My daughter, Cecilia, was diagnosed with acute lymphocytic leukemia (ALL) at the tender age of three, and just like that, my world (and hers) was turned upside down. In an instant, I became not only her attentive Mama but a ferocious Caregiver—two very different jobs.
At the time of diagnosis, I remember feeling overwhelmed as we faced down three years of treatment with an unknown outcome. All I wanted was for my baby to survive. It’s all you can think about when your kid is diagnosed with cancer. I think my specific fantasy was that we would finish treatment, walk away, heal, and never think about cancer again. I would say that turned out to be about 85 percent true, and the most important thing did happen—she kicked cancer’s butt.
But the other 15 percent was and still is tough—the unseen, unknown challenges of survivorship in the cancer world. Because cancer isn’t fair, and nobody tells you that at the outset. At the outset, it’s all about achieving remission, not living and thriving as a survivor.
Dreams about survivorship begin for some of us when we hit the remission mark. I naively thought that once Cecilia’s cancer was in remission, I would be filled with relief, gratitude, and joy. Certainly, when she was nearing the end of her two and a half years of treatment, I would be cartwheeling and walking on air! Right? She was about to become a SURVIVOR!
All I felt was fear. Pesky, sometimes debilitating, looking-over-your-shoulder fear.
Because, not everybody makes it, even after achieving remission . . .
Because cancer isn’t fair.
During treatment, my husband and I bonded with six families. We played together, we shared hospital rooms, and we laughed and cried. They were our precious circle of trust and hope.
And in our precious circle, three children died.
Luke, Rebecca, and Michelle didn’t make it.
Kaleigh and Lauren relapsed, repeated treatment, relapsed again, and ended up with successful bone marrow transplants, and a lifetime worth of long-term side effects that plague them to this day.
One in six children with childhood leukemia die—it’s quite literally a roll of the dice. In our tight circle of friends, I bore witness to that cold fact when I sat by their children’s bedsides during relapse, or worse, went to their funerals.
At one point as we approached the end of treatment, the fear was a clingy, heavy weight. Arne and I decided to meet with our pastor. She listened to our guilt and worry about Cecilia with grace and patience.
Then she said, “Have you ever considered that she’s the hope?”
Whoa, mind blown. Maybe . . . she’s the hope.
That concept had never crossed my mind, that we could be the lucky ones.
Because cancer isn’t fair.
My Pastor’s nudge to seeing the positive became a cornerstone for managing my mind going forward into my child’s survivorship years, and for being grateful for what was going on right now. She was OK. More than OK. I had everything to feel positive about and what my Pastor was gently telling me was I should consider changing my narrative and seeing that positive.
And that is the biggest unseen challenge of survivorship— choosing to stay positive.
Because cancer isn’t fair.
When you decide to shift your attention from the me-and-my-oldsad story toward a positive future, life moves forward in a lighter, or at least constructive, way. Frankly, it’s never too soon to start that mental shift if you or your loved one is doing well (it’s harder when they are not).
The conversation with our Pastor made me realize that I got lost in the dark side of our cancer journey (she might die), instead of seeing how good it was at this moment (she just finished treatment and rocked!). My self-absorption took hold, giving me no space or time to give a shit about anything or anybody else. My problems loomed particularly large because I was not managing my mind—I let it run wild.
I have spoken with parents one, five, 10, and 15 years post-treatment who are still living in those dark years, still wrapped in fear, anxiety, and “what ifs.” Still lurking on Facebook parent groups wondering. . .
What if it comes back?
What if she fails math?
What if he’s emotionally scarred for life?
What if she can’t get a good job?
What latent side effects will show up years later?
I’m not saying these aren’t valid concerns, nor am I saying I never went there. It took time to trust that her cancer was not coming back and that she was, indeed “the hope.” But cancer is pesky, and its effects linger. And now, a decade after not really giving cancer a thought, our daughter must deal with fertility issues as chemo decreased her egg count. While I’m grateful she found out at 25 and not 35, this unseen challenge of survivorship is an incredibly frustrating thing to learn now after we asked at ages five, 10, and 15 if we should harvest eggs and were told it was not necessary. This scenario applies to many cancer patients whose latent effects show up years or decades later, without invitation or prediction. It’s certainly not what I wanted my little warrior to have to face the same year she became engaged.
But cancer isn’t fair.
So, what can you do to help yourself stay positive post-treatment even knowing that cancer isn’t fair?
Here’s one option: Ask yourself, is my loved one (am I) OK right now? Amazing! Stop pondering the worst and work hard to see the good around you. Is something going on in survivorship that needs your attention? Face it with your family, a loved one, and your medical team, and get all the help you deserve. Then trust that you or your loved one will move past the issue and be the hope yet again. It’s a choice. Make it, again and again.
After all, they kicked cancer’s butt.
Work to keep your mind and soul positive and give your energy only to what’s needed. That’s strategy #1 for facing the unseen challenges of survivorship—choosing to stay positive.