It all began with a phone call I received from my doctor's office requesting a visit a few days before Christmas in 2010. As ominous as that sounded, it was still a shock to hear the "c" word and realize that I had cancer. I had been diagnosed with Chronic Lymphocytic Leukemia; CLL for short, detected through a blood test taken during a routine physical.
My doctor led into it, not being awkward and beating around the bush. He used the medical platitudes often trotted out for chronic lymphomas in general, as in "this is the good cancer" and "you will likely die with this cancer, but not from this cancer." I just stared at him.
I could hear the word cancer reverberating around my head. I had brought a small notebook to take notes and had scrawled down "chronic lymphocytic leukemia," which was fortunate as it wasn't long after I got home that the numbness wore off and for one horrible moment I had forgotten the actual name of the cancer.
I spent a few, frantic minutes doing online searches which brought me to sites warning of symptoms and some worrisome survival predictions. I started to pick up some of the basics of the disease, like the vast majority of patients are monitored for very long periods of time before treatment (or in between treatments) and encouragingly, many patients never need treatment. However, the stress was unbelievable, mostly because I did not yet know enough to really be able to interpret what was going on.
My doctor had referred me to an oncologist/hematologist and the appointment finally happened in February 2011. He was extremely casual and dismissive, saying my numbers were quite low. I got the impression I was wasting his time being there, although he took the opportunity to acquaint me with his passion for long distance cycling.
The visit was surreal. When I was leaving, having learned nothing, I asked him what the next step was. He was confused, "what do you mean?" he asked. When would I have additional tests conducted, or see him again - a few months? A few years?
"I don't think we need to see you again anytime soon," he said. He immediately started talking to his office staff and I was dismissed. I walked out empty handed and unsettled, because none of this fit with what my online research said.
I followed up with my own doctor the following week, increasingly determined that this was not right, and he completely agreed. I was referred to a second oncologist/hematologist in a cancer centre, one who specializes in CLL. This time, I fell into the lap of angels. I was put on a schedule of follow-up visits for monitoring every four months, a process called "watchful waiting" (aka W&W) -- or as some patients call it, "watch and worry."
My numbers steadily deteriorated and I started to have issues with exhaustion; it was time for treatment. I received chemotherapy in 2013, three years after I was diagnosed. This seems to have done the trick -- I am back to being monitored every four months. Considering this cancer is currently "incurable," I have had the best possible outcome so far.
I have now met and networked with a large number of CLL patients. Sadly I've realized that my story of leaving the doctor's office empty handed was very common. I also came to understand that many hematologists see only a handful of CLL patients every year and it is not unusual to have the specialists not actually know enough about your cancer.
CLL, while a rare disease, is the most common adult leukemia -- and it is incurable. You need to know the right questions to ask your medical team, as an equal partner in your fight against this cancer. It's important to have resources to help you understand what is going on with your care. Since my diagnosis, resources have surfaced that would have cut months out of my stress and research.
There is a new resource called My CLL Compass, to help patients have informed discussions with their physicians, allowing them to play an active role in choosing the right treatment option.
The website includes an interactive quiz to help patients identity lifestyle factors, other health conditions and personal priorities that may impact treatment decisions. It also includes information for caregivers, which I feel is important since many, like my husband, may also go through significant distress and face unique challenges as they help their loved one.
I'm thankful for all of the support I've received along the way. It's important to be informed; education is power as one goes through the cancer journey.
To learn more about My CLL Compass, visit www.mycllcompass.ca.
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