Every day for the last two weeks, I have juggled deep cleaning projects and childcare. A few of those days I crept dangerously close to losing my mind, as I tried to work toward goals with kids hanging off of me. Grandpa Kevin and Grandma Sandi have juggled full time jobs and helping me with childcare, which is the only reason I have accomplished anything these last two weeks. But by now, my mom's house is cleaner and more organized, and the farmhouse is getting closer every day to being cleaned out, repaired, and ready for the family to make a decision on its future- whether they will sell it, rent it, or come up with some other great plan concerning it.
The place is massive and daunting, a six bedroom ranch house with three bathrooms and two kitchens, perfect for someone with a lot of energy to make a living out of. But it is also in need of some TLC. I remember how much I loved moving into our camper for the summer of 2014 after being used to keeping up with this place. In the camper everything I needed was practically within arm's reach. In this house, it feels like one walks miles every day just retrieving the many small items one needs. I walk to the kitchen to make lunch, then someone starts crying somewhere, so I run to the other end of the house to deal with them. Then I need something in the basement, so I go down there. I am out of breath by the time I get back to the kitchen. Then I realize I have a hangnail, so I pack my bags, eat a snack, grab a piece of chalk to mark the walls so I can find my way back, and begin the long journey through the house to retrieve a fingernail clipper. Just the act of getting a drink of water from the kitchen requires pre-trip hydration if one is in a bedroom. It is an excellent house for a big family. It begs for the sort of family my grandparents raised in it- a revolving door of intentional family, in addition to biological family.
When I am down in this valley, where on calm days the silence is deafening in the absence of the constant city din I have stopped hearing at home, I realize again how it happened that, when we lived here, three years just slid past unnoticed. Then, of course, there are days like Tuesday, when the wind blew 40mph, the sky turned a dirty shade of grayge, the windows rattled and moaned, and dust settled on all the freshly cleaned surfaces in the house. I miss Kansas, but I also feel conflicted, because something about being in western Kansas feels tiring to me. B and I have been discussing this thing we call the Kansas phenomenon. It seems like we feel unusually tired here. Maybe it is that we have been working so hard, or that the bed is unfamiliar, but ever since we got here we have felt a like our energy is gone. My theory is that perhaps we just don't realize we have allergies, maybe they don't present with a stuffy nose, just exhaustion and inflammation. But it isn't a new observation. It seems to hit us hard every time we come out here. My other theory is that the sudden cessation of din and bustle just reveals to us the full extent of our exhaustion. Maybe we are generally too busy to realize how absolutely weary we are until everything stops, and then we grind to a stop, too.
Everyone comments on how healthy Daniel looks. He does look and act amazingly healthy. They ask how he is doing. This is a hard question to answer with leukemia. He has technically been in remission for over ten months- since day 29 of his treatment. If he hadn't been, it would have been unusual. Almost everyone hits remission with the intense month of induction. His body was pushed to its limit, and the cancer was pushed back to almost nonexistent. (The "almost" part is what makes him high risk.) All of his current issues are treatment related.
He stumbles and falls a lot. But so do some kids who aren't on treatment. I think it is because he is on a chemo drug (vincristine) that is known to cause nerve damage, with numbness, tingling or pain in hands and feet. He fell against a hot stove burner a few months ago, catching himself with the heel of his hand, and barely cried. That freaked me out. But kids who aren't on chemo fall a lot because they are kids. And kids who don't have neuropathy in their hand and feet are stoic. So maybe he is just a stoic, flat-footed little boy. Or maybe he also has treatment induced numbness and nerve damage.
He randomly refuses to eat foods he generally loves. Methotrexate is known to cause a metallic taste in the mouth, and to change the flavors of foods. Sometimes he seems to have a better appetite just before his next weekly dose. But also, kids who don't take oral chemo drugs randomly refuse to eat things they usually love. So maybe he just has a normal picky toddler palate. But he seems to be extra hard to please after his Friday methotrexate until about Wednesday. So maybe he also has drug-induced nausea and taste changes.
To me, his tummy looks extra distended all the time. Corticosteroids cause extra production of cortisol that creates belly fat. Also, his liver and spleen were quite enlarged when he was first diagnosed, although they have gone down by now. I see this shape in other kids with his diagnosis, but I've never asked about it.
He sometimes just randomly throws up. He seems as surprised as I am when it happens. He is eating, then suddenly he stops, turns green, and hurls in his plate. I don't know why.
We won't have a chemo break to see which things stop affecting him when the chemo stops for two and a half years. Maybe he is actually a high-energy kid, but it has been so long since he was just a normal kid, we don't really remember. Maybe he would be totally different, but now he constantly feels tired from his meds, although neither he nor we will know that because there will be no breaks.
