Yesterday I took a road trip with 5 other young adult cancer survivors to Texas A&M to participate in a blood cancer panel for their 2nd year med students. I had a good time on the ride up shooting the shit with my car mates about the various horrendous side effects of our respective chemos. We all had a good laugh about the 'mild' bone pain associated with the neulasta shot and commiserated about the state of our hair. For the first time I got to listen to a man bitch about losing his full head of shoulder-length cork-screw curls. He showed off his drivers licence and we all had a good laugh about his awesome hippy-liberal hair and how much it sucks to have it all gone. The guys said that their hair came back in thinner as if the process hastened any male-patterned baldness they may have had in their future. Anna, a college student overcoming Leukemia had long, thick, dark red hair and mourned the loss of it as much as I did...do...whatever.
Anyhow, hanging out with other young people who have had this carnage inflicted on their bodies is really cool and you might be surprised at the level of humor and fun with which we talk about it all. Fun in a sick sort of way.
At the University, we were ushered into an auditorium classroom that held maybe 60 or 70 students, many of whom had laptops open and starbucks in front of them. They looked very young, but very interested in the presentation. Courtney from Planet Cancer presented a power point full of statistics on the abominable survival rates of young adults and the negative gains we have had in the last thirty years. She really hit it home when she said to them that the survival rates today have made no gains from before they were born. She also talked about the unique needs and concerns we have - fertility, peer support, the stop sign in the middle of career or school goals and the fact that our choices are forever limited by the need to have health insurance at all times.
The students had the opportunity to ask us any questions they had and I got a lot of questions about marriage and family since I was the only married parent in the group. Interestingly I got several questions about how my husband handled it and if my marriage suffered. I told them that David was awesome and that our families circled the wagons to support us and that it would have been much different had we been alone to take care of it all. A serious illness could tear a couple apart very easily or it can make you stronger. I am lucky to have experienced the latter. It was really hard. It is really hard to be a good mom and wife when you are bloated and sick and bald and scared. And it must be hard to be a good husband when the focus is not on your pain and fear and on the load you must bear. And I am grateful that David transcended that and loved my bloated, bald, irritable sick ass for all those months.
The students were also very interested in the cost. The cost of insurance and what I had to pay and did I have to fight for it. I told them all about my hours on the phone with billing clerks and Aetna and how I never pay a bill before double checking it for errors. Some of them were incredulous to think that someone might be denied treatment for lack of ability to pay. I told them that the cancer center isn't the ER, they don't have any mandate to treat anyone. They do what they can, but can take on only so much charity work. And it takes a lot to qualify for medicaid. I know a lady who works in the office that determines who gets covered and who doesn't. She told me that a young woman with stage 1 or 2 breast cancer would be denied until she hit stage 4. Stage 4 is terminal, stage 1 or 2 is curable. So Medicaid would deny the person they could cure until they could no longer be cured, then they'd go ahead and cover her. How fucked up is that? And my age group is the most likely to be uninsured.
I think it bodes well that they really were interested in our experiences and seemed to relate to us well. They will hopefully remember us when they set up their practices. Courtney had a great quote in her presentation. She said 'Doctors have a saying, "When you hear hoof beats, look for a horse, not a zebra." Well that's great unless you are a zebra. This panel is nothing but zebras.'