Growing roots on square one

Hi and welcome back! 

Life is still good. We went in for another lumbar puncture this morning. I was more nervous about this one for some undefined reason, but it went fine. Daniel still takes Curious George to the doctor for chemo, then gets his own chemo as an afterthought. Sometimes he wears his own scrubs, surgical cap, proudly carries his own stethoscope around his neck. Sometimes his mom can't find his doctor getup in the chaos that is chemo mornings, trying to get two little boys up and out the door without really waking him, lest he ask to eat something, down the road and to the hospital an hour away (in good traffic) by our appointment time, usually between 7:30 and 8:30 am. I got smart this time and put him to bed completely dressed for the next morning so it would be as simple as scooping him up from his little bed and transferring him to the car in the morning. Wrinkled clothes and bed head are fine on chemo day. 

The timing is usually such that his sedation wears off just as the hospital cafeteria is closing between breakfast and lunch, and leaving the hospital for home by the most direct route, we do not pass any restaurants until a Wendy's halfway home. Although chemo day is often junk food day (don't judge, you try feeding vegetables to a hungry but doesn't want to eat, exhausted, nauseated threenager who has had nothing but propofol sedation and chemo in his system in the last ten hours) by that time we are stressed out by the 80mph/5mph bumper-to-bumper traffic that is midday I-25 and just want to get home, not to mention the 50-50 chance Daniel will throw up whatever he has just eaten, which is more problematic if he eats it in the car. By the time we get home, the parents are exhausted as well, but if we haven't gone out of our way to pick up some carry-out, we make some less than appetizing, baby friendly thing here like scrambled eggs and ground beef (thank goodness for the 1lb bags of grass fed ground freezer beef my mom gave us- we eat far above our grocery budget thanks to her beef and chickens).  

For about a month now, Daniel has had a facial tic, sort of an exaggerated blinking he does with his entire face. We have a referral to a pediatric ophthalmologist to try to figure out if it is neurological or prompted by vision changes, either of which can be caused by the IV chemo he gets every month. Or it could just be that preschool age children often develop tics. He also frequently complains of pain in his right eye. Again, could be normal, could be chemo. It would be naive of us to think he could be systematically poisoned for almost a year and a half now with no long term side effects. It still makes me angry, though. His childhood was supposed to be easy and happy. I was supposed to be able to give him that. It could be so much worse, but it really could be better too, if cancer had left us to screw our kids up on our own terms. 

Speaking of parental screw ups, I made one I am not admitting to Daniel's docs, only to the Internet just now. He takes an antibiotic, sulfamethoxazole-trimethoprim (Septra) two consecutive days every week, twice a day. We were getting it in a suspension in grape flavored syrup. It gave him instant nausea, so I always tried to give it to him at a magical time of day when he had just eaten but wasn't full, and never around the time he took any other meds. Well. I can barely manage a complicated med schedule on a normal day, but add two days of meds at an odd time and I could never remember to give him all four doses. Sometimes, because the liquid couldn't go in his weekly pill organizer cups I didn't remember to give even a single dose. I figured, his counts are always high. Pneumocystis Pneumonia is a concern with low counts. If we miss half his doses, it's not ideal, but it is better than missing his oral chemo. This has been going on since he entered maintenance. Well. Since before then as well, but the Septra negligence has been extra bad since starting maintenance. 

Last month, I gathered by inference on an Internet leukemia board that Septra suppresses white blood cells. The same blood counts that have been too high ever since entering Maintenance. I had no idea. Nobody in a year and a half of treatment mentioned to me that in addition to being a protective antibiotic when white blood cells are suppressed, it helps suppress them. I freaked out a little. I also called and asked his docs if we could try swallowing it in its giant, powdery pill form, in case it was the grape syrup upsetting his stomach every time instead of the actual antibiotic. I religiously gave him every dose for a month. He seemed to do better with the pills. He didn't like them, but he got them choked down and never threw one up. And sure e-freakin-nough, if his ANC count wasn't right at the bottom end of ideal this time. Son of a crispy biscuit. 

Turns out my breastfeeding him at night wasn't what was sabotaging him after all. The methotrexate and 6mp are doing their job. It wasn't the milk, and all those nights of crying as I made him wait longer than the recommended minimum of two hours, trying to give the 6mp all the time it needed to work in his body before I added breastmilk with it's oxidase enzymes stopping the action of the 6mp, that was all just wasted time we could have been nursing and sleeping. It was me not giving him all his meds that was the culprit. So I felt like a pretty stellar medical parent-caregiver. 