But he is turning into a normal kid, doing normal kid things, with rosy cheeks and hair that resembles a buzz cut. He's not a "cancer kid" anymore, not to strangers or casual acquaintances. His disease is becoming invisible. Because he is looking healthy and hairy, people are starting to treat him like a normal kid with a normal immune system. I love the way nobody stares at him anymore, but I miss the way everyone kept their distance, clued in by his shiny skull that he had a compromised immune system.
Whenever someone asks him how he is doing, he replies with an enthusiastic "gweat!" And he is great. Now that he is so incredibly gweat, am I beginning to grasp how absolutely devastating a relapse would be, now that we are getting back to a life not completely dictated by cancer. When we were in the thick of things and had forgotten what it was like to not live in constant drama, making frequent emergency room visits, dealing with inpatient stays and germ paranoia, a relapse just seemed like a discouraging extending of our current visit to cancer land. But now that time is fading in our rear view mirror. The more time passes between then and the present, the less prepared we are to go back. It would be as devastating as a fresh diagnosis, but without the benefit of ignorance and with decreased odds of survival. When we were in the thick of it, the thought of relapse was exhausting, but just more of the same. Now it is a truly colossal truckload of nope.
That is the thing with cancer. You are great. You feel good, you look good, you deal with the side effects of treatment and try to be normal. This either continues for you indefinitely, or one morning as you are brushing your teeth, a cell experiences an error in replication and becomes immortal. Several months later, your body is full of useless but immortal cells. You start running a fever because your immune system is useless, and if none of the blasts make it into a blood sample, everyone tells you your counts are crashed but it's probably just a virus. Five weeks later, they finally acknowledge the dread that has been haunting you this whole time, and order a bone marrow biopsy. And with the results, your whole world crashes in on you. Again. Even harder than the first time, when you decided to not acknowledge that relapse could happen to you.
So when people ask us how he is doing, we will always answer with "great!". Because he is. But sometimes we also add, out loud or under our breath, "for now". This is us protecting ourselves. If we worry about relapse, if we acknowledge it could happen, maybe it won't. It is us being honest. People ask us so they can hear really good, positive things. So they don't have any little problematic worries fluttering in the back of their heads. This is us saying that Daniel is doing well, but he is also still fighting. It is us asking our friends to remember his happy ending isn't complete. It won't be for years. Every day he doesn't relapse it gets happier and more permanent, but our heads are still full of worry for him.
Yes, I know the knee jerk response to this bit of honesty is usually something like, "just trust. Negativity and worry accomplishes nothing. Don't cross bridges you haven't come to". This is sound advice, and something we tell ourselves often. But it comes out of nowhere- the further the emotional pendulum swings into the light, the further it also swings into the dark. These are places we didn't let ourselves visit in the thick of it, but we are finally starting to explore them, because they are there and in knowing them, we come to know ourselves.
When I started this blog, I called it "Little Daniel's Big Adventure" for a reason. I did not want to call it something that would, in any way, indicate that he was sick. I named it for his future adventures, all the things we would get to do with him that I would write about for him to relive, albeit through my eyes, as a teenager or adult. I wanted this experience with cancer to be the first of his many adventures recorded here. It was me kicking back against the darkness and dread, refusing to give it a toehold. Sometimes during the last year I have forgotten this, have gotten mired down in the process, have wondered if I was being too flippant about the very real fight he was in. I thought maybe I should have used a less cavalier word than "adventure". But honestly, to him, it has been one. He has no idea how unusual his experience has been, or how hard, or how painful. He doesn't know that queasy and tired isn't everyone's normal. He has been surrounded by people who laugh so he won't see them cry. His doctors, nurses, friends at the hospital, and family all share this vision for him- that he has no idea how upsetting or dangerous his "adventure" is.
Now that the intensity is over and life is getting to be more normal, I am glad I fought so early and so hard to fool him into thinking all was normal. Nothing gives me more joy than seeing life roll off him like water from a duck's back. He's too young to know how to lie about being happy or to wear false bravado. His joy is real. His bravery is an effect of being genuinely unbothered by his countless blood draws, port accesses, drugs, spinal taps. It wasn't always that way, but by now he has forgotten the time in his life before it all became normal. Sometimes I worry this is setting him up for a lifetime of accepting unacceptable things, not recognizing abuse for what it is, but I also plan to have time after his treatment ends when he is five years old to help him relearn things like body autonomy and consent. (And then sometimes I worry that I worry too much.)
(A week later- I didn't get this posted, so may as well add to it.)
