Memory harvest

Hello, and welcome to the memory harvest. 

Every bad thing we witness has an effect on us. Mostly, it makes us feel insignificant and out of control. These things happen to people no more or less deserving than us, and nothing can be done to stop our collective, inevitable march toward the end. There but for chance and fortune go I, we say when tragedy strikes somewhere else. I used to say there but for the grace of God, but lately, maybe because we have been on the receiving end of some crap and have put more thought into the "why" than it takes to repeat a cliché, I no longer say things like that, or things like "we are blessed". Not because we aren't, but because of the unfinished edges of the implications such a statement makes toward those less fortunate, less blessed, more touched by tragedy. When one states that a blessing has been given, one leaves a glaring negative space in the implication that blessings have been withheld from others whose stories took more tragic turns than ones own. I must say, I'm still struggling with the question of why things happen. Oh, I know the canned answers. The world is imperfect. Imperfection and consequences of mistakes cause bad things to happen. But they leave something missing, yet, for me. The world would be such a neat and tidy place, all speculation of cause and effect could be fair game, if it weren't for the suffering of small, innocent children. 

Yes, I'm going somewhere with that. I'm searching for a good segueway into talking about the feelings of impotence, of smallness, of the loss of control over the things that befall us, and the mounting urge to do something, anything, to take the reins of ones own life and make that one life mean something. 

Time keeps approaching, brushing past, then retreating into nothing more than memories of past experiences. It is enough to make one we realize only one thing can be controlled, and that one thing is the beauty and quality of the memories one has stored.

We are in full blown memory harvest. We are hoarding memories, frantic lest we lose one. We weren't like this before we realized pediatric cancer could rip our future memories away, before we had the chance to make them. But now, with two little humans growing up all around us, we realize so keenly the importance of remembering that we don't get a do-over for even a single wasted moment. My phone has so many pictures on it, and these aren't posed or edited or polished pictures, they are candid snapshots that, when viewed in the future, I hope will provide a route to access the memory of the moment it was taken. I fear losing my memories more than losing my ability to control my body, more than death. Now we say things like, "I'm going to be so sad when I no longer have my little boys", and we aren't being morbid, we are simply acknowledging that they will leave us some day. Whether budding adulthood or tragedy takes them, they will be gone. 

So we create, then harvest the memories and emotions each day brings, and try to savor each moment, and we just can't. It is too much. They come too fast, they bring too many emotions, and it is just too overwhelming, and too much pressure, and so much simply gets lost. 

It is summer in the mountains. Sunlight is too intense. Breeze feels too gently cool. Grass is too green, mountaintops too white, rivers too musically rushing, lakes too deeply blue-green to be properly processed. It's too beautiful. It hurts to be surrounded by it. And then, the sweet intensity of two innocent, beautiful towheaded boys tugging on me, asking endless streams of questions, begging for me, for my approval, my knowlege, my authority, my love. Their eyes are too blue, their lashes too long and dark, their dirty bare feet and suntanned toes too busy. It's too much. I want to experience it all properly because it is all so fleeting, and I just can't. 

So I do what I can. Almost every day I ignore growing piles of laundry and an increasingly messy house, pack a lunch, hook the bike trailer to my trusty, prized blue classic steel road bike, and we ride over the twisty, hilly bikepath, flying through deep pine shadows, past wildflower covered hillsides, along the roaring Snake River, swollen with snowmelt, to our favorite places. One day it might be a calm, shallow portion of a tributary to the Snake, up a steep gravel road. We might be found splashing, jars of fruit smoothies submerged in the icy water for when we get hungry. We might spend hours constructing bridges, dams and roads for the toy cars we brought along, and when the shadows grow long, three exhausted humans, one big and two little, will make our way back home to see daddy and tell him all about our day. Another day it might be Keystone Lake, with pockets full of carefully hoarded quarters to put in the fish food dispenser in exchange for a handful of pellets, which we toss into the water and jump in delight at the feeding frenzy in which the trout engage. We might hang on the jungle gym, dig in the sand, send toy trucks rocketing down the slipper slide. Another day we might ride around the lake to the campgrounds and day use areas located on the other side and spend long, sundrenched afternoons throwing sticks into the water, trying to skip rocks, exploring trails, collecting pinecones. And yet another day, we might use a key to gain entry to a pool in a condo building and pretend we are on vacation, swimming, splashing and shrieking, eating lunch at a real table with an umbrella. 

You would think I would lose a few pounds with all the biking. This has been an easy week, lots of trips to Keystone, and I've still pedaled more than 110 miles this week, most of them with 80-100 lbs of kid and trailer behind me. But no. I feel myself hardening, toughening, but weight loss has not been my priority and it hasn't been a result, and for the first time in my life, I am calm about this. This sort of effort requires fuel. Im not going to deny myself those wonderful picnics. I am a nearly 34 year old mother of two little boys. My priority is not to take up less space. It is to experience all the things. 

As steady as the heartbeat in my chest is the thudding dread that drives our manic search for joy and beauty and the best, most unspoiled memories. We don't know if this is even more temporary than we assume. With each blood test, with each lumbar puncture, abnormal blood cells could be spotted, and overnight, it would all end. We would be inpatient immediately. More chemo. Harsher chemo. Another nightmare month of high dose steroids, followed by hard decisions like trying to get into trials for CAR-T or go the more conventional route of bone marrow transplant, or maybe there would be no decisions, simply being told this is the only treatment option available to us. We could be in a honeymoon right now. Or it could be permanent. We don't know. But it's enough to make two parents cling fiercely to every perfect moment, just in the rare event it could be the last one.

Each night, after a glorious day, Daniel snuggles into the covers between us, and we make no effort to remove him. We plant kisses on each of his cheeks, and we ask him if he knows how much we love him. He says he does, of course. He stretches his arms out and says, "This much!" We then repeat how much: "To the moon and back. Deeper than the ocean. Higher than the clouds. More than all the stars, and wider than the whole, wide world." He sighs and falls asleep, and we watch him sleep and talk about how smart and handsome he is becoming. Not to discount little brother, who is usually snoring by this point half in his bed, pushed up against ours, half in mine, arms flung out and little fist grasping whatever part of me he still has a hold of after we have snuggled to sleep. He is usually muttering in his sleep, because not even slumber can shut him up, bless his expressive little heart. 

Through all the happy, Bobby is working. Sometimes he gets days off that he didn't realize were going to be days off; the phone never rings. Sometimes he takes days off that turn into twelve hour work days. Sometimes he dares to go on a bike ride only to have me come pick him up on the bike path somewhere because something fell apart at work and he is needed immediately. It is frustrating, but still, he has to admit, well suited to his personality. He doesn't enjoy life doing the same thing day in and day out. Better for him if every day has a new and unique emergency. 

Life is good, it is summer both at the moment in Summit County and in this time in our lives, the memories are ripe, and we are doing all we can to preserve them.

The moving life

Hello and welcome back! It's been far too long, I know. Life hasn't stopped, but I haven't been stopping to record it lately. It's been coming at me just a little too fast, like I'm perpetually running up a Lego-strewn "down" escalator. Last time I checked, it was sometime in February, and now it is past mid-April. That's a lot of water, I mean Legos, under the bri- I mean feet.

I am haunted by a refrain, ricocheting through my thoughts as I ricochet through my world. "Am I enjoying this enough? Will I remember this? Will this stay with me?" 

