CLL Patients Belong to the Lymphoma Community, Too. Geoff Grubbs Shares His Story
The first signs of trouble occurred four years ago when my primary care provider started asking if I had been sick recently because my white blood cell counts were high. My answer then and over the next two years was always “No, I feel fine.” Then she called after a routine physical and said that my white blood cell counts were well out of range and said the words I didn’t want to hear: “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 trim, 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.
Two years after diagnosis I now know my leukemia isn’t aggressive, thankfully; my white blood cell counts are climbing but not at an alarming rate. It is not causing me major physical problems. But I need to watch it because CLL is usually progressive and can suddenly change course, so I am tested every six months. At the moment, this is purely a quality-of-life issue for me. I get sick more frequently than I used to, and stay sick longer than before. I still go out and do things; I stay really busy and travel. 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 and some die from CLL or its complications. But 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 it “watch and wait,” and some CLL patients call it “watch and worry.” I think it is more “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 cell lymphoma (SLL), a form of non-Hodgkins 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 was given a matching grant for CLL research so every dollar people donated to LRF for CLL research has been matched dollar for dollar. LRF has funded over $2.6 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 sometime down the road. We need better treatments and better yet, a cure.
I think LRF is doing a great job of connecting to the CLL community by reaching out through their website and educational programs. I recommend that patients check out their new disease-specific website www.FocusOnCLL.org and get involved with LRF, either through the national organization or through a local chapter. LRF is guided by a Scientific Advisory Board that includes top CLL experts from all across the country. The experts work collaboratively to make sure that research dollars go to the right place. LRF also hosts Ask the Doctor programs and sponsors terrific educational forums.
One LRF event I particularly like is the North American Educational Forum held each year. Top experts in all kinds of lymphomas are there and a session focused on CLL/SLL is presented. This Forum is very well attended, and I love meeting other CLL patients and learning the latest about the frontiers of CLL research. When you become involved with LRF, you are supporting CLL research and gaining access to LRF’s educational materials, pure scientific brainpower, and strong commitment to CLL. It’s a wonderful organization.
Updated: February 15, 2012