After fundraising and walking in my first Light the Night walk for the Leukemia & Lymphoma Society, I must say that I have mixed emotions. When we went to check-in and pick up our t-shirts and lanterns a few days before the walk, I realized that I did not fit into any of the three categories offered: Supporter, In Memory, or Survivor.
As a person that has chronic myelogenous leukemia, I want nothing more than to be what I consider a Survivor. To me, a survivor is a person that has faced cancer, endured treatment and succeeded in kicking cancer’s butt to the curb. To me, “survivor” implies that I have faced the devil and won; I have completed my treatment and come out on the other side; the Survivor’s side.
Now, I do not wish to sound ungrateful, since I am very fortunate to have treatment available to me which allows me to continue to survive, but that treatment is not a cure; it is a daily dose of really potent medication, which comes with its’ own host of side effects and risks, and is not the be-all-end-all. Not to mention the fact that my type of cancer, CML, can stop responding to the current treatment, whenever it chooses to rear its’ ugly head. I am still holding out for a “true” cure; I am holding out and helping to raise funds so that I too, will someday be able to carry the “survivor” lantern and truly be “cured”; a true Survivor.
Until then, I consider myself a “Fighter”! I fight every single day to keep my CML under control. This past year, I have gone from an undetectable state, back to a detectable state, with numbers higher than what is considered “optimal”; what this means is that I need to start fighting a little harder. I need to be more aggressive in my treatment, in order to try and turn this upward trend around.
Thus far, the aggressive treatment has resulted in a case of pneumonia and pleural effusion, forcing me to abandon all treatment for seven days; always a scary, but necessary option. I will just have to wait until my next PCR to see how this complication has affected the burden of leukemic cells in my body. So, needless to say, being a survivor in my mind means not having to be monitored every three months, and in treatment for the rest of my life; always making adjustments to the treatment, based upon my three month test results.
After pondering my realization over night, I decided that I was not the only person in this boat; I am certain that there are many other walkers that are still in treatment, fighting every day. Since I feel that this walk exists to raise money for research for a cure, shouldn't current patients be represented by their own t-shirts? Shouldn't other walkers be able to see that their donations have cured many, but that there are many more, that are still praying and hoping for a cure?
Those of us with chronic leukemia and those fighting every day in treatment for other type of Leukemia and Lymphoma are not yet “Survivor’s”. Fact of the matter is, some of us will make it and some of us will not, and to be lumped into the Survivor category just doesn't seem quite right. Shouldn't we be represented as the Fighters that we currently are?
Anyway, I went to the t-shirt shop and added (Fighter) to my t-shirt, right underneath Survivor. Despite having (Fighter) on my t-shirt, I was still bombarded by other “white lantern-ed” walkers. Guess what their first question to me was, over and over and over? Their first question to me was, “How far out are you?” Of course, I had to reply, “I am not out, yet; I am still fighting. How far out are you?” I have to tell you that the look of joy and accomplishment on their faces, made me want a cure more than ever. I was so very happy for each and every one of them, but I have to admit that I was a bit envious, too. By the end of the night, I was actually weary of showing my “happy” face, and trying really hard not to let the fact that my CML is not in a great place at the moment, dampen my spirits.
Of course, looking around I was reminded how truly grateful I am, that I was still here surviving, and not being represented by a gold lantern (in memory), but there is a place in my heart that remembers all of those we have lost to CML, just this past year alone. I was walking as a Survivor, and my husband was carrying a Gold Lantern for Cheryl Hay, Michael Cranford, Millie and Danny Eiler, just to name a few. I love what Light the Night represents, but I also feel as though those of us that are still fighting the good fight, need to have their very own category.
What do you think?
I agree totally. I don't feel like a Survivor. However I do like your Survivor /fighter status!ReplyDelete
Whether we feel like it or not, we are all survivors from the day we are diagnosed. The fact that we who are treated with oral medication for CML will be in treatment every day does make us different from those survivors who are treated and come out the other side "cancer free.' However, we all have something in common - that feeling of "living on the edge" is experienced even by those who have been deemed "cured" believe it or not. We all live with the fear that the monster will rear its ugly and vicious head again. Many "cured" friends of mine have found themselves back in the fight and some have lost their lives. So we all are survivors together, regardless of whether we are in treatment or not. We live and we breathe. We have a new perspective. We give back. We give thanks.ReplyDelete
I agree 100% "fighter and soon to be survivor" that's the best way to represent me and I would wear that shirt proud!!ReplyDelete
I agree so much! This will be my 3rd Light the Night Walk. Last year, through most of the walk, I was near tears thinking about those we have lost. I have CML. My shirts say "Survivor," but I only feel like a survivor in that my current medication is currently effective, though it does not bring my counts to 0 (I have been told that as long as my counts are below 1%, I am okay). I am now on my 3rd medicine since being diagnosed in May 2006. I am going in for check ups every 3 months. So, no, I don't feel like a survivor. Thank you for sharing! It is so good to know we are not alone in our battle. Thank you for introducing the Fighter idea! I hope it takes off!ReplyDelete