Hello from the land of sorta-normal. It feels weird. We still feel like we are living dangerously every time we leave our house. And quite honestly, we might be. We won't know until February 12 how Daniel is responding to his current dose of oral chemo. It is at "100%" right now, the baseline dose. If, on February 12, his absolute neutrophil count (ANC) is below 150 per 10 3/ul (you're welcome, my nerdy few to whom this means something) or, as more commonly stated, 1,500 (we healthy people have a range of 1,800-5,400) we will know that he responds well to oral chemo, so he can be put on a lower dose next month. If it is higher, he will need to be put on a higher dose to bring it down to around 1,500. In the meantime, we are Schrödinger's Neutrophil. Simultaneously there and not there.
We live our lives accordingly. We leave the house, but we ask beforehand if everyone we plan to see is healthy. We compromise by playing outdoors instead of indoors when we go somewhere. We still don't take him into stores, but we did brave a Mediterranean restaurant one day this week. That was an embarrassingly exciting falafel platter. We bargain by only doing fun things every other day or so, to give his immune system a break to recover from our last outing. I don't think this is actually scientific or very effective, but it makes us feel all proactive and responsible while still getting to do fun things.
If you've been reading this blog for awhile, you'll recall that, aside from keeping a casual eye on red blood cells and platelets, Daniel's ANC is the all-important number. This number determines whether or not we can leave the house. Neutrophils are little white blood cells that float around eating foreign bacteria and viruses. If he has no neutrophils, bacteria and viruses are free to multiply at will with nothing to stop them.
See the cells on the right side of the diagram? At an early point in the process of lymphoblasts turning into mature B lymphocyte cells in Daniel's bone marrow, they go wonky and turn into completely useless bulk with no "off switch". So, ya know, cancer. Which then crowds out all the other cells. It's a fine line his doctors walk between keeping his bone marrow suppressed enough that it has a greatly decreased chance of creating any more wonky cells, and active enough that he can actually, you know, have a life and not die from an opportunistic infection. Because they cannot selectively suppress only the B cells without suppressing all other cell lines, so they have to suppress them all just enough, but not too much. It honestly blows my mind that so many kids can go through this and not-die.
It now occurs to me that I have blabbed about the existence of this blog to various interested (or merely polite) parties at Children's Hospital, including some impressive names in pediatric oncology. Who may read this and wonder whether they should laugh or cry at my grasp of pediatric oncology. If so, I would love a personalized lesson. Because I am educated entirely by Google at this point. I know just enough to know how much I don't know. And also enough to realize that it's a tiny bit more complicated than merely ingesting turmeric and cannabis and floating away all healed and immortal. Well. On this plane, anyway. You know, among the living. Ok, digging myself a hole. How about I just change the subject now.
Our schedule is completely messed up. Yesterday morning, I went to a playgroup. This particular group has yielded some very supportive friends who really don't know us that well, because I took Daniel to it once, post-tibia fracture but pre-leukemia diagnosis when I was enormous and pregnant with Alex, and again one time post-diagnosis because I had yet to realize how drastically our lives had changed and just how compromised his immunity was, and it was outside in the sanitizing sunshine. And once post-induction, when he was still super fat and unable to crawl, so he just sat on a blanket and cried or asked to be held the entire time. It is a testament to how badly we needed a change of scenery that we braved taking him to a picnic to meet complete and potentially judgy strangers, as volatile as the mood was back then.
Anyway. The playgroup. He played hard and had so much fun, cried when we left, I fed him lunch at home and he faded quickly. I nursed him a bit as we sang songs together (he loves humming along to my songs as we cuddle, rock and nurse), put him in his bed, and he was sleeping almost immediately. This was around 2 pm. Bobby had gone to work at 3:30 am and was supposed to be gone until 6 pm, but their next planned job was underbid by another company at the last minute, so he came home with no more work in the forseeable future. Could happen tomorrow, could happen a year from now. The nature of the oilfield. This was actually the first unscheduled time off he has had since his dubious promotion, so he didn't mind, but it's still a little unsettling any time it happens. So here is how the last twenty four hours have gone around here:
2 pm yesterday. I leave D in his bed and tell him I will be right back, I just have to go see why Alex is tragically falling apart downstairs. I nurse and rock Alex, who acts like he just might go to sleep too. Could it be?
2:15. Alex gets a second wind. Screams if put down, but is only interested in trying to insert his fingers into my nasal cavities when being held. I carry him to keep him quiet and check on Daniel, who is passed out clutching Curious George and a plastic truck.
3:15. I'm scrolling through Facebook on my phone for the third time, checking my email for the second time, still holding Alex, who screams as though he is being threatened with dismemberment when put down. He keeps wanting to nurse, but also, definitely does NOT want to nurse. Also, clearly we'd both be happier if I would simply allow him to stick his fingers all the way up my nose, already. Also, he wants to be cuddled like a baby. No, not like a baby. On his tummy. No, not on his tummy. Hanging upside down off the arm of the chair. Actually, on the floor would be better. For the love of all that's holy, woman. Did you just put me ON THE FLOOR?!?