Little brother is just ridiculous lately. Two is such a ridiculously beautiful, golden age, he talks a mile a minute and is so innocently sweet with big wet kisses, tight hugs, and proclamations of his devotion- "you aw my best friend, mommy. I wuv you sooo much." Of course, the next moment he melts down over something terribly important like the color of his sippy cup. And the next he is demonstrating his best songs and dances for me. And the next, inconsolable because Big took his toy. And the next, stranded on the kitchen countertop. And the next, dumping his orange juice on the floor so he can drive toy cars in the mess. My life is basically a whirlwind of adoration and exhaustion and laughter and the need to take just one moment to poop by myself. And maybe, occasionally, taking the dog for a walk while Bobby experiences the small humans alone.

Big brother is developing a much larger emotional landscape and paints a new picture of it every day. He's violently angry. No, resentful. No, feeling the need to tightly control his surroundings. No, floundering in despair. No, confrontational. No, remorseful. No, excited. No, demandingly impatient. My happy, tranquil boy, the boy who took everything in stride and walked to the beat of everyone else's drums without fighting for two years now, is suddenly, finally beating his own drum and demanding we all dance feverishly to it. He cries easily when challenged, and it takes so much time, time I have to remind myself that I have, that nothing is more important, to sit with him, talk about things with him, calm him, and love him through a hundred upheavals a day. He is losing the sweetness and compliance he used to have, shedding his happy toddler enthusiasm along with his baby fat. I struggle with questions of whether his emotional instability is because he has had chemo breaching his blood/brain barrier and roaring through his fragile developing brain for two years now, or if he is just four. At night, when he has fought himself into deep, exhausted sleep, I curl my body around his and whisper to him how much I love him, and how he could never get so difficult I will stop fighting for him. This isn't to say he doesn't have his moments, moments of sweetness and caring and empathy that surprises me. But as he becomes a person, he becomes complicated, and he challenges me in the most genius ways. Not to mention the questions. He is making up for having been non-verbal for so long with probably a thousand questions a day. When we finally throw up our hands and ask, "Why are you asking so many questions?!" He responds with, "Hmmmm...that's a good question!" Or sometimes, "I don't know...Why do I?"

Intensity. That's why I haven't stopped to write. Every emotion is so intense and must be addressed immediately. Every need is imperative. Every thought must be heard and responded to promptly and appropriately. 

And joy. Joy has permeated our house, the sort of joy that comes from being surrounded by innocence. 

How can I hold on to it? These two are changing in front of my eyes, every day, reminding me of the transience of building an identity around and finding joy primarily in them. I suppose this is the emotional process that prompts some to keep having more children, but the notion does not seem attractive to me. It isn't the mere fact that they are children that lights me up, it is the fact that they are my Big and my Little. The thought of adding more intensity does not appeal to me when I realize how many of the beautiful, simple moments I have missed, have not borne witness to, because the intensity clouds my view. How many moments have had something amazing happen in them while I was too busy to notice? I want to store it all, every giggle, every squeal, every mangled sentence and awkward tower of blocks they construct. As they mature, I am so excited about traveling their roads with them- we have so many trails, literal and not, to explore together. Their bodies are growing strong, legs are stretching out, and soon we will be having amazing outdoor adventures together, where I will share with them all my favorite things; the damp, sun-warmed dirt and pine scented breeze on my favorite trails, the brief feeling of weightlessness underfoot when cresting a hill on bike or skis. I want so badly to share the world with them in their most formative years before I am replaced by peers and budding individuality. For four years now, I have been more or less housebound, watching my body soften, my face grow pale, dark circles form under my eyes, while I have changed inside as well- my heart has also softened, my interests have also paled, and my circles of friends have grown smaller. 

It isn't that I want my old self back, it's that I long to take my new self with its little tow headed satellites out into the great, wide world with me and show them all the beautiful things. So no. For me, another child is not the answer. To keep repeating and extending this time of hopeful toddler innocence is not the answer. But because time moves in a linear path, we are always leaving something behind, always choosing between staying put and moving forward, always losing one thing to gain another. 

In my case, Little's head full of flaxen curls represents it all. I press kisses into them, run my fingers through them, and my heart develops a thousand cracks when I realize I will lose him. Because I will. That sweet little head pressed into my shoulder, it will someday lift from my shoulder for the last time. I could have a dozen more babies turn into toddlers with silken curls, but those curls will soon stop tickling my cheek just the same, and while I am frozen in time as a progression of curly heads rest on my shoulder, I will miss the intricacies and patterns of sunlight and shadows on the trails preschoolers and preteens and teenagers must walk, trails I can't wait to watch them travel, to walk just a little behind them, the better to observe their reactions to the hard and painful and beautiful things.

I know some who read this will think it sounds like I intend to hover. But this is why I am struggling with questions of identity lately. I am not solely a mother. It feels like it, but I know, and the knowledge is so sweetly excruciating, that I am raising them for the express purpose of achieving an end goal, and that end goal is them finding healthy independence apart from me. When they happily, confidently walk away from me, I will know I have succeeded as a mother. This knowledge is why, between now and then, I know how imperative it is that I am first a mother, but close second, an adult person who walks my own path, that path chosen while my own mother stood tearful, her own primary identity, by necessity, shattered by her child's independence.

More than ever, with only a little over a year left in Daniel's treatment, I live in two worlds. The happy one is the one in which his cancer does not exist. We are already striding away from this experience, leaving it behind us even while we are still in it, with long steps, our heads high, with no thought of any remote possibility that cancer can take any more from us than it already has. 

But the underworld is still there, the shadows and dread seeping from the earth when we least expect it. Sometimes I am skipping along in the sunshine and without warning, a crack opens and I tumble in, and until I can climb back out, I cower in the shadows, down there in the foul air, breathing the toxic, creeping fumes. It happens when I hear of a friend or acquaintance parenting a child through a relapse and I'm reminded that just as we were once parents who didn't even consider the possibility of our child having cancer, we are now parents who don't even consider the possibility of a relapse. While I'm down there, I let the fears roll over me and am choked by the suffocating imagination of what it would be like. In that moment, there is nothing. It is then I realize our joy also comes from something beyond, and far more dangerous, than hope. It comes from belief. It comes from being not merely hopeful, but rather sure cancer is strictly in our past. It is then I realize we have no safety net. We would fall just as hard, if not harder, the second time. 

Our strength is in choosing to be oblivious, and that is a perilous source.

I am on a worldwide forum of parents also dealing with this disease, and a few themes of discussion are recurrent. Is this symptom/that rash/this pain normal, they ask again and again. How do you walk the line between having a life and keeping your child healthy? How do you stay calm when everything sends you back to the moment you most thought you would lose your child? How do you manage family stress when you cannot be an adequate parent to your other kids, or an adequate mate to your spouse, because your first responsibility is to support your child fighting cancer? And every once in a while someone will start a thread that quickly devolves into "things you shouldn't say to someone with cancer", and "horrible things people have said to me". 

I always read through these with bemusement. Some are truly horrifying, like, "when is your child expected to die?" and "your child wouldn't have cancer if you hadn't (given them sugar, vaccinated them, drank water from copper pipes, lived where you did, fed them red food coloring, treated them with vitamins instead of chemo, etc, etc, blah, blah, blah)." Some are more benign, like "thoughts and prayers" and no further contact. Some are well intentioned but tiresome, like the many suggestions a cancer parent receives to try essential oils, cannabis, and elimination diets in addition to chemo, which is far more complicated than someone unfamiliar with their treatment protocols might expect, or to try those things instead of chemo, which puts a parent in a terrible position. And some are just mildly discomforting. I find it interesting how many people fighting huge battles take issue with the compliments meant to lift them up. 

