Avocadopocalypse

Well, January 4 came and went. Bobby was home, so he and Daniel went down to Denver to get Daniel's last high dose chemo. Ever. Obligatory if. Alex had the sniffles, so I stayed home with him to not spread them around the oncology clinic. In the week since, Alex hasn't shaken the crud. It's gotten worse. I had a sore throat most of the week, but I finally shook it two days ago. And Daniel has been...totally, perfectly healthy. Not one time has his temperature gone up. Not one booger. Not one cough. And I know he's compromised right now. I am so puzzled how Alex and I can be sick, and Daniel, whose immunity is less than one tenth of mine, can be fine. Unless it's still coming. Or maybe unless it's a mild case of influenza. Because only Alex did not get his flu shot (we normally don't flu shot, but we took every precaution this year). Daniel's counts were not high when he got it, but they were just high enough an immune response was still possible. If it is a strain covered by this year's shot, that might explain why it has been the plague Alex has not been able to shake, while the rest of us have been only mildly affected or not affected at all. 

On the 4th, Daniel's ANC was 120. I suspect that was too early to have been to the bottom and be coming back up, I think that was still on it's way down. We will see day after tomorrow what it is, and if it is high enough to keep our scheduled 8:30 am appointment at the clinic for the first spinal tap of his two and a half years of Maintenance. If I've learned one thing well through this experience, its that I just need to stop guessing at what is going on in his body. I'm almost never right. We've kept him home from things we could have gone to because we thought his counts were too low, only to find out they were fine. 

We thought maybe we would celebrate our last chemo before maintenance, but instead, the day just felt like more of the same. More cold, brown winter. More chemo. More driving to Denver. It didn't feel like a particularly exciting day. I mean, it's cancer, right? You can dress it up all you want, turn as many things into celebrations as you want, but the fact remains that what you are celebrating isn't a victory, it's that the beast you didn't want to fight in the first place took a hit that made it blink a little. But just because you landed a punch doesn't mean there isn't still TWO YEARS AND EIGHT MONTHS of swinging left. There will still be chemo. Lots and lots and lots (andlotsandlotsandlots) of chemo. And I am dreading two years and eight months of oral chemo so much. During the "trial runs" with oral chemo we did during high dose treatment, I just got more and more exhausted the longer he was on it, and by the time the two week bursts ended, I was a sleep deprived zombie. Oral chemo is a huge problem for us. What we do when we aren't on it works. Beautifully. The way Daniel sleeps next to our bed in his adjoining bed, and in the middle of the night, when the bad dreams wake him, he slides next to me and softly asks, "boop?" And as soon as he nurses, his tense little body relaxes and he falls back asleep, as do I. Unlike the nights when I can't nurse him, and his soft, sleepy requests escalate into loud, mournful sobs of deepest betrayal and wake Alex, who immediately assumes it is morning and tries to get up, and has to be dragged back and attempted to be nursed back to sleep while squirming, kicking, yelling and giggling, and then eventually wailing when he realizes night time is not over yet, while B, who is many wonderful things, but is not in any way a ray of sunshine when he first wakes up, says things in harsh tones he would regret saying the next morning if he even remembered saying them. Oral chemo steals three hours of sleep from us many nights Daniel has to take it. Whether it is because I stay up until after the required four hours of nursing-free time, punctuated in the middle by waking him up and giving it to him has passed, or leaving him to cry while I take Alex downstairs to try to rock him back to sleep, oral chemo is just...the shits. It really is. If I had a better word, I'd use it. But I don't, because it is a big, steaming, reeking, feculent, oozing bunch of...okay, fecal matter. (Why don't you tell us how you really feel? You say.) 

I don't want to wean him unless he chooses it. I don't. This time is so short, this time when he is so little. Do I want my body to be my own? Yes. Lactating? Over it. I am getting somewhat annoyed by the constant activity on my chest. I want to wear pretty clothes again, and real bras, and not constantly smell a little like sour milk. But I also see what it means to him. He has always been my snuggler. My little lover. My connoisseur of comfort. He thrives on that contact. Alex seems fine with a little snack and go, but for Daniel, nursing hasn't been about food since he was a year old. It is everything to him. It is a basic need, that reset in the middle of any stressful time that instantly returns him to his happy place. His need for it waxes and wanes, following the amount of emotional turmoil he is experiencing at the time. When his world is upended, he needs it a lot. When he feels yucky, he needs it a lot. When he is bewildered and needs help making sense of the world, he sorts things out while nuzzled into my breast. And when the good times return, when his world makes sense again, he barely acknowleges it. A few minutes at bedtime and he's done. But the mere fact that he gets jerked out of a deep sleep to have a hard plastic syringe of cold liquid shoved between his teeth bewilders him enough to need it again. And that's precisely when he cannot have it for at least another two hours.