4 pm. I decide daddy can watch/humor Alex while I clean the house, since I haven't heard much activity in the office where he was paying bills earlier, so perhaps he is just surfing the internet. I discover an empty office and a daddy-sized lump under the covers beside Daniel. Who is still breathing. I checked. Twice.
I put Alex on my back in the carrier, hoping he will stay quiet back there so I can get something done. He doesn't. I take him out and sit with him on the basement floor surrounded by toys, and because I am sitting on the floor with him, he can be halfway content. Also, my hair is delicious. I color in my grown-up coloring book when he allows me to, a Christmas gift from a friend who knows me well. I get impatient with the picture being too intricate and taking too long to become beautiful already. Then I realize I don't have anywhere else to be so I fill a thousand little dots with pretty blues and violets and it is predictable and nice and makes me happy. Then I finish the picture and feel sad because now the next one is so very far from being as pretty and colorful as this one and I'm already impatient with it before I've even begun. I put away my colored pencils and reflect on the inconvenient effects of adult ADHD. Which I probably have. I mean, I was officially diagnosed as a kid. Ritalin literally made my school years livable. The fact that as an adult (or at least an overgrown kid) the smallest amounts of cannabis can focus me and turn me into a legitimately productive person makes me assume it isn't something I have grown out of. I haven't chemically self-medicated since before Daniel was conceived, having been either pregnant or nursing, or both, since. Writing is my current medicine. It is repetitive. It makes me slow down and think. It creates rhythmic flow to replace the jagged, disjointed jumble that is real life. For years of my previous life, art did that. Then running. Then biking. Mountain biking was my true magic bullet. The repetitive pedaling motion created calm, the beautiful mountain panoramas, the pain and the speed were sensory stimulation, the occasional dangerous thrills of near-crashes created adrenaline which left endorphins in it's wake, the exercise created a calmed, exhausted body to accompany a calmed mind. All things I apparently need to successfully pretend to be a well balanced individual. Except now I have kids, and a husband who works too much to allow me out of the house for even short rides, and art is almost impossible with two little helpers, but writing...sometimes I can write while also parenting. Sometimes. And sometimes, when the big one is sleeping and not helping, I can draw or color. When things need to get done around here, I listen to music or podcasts to occupy my mind so I can keep moving without having a thousand distractions get me all sidetracked, so I don't suddenly find myself organizing plastic totes in the crawlspace while forgotten muffins burn in the oven, a half-made meal sits on the counter, the dishwasher sits half-emptied, and wait...who's watching the kids?
6 pm. Alex is full-on hysterical, having officially missed both of his naps. And still refuses to calm down. I get it, kid. I do. Here, let's just try some snuggling and boob again. I know we just tried this ten minutes ago, but humor me?
6:15. Daniel wakes up. Four hours. How did he sleep for four hours? More importantly, what does this mean for bedtime? He crawls on my lap with Alex to nurse himself happy, still shaking off the sleepy cobwebs. And just like that, Alex stops sobbing, starts nursing, and his eyelids fall shut with an almost audible thunk.
I lay Alex down next to the daddy-sized lump, then go downstairs with Daniel, suddenly feeling the effects of the last week of oral chemo-shortened nights. I make food for Daniel and me, eat it, then clean the kitchen.
8 pm. I knock a mason jar off the counter into the sink, grab at it, knock a spaghetti pot over, grab for it instead and stub my toe on a chair, which whacks into a cabinet door. The daddy-sized lump wakes up. He appears in the kitchen doorway with a massive scowl and a sarcastic "Think you can make any more noise?"
8:30. Having had some coffee, the daddy sized lump starts to resemble the less-scary, more-awake version of the daddy we love. He asks what I have made for dinner. I show him the Asian peanut vegetable salad Daniel and I had, and he opts for cold cereal. I take my first shower in three days, nearly fall asleep in the steamy bliss, and realize how exhausted I am. So, feeling like a true party animal, I give Daniel his oral methotrexate, which he takes every Friday night at bedtime, then leave him with his dad to watch whatever overstimulating junk they feel like, crawl into the bed beside Alex and become a mama-sized lump.
9:30. Daniel starts to call for me, having noticed my absence. Daddy sends him upstairs. He joins us in bed. Still wearing jeans and big-boy briefs, unbathed and with unbrushed teeth. He nurses and cuddles for about a half hour, and falls asleep.
10:30. Daddy comes to bed. Alex wakes up crying, so I cuddle and nurse him back to sleep.
1:30. Time for Daniel's oral chemo, because it has been two hours since he last nursed. Except right then he wakes up needing to go potty. His loud announcement wakes Alex, who I have to let sit in bed and cry while I oversee the pottying. So now Alex is wide awake. And has slept for over seven hours. And thinks it is morning. And so is Daniel. So I change him out of his jeans into softer jammies, but leave his big boy briefs on. Living dangerously. Daddy apparently sleeps through this all.
