A Profile of Hope: Geoff's Story
In Geoff's own words
In 2009 my primary care provider called after a routine physical and shocked me with these words: "Your white blood cell counts have been rising for several years and are now much higher than normal. I'm referring you to a hematologist/oncologist and I want you to go as soon as you can." Three weeks later I was diagnosed with cancer of the blood, chronic lymphocytic leukemia (CLL).
I felt scared, disoriented, and very confused because I was completely asymptomatic. I'm active, I do cardio and lift weights, I eat right, I'm happy. And then to get the phone call with the bad news - it was completely impossible to get my mind around.
My wife has been extremely supportive and stayed with me every step of the way. One of the best things we did was to share the news with our children in real time as events unfolded. They were sixteen and nineteen years old at the time so we knew that they could handle it. We also shared openly with close friends, but sharing with colleagues at work required much more thought. I needed support; emotionally I was very, very lost. I didn't know what my prognosis was and whether I was going to live or die or be somewhere in between. It was hard at first because once you say you have cancer people look at you differently. The more I thought about it, though, the more I came to see that having this kind of cancer is part of who I am now. It's a piece of my identity, but it does not make me damaged goods.
Nearly four years after diagnosis I now know my leukemia isn't aggressive; my white blood cell counts are climbing but not at an alarming rate. However, after nearly a year of sinus infections that wouldn't clear, an immunologist at Johns Hopkins diagnosed general failure of my immune system. It's permanent and is probably caused by my CLL. But there's a bright side: I now get monthly infusions of antibodies drawn from the blood supply and this immune system therapy (which is not chemo) works like a charm for me. My infections have completely cleared and I feel better than I have in years. Through it all, I have realized that you don't lose your life just because it changes.
CLL patients have too many white blood cells in various forms and the cells live far longer than they should. CLL is not curable yet but it's treatable. When symptoms become serious, treatments can help; sometimes patients go into remission for long periods of time. Some patients never need treatment. For early stage patients like me, there is no advantage to go in for treatment if the symptoms aren't bad. Why subject yourself to chemicals for no advantage, especially if you feel fine? The doctors call this approach "watch and wait," and some CLL patients call it "watch and worry." I like to think of it more as "watch and live a life."
Leukemia is in the name of our disease so many CLL patients don't realize that CLL is clinically identical to small lymphocytic lymphoma (SLL), a form of non-Hodgkin lymphoma. We CLLers are lymphoma patients, too.
At first there is a real disconnect when new CLL patients hear people talk about the Lymphoma Research Foundation (LRF), but the fact is that LRF is one of the leading research funding organizations focused specifically on CLL/SLL. LRF has funded over $3 million in CLL research since 2007. Research like this is incredibly important to every CLL patient in remission and to everyone like me who feels fine now but will likely need treatment for the disease down the road. We need better treatments and better yet, a cure.
To submit your own story of hope, please contact Sam Rogers at firstname.lastname@example.org.