Our chemo break right now has his face and scalp covered in bumps again. Every time we have a break, he breaks out. The hypothesis is detox. But this time, his scalp is also covered with the softest, downiest peach fuzz. It is impossible to be around and not compulsively rub it. Especially since it is located about hand elevation for an adult. He has had to simply accept that adults are going to rub his head without permission. They can't help it. They don't even realize they are doing it. It's just so soft and inviting. 

During this break, as soon as the nausea wore off from his last round, he developed a major avocado obsession. Every time he wanders into the kitchen, he asks for more "taos". It still gets me. I am not one of these mothers who somehow, magically knows what her toddler is saying all the time, when others are completely puzzled. He still has to train me. "Taos...towels?" I say. "Nnnnope! Ta-os!" He replies. "Your toes?" I ask. "No. Tah! Ohs!" And then runs to the refrigerator. "Oh! Avocados?" "Yyyyep! Taos!" He seems to be gaining weight. At least on his tummy. It's turning into quite the little Buddha belly, thanks to about a thousand extra calories worth of avocados per day. The effects of a diet comprised almost completely of avocados is...well. You do the math. I'm drowning in "guacamole". Potty learning is going great, actually, because he has like four enormous poops a day. And due to the extra oils, it doesnt stick to the inside of his big boy shorts. We can just roll his many accidents out of his pants into the toilet. But the amount of poop would make an adult proud. I mean, it's actually truly impressive that so much poop can come from one 33.6 lb toddler. (He recently weighed 15.3 kilos on the clinic scale! Seven pounds more than when he started treatment, we are up to our peak steroid weight, but it's healthy weight gain this time.)

With another big mile marker behind us, being closer to ending treatment also carries more worry of relapse being closer than it was when we began. Our obligatory ifs are threatening to become what-ifs. It seems like I have been coming across more stories of relapses lately. Just yesterday, I came across a blog written by a mom like me, with a kid who had the same diagnosis at the same age as Daniel- high risk pre-B acute lymphoblastic leukemia. She had even better odds than he does, because she was female, which comes with an upward bump in prognosis, her parents opted to put her on-study, which came with more chemo to prevent central nervous system relapse, and she was 100% cancer free after induction. Daniel, by virtue of being male, has a slightly lowered prognosis, hence the extra half a year of chemo over what he would be getting if he were a girl, we opted to keep him off-study, fearing side effects of the added drugs (plus, her on-study regimen relied heavily on PEG, so we would have been bounced off anyway once he had his reaction to it), and he did not quite meet MRD (minimal residual disease) at the end of induction. And she was fine. Totally fine. Until she wasn't. Until she relapsed, got an infection before anyone even really knew why she was sick, and within a day of them being told of her relapse, she died yesterday morning. 

Nine out of ten kids got to live at least another five years. She was the one who only got to live four months after her treatment ended and her port was removed at the end of maintenance. She started school. Her hair had finally reached her shoulders. Her parents started planning their lives again. Then she got sick again. Out of nowhere. 

This is my biggest fear. Do I actually think it could happen? No, not really. Nine times I can say no, and the tenth time, it's a maybe. Those are the odds. Well. Those are the odds of a fatal relapse. The odds of fatal treatment complications are somewhat higher. This is a number I don't know. Our oncologist says we needn't worry. He is doing so well. He is handling his chemo so well. 

Except, so did the kids who suddenly aren't making it. 

(Really? Shut up, dark part of my brain. I didn't give you permission to speak.)

As you may have gathered from my lack so far of happy commentary, I'm struggling a little. I wish I knew why. I've been feeling a little malcontent. I (we) really need a vacation. I've lost even the desire to go outside. The fog in my head and the heaviness in my limbs has me juicing lots of fresh veggies, attempting to do yoga while two wee ones use me as a jungle gym, reaching out to friends, trying to somehow introduce happiness and positivity into myself that isn't exactly there to radiate outward right now. I know I need to go outside and breathe outdoor air, but I would just rather cut off a toe than be colder than I already am. This house serves its purpose, but it does not seem to be particularly well insulated, and we try to minimize our footprint, both carbon and in our energy bill, by not running the heater at levels that would allow us to expose any skin below our necks. Plus, even though B is home about nine hours per day now, he is only awake about an hour and a half of that, and that time is spent showering, eating, and getting ready for another shift. Not watching babies so I can leave my house for a run. 