"You're so strong. If I were in your shoes, I'd just die."

It doesn't seem like this would be a hard one to hear. But oddly, it is. Many similar threads on said forum got me to thinking about why it is that nobody wants to be called strong. After all, it is a positive trait. So why does the word make someone fighting big battles want to fall apart? 

The way I see it, we all have people in our lives who have a harder road than we do, and we admire the hell out of them for traveling it with grace, while at the same time experiencing a rush of gratitude every time we are reminded of their circumstances, thankful that so much sacrifice and pain has not yet been, and may never be required of us. I feel the way about parents who have lost their tiny warriors that "normal" moms feel about me when they catch a glimpse of what childhood cancer is like- a mix of awe, admiration, discomfort, pity (yes), and sadness. I tell them the ways their situation reminds me to live and love in this moment, the moment I have with my kids, that this joy we now intentionally find in each moment together is a beautiful legacy their child has given to mine, and it comes full circle when other moms tell me how our very existence in their lives makes them realize how fortunate they are for their kids' health that would otherwise have been taken for granted. 

I think it is just hard to be told we are "strong" by someone who dismisses the trait as inherent instead of something we have chosen to fight the biggest battles of our life to become, have clawed our way into, and fight to hang on to every single day. I'd much rather hear, "You and your kid are badasses who make me realize how much crap humans are capable of surviving, and also, here's some chocolate because there is no way you are as okay as you seem. I hope if I ever have to be as badass as you are being right now I can make it look as easy as you do." Which is essentially what people are saying when they say "you're so strong" and I recognize the sentiment. But not everybody fighting a big battle does, especially when it is stated in a manner made even more awkward by the fear of being improper and the discomfort of imagining ones self in suckier shoes than ones own.

At any rate, things are good. Daniel is exhausted, but he has also shot up almost an inch in the last two months. His weight has not gone up, so he is looking more lanky by the day. The layer of little boy padding over his port is gone, and for the first time I am starting to see not only the outline of the reservoir bubble under his skin, but the outline of the tube under his skin traveling from his port up toward his left clavicle. His hair seems thinner, as well, which can happen during maintenance chemo, although hair loss after frontline treatment is fairly uncommon. He is pretty rashy at the moment, especially his face, but again, not uncommon. The sun, sunblock, and his chemo work together to really inflame his skin. We went to Kansas over the weekend and he may have brought back a tummy bug, because he spent the night vomiting. It breaks my heart that he is so used to vomiting that he requires no supervision. Just a bowl and a quiet corner to watch a movie, so he can puke in peace when he needs to. He is challenging and tough and amazing and unlike the adults in his life, hasn't learned to lie- when he seems okay, he really is okay. 

'Til next time, dear ones. Hopefully it won't be so long next time.

Let's talk about healthcare some more

A grand adventure is never complete without a financial analysis, and it has been awhile since we've had one of those. I always hesitate because I don't want to sound needy. We aren't needy. We are quite resourceful, actually, and doing okay, thanks to certain programs we've been able to take advantage of. I also don't want to sound like we are doing too well, because, well, accurate representation. So here is a bit of where we are at, no extra polishing, no making it worse than it is, just an honest account of our experience in Crazy Cancer Land. 

Our biggest issue right now is finding insurance once we inevitably exceed the cutoff for the Medicaid coverage that has kept us solvent since June.

So let's break this down. Realistically, shopping for insurance on the open market, the cheapest plan we can find will cost us $29,500/year. This is taking into account premiums, deductibles, copays, etc., because when you are saddled with a cancer diagnosis (or anything else chronic or life threatening) you WILL squeeze every penny from your insurance. Yes. We're what's wrong with healthcare. We get it.

So. Stay with me here as I wax hypothetical... In order to afford almost $30,000 a year in medical expenses in a family of four with two young kids, instead of staying home with them, mom (or the non-primary breadwinner, who in our case is mom) has to get a job. Guess what? Now you have to add daycare to that. Let's say $20,000/year to leave the kids with someone else five days a week. I don't know if that's realistic, but that's about what I found two years ago looking at commercial licensed daycare. While they raise your kids, you now have to make $50,000. This, of course, doubles or even triples your income. Now you are in a higher tax bracket, so let's add around $10,000 for that. (I don't actually know, just stabbing in the dark on that one, but in our non-hypothetical case, we're self employed so our tax bracket is pretty high.) So now mom has to make $60,000/year. And for that $60,000, she sees zero net rise in her family's well being. In fact, not a penny of that is available to be saved or spent.

Let's be honest. What possible motivation would a family living just under the qualifying cutoff for Medicaid ($32,000/year) have to go over that cutoff? The primary breadwinner could much more easily cut back on his or her hours to fall below the cutoff, have time to spend with their family, mom (or non primary breadwinner) can stay with the kids and raise them at home, and their quality of life is higher than if they worked hard and made an extra $60,000 (still with me? That's $92,000 for the family- the original $32,000 cutoff that, when they exceeded, bounced them off Medicaid, plus the $60,000 needed as a consequence.) 

So now let's say, in 2020, there is a freeze on new Medicaid enrollees. This means that even if a family decided to do the "right" thing and make a stab at working hard enough to make that extra $60,000, they pay for their own health insurance... But in a few years, they realize they can't swing it. Maybe they have another kid, or a health crisis, or a vehicle breaks down, or literally any unforeseen expense. Now they don't have the option to go back to one income and Medicaid. Guess what this means? Thousands if not millions of people right now are doing the math. "If we try to be self-sufficient and we can't, in four years we will lose our safety net. Well, it was a nice thought, but we can't risk it. Guess we'd better move the recliner to the front porch because we're gonna be spending a lot of time there, now that we've decided to make even less money for the foreseeable future". 

Of course, the American Dream being what it is, a more likely scenario is that they will still work hard, just not hard enough to make up the difference, exceed the cutoff, shop for insurance, realize they cannot afford it, and become uninsured. 

So about that: 1 in every 285 kids will be diagnosed with cancer in the next year. 

In our experience, an overnight stay at a U.S. children's hospital costs about $7,000/night.

Certain chemotherapies (used to replace more common ones if the patient has an allergic reaction as happened with us) cost over $200,000/infusion.

At home oral prescriptions can cost from $300-$700/month (or more, that was just our experience before we had prescription insurance.) 

We and our insurance have paid over $1.5 million to keep our child alive. We never thought it would happen to us. There's a 1 in 285 chance it will be you next, and that's only childhood cancer, it doesn't even account for adult cancers or other health issues. I don't say this to freak you out about cancer. I say it because I want everyone out there to understand how imperative it is that Americans have access to healthcare, and how hard it actually is to chase the American Dream, that belief that you only have to work hard to achieve your financial goals. 

We're happy. Like most Americans who have never had to choose between food and heat, we naively assume it'll all work out for us. We live well, if minimalistic, which is exactly how we like it. But if anyone wonders why they shouldn't judge someone as a "welfare queen" because they intentionally make less money than they could, well... it's complicated.

