This whole cancer journey started about a year ago now. I can hardly believe it. I think Jack started getting sick before we realized – it was harder to get him to school, to get him to do homework and participate in PE, and then a couple of days after Christmas he got sick. Suddenly he spiked a fever and was miserable. He threw up, which is rare. His cousin was here from Maryland and tackled whatever bug it was with no problem! But it seemed to hit Jack like a ton of bricks, which was unusual for him.
A little over a week later, he still seemed to be off. He was tired, he was achy – sometimes writhing on the couch in pain, and I noticed he was having dexterity problems when putting Legos together – something he’d been doing since he was two! We thought (hoped) it was anemia or even just growing pains, but on January 7th, 2012, it was confirmed that Jack had Leukemia.
I look back now and I can’t even believe that I held up in those first days. I was terrified. I had NO experience with cancer, no idea what to expect. I took ativan to deal with my panic attacks. I drank coffee constantly – the warm cup within my grip somehow comforting and centering. I worried and worried and worried. Just a week before I had been talking to my friend Becky and had said, “I would die if anything happened to Jack.” Those words haunted me.
I kept thinking – Jack is so good, so sweet, such a happy, creative, magical little boy. He shouldn’t have to go through this! What if it took away his spark? I was well aware of how lucky I was to have Jack in my life – he made my life infinitely better – and then I worried he would be taken away. He was TOO good. I was TOO lucky. It would all be snatched from me. Having such awesomeness in my life couldn’t last…
It was unreal. It felt like I was living in a nightmare. I hoped it was just a long, intricate nightmare. I hoped the doctors had made a mistake, that they were being overly cautious, that they had switched Jack’s blood sample with someone else’s by mistake or something. It even occurred to me at one point in my terrified, exhausted haze that maybe Jack’s pretending to be an alien wasn’t just his imagination! Maybe he had alien blood and those weren’t cancer cells! (Yeah, can you tell I needed sleep?)
It didn’t help AT ALL that Jack’s namesake – his grandpa Jack – had died of cancer. It was Melanoma and this was Leukemia, but still. How fair is THAT? My heart hurt for Jack’s dad’s family members.
Most of the year is still a blur to me. I’ve seen people count the number of hospital visits, the number of various treatments and procedures, the number of pills even! (Okay I just went and counted what Kaiser has in their website for past visit info – there were roughly 35 visits [usually 2-3 appointments each visit] in 2012. Twelve of those included lumbar punctures and/or spinal taps.) Parents will track dates that new meds are given, ANC counts, side effects of every treatment…I did that for maybe two months. At some point I realized that all of the info was Greek to me and I’d let the doctors and my gut tell me the rest. Thankfully, it worked out.
At first we had a “Beads of Courage” necklace, as well, but after nearly filling it up after just that week in the hospital, we abandoned it. Some patients love these religiously but it didn’t feel that inspiring to us – it felt more burdensome and Jack had so little interest in anything that reminded him of his cancer once we left the hospital.
Things are pretty routine now and a lot about Jack’s life is fairly normal. He takes a lot more pills than most kids, he gets weekly dressing changes, and he can’t play contact sports. He often doesn’t feel 100% but what kid does? Before cancer, there were colds every few weeks or so – at least there are fewer of those now!
I think the largest impact – and it’s large, indeed! – of a chronic, life-threatening illness like cancer is the constant reminder and worry. Even if everything goes right, things can still go wrong and there is no preparing. Even if the kid can participate in most normal life activities, we parents need to assess every situation anew and sort out any possible threats to our child’s health. There is no safe spot, no time when you know nothing can happen – you don’t even trust yourself most of the time but you trust others even less.
Even while he’s sleeping – especially, sometimes! – there is worry. There is worry that one of the fifty bajillion blood tests will come back with odd results (and there is worry when they DO come back with odd results and you have no idea what it means or the doctor says everything is fine but then why do the numbers look different??), and worry that the medication isn’t working well enough. There is worry over side effects (their presence or the lack!) or longterm issues, anxiety over the catheter site and whether it’s supposed to look like that and whether the tube will hold up all three and a half years, the niggling thought that you missed something in the the four times you swabbed the cap with alcohol or that one of these times you’ll forget to undo the clasp before trying to push Heparin and blow a hole in the tube…
And when there isn’t worry about my kid, there is worry about myself – my relationships, whether I’m talking about this all too much or not enough, my work performance, the fact that my credit card debt doesn’t seem to shrink, the lack of attention (and sometimes food) I’m giving my pets, the fact that I’ve spent so much energy worrying about so much of this stuff that I have so little left for something like a school shooting.
“I can’t worry about that,” I tell myself. I will break. Or maybe I already am broken? Shit, there’s another worry.
And, all things considered, Jack is doing great! So it feels like the worry is for nothing! But there isn’t a damned thing I can do about it. There is no way to take a break from all of this. I worry in my sleep.
I imagine that another year will go by and the worry will lessen. I’ll grow more accustomed to all of this, find new ways to adapt and cope. Maybe even one day the weight will be lifted completely! Then what will I do with myself?
I know this post is mostly about me and not so much to do with Jack and how he’s dealing with everything. There is not a whole lot I can say about his experience, to be honest. He refrains from talking about cancer for the most part. He has mentioned a few times that he wishes he didn’t have it and hopes I don’t get it, but mostly he goes about his days as if it doesn’t exist. Partly its because of his age – he really doesn’t have a concept of what COULD happen. He is mostly unaware of the worst case scenarios. And rather than anxiety, he seems to feel irritation depending on his desires at the time. If he is prevented from doing what he wants to do, he’ll become irritated about it instead of resentful or worry that he’ll never be able to do it, OR he’ll take the escapist route and make it into a story.
Jack handles a bit of chaos and disorder much better than he did a year ago, and seems more confident and willing to try new things. Part of that is aging, but part is likely the cancer experience. He was precocious before, but now he is frighteningly adult sometimes. He recently told me that a friend I had lost will live on in my plush ewok doll. He often tries to discipline himself at home and at school. He deals with anger and depression and fatigue, things I’d hoped he wouldn’t have to deal with for many years yet.
One thing I’m particularly proud of him for is his ability to assess how he is feeling and tell us whether he is up for certain activities. Sometimes he’s too tired to talk on the phone, sometimes he’s tired but wants to try anyway. Self-awareness is a good skill to have and it seems like he is developing it at a fairly young age.
All things considered, we are much the same as we were a year ago, albeit somewhat less carefree and a lot more appreciative of the little things. In some ways we are stronger (our pain thresholds are higher!) and in other ways we are weaker (it takes less to disturb our routine and sense of security). Best of all, we have our little family and hope for the future.