Today’s post comes to us courtesy of Katie Foy. Six years ago, Katie was diagnosed with chronic lymphocytic leukemia, or CLL. Since that time, she has mostly been on the “watch and wait” treatment plan. Katie tells us what it’s like to sit back and watch your disease progress, as well as how joining LLS’ Stanford Support Group has helped with the process. Read on for her story!
After six years of “watch and wait,” I started my first cycle of chemo on January 4th, 2011. Today, after only two cycles on FCR, I feel great.
I was diagnosed with CLL about six years ago, at the age of 43. I was very young to be diagnosed with CLL; as most people who are diagnosed are aged 60 or older. Additionally, men are more likely to be diagnosed than women. When I was first diagnosed, my running joke was, if I had to beat the odds, why couldn’t it be in Vegas? Why did it have to be with leukemia?
At the first meeting with my oncologist/hematologist, I was told that I would be in “watch and wait” meaning we would watch the progression of the disease and wait for worsening symptoms to start treatment. Watch and wait is a surreal experience. Your friends know you have leukemia, but don’t understand why you aren’t getting treatment. I had one friend actually express anger toward me, as she felt I was not being aggressive enough in the management of my CLL. In the meantime, it’s very hard to watch the progression of your disease, knowing that eventually the symptoms will worsen to the point that you will need to start treatment. I was literally watching the progression of my disease – knowing that one day my symptoms would be so bad that chemotherapy was inevitable. On top of that, you are dealing with the psychological impact of knowing that you have a shortened life expectancy due to the CLL.
However, the nice thing about watch and wait is I was really able to educate myself on CLL. I read all the pamphlets from The Leukemia & Lymhpoma Society, joined various CLL websites, did research online, and attended LLS educational seminars and the yearly ASH updates.
Many of my friends have been inspired to join Team In Training in my honor. My friends Holly and Jere ran the San Diego marathon, and Jere is now training for a triathlon. (She’s crazy!)
Along the way, I found the LLS support group at Stanford. For the last six years, I have gone to this group once a month. I have learned so much, and it has been nice to be available for newly diagnosed people. The group’s leaders, Anne and Suzanne, are very knowledgeable, and Suzanne can actually answer questions regarding certain drugs or blood test results. It’s been a nice place to go and talk about the impact that CLL and watch and wait have had on my life, and to have people support and understand me.