I should preface this by saying I hate math and nor have I ever been very good at it. The only type of math I have ever excelled in was percentages and that has more to do with my shopping habit than anything else. My basic understanding of percentages and statistical information had little to no bearing on my ability to fully grasp the array of medical data associated with cancer, more specifically Hodgkins Lymphoma. I knew in the beginning that I should pay virtually no attention to these statics, because ultimately every case is unique and more importantly I often find that I am an anomaly.
Case in point, at the time of my biopsies (pre diagnosis) I was told that there was only a 5% chance that I had anything other than Sarcoid. Well that 5% chance ranked me among the 0.2% of men and women diagnosed with Hodgkin’s Lymphoma in their lifetime. Just so we’re clear, 2.7 out of 100,000 people are diagnosed, which equates to roughly a little over 9,000 new cases each year. 31% of those cases are people between the ages of 24-34 and a slight majority of them are men. Hodgkin’s Lymphoma is extremely rare and is ranked 23 among common cancers prevalent in the US and Europe. So talk about odds, I am 1 of the 9,190 people in 2014 diagnosed with this form of cancer. While Hodgkin’s is considered the “good kind” of cancer, if there is such a thing, that is usually cured by the front line of treatment which is generally ABVD. In terms of percentages that means that 80-90% of people are cured by this first line of therapy. Those numbers are outstanding and reassuring for most, considering so few cancers have similar success rates. I unfortunately discovered, after 4 cycles (8 treatments) of ABVD, that I am one of the rare 10-20% who do not respond to front line chemotherapy efforts. My early PET (after 2 cycles) scan showed a 98% response to treatment, meaning that the chemo had successfully killed my 4 inch tumor in my chest and the few other nodules in that area as well as the majority of the sites impacted in my neck. However, my mid PET (after 4 cycles) showed a slight uptake in one section of my neck that was initially there, but disappeared in the early version; which ultimately meant that ABVD was only partially working and would not keep my Hodgkins at bay. This made me refractory, one of the few who need a different modality of treatment. And suddenly Hodgkin’s didn’t quite seem so “good” to me.
As one of the lucky 10% percent who would have to undergo more rigorous treatment, I had to regroup and develop a new game plan for my minority status. I was already abnormal in the sense that I had Hodgkin’s in the first place, I was female, and that I had very little side effects from chemo the first time. While my hair thinned early on and I chose to shave it, it actually grew during chemo. The Red Devil (Adriamyacin) never managed to take out my brows or lashes. I never once got sick with treatment, while I never felt good I never really felt bad either. I am one of the 33% who can taste Saline when it is administered through my port. And apparently my happy disposition is rare to many too, who often comment on how my attitude is so remarkable. While I learned to accept all of my other rarities, this refractory statistic was bit more difficult. It was really the first time throughout this entire experience where I felt discouraged and truthfully crushing disappointment. So I took the weekend to shake it off and prepare for my next steps, which include salvage chemotherapy (ICE), high dose chemo (BEAM) and an autologous stem cell transplant (CRAZY).
So here I am a statistical anomaly, who doesn’t plan on paying attention to any of the statistics as I move through this process, because clearly they rarely apply to me. And to be honest, I still hate math. Although I do occasionally wonder if with my odds I should try playing the lottery!