It has been nearly three years since Jordan last endured chemotherapy. And we are very grateful to be done with weekly trips to the clinic, watching Jordan’s blood counts, and comforting her when the medicine knocked her out or made her sick.
We started 2015 as our third year of “stability.” There is still a tumor in there, but it is stable, meaning that though it is hard to tell if it is active, it is certainly not growing rapidly and it poses less of a threat to Jordan’s health.
But in many ways these past three years have been very difficult for all of us. I was tempted to title this article “aftermath” in reference to the journey that happens after the battle with cancer. But in our case, we’re not really certain the battle with cancer is over. It’s an interregnum. Perhaps a better way to think of this journey is that we’ve turned off the main drag and strolled down some alleys. Some of them dark, others merely curious.
We spend most of our time wandering down three specific alleys. The first, I have written about extensively: seizures. On a typical day, Jordan has 2-3 auras (strong feelings that a seizure is about to happen that can make her nauseous, numb and nervous). She has a full seizure about once a week, sometimes more when her hormones are in flux.
The alley that troubles us most is the one that concerns her weight. She is far too thin. We believe it is a consequence of the tumors. She loves to eat but the problem is that she does not eat enough. This is actually a somewhat common occurrence amongst brain tumor patients. The tumor can cause damage to the area of the brain that controls our satiety. Basically, it loses the ability to tell the body “I’m hungry” and instead sends the signal out that “I’m full.” We’ve put Jordan on the highest calorie diet you can imagine. She drinks shakes all day long. She enjoys a good steak whenever she wants it. But she’s not consuming enough calories to make much of a difference. It’s very troubling to see her so frail. And, of course, the absence of body fat makes it impossible for her legs to get stronger and add muscle tissue.
That leads to the other alley: the legs. Most of the wounds on her feet have closed. There is one that is rather pesky. Her orthopedic surgeon wanted to resculpt her feet to accommodate but we were not keen on subjecting her to another painful bone surgery. We were relieved when our second opinion told us that the procedure would only “address a peripheral symptom of a central problem.” In other words, reshaping her feet will not address the fact that her brain has trouble operating her feet. She balances all of her weight on one bone in her foot. Her brain can’t really control the nerve endings in the foot that you and I take for granted–the ones that cause us to make subtle movements that balance our weight across a complex network of bones and tissue. Reshaping the foot would just shift the weight to another single bone. So, we’ve decided not to do surgery. As a result, Jordan crawls a lot and she spends much more time in her wheelchair than she did in the past.
Sometimes she gets blue and laments the things that she cannot do. But most of the time she goes about with her life. She goes to school when she feels up to it. And we try to get her out and about so life doesn’t seem so closed in.
Truthfully, she’s not the only one that gets blue. These past three years have weighed on all of us. Sometimes, I think we don’t realize how depressed we are. We live with it in such a chronic way that it doesn’t feel like depression. It just feels like life. And, truthfully, we aren’t a sad lot. We laugh and we live, but we also go to bed every night with unsettled thoughts and feelings.
Jordan is 16. She’ll be 17 in August. It is so hard to believe that she is nearing legal adulthood. I often worry about her life as an adult. What will she be able to do on her own? Will she have adequate access to care? Will she one day develop lasting friendships and relationships with others outside her family?
With her body weight so low, what happens if we have to hop back on to the main thoroughfare of cancer fighting? She has no reserves (although, she is still a feisty fighter with an amazing amount of emotional and physical strength).
So many worries, but still so much faith in the slayer. Whenever we hit a dark alley, she usually helps us navigate our way out. And that’s what keeps us going.