Thinking Pink

Oct. 31, 2010

I’ve spent a lot of time “thinking pink” lately. I’m sure that’s due in part to the saturation of pink ribbons, pinked Facebook pictures, pink hair extensions, commercials and promotions throughout the month of October “celebrating” breast cancer awareness month. Breast cancer rebels, from high school kids who “[heart] boobies” to football refs with pink whistles, have made the news this month, challenging the codes of their organizations in order to raise awareness of this terrible disease. But the main reason my mind has been clouded pink is because my sister-in-law is dying of breast cancer, and there is nothing I can do to stop that.

Jess is a real person. She is not an abstract cause or a faceless foundation. She is not a pink ribbon or the pink top of a yogurt container. She is an amazing 26 year old woman who has been fighting for the past five years, and now she is losing the battle. She was diagnosed in 2006, when she was a senior in college, but still managed to finish school- on time- with a nearly perfect GPA, despite chemotherapy and many trips to Dana Faber in Boston. While other recent graduates were out enjoying a few months of freedom before settling into the real world of work, she and my brother, Riley, prepared for her radiation and first mastectomy while he worked overtime as a nurse in the critical care unit (ironically) at Fletcher Allen hospital in Burlington. When she was recovered, she dove into her nursing job in the same hospital where she received treatment. She set some personal goals at that time- to run a marathon and become a nurse anesthetist so she could help others the way this group of people had helped her. And for a while, her body cooperated. She worked. She trained for and ran in the 2007 Burlington City Marathon, where my brother proposed to her at the finish line. They felt they had run the race, beat the odds.

They had another scare later that year. They thought they found another lump, this time in the other breast. It turned out to be a false positive, but given her very high risk factor, they decided to do a second mastectomy. Jess was unable to work, again, for many weeks while she recovered, and again, Riley worked overtime to pay their bills, but also nursed at home to take care of Jess. She went through the pain of the surgery and then the reconstruction, trying to plan their wedding and get fitted for her dress in the process. In the summer of 2008, when they married, Jess was cancer free (and had great new boobs for her wedding gown). That fall they moved to Portland, ME so she could begin her nurse anesthetist program.

In the summer of 2009, Jess started to have trouble breathing. We thought it might be allergies, maybe something in their apartment. Unfortunately, tests showed that her cancer had returned, having metastasized to her lungs and bones. Her instructors encouraged her to quit her schooling. Riley had to take more time off from work, although his amazing colleagues in the Emergency Department at Eastern Maine Medical Center in Portland were able to bank their sick time for him so he never lost a paycheck. Her diagnosis meant more chemotherapy, for the rest of her life. She would never again be “cancer free.” They realized then that they would never be able to have children. She was given a timeline in months, maybe years. Instead of dwelling on that, they pushed on. We got pink ribbon tattoos. They went on a medical mission to Ecuador to help people in greater need.

Jess continued her program, finishing up her last round of clinicals this summer. She started to feel poorly in July, struggling to breath and getting headaches. We learned that the cancer was becoming more aggressive. They put in a port so they could try another form of chemo. It didn’t work. They found cancer in her brain, spine, and cerebral spinal fluid in October, just as the whole country was starting to think pink.

Today is the last day of October. Jess has made it through the month. We are measuring in days now, weeks maybe. She is not able to walk securely on her own. She has no appetite. She has excruciating headaches. Riley has had to stop working to take care of her. Her graduation from her nurse anesthetist program is November 13^th. Her goal is to walk across the stage.

As we move into November, my concern is that people will put away their pink ribbons and “Save the Ta-Tas” tshirts and forget that this disease is a reality. They will forget that there is more to awareness and support than road races and rubber bracelets, Susan B. Komen and Yoplait Yorgurt. That it isn’t just about research for a cure, but actually supporting the people living with and dying from cancer, and not just breast cancer.

Please, continue to support research, but also give to local organizations that provide real support to real people with names, faces, and stories. Cancer takes lives, and cancer takes money. Imagine what it is like to be losing the person you love most in the world, but also having to worry whether or not you can afford to be with them in their last days? It takes money to pay for rent and utilities and food, money to pay for insurance and co-pays and medication, money to pay for funerals and burials and legal matters in the end. If you can’t contribute funds, consider your time. Lobby for decent health care and changes to public policy that will allow people security and comfort throughout major illnesses and in the end of their lives. And most importantly, remember to reach out to the people around you who are fighting these battles. Yes, it is uncomfortable to be around death. No one wants to be reminded of their own mortality. But they need you. Their families need you. October may be over, but the road for these people stretches an indefinite, difficult length. No one should ever have to walk it alone.

Update:

Jess took a dramatic turn on November 2, 2010. She was rushed to her treating hospital in Bangor, ME, where they were able to stabilize her enough for transport back to Concord in order to fulfill her wish of being able to die at home. She passed away at home in Concord on November 18, 2010. She was graduated from her nurse anesthetist program while in the hospital. We thank everyone for the outpouring of support received from friends and strangers as a result of the initial FB post.