What isn't complicated is living where I can walk outside my back door, climb from my driveway, up three feet onto the snow, and find myself in a silent, white world, just me and a happy dog and the mountains sliding under my skis. It's free. It makes happiness. We don't need a lot here. Our big expense is a ski pass, which means we can go on vacation three miles from our house whenever we can get away. Our house is small, which I love aside from storage issues, which wouldn't be an issue if we weren't running a home repair business out of it. Two alive kids are, when you think of it, especially through a lens of how it could be, the most amazing thing we could ask for. The future might get harder for us, looking forward in light of certain proposed healthcare changes, but the only bridges we can cross are the ones we are standing in front of. 

You might be a hot mess if...

I am going through old bits and scraps of writing stored on my phone, trying to make room for more photos, and found myself laughing and crying a bit at this list. There are so many things one forgets. I'm glad I wrote it down, because it reminds me that even though I don't remember laughing about the small stuff, I obviously did. 

You might parent a tiny cancer patient if:

You have made another person vomit with an odor emanating from your own body.

You have ever "mined" someone else's vomit for traces of very important meds. 

You wish your kid could be bald all the time. Bath time was so easy. 

You use cancer as your excuse to be antisocial. You need you time.

You use cancer as an excuse to demand a moms night out. You deserve this. 

You ruin moms night out by checking in with your child's caregivers approximately fifteen times in three hours.

You have put masks on yourself and your kid not because you necessarily need them, but because if people think you are contagious they tend to not get close enough to breathe on you. 

You have feigned a dramatic coughing fit while wearing said mask to clear the produce aisle, making grocery shopping so much easier.

You have used an emesis pan in ways never intended.

The entire oncology staff has seen you topless.

Your friends smuggle wine to you like drug lords.

You can make a gourmet meal by combining the foods found in the patients-only snack cabinet and fridge.

You say "Sulfamethoxazole-Trimethoprim" without stuttering.

You casually identify the chemical burn on your leg as chemo pee.

You describe your child's poop by likening it to foods, barely noticing you may currently be eating those very foods: hummus, mashed potatoes, fruit cocktail, tapioca pudding, melted milkshake, Raisinettes, Almond Joy.

You have made a customer service agent of an insurance company regret the very day they were born.

You have turned a pair of dirty underwear inside out, rubbed hand sanitizer on your armpits, and called yourself refreshed. 

You have decided using hand sanitizer on other body parts to replace the need for a shower goes a little too far, because the burn.

You have strong opinions about different styles of hospital bed rails and aren't afraid to share them. 

You know the value of a good dry erase marker.

You find yourself secretly, shamefully attracted to your child's doctor, a man you probably wouldn't notice outside the hospital. (Those low, swiveling stools, though. Don't look down...aaaand you looked down...)

You find yourself greatly relieved that you are also even more attracted to the father of your child once you've seen him covered in vomit and chemo pee. 

They say "procedure under full sedation" and you hear "Enough time to get a burrito".

You know that while call lights have unproven response times, flatulence will bring a whole team of caregivers to your child's room within seconds.

You have ever blamed flatulence on a kid with cancer.

You have ever flipped off a kid with cancer behind their back for being a little jerk.

You have ever realized your little jerk is the person you most admire in the whole world.

You have literally begged the universe for cancer if it means your child not having it. 

You plan birthday parties on Pinterest, but if you're honest, you have a few secret ideas you've pinned in a dark corner of your brain for the practically nonexistent chance that you ever have to plan a funeral.

You've seen another parent lose a kid with the same prognosis your kid has and still don't actually, truly believe it could ever possibly be you.

You aren't sure if you are okay, but you are speaking in coherent sentences and cracking lame jokes, so you are feeling pretty darn good about your chances today. Granted, it's only 2am rounds and nothing completely falls apart until shift change.

3 days on 7 East

I guess I forgot to post this one when it was written. Oops. It is two weeks later now, cultures remained clear, and we are booger free, vomit free, and fever free for two weeks now. We unenrolled Daniel from preschool and have kept him and us on pretty strict contact precautions, limiting contact with the outside world, for about a month now, and it has paid off in us all getting well again. Just in the last week, we've started getting out again, mostly outside public spaces like skiing with the occasional trip into the ski lodge for bathroom breaks, or swimming in Keystone's heated outdoor pools (that we wait until late in the evening to poach so we don't get busted.) On other fronts, Bobby is feeling much better after his voluntary mangling, the weather has turned warm and created cement-like 6 foot snowbanks and delightful muddy puddles to replace the deep, fluffy powder we started this season with. Not that the kids mind. They are both starting to learn how to ski, so less powder to pull their skis around and more sunshine to keep them warm is perfect.

So here is that outdated update. Sorry 'bout that. 

***

It finally happened after a year of avoiding an inpatient stay- we're in the hospital. Right back where we started, too- in the clean-obsessed, clamped-down, tiptoe world of the bone marrow transplant floor. Not sure why they put us on 7East instead of the more relaxed 7west, probably because they were full on 7west, but our presence here is all the more jarring because of Daniel's thick hair and obvious health compared to the wan sickness of most of the patients here, at least the half dozen we see who are not on contact precautions for their own or other's safety. 

On Thursday, my beloved husband did something that means the world to me- because he loves me, he spared me a medical procedure ensuring permanent birth control that, had I had it done, would have meant much higher risks, invasive internal trauma, and a much longer, more painful recovery. As it was, it wasn't exactly a walk in the park for him either, and he spent most of the day informing me he had decided he did not love me after all, and micromanaging my driving to ensure the smoothest ride possible for him, since we had to drive two hours to have it done, then two hours back home, and he wasn't allowed to drive afterward. Because the appointment was late in the day in Fort Collins, he did not want to get caught in rush hour traffic on I-25 or in Denver, so instead of picking up ice packs or pain meds, we hit the road for home immediately. This turned out to be a good decision as we watched the roads we had just traveled turn red behind us on our traffic flow apps, but not such a good decision as far as pain management was concerned.

Once we got home, he cautiously lowered himself into a recliner and allowed Daniel to creep onto his lap for an evening of de-stressing while watching "Cat in the Hat" together, I cooked, and by cooked I mean I opened cans of soup and heated the contents in a pot. We fed our hungry boys and I began the soul crushing job of cleaning our house before bed. Around 8:30, I remembered Daniel's rash on his hand, and that I had wanted to test the possibility of it being fungal by treating it with some tea tree oil, so I mixed some in some carrier oil and rubbed it on his palm...and realized his hand felt oddly hot. His forehead felt cool, but just to play it safe I took his temp. 102.2.

"What. The. Fuzz." I might have said. "This is not happening tonight."

"What fuzz! Happen 'night?" Alex repeated. 

My mind immediately began clicking through the situation. 

1. Incapacitated, drugged husband incapable of doing more than painfully shuffling about.

2. 21 month old incapable of falling asleep without me, at least without a lot of inconsolable crying.

3. Local ER generally takes longer to get bloodwork done than it takes us to drive to Children's.

4. We were just. in. Denver.

5. Last time he was accessed, nobody could get blood return.

6. This time it could actually be a central line infection, since his port was accessed twice under less than ideal conditions nine days ago. 

7. His counts had fallen by half nine days ago, so following that trend, we strongly suspected he would be neutropenic, so we needed to get him accessed and bloodwork done ASAP.

