Article previously published in the Cutaneous Lymphoma Foundation's Forum Spring 2011 newsletter.
“Sit here” the nurse said as she pointed to a chair against the wall next to the laboratory sink. My daughter, who was with me, found another chair in the small room, sat down and tried to get comfortable. The nurse looked over my file, took my blood pressure and began to ask me routine questions, like “How are you doing?” She was kind, but I was ready to get on with why I was there.
I found myself nodding in response to the nurse as a matter of routine. I now knew all the answers to her questions. I had experience. Lately I had seen several doctors trying to find an answer for a series of health issues. I was now seeing a hematologist/oncologist because I had a high platelet count and, during the course of questioning, I mentioned: “Oh, by the way, I have this rash on my, well – my derriere!” Surprised at this, the doctor asked to see it. I shyly pulled down the corner of my pants to reveal a bright red, scaly patch and added: “Would you like to see another one that makes a matching pair?”
It was his intense look at my matching pair that made me sense that these two red patches I had always thought were eczema might not be eczema after all. He left the room and came back a few minutes later to say that he had made a call to a dermatologist who would be calling me to make an appointment for a biopsy. Within five minutes my phone rang. I was both delighted to know that I had found a really good doctor who followed through and alarmed that the doctor’s office was calling so quickly.
Very soon after the diagnosis of cutaneous T-cell lymphoma (CTCL), I found myself falling into a ‘pity party’ made up of one: me! I researched CTCL and didn’t focus on things like it’s indolent, and there’s only a 10% chance of advancement. Rather, I focused on the fact that I had cancer and that it is not curable. I wanted to stay in my pity party.
However, through my research, I found the Cutaneous Lymphoma Foundation and learned about an educational forum being held in Scottsdale, AZ. I could not believe my good fortune. I attended the forum, not knowing just how good it would turn out to be. I found solace and comfort there and, importantly, I found others who were experiencing similar circumstances. I asked questions and, although I did not fully understand the answers, I was learning. I found this experience to be one of the most valuable in my journey as I learned more than I could possibly have gathered on my own. And, I found a new doctor! Dr. Clara Curiel was the specialist speaking at the forum, and she made such an impression on me that I quickly made an appointment with her (even though she practices in Tucson, which is 125 miles away from where I live).
Through the Foundation’s website I joined the CTCL-MF listserv and, through it, I learn a great deal from posts by many other diagnosed people worldwide who are experiencing many of the same feelings and symptoms that I am experiencing. I read it faithfully every day.
With a desire to feel better and get out of my pity party concerning my diagnosis with CTCL, I actually began to feel adventurous and decided to take up hiking again – something I used to love to do. So, I called up my girlfriend hiker, and we began hiking regularly.
Beginning to be consistent with my hikes, it was not good enough that I just hiked – no, I needed a goal. So, my first goal, which was in year two of my diagnosis, was to hike Havasupai Falls on the western end of the Grand Canyon – a 10 mile hike in and a 10 mile hike out. What a beautiful and wonderful experience. Well worth the hike.
Now, with this goal behind me, and looking ahead, I needed something new to spur me on. So, my girlfriend and I decided we would hike from the North Rim to the South Rim of the Grand Canyon. We decided to break up the hike in a three- night stay at camping sites within the canyon including one night at Phantom Ranch. Excitedly, I made the reservations one year in advance in September 2009 to accomplish the hike in September 2010. This would put me in year three of diagnosis and within weeks of my 60th birthday! I would have a year to train.
Finally, it was September 7, 2010: D-Day. Four ladies left Phoenix for the adventure of a lifetime. Our average age was 62 and we received great joy out of sharing this fact with anybody who said to us: “You are doing what?” We spent the first night on the North Rim and early the next morning started our ascent into the incredibly expansive Grand Canyon, each of us carrying a pack that weighed an average of 28 lbs. Four days later we ascended out of the Canyon to the South Rim – in good shape, too, except for a few bandaged toes and lots of exhaustion. We did it!
That experience was the most grueling and difficult physical endeavor of my life but, without a doubt, one of the most gratifying, too.
Bouts of pity still crop up especially when I see my ‘cheeks’ in the mirror, or now seeing new larger areas on my neck and chest. To know that this is cancer is discouraging. I have decided, however, through my faith in a Creator bigger than me, that I can choose what to think on and so I have made a decision to dwell on what is good and trustworthy and live my life fully alive. John Eldredge, noted author says, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive and go do that because what the world needs is people who have come alive.”
I choose to live, and I hope you are choosing to live, too!
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.