I was asked that question recently at a patient advocacy forum. My immediate, knee-jerk reaction was “No.”
Upon reflection, however, the answer is more complex and nuanced.
I had responded initially “no” because of the way I am able to live my life. I was diagnosed with CLL 9-½ years ago. I’ve been treated twice, once in 2006 with CVP + R (cyclophosphamide [Cytoxan], vincristine [Oncovin], prednisone [Deltasone] and rituxamab [Rituxan]), then again in 2010 with FCR (fludarabine [Fludara], cyclophosphamide and rituximab). Since 2010, I haven’t needed treatment. The only pill I take is vitamin D3 when I remember. I continue to work as a communications consultant and a medical journalist. I travel when and where I want. I have visited more than a dozen countries since my original diagnosis.
Sounds like “no,” doesn’t it?
And yet, my CLL since 2006 has re-shaped my life in many ways.
It occupies a permanent sliver of space in my brain. There isn’t a day, an hour that goes by that I don’t think about my CLL. That doesn’t mean that I dwell on my condition. But it’s there. It’s a part of me. Always.
What else? There’s an element of urgency when planning activities. I mentioned travel. Now when I hesitate I think, “Perhaps I’d better take this trip, see this person…in case.” The “in case,” of course, is a relapse or something worse.
A dear colleague from my broadcasting days died suddenly of bladder cancer. He had asked about me at a recent awards ceremony. He had told my friend he thinks about me a lot. A vowed I would call him. I didn’t. Suddenly, he was diagnosed with his cancer. He spiraled downward quickly and died a few weeks later. I lost a precious opportunity to connect with an old friend. Could that happen to me?
So, I must think longer and harder about what will make me a better friend…in case.
My older brother has sold his home in easily accessible Los Angeles and is moving in February to a tiny, beautiful but hard-to-reach Colorado community. Will there be plenty of time and opportunities in the coming years to see each other? Or should I dash out to see him…in case?
I would love to become a grandmother one day. Will I get the chance? I’m almost 66. Neither of our sons is married. I think about being a Grandma a lot.
A LOT. The clock is ticking. I secretly urge them to hurry up…in case.
It’s “open season” for Medicare. This means choosing a supplemental health plan and Part D for some prescription drug coverage. I recently spent considerable time reviewing prescription options for the best coverage for ibrutinib (Imbruvica) or idelalisib (Zydelig) should I relapse and need those medications…in case. It turns out that no Part D plan is particularly good for these miracle oral drugs. Should I relapse and need them, I’ll pay a hefty deductible. So, I worry. Again, it’s a sliver in my thoughts, a permanent sliver.
I’ve been privileged for the past two years to interview doctors and patients about cancer in general and CLL in particular. It’s an honor. Evangelizing about patient empowerment also keeps CLL front and center. Every day, a CLL digest appears in my email. CLL, front and center.
When I think about life before CLL, it’s a blur. The memories, and there are countless good ones, should be as vivid before 2006 as after. But they are not. Because when the page turned that fateful July 4th weekend in 2006, my mental F-stop lens re-focused sharply on working around and/or beating the CLL.
CLL, indeed, has shaped many of my activities and thoughts these past 9+ years. Not every minute. Nothing bad. But it’s a permanently attached sidekick.
It’s better to know and acknowledge…in case.
I’d like to hear your thoughts about whether CLL defines and or has shaped you and if so, in what way. Do you compartmentalize it? If so, how? How have you turned adversity into a positive?
Andrew is the author of the new book The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis. He is a respected medical journalist and 15-year leukemia survivor. He founded healthtalk.com and patientpower.info and has hosted almost 3,000 online talk shows for patients with chronic conditions and cancers. Many of America's leading medical centers support ...