So many questions, so few answers. How was I diagnosed with a cancer associated with Agent Orange, mostly found in older men, as a 34-year old female (and potentially have had it for a couple of years)? Heart disease runs in our family – not leukemia. What did I do wrong that gave me this? So many questions run through your mind when you’re searching for answers, reasoning, something to make the diagnosis more palatable. Unfortunately, there are not many answers.
I found very little stories, personal accounts about HCL. The Hairy Cell Leukemia foundation has some patient stories; as I read through them, there are few around my age (2 of 21) or female (1 or 2 of 21) – HCL Patient Stories. One thing they all seemed to have in common is that they were all quickly diagnosed. I went through two agonizing months (still working full-time, which included travel 3-4 nights away from home) trying to find answers to the many questions. Agonizing not just for me, but my husband and our families.
There is always a choice you have in life – to be the victim or the survivor. This cancer is not supposed to be in me, based on statistics. I could choose to mope around and be sad that this diagnosis changes everything, but it really doesn’t. It’s a minor bump in the road we call life. I was preparing for a lymphoma diagnosis for a couple of weeks leading up to the appointment. I was told leukemia – I was not expecting that, and I actually thought it was worse than a lymphoma diagnosis (lymphoma concentrated area vs leukemia in the blood stream which is everywhere). Leukemia is apparently an interchangeable term with lymphoma, and HCL I’ve seen classified also as non-Hodgkin lymphoma, but I’ve also seen it as its own class within the LLS categories.
Thankfully, it’s only one week of a proven drug to put this into remission – you can never be cured, but can be managed. If it comes back, another round of chemo. If it does ever come back, I’m sure there will be a newer drug or way to treat out by then anyways.
Maybe my “Why Me” is to share my story for those diagnosed. Maybe it’s to bring people closer together. I cannot begin to tell you how many people I heard from that I hadn’t talked to in years, family reaching out and checking in on me on a daily basis, friends reaching out in the midst of their crazy lives, just to see how I’m doing. I hope my “Why Me” empowers others to take this condition head on, with a positive attitude, and new appreciation for life. They say you have a new appreciation for life after major life events, and I can agree wholeheartedly that this is so unbelievably true.