“Well I won’t back down, no I won’t back down
You can stand me up at the gates of hell
But I won’t back down…
…Well I know what’s right, I got just one life,
In a world that keeps on pushin’ me around-
I’ll stand my ground and I won’t back down”
Thanks to the recent snowstorm here in Atlanta I was homebound for several days. What’s worse is that the same 4 inches of ice which made it too treacherous for driving was also bad for running. Normally I will journey out in all sorts of weather because I enjoy the adventure of running a few miles while everyone else may be huddled indoors. I’m a firm believer in the theory that there’s no such thing as bad weather, just inappropriate clothing. However this time, the risk of injury from the ice outweighed any potential adventure. After a day or so of watching the never-ending news feed of road and school closings on TV I got more than a bit restless. I had to do something or I was going to go crazy. Finally, I put my bike up on the trainer and grabbed the iPod. Normally I am not much of a headphone wearer. I do not run with them out in the world because I like to be aware and part of my surroundings, rather than isolated from them. In this case though, a little upbeat music provided a good rhythm for motivation and distraction. On DVD I also have 7 years’ worth of Tour De France highlights from 1999-2005; the years that Lance Armstrong won them. I popped in the one from 2000. Now, watching the cyclists on the screen gave me something to look at and also helped to keep me moving. I used to dread sitting on an exercise bike but this was turning out to be rather fun.
As I watched and peddled, I recalled where I had been in July of 2000 (The TdF is always in July). I was in the middle of chemo treatments and feeling pretty crappy. I had returned to working full time which did restore a bit of normalcy back in my life.
One weekend in September I made a most memorable 3 day business trip to Austin.
A now famous Austinite, Lance Armstrong had just released his book, It’s Not About the Bike which turned out to be a huge morale booster for me. Finally, I had found a cancer survivor who had encountered similar challenges and issues I faced. I was a triathlete; I swam, biked and ran for fun. I ate healthy, did all the right things. Sure, I wasn’t a professional, but it was a very important aspect of my life. Like Lance, I was pretty much the poster child for being healthy. But unlike Lance I found myself surrounded by a medical community that was unconcerned about returning me to racing. Obviously, I didn’t fit neatly into any of the preconceived categories the medical illuminati had designated for the “typical” breast cancer patient. I had to constantly battle my treatment team to make them aware that I was not the average patient. I don’t think many of my doctors had ever encountered a patient like me before. I asked questions like; how much would I be able to run or swim during chemo? What type of, if any, permanent damage to my swimming motion would the lymph node dissection impose? I was more concerned with whether or not I was going to be able to participate in an ironman triathlon in the future and no one around me seemed to get it.
Preserving my vanity seemed to trump saving my life.
Everyone seemed more concerned with how I might look than how I might function after I recovered from cancer, IF I even recovered. Uncomfortable looks and shoulder shrugs were the only answers I got. I wanted to fight like hell to get my normal life back and all I had been offered were ways to cover up and conceal my illness. Makeup, wigs, breast implants and cutesy pink ribbons are not the tools of conquest against cancer. In fact, they are worse than useless and irrelevant items for someone who cared more about thriving than facades.
They were so busy telling me what I wasn’t going to be able to do anymore no one could tell me what I could do.
One thing I was given was a list of “lymphedema prevention guidelines” which read like a litany of insanely overprotective nonsense.
Here is what I was told:
1. Avoid all types of trauma; cuts, scrapes, bruises, burns, including sun burns, sports injuries, insect bites, all animal bites and scratches and forceful impact.
2. Avoid pushing, pulling or lifting with the affected limb; Do not lift anything over 15 pounds, less if you are out of shape or the weather is hot and humid.
3. Protect the affected limb from weather extremes;
a. In hot weather seek air conditioning and keep the limb cool.
a. In hot weather seek air conditioning and keep the limb cool.
b. In cold weather seek central heating.
If you must go out, have
the at risk limb well bundled, but not sweaty.
the at risk limb well bundled, but not sweaty.
4. Avoid any repetitive movements, especially those against
Here is what I heard:
1. Do nothing.
2. Do nothing.
3. Stay inside
4. Do nothing
I don’t know what idiot wrote these contradictory guidelines, but apparently once diagnosed with breast cancer the only activities deemed suitable might include watching television while eating pink bon bons. Apparently, having cancer meant that now I was to wrap myself in cotton and live in a bubble in order to avoid sweating or risking any chance that I might get bumped, scratched or in any way exposed to the great outdoors.
Faithfully following these guidelines meant giving up living.
There was nothing else for me to do but ignore them.
I finally found some answers in Lance’s book and from some of the people involved in his foundation. After spending a long, queasy night in the bathroom reading the book in between bouts of puking, my first order of business for the next morning was to call the Lance Armstrong Foundation. (Now Livestrong.org)
I just knew that someone there would have some information about the types of things I wanted to know. Who was doing research about exercise during treatment, through recovery and beyond? What was LAF doing to help promote this? How could I participate? Sure enough, I was put in touch with a wonderful volunteer named Laura. I started asking my questions and right away I could tell that she shared my enthusiasm for the concerns I had and offered to meet with me when I visited Austin.
