It’s odd, sometimes, which parts of the burden turn out to be the heaviest.
After all our family has been through, my son’s latest development is the one that came closest to cracking something inside me as a cancer parent. Ironic, since in the course of a six-year cancer survival journey it is probably the least consequential setback we've ever had, but I feel it more keenly than most.
Quick summary of the backstory: My son is 8 and still feeling the effects of a stage-four cancer diagnosis at the age of two that he really had no business surviving at the time – his brand of neuroblastoma had a survival rate in the single digits, so we tried a variety of experimental treatments on him. They worked so well that these experiments are now the standard treatment for neuroblastoma, but the long-term side effects remain unknown. All we know is that there are a LOT of them, many of them quite serious, and no doubt more yet remain to reveal themselves.
He has been in casts and then walking boots for nearly three months for bone surgery on his feet (long story there; let's just say it's a mild congenital issue made very much NOT mild by his cancer). A few days ago, at his third followup appointment, we found he's going to have the boots for another two weeks and braces for another six months.
Given that he has been in braces all his life anyway, and the important news is that the feet ARE healing perfectly (merely marginally less swiftly than the average), this should be less of a deal than most. But after years of being a great trooper about these things, it's finally starting to HIT him that he's not exactly like other kids, you know?
I mean, he's always known but he's starting to internalize it. He's beginning to understand what we have always known: this is never going to end. This is a momentary disappointing setback -- he was REALLY looking forward to walking again without casts -- that I think he gets is the latest in what's going to be a very long list of setbacks in decades to come.
There have been so many difficult conversations and moments of new understanding with him -- telling him his hearing is never going to come back and is probably going to get worse, recognizing that his ability to play outside in the sun is permanently shortened, the sheer hell that is his dental issues, the ominous ever-present threat that some kind of secondary cancer is more likely than not to someday rear up out of nowhere, the fact it's not a coincidence he's having a hard time learning to read, and on top of all that the understanding that the sheer bleeding-edge nature of his experimental chemotherapy means that there are any number of possible long-term effects that we don't even KNOW to be afraid of yet -- that it really does dampen the soul after a while. I suspect everyone reading this knows how it feels.
As a result, I suppose it's a good thing that this is happening on a relatively minor one. It's hard to see his pain on hearing that he's not going to be walking again for a while, but at least he WILL be walking. Hell, the incident that really made my stress level snap was when we were at a neighborhood festival and he got depressed because he couldn't go into the bounce house with the other kids. But minor though that may be, it's an immediate and concrete reminder of what he has to deal with.
There are a lot of other things that are never, ever going to come back and I might just huddle up and cry when the day comes that he realizes them with the intensity he currently realizes he's got to deal with leg issues a little while longer. He takes his hearing loss in such complete stride that sometimes I wonder if he just assumes it's going to return someday, even though we've been straightforward with him about how serious it is. (If that's the case, that is NOT a conversation I am looking forward to.)
Most of the time I can speak of it either academically or poetically - it's terminal childhood cancer, the killer of children, one of the worst things in the world, the awful thing that we use as a metaphor to judge the awfulness of other things, a literal monster from within that will be with us always, even long after it has been annihilated down to the cellular level. Carefully chosen words that simultaneously describe and mask the cold hard truth: this is never going to end. And some days more than others I'm a lot better at dealing with that reality.
Cancer – especially the worst kinds of stage-four nightmares, but ultimately any cancer – takes away a little bit at a time. Even long-term survivors are enduring a never-ending grieving process. We are grateful that we or our loved ones still have life, but there is still much to grieve. Grieving for the next chunk of self this thing takes away; grieving for the life you once had; grieving for the parts of life you will never have. And then, because cancer and the human mind never run out of ways to make us feel awful, along comes the guilt and shame of feeling bad at all when you know the alternative is much, much worse. My son is alive, and if he were not, I would pay any price to have him back. But the price we did pay to keep him is a bill that never stops coming due.
Whether a parent, a survivor or caregiver, there is no shame in acknowledging that it is DAMNED hard to live with this thing sometimes, or in recognizing the enormous burden it represents. We so often put on a brave face, but in ways both literal and physical, it hurts, and it hurts a LOT.
My son’s cancer may have been eradicated, but it will be with us always. And sometimes, it’s okay to shed a few tears, shake a fist at the universe, and admit how incredibly hard it can be.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.