My own struggle lately is with the breastfeeding. Well. Not so much the act as the frequency with which it is demanded. It has taken a while to get here, but I am over it. My hormones are telling me it is time to get these two off me, probably because it has decided it is time to make another baby. My brain, of course, slaps my body into the middle of next week for even suggesting such a thing. But as Daniel's knowledge and observations about the world around him increase, so does his need to anchor himself to the most comforting, stable constant in his life- me and my body. Not to mention Alex has been cutting his first molars for what seems like forever, turning him into a little barnacle, attached to his mommy and in constant need of nursing. I do not feel like I can take away the comfort of breastfeeding from either of them right now. Nor am I willing to take away the immune support and gut-healing properties from Daniel, who does not struggle right now with treatment related digestive maladies as do many of his little treatment buddies, and as I am afraid he would if 40% of his diet were not breastmilk. I also can't shake the timing of Daniel's diagnosis. Was it coincidence that his cancer took over his body within a month of my milk drying up during pregnancy? Through this journey, I have met multiple mothers who say the same thing- a month after weaning, bam. Cancer. Yes, it was inevitable. But perhaps breastfeeding somehow kept it in check until they were older and more able to fight. Because leukemia seems to be a genetic disease with environmental triggers, Alex has a greater than average chance of getting it as well. I can't shake the fear that if this timing hypothesis has some truth to it, I would do well to let both Alex and Daniel nurse until they decide on their own to stop. But I want to stop. Right now, every time they ask to nurse I have to take a moment to mentally prepare myself. It feels vampiric. I feel a violated by it. Everyone says, if it isn't working for you, stop. Yeah. Not so simple in practice. Come to think of it, everything about parenting could probably be summed up in those five words: not so simple in practice. And not just parenting. Life.

In the meantime, it is hot. The dog days are here. We are estivating. (New word I learned yesterday and really needed to find a way to use it. Estivate: when a species goes dormant during the hot, dry portions of the year. As opposed to hibernate, a very different metabolic process in which a species goes dormant during the coldest months.) Every winter, as the cold settles into my bones and I pile layers of sweaters and blankets on me to preserve what tiny bit of warmth they still possess, I think the heat can't possibly be so bad. Then mid-June until early September rolls around and we realize we have no desire to venture outside during the day. Daniel's drugs make him sensitive to both sun and heat, causing him to quickly become flushed and covered in rash. Commercial sunblocks make the rash worse, so I ordered a bunch of fancy natural oils, butters and zinc powder online and make our own sun lotion, which we pair with wide brimmed hats and long sleeves whenever he heads outside. It's still no fun. I will hate myself for saying this when the winter sky is hanging low, winter wind is howling, winter cold is impossible to chase out of our house without spending more on our heating bill than we are willing to, but can we have a little less heat, please?

We spent last weekend in Summit County to celebrate Bobby having been gone working in Kansas for a month, and this month's budget being met with a little to spare. We spent two days biking, swimming, splashing in mountain streams in the shade under tall pine trees, and it was wonderful. We wondered if we should move back up there. Of course, summer is only three months long there, but quite honestly that is about all of summer we can use here, before the heat chases us back inside. At least there, every day is useable. And we could find work more easily there through the winter. I don't know that it's a serious consideration because housing is as tight there as it is here, but as this transition period in our lives stretches to an unpredicted length of time, our imaginings get more and more creative. We have made some amazing friends here, but as far as place goes we are as at home here as we have been anywhere else, which is to say, not hating it but not particularly attached to it either. Home is the part of our lives we take with us- each other, kids, dog, quilts, kitchen table, recliners and couches that are comforting and familiar no matter what walls surround them. Although I will say it usually takes me the better part of a year in a new home before I stop actively mourning all I left behind in the old one, be it friends, favorite haunts, trails my feet have memorized, or comfort foods in out of the way restaurants. 

In a way, I wonder if Loveland still is, to me, what happened here. We didn't move here for an easier life, and it didn't disappoint. I spent six months alone in a small, unfamiliar house while B worked 100+ hours a week, and as hard as I tried to find the places other moms hung out, when I did they seemed not terribly eager to be friends. I can't blame them. One is never too eager to make a new best friend of a woman about to have her life turned upside down by a new baby. You can't ask the hugely pregnant one to meet for drinks, or really anything else really, especially if she has nobody to leave the toddler with. And all the rules change when the baby is born. A formerly down-for-a-good-time mom becomes an uptight, tearful, lactating, sleep deprived hostage to every whim of a floppy, eight pound human. I did finally find a group of smart, drama-averse moms on a Meetup group, went to exactly one play date, planned on going back, then the baby was born and cancer happened and by the time I went back, I felt like even more of a pariah. But they hugged and welcomed and didn't seem too weirded out by the many factors that made us weird and pathetic, and most of my friendships here have stemmed from that group. 

