telling our stories – reposted from fall 2011 {1}

Beginning next week, our class will engage with the cell biology of cancer. Hanahan and Weinberg’s paradigm shifting “Hallmarks of Cancer”, published in 2000 and their recent sequel, “Hallmarks of Cancer: The Next Generation”, will guide our discussion. For over a decade, I have chosen this pathology as the basis for learning about cell signaling, cell cycle and cell death. Not only does cancer make sense as a conceptual framework for learning these topics, but cancer also evokes an emotional engagement with the topic. The American Cancer Society reports that 1 in 3 women and 1 in 2 men will develop cancer during their lifetimes. Given those statistics, I feel safe in concluding that cancer matters to everybody in my class.

While emotional engagement with educational subject matter can be a strong motivational tool, when we are talking about cancer, it can potentially be a roadblock. A discussion of cancer, no matter how factual or academic or cellular can take people to exactly the places they would rather avoid, especially when trying to focus on school. With an awareness of this challenge, I have always invited my students to share their cancer stories as a way of preparing themselves for the weeks ahead. Some choose to tell, some do not, and that is fine.  This year, I have extended the same invitation, but rather than hosting a discussion in class, I have suggested blogging as the forum for those who would like to tell their cancer stories. Here is mine:

I got the first phone call in the summer of 2000. I was an Assistant Professor at Virginia Tech with a promising research program investigating cell cycle checkpoints in frog embryos. Frog embryos share many properties with cancer cells, and I had recently been funded with my first big grant from the National Institutes of Health to support my work. Mom said that Dad had been to see his doctor, insisting on an X-ray because of a pain in his chest that was not going away. “Jill, the X-ray showed a black spot as big as my fist. What does that mean?”  What was I supposed to say? My family never really accepted the distinction between a Ph.D. and an M.D.  and assumed that if I had “Dr.”  in front of my name, I could answer all of their medical concerns. Also, that I would know what to do in situations like these.

The diagnosis came a few days later. Multiple myeloma. This is essentially a cancer of the bone marrow, of the precursor cells to B cells, which produce antibodies.  I began my research right way. “No cure.” “Estimated life span: 1 – 5 years.” “Etiology, unknown, some correlations to industrial exposure to chemicals.”

I rapidly became an expert on multiple myeloma. I understood the disease, the treatment options, the test results. What I didn’t have in hand, all that I really wanted, was the cure. The most promising treatment was autologous stem cell therapy. This option made perfect sense to me: remove stem cells from the bone marrow and separate the healthy from the cancer cells. Apply chemotherapy to essentially destroy the patient’s remaining bone marrow stem cells and then repopulate the hematopoetic system with healthy cells. There were risks to be sure, but the design was brilliant and had been successful for many people in clinical trials.

My Dad was scared but appreciated the logic of this approach and wanted to pursue this avenue. We read more. We attended workshops. We found the specialists. We were ready to move.

We were denied this treatment. The doctor explained that my Dad’s other health problems: high blood pressure, heart disease, rheumatoid arthritis, placed him in a category that was “statistically too risky for the procedure.” “My father is not a statistic”, I wanted to scream, but both the physicians and insurance company would not approve this approach. They offered the more alternative conservative treatments of surgery, then radiation then chemotherapy. Based on my reading, I surmised this would likely buy him a year or two, not the long lifetime he deserved, but we decided that by then, additional options would be available.

Dad was stoic throughout the course of treatment. He and Mom lived in Florida, so I was not a direct witness to the effects of the treatments. Dad told me he felt fine, and Mom told me the truth. After a rough 6 months, Dad was pronounced in remission.  He was put on thalidomide as a maintenance. He enjoyed several visits with his baby granddaughter, my daughter Simonne. He took her to the beach. He ate Cheerios with her.

About two years from the diagnosis, Dad declared he was cured. He and Mom talked about moving to Virginia to be closer to Simonne and the new grandbaby I was carrying. Then Dad started feeling tired. A routine visit to the oncologist showed his M protein count was up.

I have a hard time remembering much of the next few months. Everything happened quickly. Relapse. Aggressive chemotherapy. M counts up one week, down the next, and way up the third.

What I do remember distinctly is my visit with my parents in September 2002. It was my mom’s birthday. Dad had a break between chemo treatments. He slept most of the day and was very irritable. A life-long devout atheist, he initiated a prayer before dinner one evening, thanking God for bringing me and Simonne to see him. The next day, he asked my mom  take him shopping. He could barely walk but insisted on going to the florist and refused my mom’s offer to make the purchase for him. He came back to their house and presented me with a gorgeous bouquet that he picked out himself.

The next day Simonne and I were to leave for the airport and my Dad was scheduled for chemotherapy. I offered to come with him, but he insisted I get “on the road” and avoid the traffic. Simonne and I returned to Virginia. After I left, Dad told Mom he was not going to chemotherapy. Mom offered to reschedule. Dad said no. He was not going back anymore.

About a week later, September 17, 2002, I had the chance to take the Hokie Bird private jet to travel with some colleagues to Purdue University to visit their cancer research center. I enjoyed the flight immensely and fortunately, kept the morning sickness at bay. When I returned home late that evening, my husband was giving Simonne a bath. He looked up at me and said gently, “Your father passed away this morning.” He told me all that my mother had related to him and than added his own commentary. “He died with dignity and grace.”

It’s been nine years since Dad died. He never met Chloe but she loves to hear stories about Pap. On occasion, I still pick up the phone to call my dad. He was a brilliant engineer and used to talk me through fixing pieces of laboratory equipment that he had never actually seen. Dad had a stressful job but he never missed an evening with the family, refused to work weekends, and always, always had time for me. He may not be a physical presence in my life, but he is never very far.

I love you Dad.

Dad and Simonne