8. This felt like a likely inpatient scenario, so I needed to pack to be gone for an indefinite amount of time.

I wasted a few minutes trying to decide which was more important, sparing Bobby the nightmare of bedtime with a toddler who has never gone to sleep without his mommy on the very day he voluntarily mangled himself, or getting Daniel to the ER in case he was potentially going septic. Daniel looked pretty well, giggling at the Cat's Thingamajigger, snuggled against Bobby's shoulder, so I grabbed Alex, turned off lights, forewent all bedtime routines such as teeth and jammies, and lay down with him to let him nurse. It took about a half hour for him to unwind, then relax, then finally sleep. I got myself eased away from him and out of bed, then sprinted to the bathroom, threw some essentials in my purse, swept some shirts and jeans off my closet shelf into a bag, grabbed some shirts and jeans for Daniel (notice what I am forgetting here?) and threw it all in the car. I drove tensely over icy roads until the ice gave way to dry pavement, then broke the speed limit, and once here, they let me breeze through the waiting room and into the back like it is supposed to work when a possibly neutropenic kid comes in and everybody is on their game. 

This entire time, Daniel was beside himself because I had so rudely interrupted his cuddle time with Daddy to put him back in the same car seat he had spent most of his day in, and was loudly vocal in his judgement of the fact that I was by far the inferior parent and if I were his Daddy, all of this would be so much easier. Now that he has started talking so much, he has a surprising vocabulary with which to express himself, and he used it liberally to inform me of my many parental shortcomings, the chief of which was I was not the parent he had chosen to be his friend on this particular night.

His access was rough, the nurse puncturing his skin, then sliding the needle around on the surface of his port before shoving it into the rubbery reservoir. He cried more than is usual for him. There was no blood return as expected. The nurse (who I had decided to like, but then had strained our relationship with the sadistic port access) announced she would have to access his arm vein, and to her surprise he pulled up his sleeve and flopped his arm out, vein up, ready for the needle, no hesitation in offering her a second chance. So naturally, she then performed the most brutal venipuncture I have ever seen, pushing the needle into his skin, then rooting around under it for the vein, tearing more than puncturing, blood running down his arm onto the bed sheet. He has a big, gorgeous vein and has never had the experience of a poke being more than the half-second of sliding the needle into it. He cried and cried, inconsolable, tears and snot all over his face, while I nursed him and simmered. 

They filled his port with TPA, an enzyme to dissolve the clot or fibrin sheath or whatever was blocking blood return. Since they could not draw cultures from his port, they drew them from his arm, then started fluids and antibiotics in the same arm. Bloodwork came back revealing he was indeed neutropenic, which meant we would be staying upstairs in one of the 7th floor luxury suites for at least the next 48 hours, which is about the time frame for things to start growing in his cultures if they were going to.

After many failed attempts and a second dose of TPA, the port finally returned blood about 4am, so cultures were taken from it, but that was after broad spectrum IV antibiotics had already been given, so that might affect the results. From what I understand from other conversations during other stays, it is somewhat of a complicated thing if a biofilm forms over bacteria in a central line, it can be fairly easy to blast with antibiotics and clear up the surface, thus getting clear cultures, without getting all the bacteria under the film, which apparently can work its way out again later. I dunno. I only went to high school. 

In five hours, the cultures from his arm will have had their 48 hours of fame. His fever has been gone for over 24 hours. Those are generally the only criteria for discharge as long as counts aren't too concerning. But. His ANC has dropped further. Until they are sure his counts have hit nadir and are trending back up, we'll be here. They'll do more bloodwork early tomorrow morning to see if we headed back up today or further down. 

I have to say, the hospital with a four year old who feels okay is so much easier than a sick, miserable three year old. I am amazed by how much more self sufficient he is this time. I can leave him in the room by himself and get a cup of water. He pushes his own "octopus on wheels", which is what he has christened his IV pole, holding his tubes up so he doesn't step on them. He takes himself to the bathroom. 

In the meantime, word from the other half of the family is that Alex and Daddy are doing fine. Apparently Alex will go to sleep for his daddy with many repeat renditions of "You are my Sunshine". He still wakes up and goes stumbling around the house at night searching and crying for me, but once he is reminded that I am at the doctor with Daniel, he stoically climbs back in his bed and lies there silently until he falls asleep. This both breaks my heart and reassures me. He is okay. He loves me and is incredibly reluctant to leave me, as a kid with a healthy sense of attachment should be. But when I am not there, he finds other sources of comfort, as a kid who is confident he is loved should. I guess it's working, this idea that I want to intentionally parent them with constant availability to prepare them to chose when they withdraw from me as a source of comfort rather than forcing them away before they are ready. I needed this test. We both passed. Velcro boy can function on his own when plan B requires it. 

Since it is working for Alex to stay home with Bobby, we are making do without the things we forgot to pack. I think it is amazing that a four year old on fluids is still in the same undies, but he is. Not to fear, I've been hand washing with hand soap and hang-drying our delicates overnight. I admitted to a nurse that I was running around commando while my undies dried, and she disappeared, then returned with a brand new pair of cutesie panties, tags still attached. Turns out, people occasionally donate brand new underwear because they have been here and know the struggle. She said it was the last pair they had, and it was a good thing I wasn't any bigger because they actually fit. I know what I'll be donating to them the next time I find a great sale. Of all the curtesy items offered to us in all of our stays, this was by far the most appreciated. 

You might be a hospital parent if you have ever washed your donated underpants in an emesis basin. 

Far from the worst day.

One of our lodging guests got lost the other night trying to find our check-in office. (I still say "our" after all this time of not working for this lodging company, because it is hard to remember I do not technically work for them anymore, they so completely control our lives through Bobby's being on-call all the time.) This guest was so hopelessly lost our reservations person finally just referred them to the in-county staff so we could go physically find them if needed, and the first thing this guest told our in-county on-call person was, "this is the worst day of my life!"

Really? The worst day of your...entire life? I mean, a bad day, sure. Maybe even a worse day than other bad days. But driving around aimlessly in your nice car while on vacation, trying to locate the key to your ski condo while speaking on your fancy cell phone to people who were truly trying to help you? I think most of us can agree this man's life is an enviable one. 

Today wasn't the worst day of my life. It wasn't a great one, but it certainly wasn't the worst. 

Daniel woke up at 3am, abruptly sitting up in bed between Bobby and me and announcing in a tiny voice, "mommy? I dunna barf." I might not be able to peel myself out of bed at 7 am, but give me a three a.m. barf call and I practically levitate while scrambling out of bed. The pause between a preschooler's announcement and execution of such an event is one of the smallest time measurements known to momkind. I sat upright and said, what?! Not quite sure if I had heard correctly, but still wildly thrashing my way out from under the covers while my still foggy brain grabbed onto my wide awake body, lest it get left behind. "I dunna barf", came a tiny, breathless voice, and I realized I would not make it back with a receptacle, or even the nice absorbent sweatpants I had removed before climbing into bed that were still lying at the foot of the bed, which was my split second plan B, so I grabbed an already heaving boy and scrambled for the bathroom. We made it as far as the end of the bed. I felt the first warm splash hit my bare knees. We left a trail across the bedspread and bedroom carpet, and made it to the bathroom sink. Poor kid stood shivering in his underwear as I removed both of our soaked shirts, wiped down our legs and feet, then cleaned out the sink before the chunks went down the drain. We removed the bedspread and put it in the washer, decided the sheets were only a little barfed on so they could stay, scrubbed the biggest of the stains from the carpet, then we both bundled up and went to the boys' play room to sleep, where Daniel could barf without disturbing daddy and little brother. 