It has been a crazy, crazy several weeks. It honestly feels like every time we take a step forward, we slide a few steps back. To review and add a few details I may or may not have mentioned earlier: the first of the month, B left to go paint the house his cousin is building, not really a step in the right direction as far as finding local work, but the pay is the same, and it was immediate. I stayed home until Daniel's chemo appointment on the 11th, then loaded two carseats, one 90 lb Golden Retriever, an ice chest, a strider bike, a box of toys, several suitcases and a collection of blankets and pillows into our little gas-sipping hatchback Ford Focus, and drove to Kansas. We spent several days at Grandpa Kevin and Grandma Sandi's house. They entertained babies, which gave me the opportunity to start a big deep cleaning project. In the process, my mom and I got to scheming about her furniture situation, got to dreaming and drawing, and decided we should build some couches. Yep. So we drew up some plans, at which point my dad took over the building of said couches. They are actually deep benches/storage boxes lining one wall of her living room, with a lounge end on one end. Before long, we had lost control of that project and my dad had hired some willing laborers to do it instead. Nobody complained about that. I moved onto the next project, painting trees on her walls, another project she has been waiting for me to come out here and do. Every ounce of artistic ability I possess comes from her, but for some reason she doubts her abilities, not to mention she has a full time, extremely high stress job. My goal this trip was to help her create a sanctuary to come home to in her tiny cottage of a house, constantly filled as it is with chaos and projects, and a way to easily and sustainably keep the chaos and projects out of sight. It is slowly coming together.
While I was doing that, Bobby texted me a picture of his truck, being pulled out of a stand of trees on an extremely steep embankment on the side of Grand Mesa. When I finally got ahold of him on the phone, he told me he story. Early that morning, he had hit the road from Cedaredge, planning to drive up and over the Mesa to go home to Loveland, where he would pick up the trailer we borrowed from the farm when we moved, and drive to Kansas to return it, spending the rest of the week here with us doing long-procrastinated projects. As he rounded a curve, the morning sun in his eyes, he noticed a sheen on the road ahead, so he let off the gas and slowed a bit. But when he hit it, it was immediately obvious it was an extremely slick patch of black ice. The curve itself slants to the outside a bit, and faster than he could react, his back end slid out from behind him and dropped off the shoulder of the road, pulling him around until he left the road completely and slid backward down the side of the mesa. He thinks he did everything right, streering into the skid, not mashing on the brakes (until he was rocketing backward down the steep drop), having driven on ice and snow most of his adult life and never having had an accident before, but it all happened pretty fast. Thankfully, there was a thicket of trees about fifty feet below the road, which stopped him before the truck went sideways and rolled or otherwise continued to the bottom, another several hundred feet below him.
Apparently this curve is fairly well known locally. Not only does it slant the wrong way, it curves more tightly than it seems to, causing people to misjudge it. Last year a motorcyclist shot off it, tumbling into the trees, breaking some bones. When he had crawled back up to the road and called for help, and help had arrived, he told them he had also located another missing motorcyclist down there, unfortunately not so lucky as to have survived the crash. B was very fortunate that the only effects of his little incident was an adrenaline hangover and damage to every panel on the side of his truck- mirrors and door handles torn off and scrapes and gouges from the trees that stopped his descent. But the cost of the damage and ticket (because leaving the roadway necessitates a reckless driving ticket, regardless of fault) did negate most of his week's hard work.
He arrived out here in Kansas and set to work painting my mom's house and completing a checklist of improvement projects at the farm. All week, it has almost become ridiculous enough to be funny, the way things have fought us. I left the lid perched on top of a can of paint, Bobby came along a few minutes later and grabbed it, flipping it over and splashing paint all over my mom's new flooring. He tried to fix a leaking faucet on his sister's bathtub, only to break the shut-off valve on her water heater. I ran over something on these dirt roads and put a big hole in a tire. Daniel removed the cover from a drain in the basement floor and discovered the pipe beneath was the perfect size to drop golf balls into. Alex discovered that throwing grandma's dishes on the floor made delightful noises as they shattered. He also discovered the joys of wet paint on several different occasions. He also discovered he can climb ladders. I feel like we have done approximately four days worth of real, actual work in the two weeks we have been here. At least that's what it would have taken us without all the "help" we received from two enthusiastic little boys.
Life. It's wonderful and hectic and contrary. That's how we know we're really living.
Well I finally got around to reading little Daniels big adventure once again:) I love it!! This sounds like chaotic happiness:):)
ReplyDeleteWell I finally got around to reading little Daniels big adventure once again:) I love it!! This sounds like chaotic happiness:):)
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