Life is still hard here, as it is anywhere. It is easier as far as loneliness, baby, and cancer are concerned. But we no longer have a steady paycheck, and that is stressful. We keep circling around in our reasoning and our planning when thinking about our future. Our problem is, we are at such a pivotal place right now, a seminal moment, and we are terrified to rush into any direction from here that might preclude other directions. 

We know if we get 9-5 jobs, five days a week with weekends off, predictable schedules, predictable days, predictable incomes, in a year or two we will find ourselves in the midst of yet another existential crisis. It happens every single time we get a "real" job. Unpredictability is our jam. We fly by the seat of our pants, and it is often stressful to do so, but when we decide to plan our future we immediately feel like hostages to our own determined trajectory. So for six months now, we have talked, discussed, debated, weighed options and possibilities. 

Long past the point when normal people would have simply filled out an application to drive a garbage truck, deliver the mail, stock shelves at Home Depot, we are taking odd jobs here and there to pay the bills, trying to not touch our small savings account we have earmarked for future business startup, wishing there was some way to turn "odd jobbing" into a career. Which, there is. But when you are the boss, you are also responsible to keep the odd jobs coming in. Which means you are a marketing manager as well as odd jobber. 

There is no perfect scenario. We have to decide which imperfect scenario involving a lot of hard work and commitment we most want to invest our energy and time in. So here we are, stuck in analysis paralysis. Anywhere within an hour and a half of Children's Hospital with in-network local healthcare providers is an option for us. We can get more than enough rental income from this house to cover our mortgage, and could apply the extra money toward renting another house somewhere else, if somewhere else is where we want to build our future.

It is a weird, wonderful, terrifying, stressful feeling being at square one. We have always been on a trajectory before. For the first time in our lives, our forward momentum has stalled. The moment we take a first step, that step will necessarily be in a direction. Second, third, fourth steps build momentum. Very few people get the opportunity we have right now. Only a few get to decide, as adults, which direction they want to build future momentum. This is our moment to set into motion events that will compound in the future, opening some doors, closing others. Right now every possibility is ours. The moment we step off the plate, certain possibilities will become unavailable to us. So we raise a foot to step, and we hesitate. We want this to be it. We want whatever direction we step to be one that leads resolutely forward, not one that runs into a dead end and dumps us back on square one. Once we leave square one, we want to never return. And we want to never want to return. We want whichever direction we start off in to be the one that positively shapes our lives, defines our boys' childhoods, influences the adults they become, determines how we spend our sunset years. Right now, on square one, we stand with one foot up, ready to step, and we just can't do it because we just don't know if we are enamored enough with any direction to be ready to fight for it as we know we will need to once that foot hits the ground.

So there's that. Eventually our supporting leg will buckle and we'll stumble off square one without having actually chosen which direction to go. I'd like to think before that happens we will have broken out of our pause and made a decision. But for now, B has at least three weeks of odd jobs lined up here, more in Kansas if he needs them to fill some gaps, we're not going backwards any more than we are going forward, so we've moved some furniture onto square one and made ourselves comfortable. May as well do something while we are doing nothing.

As a quick little footnote, I've decided to "scrub" a lot of Daniel's online presence, at least that of him where he is obviously sick. I deleted his Facebook page because I feel like we no longer need it for updates that are too quick for this blog. I set it up so strangers would not need to be my personal Facebook friend to follow his progress, which would allow me to be less concerned with privacy and being too revealing on my own Facebook account, but now that we are in maintenance, it is a bigger concern to me to just let him be normal and little and to maintain his privacy boundaries for him until he is old enough to set his own parameters. Maybe one of these days I'll get around to editing the pics on this blog, either blurring, watermarking, or removing. 

Cancer is a big opportunity to use people's emotions to open their pocketbooks, unfortunately. I never want to see a pathetic looking bald kid being used on a strangers gofundme, only to recognize Daniel's face. It happens. Surprisingly often. He deserves to beat cancer, not be exploited as someone else's made up story for attention or money. I am trying to not post pics in which he can be easily recognized, and none in which he looks too sick. It has been a surprise to me how many people want to follow sick kids, and a little scary, to be honest. 

And on that note, we're off to bed. I started this post five days ago, we are now on day five of prednisone, which means Daniel has zero impulse control, a raging appetite, is a regular bully to his little brother, and is already starting to look puffy in his tummy and face. Good thing it's done for another month after tonight's dose.