I somehow get Daniel convinced to take his chemo, then merely cuddle with me without nursing while I keep Alex from falling out of bed by blocking his attempts with a foot and leg. Daniel seems to be relaxing, so I whisper that I will be right back, and he nods. Then I take Alex downstairs and attempt to rock him.
1:45. I check on Daniel. He's sleeping. And also breathing. Weird, how easily he fell back asleep. Is there hope that oral chemo won't completely wreck us all?
3:45. Alex has squirmed, talked, squealed, giggled, tried in vain to find my nostrils in the dark, and has finally fallen back asleep. I creep back to bed. Daniel wakes up and asks to nurse. Guess what? It's been two hours since your chemo. Have at it, kid.
5:00. Alex wakes up. I somehow sense it's going to happen, and come fully awake seconds before he does, and the second his mouth opens to cry, which will seal our fate and end our night, I shove a boob in it. He sighs, relaxes, and falls back asleep. I hear Daniel start to stir behind me in his bed, pushed against ours. As gingerly as I can, I ease the goods out of Alex's mouth, turn over as quietly as possible, and am right there in Daniel's face as soon as Daniel's eyes flutter open, so he needn't wake enough to try to get up yet. The confusion and panic leaves his face when he sees me staring at him from a creepily close proximity, and he nurses back to sleep. I sleep too, and have the weird recurring nightmare I have all the time lately.
I am back in the little white cinderblock house on the edge of the Smoky Hill River breaks, and surrounded by all the calves, horses, goats, sheep, pigs, dogs, chickens, guineas, and cats of my childhood. Everything is normal. Then I remember I have an animal, usually a horse, that is solely my responsibility to care for, and I start trying to remember the last time I fed it, watered it, or gave it exercise. Then I realize it has been locked in its stall, completely forgotten, for months. Sometimes I remember I've left a horse out at pasture for years without even checking to see if it is still standing. So I run to the barn or the pasture in a horrible panic, overwhelmed with crushing guilt and self-recrimination, knowing I am going to find it starved to death, asking myself how I managed to fail it so completely when it was so dependent on me for everything, when I was its whole world, imagining all those endless, excruciating days it waited for me to come save it while I was blithely living my life and then...I wake up, cringing from the horror of what I know I am going to find.
Of course, it doesn't take much of an expert to point out what is going on. Helpless small squishy things depend on me. Most of the time, solely on me, at least for their many daily needs (the fact that we all depend solely on B to provide for our actual existence probably gives him his own nightmares). Any time that I forget about them for a second and get involved in living my life, loading the dishwasher or folding laundry or even writing this blog, I jerk back to remembering them in a panic. Where are they? It is too quiet. Wait, did I put them to bed? Are they napping or dead? How could I forget I have two babies trying to kill themselves, even for five minutes? What will I find when I locate them? Cords/outlets/stair rail gaps/bleach/buckets/unlatched exterior doors/choking hazards/knives/top heavy furniture/plastic bags....what am I forgetting? And meds. Did I remember to give him his weekend antibiotics? His weekly oral chemo? His nightly oral chemo? Did I remember on Sunday, he was only supposed to have half a dose? Did I shut the garage door, or is the dog going to have access to the busy street? What if I forget to put the baby in the carseat and leave without him? What if I think Daniel is safely in the house but he is standing in the driveway when I back out? How do I know if I'm losing my mind? How do I know if the constant march of horrible possibilities through my head is an indication of an anxiety disorder or just being a parent? How would I manage to not do terribly stupid things without the voice in my head constantly yammering about horrible possibilities? Not to mention...what appointments have I forgotten to write down? Where should we be right now, instead of at home not wearing pants? Who else am I failing? And who put the ice cream away in the refrigerator again?
I feel like my biggest enemy right now is my own forgetfulness. Where is my brain? I have this constant uneasy feeling that I am most definitely forgetting something. But what?
Maybe it's just sleep. I'm forgetting to sleep. Yeah. I'm definitely forgetting to sleep right now, as I am lying here in bed obsessing over morbid things.
7 am. Alex opens his eyes, those big, beautiful pools of blueberry eternity rimmed by thick lashes that curl gloriously all the way to his eyebrows, his rosy baby cheeks lifting into a big grin at the sight of me, and he reaches for me, his chubby index finger plunging deep into a nostril. I jerk away, my eyes watering. The movement wakes Daniel. He realizes he has to go potty immediately, and because he was recently asleep, his legs are too wobbly to get him to the bathroom in time. I hit the ground running, dragging him with me, saying "hurry! Hurry! Don't go potty yet!"
As I am helping Daniel pull his pants back up, I realize this is the first time he has slept all night without a diaper. Yesterday was the first day Alex went all day without a nap, which, while not really a milestone to look forward to, is still a milestone. And I am getting up nearly eleven hours after having gone to bed. On paper, we are looking gooood.
Bobby wakes up at 8:45. He wanders downstairs to make coffee, and asks me how it felt to sleep so well for so long. I am too busy wondering why there is a tiny sock in the egg carton to answer.
No comments:
Post a Comment