He barfed eight times over the next four hours, then tried to another few times over the next several hours, and at 7:30 I reached over to lay a comforting hand on his heaving back, hunched over his plastic barf bowl, and realized he was burning up. Sure enough, 102.8. 

At that point, I made the decision to instate the level of family isolation that kept us healthy through last winter, at least until we are all healthy, well-rested, and have fewer illnesses flying around us in Summit County. It won't be fun or easy, but we cannot keep getting sick like we have in the last eight weeks. This means no more school, no more taking kids into stores with us, lots of hand washing and floor washing and clothes washing and dog washing and this washing and that washing and everything washing. I also decided I was almost guaranteed to be vomiting myself soon, having been barfed on so many times over the last four days, and I was feeling a little queasy, so I skipped breakfast.

I tried to call the Hem-Onc clinic at Children's hospital, but the clinic was just opening, so the operator sent me to the voicemail of the clinic charge nurse who had not yet arrived. Half an hour later, I called back and got a nurse who told me under no circumstances was I to bring him all the way to Children's until after he had been assessed by a doctor closer to home. I get it. They know if the fever is from a bacterial infection, the sooner he gets bloodwork, the sooner we can know if he is neutropenic, and the sooner he gets life-saving antibiotics. For a neutropenic kid, the odds of surviving sepsis are significantly higher if antibiotics are administered within an hour of the fever spiking above 101 degrees. So I took him in to the local ER, where we sat and waited at least an hour before they even started getting the supplies around to access his port. Of course they weren't successful, they couldn't get blood return, but could force saline into it, although I could tell it was pushing hard. They traumatized Daniel for fifteen minutes, turning him this way and that, stretching his arms over his head, telling him to cough, wiggling the needle in his chest, before deciding to try to push fresh heparin into his port, hoping a small clot was keeping it from getting blood return and could be dissolved. It didn't work, and by this point I was nearly beside myself, because it was already three hours since I had first noticed Daniel's fever, and he still hadn't even had blood drawn to determine if he was neutropenic. The only thing keeping me from going straight-up Momzilla on them was that I was reasonably sure this fever was viral, not bacterial, given the barfing, and that his counts had been very high only four days earlier. I finally calmly asked if they could please abandon the port access attempt and draw from a peripheral IV in his arm, which was less than ideal, because Children's greatly prefers blood cultures to come from the port, since the port is the biggest culprit for the source of infection and if so, the bacteria will be most likely to grow in the cultures if the blood comes from the port. But at least some blood was drawn to culture. 

The nurse came back in the room after taking the vials to the lab, pushed saline into his unused port, flushing away the heparin they had in it, and walked away. "She is going to get 100:1 heparin", I thought. "She knows they need a stonger solution than what they just had in it to last him three and a half weeks until his next access." He needs his port filled with heparin, an anti-clotting agent, to keep blood clots out of his port between accesses. I didn't want to be Momzilla (well, I really did, but was practicing breathing and reminding myself that they had already recognized us from our last visit, and we would probably be making many more visits, so play it cool, sis), so I didn't tell her how to do her job in front of the other nurse and the doctor still in the room. I opened my mouth several times to remind her, but the above reasons still applied, so I decided I'd wait until the last moment before deaccess and see if she was actually going to do it, and maybe she would hep lock it and I was doubting her for nothing. 

The doctor left, then had a thought, so she poked her head back into our room. "You mentioned he is still fighting a cold. He keeps desatting to the high eighties when he is falls asleep. He sounds okay, but we'll give him oxygen, and we should do a chest x-ray to make sure his lungs are clear, in case that is where his fever is coming from. I'll go call radiology now." 

"Wait!" I said, thinking of all the scans he has already had, needing convinced he really required another one on so small a suspicion. "I am thinking we may need to go down to Children's anyway, since we never got blood out of his port, and they seem to really prefer a port culture."

At my elbow, at that moment, as I was frantically trying to decide whether I was being a terrible mother and killing my kid if he didn't get an immediate chest x-ray, the nurse reached over, peeled off Daniel's port dressing, he reached for my hand, and she popped the port out of his chest as I cheered for his bravery. Exactly two seconds later, I remembered I was going to remind her to be sure to hep lock it. 

"Ahem...so...we are definitely going to Children's after we leave here", I told the doctor in a flash of inspiration. Because we had to, now. I wasn't eager to ask them to try to reaccess Daniel, the failed access he had just been deaccessed from had been traumatic enough. "I will ask them what they think about the x-ray, and get it there if needed." 

They had started a fluid bolus, but I wanted to get on the road, so I told them since we would be at Children's anyway they may want to give him fluids there, too. So as soon as Daniel's CBC and CMP were done, he was pronounced healthy enough to be released, and we knew he wasn't neutropenic (his ANC had, however, dropped from 4,900 Friday to 1,300 Tuesday, so if it continues that trend, he will be neutropenic soon), unhooked the bolus and released us based mostly on our promise to follow up the same day at Children's.

Then it got complicated. 

I called the Hem-Onc clinic from the local ER parking lot, waited for a call back while I filled the car with gas and drove home, and the nurse who returned my call told me I did not need to come down for cultures, since his counts were low, but not critical. He would still have some ability to fight on his own if the cultures were positive.  So I told her about not having seen his port be flushed with heparin. I admitted I had not made a stink about it, had not even mentioned it, because I was pretty sure it wouldn't be a problem for us to just come to the clinic at Children's and do all the things that had not been completed during the ER visit: port cultures, further diagnostics, and most importantly, the heparin. And that's when she got a little short with me, and told me she had sent us to our local ER that morning because they were busy after the three day MLK weekend, so I needed to call the local ER back and ask them to verify if they had or had not hep locked him, and if not, take him back to them to reaccess him and push heparin into his port. So I gathered all my courage, practiced my lines a few times lest I sound as stupid as I felt, called the local ER, eventually got ahold of our nurse, and she verified that I hadn't been seeing things- she had only saline flushed, and had not used any heparin afterward. She didn't offer any information on whether that had been on purpose or a mere oversight. I felt like such an absolute heel after not having said anything in the moment. She put me on hold for a small eternity, then came back on to tell me they could reaccess, but it would require me to check him in again through the ER- admit, paperwork, discharge, the whole bit.

Now, it really didn't mean much to me personally, because we are still on Medicaid, so unlike if we hadn't been, it wouldn't cost us an enormous second copay to check into the ER the second time in a day. But we do try to treat Medicaid as our own insurance, as we would if we were paying, and from that angle, it seemed ridiculous to go in for another expensive ER admit just so they could finish the job they hadn't the first time. Not to mention I had little confidence in the abilities of the local ER to get the needle inserted into Daniel's port in such a way that things could go in and out without more trauma to him. We have had dozens of seamless, effortless port accesses at Children's. Bobby, home to return Alex to me so he could work more efficiently, got caught up on the day's story, and his head almost exploded over the thought of taking Daniel back to the local ER, risking new bacteria being introduced in his port if they were not confident doing port accesses. He convinced me to call Children's again and ask if we could come in, just for a quick port access and heparin flush, and I got a different nurse who told me to come on in. So I loaded Daniel into the car again, and just as we were leaving, Alex awoke in Bobby's truck, saw me, realized his mommy was abandoning him yet again, and fell apart. Since Alex was the first one to get this bug after having played on the floor at Children's Hospital on Friday, we weren't about to take him in to any more public places, so Bobby decided his work wasn't that pressing and offered to take Daniel by himself, immediately rethought that, then offered to drive us all down to Denver, where he and Alex could just hang out in the car together while Daniel and I went upstairs to the clinic. 

