Wednesday, November 2, 2016

Coke or Pepsi: My Fifth Anniversary of Cancer


 

Have you ever ordered a Coke and what you get is a Pepsi.  It’s just not the same. Try telling that to your health insurance company.

 

It has been five years since I was diagnosed with breast cancer.  I was lucky because I caught my cancer early: I found the lump myself.  Because it was not widespread, I had a lumpectomy, not a mastectomy.  Genetic testing made the decision not to have chemo an easy choice.  So once my seven weeks of radiation therapy (which I called “tanning booth sessions”) ended, most people assumed cancer treatment was behind me.

 

Not so.  Like many women with breast cancer, I was given a drug, tamoxifen, to take for five years.  The side effects, I was told, would include hot flashes, night sweats, and a host of other things that sounded a lot like menopause symptoms.  I was 49 when I was diagnosed, so I suffered these side effects right along many women my age without any history of cancer.  "Is it hot in here?" was my constant refrain.  But it wasn't too bad.

 

Until this year, over four years after starting tamoxifen, when I began to experience changes in my mood.  I have always been a very happy person.  I had never experienced depression until this year.  And then it hit me.  I was tired, and thought I was over-trained, having trained for an ultra-marathon in 2015.  I took some time off, but it didn’t help.  Objectively my life was wonderful, and I knew that logically.  But I sure didn't feel it.  There were days when I felt sad, and other days when I felt nothing. Nothing.  I slept for 10 hours or more a day.  I stopped my athletic endeavors almost completely.  I ate everything in sight and drank a lot of wine.  I gained over 20 pounds. 

 

I began to examine everything about my life.  And then I remembered I ordered Coke and got a Pepsi.  Well, what actually happened is that I went to the drug store to get my tamoxifen, and the pharmacist noted that he had filled a different brand. 

 

“It’s the same active ingredients as the other tamoxifen.  Just a new brand.  Your insurance company has required us to change it,” he explained. 

 

“So it’s like Coke versus Pepsi?” I recall asking.  I should have realized then that this could be a problem.

 

It’s not that one brand is cheaper than the other, it’s just that insurance companies negotiate volume discounts.  And it is not that Coke is better than Pepsi, or vice versa.  Some women have worse side effects on one type of tamoxifen, and others react the opposite way.  Clearly, the switch was a terrible idea for me.  I spoke with my doctor, and dropped tamoxifen altogether, just a few months before my five years was up. He assured me that the drug had already done its work in protecting me.  And I could not keep living the way I was living.

 

So now, the good news is that I am cancer-free, drug-free, and once again happy.   I have lost more than 10 pounds that I gained earlier this year, and have a plan to lose the rest.  I am back to training, and am eyeing what races I might do in 2017.   I am celebrating that I have passed that five year mark, which means that it is much less likely that my cancer will recur.  It’s a wonderful world!

Thursday, September 15, 2016

You cannot invite Lisa to your pool party: SwimRVA Splash Bash highlights efforts to boost swimming accessibility following legacy of discrimination


“You cannot invite Lisa to your birthday party at the swimming pool,” Mom said to me as we planned my Sweet 16 celebration in 1978.


I was thinking about Lisa as I began swimming in earnest again, training for the recent Richmond Rox sprint triathlon. I dedicated the swim portion of my race to those who cannot swim. 


I cannot imagine being unable to swim. Swimming was part of my everyday life, growing up in Alabama. I learned to swim at the YMCA, before I learned to read. 


Every summer, we swam in the Gulf of Mexico on Florida’s panhandle, which we called the Redneck Riviera. A red neck was common for me then, because (millennials will be shocked) water-resistant sunscreen hadn’t yet been invented. I swam in the morning and evening, with thick, pasty zinc oxide on my nose and cheeks, and a t-shirt over my swimsuit. In the middle of the day, I played cards and board games inside with Mom, Dad, and my brother and sister. 


Later I joined the swim team. They gave out ribbons to all six girls who swam each race, and I have a large collection of sixth-place ribbons. By the time I was a teenager, “swimming” was mostly sitting beside the pool.


For my 16th birthday, Mom asked me whether I wanted to invite friends to a party, and if so, what I wanted to do. I attended Indian Springs School at the time, and there I had a much more diverse group of friends than before.


“I want to have a swimming pool party at the country club,” I told her.


