I mostly handle my son Jack’s illness pretty well. The day-to-day stuff is much easier than I ever thought it would be and I’m pretty good at keeping up with what needs to be done. The thing that does get to me, though, is the look on other people’s faces when I tell them details about Jack’s treatments for Leukemia.
I recently took a leave of absence from work. I needed it badly -- my work performance was suffering -- and I knew we were coming up on a difficult phase in Jack’s treatment, a phase where not only were the treatments much more frequent, but also given at home by us. I knew that if I didn’t take time away I was surely going to break.
Being able to focus on my family was wonderful. I got to spend time with my son without having to say, “No, honey, I can’t play right now because I need to work.” You can imagine the impact of this on Jack, as when I told him I was taking off work to be with him for a couple of weeks, he said, “That is the best news ever!” We had so much time to play, to talk, to run errands together, to just BE.
After those couple of weeks were over, I went back to work calm and pretty clear-headed. Within that first day, though, I started struggling again.
My co-workers are very compassionate and caring. Wonderful people! So upon my return, many stopped by my desk to check in on me...but each visit serves as a reminder of that ball of anxiety I’m trying to pack away while I try to do my job. Every question asked takes me back to that first week that Jack was in the hospital. Every reaction to my answers reminds me of how horrifying this all is. I feel all the emotions that I felt when we received Jack’s diagnosis all over again as I see the reactions of other people -- shock, horror, fear, worry, pity.
It doesn’t matter how far we’ve come since that hospital trip -- it’s all fresh again in someone else’s eyes.
People are understandably curious about what we are living with day-to-day. How has our life changed? How are we coping? How long do we have to do this?
Unfortunately many are not prepared for the answers. Yes, we access a line directly into our son’s blood stream daily. We have to ask everyone if they're sick before visiting, and we can't take Jack to enclosed public places when he's neutropenic. We have to be prepared at any moment for a meltdown over something as simple as inquiring if Jack has brushed his teeth that morning -- anything can set him off if he’s feeling cloudy-brained or achy or unsteady or even just a little off.
It’s a balancing act to enforce rules (because we still have to parent him) and letting him be (because he’s going through so much already). Even in the moments where we know it’s essential to enforce some sort of discipline, it can feel like we’re torturing the kid -- kicking him while he’s down. He has sobbed and screamed, "I never get to do anything!" at me so many times in the last six months.
And how long will we have to do this? Well, the “simple” answer is two-and-a-half years. That’s if everything stays on schedule -- that timeline doesn’t account for delays or remissions (which hopefully won’t happen!). But cancer is not exactly predictable.
It’s hard to believe, I know. Two-and-a-half years of treatment?! Two-and-a-half years of chemotherapy treatments? Of that tube in his chest? But isn’t the cancer gone?!
The cancer has to be prevented from coming back. Not only that, but Jack’s immune system has to be reprogrammed. And, yes, that’s two-and-a-half years of chemo. Two-and-a-half years of having a catheter in his chest. Two-and-a-half years of mental space devoted to cancer…of watching for side effects and weighing every decision we make against what might be going on with Jack’s immune system.
Is this different than what any other parent has to go through? Yes and no. I think we all start off with a large amount of worry for our children upon their birth. Over time, though, most parents are lulled into a sense of security. We see how resilient kids are and how they aren’t so easily breakable. We wake up every morning with an idea that things will likely be okay, just as they have been for months or years. Much of parenting is learning that you can screw up and things will still be okay!
But once something has interrupted that -- once something has stomped on that sense of security -- it’s hard to get it back. A life-threatening condition plays into just about every insecurity there is about being a parent, especially the worry that even if we do everything right or well or directly to prevent bad things from happening, bad things can still happen.
This is not the type of message I am happy to be spreading to other parents, but this is my life now as a cancer mom.
Crystal, Author of Ewokmama.com
Photo Credit: aeu04117.