To Tell or Not to Tell with CLL

I am headed down to Houston today to start my clinical trial at MD Anderson. . .

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I am headed down to Houston today to start my clinical trial at MD Anderson. My kids and friends and some family members don’t know that I have chronic lymphocytic leukemia (diagnosed 2.5 years ago, treatment naive as of today, but not tomorrow!). I keep telling them that we have a new client in Texas, which is actually true, but not the reason I am traveling there so frequently.

I have been diagnosed with a TP53 mutation in my CLL cells, which puts me into the high-risk category—high-risk meaning you have a greater chance of treatment failure, relapse, and of course, dying earlier. It’s not the news anyone wants to hear.

I have been fortunate to be selected to participate in the new, promising ibrutinib + venetoclax trial down at MDA. I am grateful and very hopeful that it will put a big pause, maybe even a hard stop, on my disease. But it’s a process, and one that unfolds gradually, so even if I have great results—you never know for how long you will enjoy the respite.

What I can’t determine is if I should tell my kids or not. They are 16, 15 and 12, and keep in mind that I’ve already had breast cancer (back when they were 4, 2 and 5 mos!). I was fortunate, it was caught early, and 99% of it was DCIS, which is non-invasive. I was considered a surgical cure after a TRAM flap with double mastectomy. Lots of healing time was needed, but no additional treatments, no chemo, no radiation.

We haven’t told the kids for a variety of reasons: 1) I don’t seem different or ill yet; 2) I don’t want them to worry about me, I want them to focus on school, friends, etc.; 3) Since this is a slow-growing cancer, I figure there will be lots of time to tell them if my health starts to turn for the worse; 4) they are already paranoid about getting cancer due to my earlier diagnosis, and I don’t want to terrify them.

As far as telling friends, I don’t want to be “that topic” that everyone is discussing at lunches and dinners. Have you seen her? How does she look? How “bad” is it? I don’t want to have to talk about it all the time. I don’t want to have to keep a bunch of people updated on my day-to-day health. I don’t want a blog that I email out to friends so everyone can stay informed and try to rally my spirits.

And yet, it is stressful to act like nothing is going on, like everything is perfectly normal. It’s a big secret to keep and I’m not sure if I should continue keeping it on the down-low, or if it’s time to open up. Time will tell. It’s time to drive to the airport.

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