Just as we were getting to the east side of Denver, the first nurse, the one who had told us not to come down, called me, and she sounded...ticked off. I beat her to the punch and said, "I know you told us not to come down, but the local ER told us it would be another admit, paperwork, the whole thing if we came in there, so we decided it would be just as much trouble to drive to Denver where it's a clinic visit and we know it will be done right." 

I didn't have time to throw in there that she was the only nurse who seemed to have a problem with it, the others had seemed quite accommodating and had assured me they could fit us in, before she started talking. "I just spoke to the doctor and she did not make it sound like that AT ALL. I just went for my lunch break, and while I was gone she left me three messages wondering where you were. If you come here, now we are going to have to do fluids and a chest x-ray here too. How close are you? Can you turn around and go back to your own ER? Like I already told you, we are too busy for him here, that is why I told you to go to your local ER." 

"We are on Floyd Hill, almost to the east side of Denver?" I squeaked, feeling a little crushed. I recognized her name. This nurse was normally so incredibly cheerful and sweet, I thought she genuinely loved us as much as we genuinely love her. 

She sighed. "Well, then I guess you may as well just keep driving this way, and we'll have to try to deal with him when you get here." 

Bobby's head came even closer to exploding. Once we arrived, Bobby dropped Daniel and me off at the hospital's front door. It was at this point I realized that I had been on my way into the house for Daniel's shoes, which he refused to put on before leaving for Denver, when Bobby decided to come with us. I simply changed course at that point and buckled Alex in, climbed into the passenger's seat, he got in the driver's seat, and we left without the shoes. So I hoisted Daniel's 33 pounds onto my hip, fought with him and eventually won on him wearing a mask, then we slinked up to the clinic, my head low and my tail between my legs, and as we were checking in, I asked the receptionist if we should go down to the emergency department instead to spare the already overwhelmed clinic staff. She asked, and they assured her they had a room ready and our arrival was not a big deal. Everybody was their usual level of professional, and assured me over and over that of course I was welcome there, they totally understood, these things are why they are there every weekday doing their jobs.   

It fell to the nurse I had annoyed earlier to access Daniel. Naturally. Before she bustled in, though, we got to visit with Daniel's personal oncologist, who was motherly, reassuring, wouldn't let me apologize for anything, and knows us pretty well by now. She listened to his lungs and decided an x-ray was unnecessary. One of the fellows also stopped in and decided that since we were there and would be accessed anyway, there was no downside to giving him fluids, since he had just started holding liquid down again, but all he needed was a thirty minute bolus. Bobby sent me goofy pictures of Alex clowning around in the car as they waited outside for us to finish. 

The moment the nurse I had been speakng to all day walked in, I realized I didn't recognize her after all, have never met her, and all my hurt and confusion over having so thoroughly exasperated our beloved Nurse Sunshine to the point of being uncharacteristically harsh evaporated. I immediately took all the blame, apologizing profusely to this tall frowning woman, saying I knew I had been the source of all the communication breakdowns, and was so sorry we were there. She immediately got all soothing, too, and said it was okay, she was sorry if she had sounded a little frustrated earlier, and to just put this day behind me. They had had 49 infusions that day in their approximately ten infusion rooms and two bays, and it had obviously been a day for both of us. 

She accessed Daniel quickly and easily, and got zero blood return. She didn't act like it was a problem, since her saline flush went in easily, so she hooked him up to the bag of fluids and left us. Our oncologist came back bearing a card with step-by-step instructions for our local ER on port accessing protocol and fever protocol, should we need to visit the local ER again. They properly hep-locked and deaccessed Daniel's port after we had been there for about an hour and a half, then we ran down to the pharmacy on our way out to pick up a prescription refill...and waited. And waited. And waited. With Daniel on my hip, which pretty much locked into its position and refused to move. We finally got our prescription, I took Daniel to the bathroom, helped him potty and wash his hands without ever letting his bare feet touch the floor (impressive, right?) and on my way through the lobby, called Bobby to drive to the front door to pick us up, because Daniel's weight was doubling each moment I carried him. 

I went outside and sat on a bench to save my arms and hip. My phone rang. Bobby said, "We have another little problem. The car's batteries are dead." Since he had never gotten out of the car after parking it, just found a drive through, gotten food, then sat in the car with Alex, eating and playing for the next two hours, the headlights never shut off and the battery quickly drained.

I picked up Daniel-made-of-lead, (did I mention he was wearing slippery pants?) walked over and asked the valet guys what generally happened in these situations, and they sent me to security to request a curtesy boost. The guy at the security desk told me the person in charge of jump starting cars (who know they offered this service?!) was busy, but would get to us as soon as possible. 

At this point, it was becoming obvious that my own rising nausea, having sat heavily in my stomach all day, was accompanied by light headedness and weakness and swirling stars upon sudden movement, exactly as one might feel after not having eaten since the previous evening. I happen to be at a point in my monthly cycle where I frequently feel waves of dizziness and nausea (woman troubles. Complicating life since forever), which really complicated the whole expecting-to-get-sick-any-moment thing. I stumbled/carried Daniel to the car and cautiously nibbled on a congealed Wendy's cheeseburger Bobby had gotten for me hours earlier, thinking that if I hurled it later, at least it wasn't food I actually liked and it would symbolize a bizarre full circle to me; after all, it was a vomited Wendy's cheeseburger that started this whole cancer journey. Daniel was relatively healthy until the night Bobby was too hungry and shaky after his oilfield shift to wait for me to prepare real food, so he brought home cheeseburgers, and Daniel, who had been an increasingly finicky eater for the last two months, wolfed down almost two of them. Several hours later, in the dark, he sat up crying, then threw up an impressive amount of cheeseburger all over Bobby's bare chest and the comforter. We threw the whole thing in the washer (not Bobby. We threw him in the shower), and I was still picking dehydrated bits of hamburger and pickle out of the washer and dryer two months later when Daniel was diagnosed after he went from one sickness to another, and never did feel great again. 

An hour and a half later, it was dark. The boys were having a fine time climbing all over the car's interior. Andy the dog was roaming the top deck of the parking garage peeing in/rolling in/eating snow. Security finally pulled up and helped us jump start our vehicle, and we were off.  

On the way home, I finally had the chance to reflect on the way the tiniest mistakes can snowball. Did it start with the bungled port access, or with my neglecting to mention the heparin lock? Actually, it probably started with taking Alex with us to the hospital on Friday for Daniel's chemo. He might have picked something up we wouldn't have brought home with us if he hadn't been practically licking the clinic floor. But we also laughed about the comedy of errors the whole day had been, and mocked the guest from several days earlier: "This has been the worst day of my life!" We said in high-pitched voices. Because we were together, moving westward toward home through Denver rush hour, two loved little boys chattering in the back seat about how we had broken and fixed our car. If you have ever gotten a phone call that a loved one has died, you cannot help but be thankful for each day that is not as bad as that one. If you have ever heard the words, "you/your loved one has cancer", each day that ends with togetherness is a good one. If you think about the possibilities that lie ahead of you for the day to get much, much worse, you realize today is all you have, you aren't owed anything, and sometimes this is as good as it gets. 