She looked at me sideways. “Whom would you invite?” she asked. 


I ticked off my close circle of girlfriends, ending with Lisa. Mom knew Lisa. She knew what Lisa looked like. Mom took a deep breath and said, “You cannot invite Lisa to a party at the country club.”


“Why not???” I demanded, knowing full well what she implied. 


Swimming became popular in the United States in the 1920s and 1930s, including among women. It was the introduction of women into the pools that led to the segregation. How could you have black men in the same pool with white women? The law changed in the late 1950s, and public pools could not operate unless they were desegregated. This change in law, however, did not mean that blacks and whites swam together. Instead, public pools were closed, filled in, abandoned. 


The small lake in front of my house today featured a high diving board in the 1930s. Today, the diving board is gone, the water is shallow, having been partially filled when a court demanded that it be desegregated. Across the country, after public pools were closed, many private pools and country club pools were built. These places typically restricted access to “members only.” In other words, white. The YMCA even figured out how to operate segregated pools: it did so in Montgomery until it was sued over this practice in 1970. Country clubs were still segregated in 1978, when I turned 16. I knew this, I knew that our club had no black members. But I didn’t realize Jim Crow laws were still so overtly a part of our lives. 


“I can’t invite Lisa to my pool, as my guest? That’s ridiculous!” I screamed at my mother.


Mom sighed and said, “I don’t disagree with your sentiment, but you would not be a good friend to Lisa if you invited her to the club. As soon as you started to enjoy yourselves, a man in charge would ask Lisa to leave. That would be very uncomfortable for everyone, especially Lisa.”


Mom went on to tell me that a black boy from Mobile, apparently a very talented tennis player, came to an invitational tennis tournament at the club not too long before, and the tennis pro in charge went up to him and explained that this was an invitational event and that he was not invited.


I felt sick to my stomach. How could this be so? Mom asked, “so, would you like a pool party without Lisa, or another party where she can be included?”


A party without Lisa?  Or be forced by bigots to go somewhere else just because my friend was black. I was outraged. Here it was, 1978! Segregation was supposed to be over. I wanted to do something! I wanted to picket. I wanted to boycott the place. I wanted to change things. But I was just one 16-year-old girl. I didn’t know what to do. Not then. “I don’t want a party at all, Mom. I don’t feel like celebrating.” 


I never told Lisa this story. 


 When you look around today, you might be inclined to say these problems are history. Country clubs now have black members. I have some African-American friends who not only swim, but also swim competitively, as part of triathlon races. Simone Manuel made history this summer by being the first African-American woman to win an individual gold medal in swimming. Have we done enough to change things?


If a child asks her father to teach her to swim, and his answer is “sure thing, honey, let’s start today,” the chances are the father is white. Most black fathers cannot swim. According to a study by the University of Memphis for USA Swimming, only three out of 10 African Americans can swim. And African-American children and adolescents are more than five times more likely to drown than their white peers because of limited swimming skills, according to the Centers for Disease Control and Prevention. For one thing, if they start to drown, most of the family members around them cannot possibly save them. 


So, when I learned about the mission of SwimRVA, I jumped on board. SwimRVA is a nonprofit organization whose mission is to elevate swimming in the Richmond region, making water safety and aquatic fitness more accessible to all. SwimRVA has set a goal to teach all second-graders in the region to swim, especially those in underserved communities. Recently, SwimRVA launched a program to teach children with autism to swim: such kids are drawn to water, but usually cannot swim. They especially are prone to drowning after wandering off from a safe environment. In fact, such accidental drowning accounted for 91 percent of deaths among children with autism spectrum disorder, according to the National Autism Association.


For months, now, I have worked on SwimRVA’s inaugural fundraising event, the Big Splash Bash, to be held on Saturday, Oct. 1, at the Tuckahoe Woman’s Club. It will be a special opportunity to support those who otherwise would not have a chance to learn to swim. We will have food and fun, a dunking booth, a photo booth, and some chances to win amazing raffle prizes. We also will be inducting members to the SwimRVA Hall of Inspiration: Robert Bobb, Whitney Hedgepeth, the inaugural 1962 team of the James River Swim Club, Marie Kelleher and Gloria Thompson. 


I hope you will join us for the fun. If you cannot attend, please consider a donation to the cause.  You can buy tickets or contribute here: http://www.swimrichmond.org/splashbash.htm.