Location: United States
The Elephant In The Room
I was always very good about going to my annual check-ups with my primary care doctor. Preventative medicine is what it’s all about after all right? Well in 2009 I was a few months late from being one year on the button, but I wasn’t concerned. I after all, was living a successful life and so who cared if my cholesterol would show up a little high because I was a few months late. That was my biggest health worry at the time. At 29 there couldn’t be much else wrong. September 11, 2009 I walked into my primary care doctor’s office. We laughed a little bit, had the normal annual pleasantries and she checked me out thoroughly. I recall being a little annoyed that day because they were running behind which was going to make me late for a meeting.
One week to the day later I was driving in a major downpour of Seattle rain when my cell phone rang and I immediately recognized the phone number as my doctor’s office. My heart sped up a little because I knew that they only call when something is wrong. So I put a smile on my face and answered the phone with as much joy as I could. My doctor’s voice, somewhat shaky and quiet was on the other end. She mentioned my cholesterol, which yes was a little high; but I knew she was beating around the bush. She then went on to say that something pretty abnormal had shown up in my PAP test and that she had already made a referral for me to see a specialist in Downtown Seattle. What followed was almost 6 weeks of tests, biopsies and a lot of guessing as to what was going on. On November 4, 2009 however; there was no more guessing. We got an answer, and it was an answer that none of us could have ever imagined.
I received a call from the specialist, part of the conversation is a blur but one statement that will live in my head forever is “Angela, it’s real cancer.” Things seemed to go into hyper-speed after that. Within 2 days of the call I was scheduled for a PET scan and just a few days after that I was to go see my oncologist for the first time. That was a doctor I had never thought I would have to say was treating me; an oncologist. Up until this point I had always known cancer doctors to treat either very young children or much older adults. However at 29, I found myself with cancer, with a cancer doctor and quickly becoming entrenched into what I like to call cancerland.
At the first meeting with the oncologist, her eyes were very serious and there was a layer of concern that hovered over her face. She indicated that the type of cancer I had was extremely rare, neuroendocrine small cell carcinoma of the uterine cervix. She had never personally treated it and barely anyone in their office knew about it. I immediately felt this familiar wave of panic. Here I was again, the kid causing the trouble; the girl with the rare cancer that nobody knew about.
The initial tests showed what they called “disease” spread throughout my body. My sister and my father joined me at my second appointment with the oncologist and we conferenced my mom in on speaker phone as she still lived back in North Carolina. I will never forget when the oncologist looked at us and said we should probably talk about “the elephant in the room.” I thought she was going to tell us how bad chemo was going to make me feel, or about how fast I would lose my hair. Instead she said that statistically based on where the disease had spread I probably had 6-12 months to live. I sat there realizing that she was telling me I may never see my 30th birthday, I may never get married or experience the joy of having children. To be sure this wasn’t real.
A lot happened over the next 3 weeks. I had 4 surgeries to biopsy the “disease” throughout my body, my mom came to visit most importantly I gave my life and my fight over to God. I knew He was truly the one in control of the life that I had always tried to drive. I knew that in this He was going to have a purpose for me and I simply had to trust that His greater purpose would be fulfilled. By His grace and mercy those biopsies ruled that the “disease” throughout my body was in fact not the cancer that they thought it was (it is sarcoidosis). My prognosis became much more positive and they re-staged me from a stage IV to a stage I.
I went through the next 4 months in and out of chemo to treat the original tumor. I didn’t have an appetite at all through treatment, except every few weeks on a Sunday morning I would crave pancakes. Something about that homemade taste and smell of melted butter brought me comfort. I still love the days I crave pancakes, a simple reminder of loving this life.
Together We are Now a Movement
When hearing the news that you have a rare cancer and no one else at your hospital has the same thing it is a very alienating feeling. You do feel all alone. Then one day the loneliness changed to a glimmer of camaraderie. A small group of us found each other online, and this started a mission to find more women who had received our same diagnosis.
In the spring of 2011 we made history happen when for the first time ever a group of small cell sisters met in person at Stupid Cancer’s OMG Summit in New York City. We had 9 sisters from around the US, Norway and Canada. Our doctors were astounded and we were ecstatic. I will never forget the day we had to leave NYC. Those hugs will live on in my heart forever. We didn’t know if we would ever see each other again, we didn’t know how much longer some of us would live on this Earth, but we did know one thing: that we were a family.
That trip began a trend of sisters visiting each other in their travels and going out of their way when they would be nearby just to get a hug. Sisters who live even remotely near each other began going to treatments with the other girls and bonding with their families.
It has become a tradition to have an annual Sisterhood Dinner and weekend event, and the numbers have grown significantly. Dozens of sisters and their families now fill a ballroom at the annual event. Sisters and supporters pitch in to help each other buy planet tickets, have spending money and sharing hotel rooms.
To me, this sisterhood is about reaching out in faith and hope and love. It is about fighting for those we have lost and those who are yet to come. One of our sisters once said, “Together We are Now a Movement.” I couldn’t agree more. Alone we could never accomplish what this small but mighty group of women has done to raise awareness, money and support but together we know that anything is possible.
Reflections of a Surprising Life
As I write this, I reflect on the life that wasn’t supposed to be. I walked out of the chemo room on February 10, 2010. On February 9, 2013 I walked down the aisle to marry my best friend. We have been blessed with 2 beautiful little girls. I was told I would probably never have children of my own, and in another miracle, God showed us He is bigger. Our daughter Kinsley was born in December 2014 and Macey, our second daughter was born in September 2016.
I am living a surprising life! Every day I am struck at how I am experiencing something new or in new ways. Cancer was a turning point in my life. A moment in time that changed me forever. It does not; however, define who I am today. I look at the joy on my little girls’ faces and know that I am exactly who I was always meant to be. I may have taken a bumpy path to get to today, but honestly: I wouldn’t change a moment of it.
This journey and my world would not be the same without the fulfillment of what I believe to be the purpose, the bigger reason I was brought into cancerland and that reason is absolutely the small/large cell sisterhood. For anyone whoever feels alone in their illness, our story is one that brings about the reminder and realization that we are all in this together, we are never alone and even in the darkest moments: there is always hope!
Early on in my journey I ran across this quote that I believe is what all of us in the sisterhood have found:
“In the midst of winter, I finally learned that there was in me an invincible summer.”Albert Camus
As we walk this journey, the winter seems so cold, so dark and so lonely but within each of us is a summer that burns so bright, so intently and so full of purpose. I have no doubt that the Lords plan was to bring me to this group of amazing women. As hard as the journey sometimes gets, I will cling to that summer that He has given me inside to keep going to love my sisters and to never give up.