My father chose the exact moment to leave this earth and even though we let him know that it was ok to go, the choice was still his and his alone.
My treatments took a lot out of me- I lost 20 pounds and have never been able to gain it back. I do not have the same stamina that I used to and can only run a few miles now rather than 13. I no longer work because the demands of my job were too great. I suffer from a lot of fatigue and have to take naps everyday. The interesting part is that cancer allowed me to become much more accepting of my limitations. I'm not as hard on myself as I used to be. I know that my body has been through hell, so I am easy on myself and I don't try to be a hero with my workouts. I know that my mind and spirit are fragile so I am much kinder and forgiving of myself. I don't criticize or berate myself for not being able to follow through with something.
I stopped following all of my own rules and I focus on doing what feels good physically and mentally. Half marathons are too much for me now, so I focus on other types of exercise. I forbade myself from eating meat prior to my diagnosis, but after getting down to 100 pounds, I realized my body might want, and may in fact, need meat. I started eating chicken and fish after 15 years as a vegetarian.
I actually gained more confidence, I rocked a short pixie cut after chemo and decided to keep it. I'm not as shy in groups now, I'm not afraid to speak out. I'm also working on becoming an advocate for patients with metastatic cancer. I feel a bit nervous to share my story, but cancer helps you see that there is no time like the present!
If I am completely honest, my goal is to live to the age of 40. I hope to live well beyond that, but I try to be realistic. The average life span for a 37-yr old patient with stage 4 breast cancer is estimated to be around 2-3 years, but there is much debate about the number of patients living in the United States with MBC, and therefore life expectancies are only estimates at best. I feel lucky to have lived such a full life already filled with lots of travel, an amazing career, an abundance of caring and supportive friends and family, and a wonderful partner.
But to die at the age of 40 would be too soon and there is still so much I want to do. I'm in a transitional place now in my career- I could go back to work full time for a non profit in the international conservation world, or I could try to translate my MBC experience into a career that offers support and hope to other patients living with the disease.
I recently completed the Hear My Voice program with Living Beyond Breast Cancer, and I have many ideas swirling around my brain about how to become a better breast cancer advocate in my community. My story is not yet finished, and I'm excited to see where it takes me.