Winter will end. It will. It just seems endless right now. And we're tired. And housebound. But it will end. 

I hung a framed action shot of me flying down a trail on my mountain bike, bursting out of the deep pine shadows into sunlight, on the wall where I can see it. It was a trophy for being the overall winner in my age and skill category in a mountain bike race series back in 2011, my last race season. (I stood on the podium three days after my first miscarriage to receive it, after chanelling all of my hormone-fueled rage into the last race of that season and winning it by my largest margin ever.) The picture is from an earlier race, and my hair is flying from under my helmet, I'm grinning, and I look muscular and badass in my sponsored spandex. It reminds me that I wasn't always who I am now. And I won't always be. Everything changes all the time. And while I am struggling to find my happy, babies are getting bigger, and they'll never be who they are right now again. I don't want to miss that because I can't seem to be able to get past my first world problems.

But also, sometimes, I can't help it. I go where I don't want to. Sometimes, when I awake in the middle of the night to Daniel snuggled into my side with his head on my shoulder, I imagine waking to him not being there. Sometimes, when he makes me sing a particular song when we are rocking and snuggling, like the "fly, fly song" (Daydream Land, by Jewel), I have the thought that we would play it if we ever had to have a funeral...Shut up, brain. Just shut up. 

When things happen, people hypothesize as to why they happen. I have friends and readership of so many faiths and lack thereof, so I purposefully stay away from discussing our beliefs on this blog. It has become a place for me to explore the human side of our journey, the side that everyone who might have a similar experience will hopefully be able to relate to. There are blogs to proselytize and convert and convince of the existence or benevolence of a deity. And there are blogs to explore what it means to be human. I have more questions than answers to have this be the former, but being an honest, vulnerable human, that I can do. And that, I know well enough to write about. 

So instead of talking, which we often feel poorly qualified to do, we listen. We come from a background even conservatives would call conservative. I'm not kidding. We weren't horse and buggy Dutch, we had cars and electricity, but the "plainness" of our lifestyle was monitored closely by those in charge of their flock of faithful followers. Since they made the decision for us that we could not ask the questions we were asking from within the sterile walls of the religion, we have come to respect the many, many opposing beliefs of not only where we came from, but where we are. The places we have lived have been such cultural and religious tapestries, and it was in these places I realized everyone has their reasons. Valid, legitimate reasons. The way they believe is sacred to them, even when in complete opposition to others. And the most amazing friendships I have are the ones where we can gather and share the human experience without agenda.

But to ignore it completely, I suppose, would be to ignore a part of the questions we ask. Because we really have heard it all, I think. And that is okay. I appreciate people voicing to us their best guesses at making sense of the world. I appreciate the glimpses into their minds, seeing the world through their eyes.

And so we have heard that this might be our fault. Because of lessons we need to learn. 

And that it is punishment for past transgressions.

And that it is a test of our (name the virtue). 

And that it is a consequence of medical choices we have made for him. (X-rays and a Renal Lasik Scan at six months, fearing constricted ureters, or maybe us giving him his vaccines.)

And that it is just a consequence of living in a broken world. But one that is under full control of a benevolent God.

What have we gleaned from the many hypotheses shared with us, and our own experience? Things happen. They just do. They happen whether or not one trusts they won't. They happen whether or not one is thankful that they haven't happened yet. They happen to well balanced individuals and crazy ones, to good parents and bad ones, to rich and poor. Aside from a few lifestyle and genetic factors, cancer, especially childhood cancer, does not play favorites. And to think they are all micromanaged by a supreme being raises questions I am not sure I can answer, like why, if faith is the deciding factor, or bad things happen because we are being tested, or being punished, or being taught lessons, middle class and wealthy people must be the teacher's pets, because we get to have cancer be the worst of our worries while elsewhere, kids die of starvation, parasites, lack of clean water and lack of basic healthcare. 

So all we can do is shrug and acknowlege that we simply do not know. And be okay with not knowing. We had a round of bad luck. Others are dealing with luck so much worse than ours. We've also had some amazing coincidences fall into our laps. Things just happen, and nobody is immune. What matters is how we respond to them. To not let them define us. To love everyone, not just those who echo our sentiments back to us. 

And on that note, you, my amazing group of family and friends are so loved.

(Update: it took me an entire week to get this written this time, between all the interruptions! So his ANC was 1,000 on the 15th. Whatdya know. That was the day we started maintenance. We are now three nights into 947 days of maintenance. 947 nights of oral chemo. Three mournful midnight betrayals down, only 944 to go.)

And here is another picture of my little hero being brave.