It is Memorial Day weekend 2012 and I am on a train to Quincy, Illinois where my cousin is going to pick me up. There’s a Greek Restaurant we usually get lunch before driving another hour across the border into Missouri towards her family’s home, on the farm the her father and my grandfather farmed together. My cousin, Jennifer, had been asked to give a speech about being a cancer survivor, having just finished chemotherapy and declared in remission in January. Jennifer had been struggling with and asked me for some advice on how to approach her speech, as the previous week she had received a call from her doctor telling her that there was new tumor growth, and that she would have to begin a new course of treatment.
This weekend was the beginning of a journey that would end in September of 2014 of trying new experimental drugs, and clinical trials, all targeting aggressive ovarian cancer growth. Jennifer had been diagnosed with ovarian cancer the previous summer, after having severe abdominal cramps and menstrual symptoms. She had gone to see a doctor and they had discovered a tumor on the ovary, which they decided to monitor for growth before deciding to remove. After showing steady tumor growth, Jennifer went into surgery anticipating a laparoscopic removal of a small tumor to be assessed for cancerous cells. The actual surgery was far different, requiring an incision to remove a malignant tumor roughly the size of a grapefruit. The removal or the tumor also required the removal of her ovaries, devastating to a young woman who always wanted to have children.
You may ask, why do I claim this weekend in what is the middle of this timeline as the beginning of a journey. This weekend is the beginning of a slow death; the first time doubt began to enter our minds. The realization that this disease might be what would kill her. So here we are, it is Saturday morning, I have come down after the work week, and we are working on the speech about survivorship she is supposed to give the Cancer Society of America gathering the next day; after learning day earlier that she was no longer in remission. Jennifer is struggling with whether to tell the community that she has just discovered that she is no longer in remission, or if she leaves that information out, keeping the speech more positive and inspirational. She wants to discuss the challenges of being a young woman with a serious diagnosis, who wants to continue her education and her life, but has had to move home where she has caregivers to assist her. She makes a three hour journey to St. Louis to receive treatment and go to doctors appointments regularly, while finding she has increasingly less energy to pursue her interests. She wants to discuss the way disease has begun to shape her identity though medical side effects, travel commitments, and decisions that no longer seem to be hers so much as her doctors and nurse coordinator. Ultimately she decides that she wants to discuss the pain, and the sense of loss she felt having gone out of remission.
The next day, a Sunday, we're in a community center- as with all group gatherings in the Midwest there is a table filled with snacks and cakes, a bowl of punch, and a huge cooler of lemonade. The gathering is called a tea party, and there are a few different speakers who share their stories, and their struggles with cancer, or as cancer care-takers. Some local high school students sing a song, and they ask how many survivors are year-long survivors. Then they ask about five year survivors, then ten, and so forth. I’m sitting next to Jennifer knowing that she cannot raise her hand for any of these benchmarks; that she has her speech in hand and that she wore her new dress for the occasion. She’s nervous that she’s going to cry and not be able to finish the speech; the night before I promised her that if she cried I would go up and finish her speech for her. When she goes up to deliver her speech she does cry, at the end when she explains that she received a phone call telling her that she was no longer cancer free; that what she had thought was an ending was only a beginning.
One of the event coordinators, prior to the knowledge that she had new cancer growth, had encouraged her to speak because survivorship was about still being alive, still being in the game even after diagnosis. Jennifer had never felt comfortable with the term “survivor” and after her four month window of remission closed, she felt even less comfortable with that identity. Jennifer began her life with cancer using the aggressive terminology we are used to seeing in literature about cancer or cancer support groups- she “battled” with cancer, she was “fighting cancer”. She was determined to try any treatment available, to be included in clinical trials, searching for her cure, as well as furthering cancer research for other young women facing similar circumstances. As her journey began to end she used more passive terms, she was “managing” her cancer, she was “coping” with treatment. Hope began to slip away as disease became chronic, she would never again be in remission. She lost the ability to eat and spent the last year of her life relying on nutritional supplements, unable to eat solid foods without vomiting, consuming only small quantities of liquids. She lost her energy and would sleep most of the day, needing help to move from her bedroom to the living room, a distance of maybe fifteen feet. As her disease progressed she passed the first benchmark, one year, the two, three years, but the five year mark eluded her. In September of 2014, just two months shy of her twenty-sixth birthday, she died at home.
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