I flew to Austin on Continental Airlines which means that no matter where your flight originates, you will mostly likely change planes via their hub in Houston. Once onboard I noticed that the flight attendants were particularly attentive. Not a single one passed my seat without pausing to ask me if I needed anything.
Flight attendant: “Would you like a blanket”?
Me: “No, but thank you.”
Five minutes later;
Different flight attendant: “How about a pillow”?
Me: I’m fine, thanks for asking though”.
Ten minutes later;
Third flight attendant: “Would you like some water”?
Me: (not wanting to seem ungrateful for all the attention) “Sure, some water would be nice”.
Flight Attendant: “Would you like some lemon in that”?
Me: “Uh, sure, that would be great. Thanks”.
Ten more minutes;
Original flight attendant: “Are you warm enough? Can I get you anything else”?
Are you sure you don’t want a blanket”?
Me: I’m doing great, thank you so much”.
On and on it went for the duration of the flight. They must have refilled my water every time they passed my seat so finally I had to get up to use the bathroom. I unbuckled my seatbelt and was on my way to the back of the plane when I felt someone touch my shoulder.
The flight attendant was handing me a hot washrag, the ones they sometimes give out in the first class cabins before meals. As she handed it to me she said, “Here, this is for your face, in case you need it, when you are done”.
There was a very pronounced, split second of brain lag between pondering why it was that my face would need to be washed after peeing until the eureka moment hit me-She thinks I got up to puke!
Here I was, bald and on a plane to Houston-home of the world famous M.D. Anderson Cancer Center.
It further occurred to me that since Continental hubs there that all of their crews are probably accustomed to seeing cancer patients traveling there for treatment. Not sure if it is official company policy but they obviously were working very hard to make sure my needs were attended to. I wanted to tell them that Houston was not my final destination and that, bald head aside, I was feeling just fine, this week. I decided against that strategy because being ill had taught me to be gracious about accepting assistance even when I didn’t need it. I had discovered that when you are sick, it makes others feel good if you allow them to help you.
I played along all the way to Houston.
I made my way to Austin and attended business meetings on Friday evening and part of Saturday morning. Saturday afternoon, as arranged, Laura picked me up from my hotel room to take me out for lunch. Laura was an energetic, crazy ex-pat New Orleans Cajun living in Austin. She had promised to show me some real Austin lifestyle and took me to the Shoal Creek Saloon. Apparently there are a great number of ex-pat crazy Cajun’s in Austin because this place not only catered to their palettes, but also ensured that LSU and New Orleans Saint’s football team programming took priority. This last discovery was not incidental. As we entered the saloon, all eyes turned to the opened door as we stepped in. I had grown accustomed to people staring at my bald head in public and mistakenly believed it was just another one of those moments. Once we were seated however, I looked up at the big screen T.V. and noticed that the LSU game was starting and that they were playing against Auburn University. Although not much of a football fan, I just happened to be wearing an Auburn University sweatshirt I had been given as a gift. No wonder they were staring!
Lunch was about to get interesting! We chowed down on mudbugs, jambalaya and beer. Our chat about research and programs that Lance’s foundation was funding was periodically punctuated by loud, boisterous cheering anytime LSU made progress. Suddenly I found myself duty bound by my sweatshirt to cheer on Auburn for their gains. I stood up and cheered wildly for an Auburn touchdown and that’s when the trash talk started. Back and forth, on and on…Laura, and the whole restaurant engaged me, but not in a mean or vicious way. It was fun. One guy seated to my left, seemed to really enjoy playfully needling me about Auburn as I played the role of the dedicated fan. He smiled warmly throughout the first half even while he had been giving me a hard time and when half time rolled around and it quieted down he bought me a beer. I thanked him and it became obvious he wanted to talk. He gestured to my head and said, “I see you got something going on there”. He went on, “My mom went around bald while she was treated for cancer and when I was a little kid it used to embarrass me. When I got older though, I learned to really admire her for what she went through and how she handled it”. His eyes were beginning to water when he said, “She was my hero”.
I gave him a hug and thanked him for sharing his story, and for reinforcing my decision to never hide my illness.
I thought about how I would have missed out on so many spontaneous acts of love, support and encouragement, from so many people if I had hidden things by wearing a wig. Being honest and open about cancer created opportunities for people to share very personal and intimate moments with me. More importantly, I hoped that by rejecting the frivolous expectations the medical community put upon female cancer survivors, it might lead to a better focus on what really mattered. Not sure what it will take frankly. Perhaps I should bring my bicycle to a dramatic, skidding stop at the front doors of M. D. Anderson and all of the other comprehensive cancer centers and sling mud in every direction.
Maybe someone will notice.
Being healthy and fully engaged in living is what counts. For me, being alive meant being active. Cancer and the medical community had conspired against me in that regard and it infuriated me. My solution was to stubbornly dig in and prove to the world that having cancer was not going turn me into a victim. The urge to defy their expectations of failure drove me to become even more, not less than I was before.
Survival may mean different things to different people but at the end of the day, what really matters is how you spent that day.
Survival from the sidelines was not in my playbook.
As it turned out, Auburn won the game that day. The entire restaurant had been rooting against my team but it hadn’t mattered. I was used to those kinds of odds.