My Story: Watching, Waiting and Worrying

I was diagnosed with Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL) in August 2007.  I remember receiving the call at work.   I had had some blood work done by a local hematologist to see what could be causing the numerous enlarged lymph nodes along both sides of my neck.   I wasn’t too worried about them, I had had one of the enlarged nodes in my neck for as long as I could remember – since back when I was a teenager.  I was now 44 years old and was tired most of the time, and I seemed to catch about every illness that was going around at work.  I thought that was just the result of a long commute and a stressful job.

When the doctor told me that I had a blood cancer that wasn’t curable at this time but was considered treatable, I wasn’t sure what to think.  The fact that it was cancer and incurable couldn’t be good, I thought, but here the doctor was delivering this news on the phone and saying it was considered treatable, similar to diabetes, so could it really be that bad?

As we did more and more testing and I learned more about the cancer, I learned that my cancer was a slow moving cancer which meant I had time to consider my options.  While with most cancers early detection and treatment gives you the best chance of survival, that is not always the case with CLL/SLL.  Watching and waiting is often the best course of action.

I have now been on Watch and Wait for almost 7 years and sometimes it is hard.   Most people on it call it Watch, Wait and Worry.    It can be difficult to not take action to get rid of the cancer, while watching it slowly progress.   There are always worries that I’ve waited too long to initiate treatment, and that it will be harder to endure the treatment when my time comes.   People who know of my diagnosis can’t understand why I’m not actively getting treatment.     I attend a local support group where I’ve been able to connect with other people with a similar diagnosis, and have received valuable input on how others have dealt with their cancer.  I’ve also been able to help other newly diagnosed individuals through the support group and also have made some very good friends.

I try to focus on the things I can control with respect to my health like eating better, exercising, getting plenty of rest, avoiding people who are ill, and keeping up to date on the latest CLL/SLL breakthroughs.  There are so many promising treatments being trialed now, that my hopes are that I can stay healthy long enough that one of the new and improved treatment plans will be available for me when my time comes.

I’ve used several of the services LLS offers, and have referred several people to the LLS site, and to the resource line.   Because I have found so much value in the LLS work and services, I have signed up to be an advocate where I am in contact with my congressional members to gain their support for bills that benefit people with blood cancers.   Last year, I also participated in my first Light the Night Walk as a way of raising additional funds for LLS.    I’m grateful LLS is here for support.

-Written by Theresa McCabe. Light The Night Participant and CLL/SLL Survivor for 6+ years

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