As we passed under a sheer rock wall on the way home, we passed three or four smaller cars crippled by running over several small boulders that had fallen onto the road. Flat tires, dented bumpers on cars too low to clear them. As Bobby hit the brakes, anticipating more, we clattered over freshly fallen rocks, but all the big ones had already been hit and pushed off the road by other cars. We let our gasps out with a simultaneous relieved whoosh, realizing it could have easily been us. While I have a problem thanking fate or higher power for sparing us something others were not spared from, as if they deserved their bad fortune while we were given preferential treatment, We did have to wonder if the time spent waiting for jumper cables in the Children's Hospital parking garage, or driving more slowly because of the resulting rush hour drive home might have been the difference between hitting or not hitting those rocks. We also wondered aloud if the drivers out of their cars in the chilly night along the interstate, circling their cars assessing the damage, were muttering to themselves, "This is the worst day of my life."

Losing my cape

Hello, dearies! 

I wrote an entire confessional sort of post because it was stuff in my head that needed to be out of my head...you're welcome. But I felt bad throwing the surface stuff in there with all the deep stuff and forcing you to slog through it just to hear about our holidays, so I'm just going to give you a lovely surface update and warn you when the other one is coming so my readers (like my husband) who think I need to spend more time recording our activities and less time "rambling on like a woman" about those exhausting feelings can check in, read up, and be on their way. 

Our holidays were merry and bright. Bobby's family was here the week before Thanksgiving for a chaotic two days of cousin time, all four cousins fairly close in age and our little house's walls almost bulging outward from all the living inside them. There were beds everywhere, kids everywhere, toys everywhere, coats and boots and hats everywhere, food everywhere, and so. Many. Legos. Everywhere. My parents came for Thanksgiving, and we drove to Eagle to my grandparent's house for Thanksgiving dinner, then my parents spent several days at our house playing with their ridiculously adored grandbabies. Those same baby's godparents Uncle Leroy and Aunt Mary came up for Christmas while my parents stayed home doing homey things for Christmas, and we had an amazing two days of snuggles, snow, light drinking because we had nowhere to be, heavy eating just because, and lots and lots of playing with two little boys who now think it should be Christmas every time it snows. Then New Years. My parents almost cancelled their plans because I was lying low with a nasty little fever virus, sore throat and two days of uncontrollable shivering, joints hurting and skin raw from all those malicious air molecules slamming into it. But I rallied at the last minute, and Daniel called them in tears because he missed them, and with such blatant manipulation they resurrected their travel plans and came anyway. It was a fun time of zero rules for little boys, as usual when grandpa is here, and the last two days have been spent dealing with the grandpa hangover, reinstating all the rules that got thrown out for two days. My kids do not have many adults in their lives who are not willing to get down on the floor with them and be bossed around, but their grandpa takes it to a whole new level, making up games for them as opposed to merely playing by the rules of their own made up games. 

Bobby has been running around like a crazy person trying to stay on top of things as they break for our lodging company guests. He is enjoying his role this year as mere maintenance supervisor as opposed to in-county manager for this company as he spent 2006-2011 doing, but he spent November installing new appliances and furniture and doing tile work in multiple units receiving last minute upgrades instead of doing smaller maintenance issues that also needed done in all the other units, things like new faucets and carpet/tile transition strips, replacing light fixtures, reattaching towel bars and toilet paper dispensers, replacing faulty light switches, the million things that can go wrong in thirty homes and condos, so he is now trying to complete those items in the few hours per day the units are between guests, or as the guests call to complain. Not to mention we have had a few blatant refund hunters this season already who have required hours and hours of his time fixing every tiny non-issue they find so they do not have any reason to request a refund from our boss, no that that stops them. He had a week in December he visited two units every single day of their guest's booking for items completely inane, that most of us would not even think of complaining about- a specific TV channel available on the bedroom TV but not on the living room TV, a small sliver of wood wedged beneath a dresser, a small rattle in a bathroom exhaust fan. Not to mention the ongoing need for snow and ice removal on decks and walkways to keep our guests from landing on their flatland-accustomed backsides each time they step outside, the constant demand for firewood stacked for their easy access, and countless trips to the landfill to dump truckloads of their pizza boxes and beer bottles upon their checking out. 

I ambitiously thought I could attempt cleaning or inspecting for this same company, with two little boys tagging along. I have tried, but so far not a single day of me working has not turned into a disaster. I am unbelievably slow, stopping every little bit to deal with boys who are bored and destroying the unit I am trying to ready for the next guest. In one unit, they discovered a Christmas tree covered in glass ornaments within thirty seconds of me showing up to clean. I spent an hour making the beds and cleaning the bathrooms and kitchen, and two hours searching for all the shards of shattered ornaments, one dropped on the hardwood floor in the living room, one thrown onto the rough slate tile of a bathroom. Inspecting has not gone much better. They immediately invade the unit, jumping on neatly made beds, searching drawers for board games or puzzles they can dump, and occasionally falling asleep on couches, keeping me hostage in the unit until naptime ends. And probably as a reward for dragging them into units recently vacated by guests, we have started getting sick on an almost weekly basis. In the last month, I have had one stomach bug, one head cold, and one achy, breaky fever with sore throat. We're still all fighting boogers and scratchy voices.

I'm struggling with going one of two ways with preschool and Daniel. He loves it so much, and it is so good for him. His development is right up to mostly age-appropriate, thanks to his teachers and his interactions with his school friends, and it makes my heart go pitter-patter to see him interacting with kids his age like he's a real boy. But he has constant boogers, his counts have been suppressed more than usual for several months now, and someone is always sick at school. I have kept him in school longer than I expected to because he needs the time away from me to practice his real world skills, and so far we have not paid for it with an inpatient stay. However, I feel like I am playing roulette with his health every time I drop him off. For that reason, I am toying with the idea of moving him to full days so that the few times I do take him, he can get the whole experience. Or I should just take him out completely. Either way, what we are doing seems the least ideal- three hours per day, four days per week seems like maximum exposure for less than maximum experience. He wont be exposed to more germs by spending the afternoon there as well, but each new day is a new opportunity for a sick classmate to not be kept home. So far I have not scored a call back from the woman in the school district who handles such things, but I'm working on it. It isn't like he is missing much academically at this point, thankfully he isn't in regular school yet and won't be until the year his treatment ends, so I do have the option of simply ending his school experience while the sickie season is upon us. What to do... I hate decisions with no clear right answer. 

And now for the one where I talk about feelings and other exhausting and completely unnecessary things. 

Hi, and welcome back! Here's hoping your holidays were magical and your new year is happy. I've heard so many say 2016 was a good year to put in the rearview, and I'm a little bit there, but then...there were so many amazing times too. So that. 

2016 started right before Daniel started maintenance, which meant it was right after the last intense push through frontline treatment. Daniel's hair had all fallen out again, he was completely bald, pale, with icky brown circles under his eyes and unable to keep food down. His counts were crashed, so we stayed home for Christmas and New Year's, told everyone who loves us to stay away, and hunkered down hiding from germs. We were tired.  

2017 is starting in a much different, much better place for Daniel, but I'm not so sure I am in a better place, just a different one. I'm probably less exhausted and occasionally have a day when I forget Daniel is sick, so that's good. But I feel like I might finally be losing my mind. We spent a year in legit crisis management, cancer and hospitals and constant fear of things we could not see or see coming ending our child's life, and we sailed through it with our senses on high alert, our sense of humor intact, intuition practically buzzing, staying on top of complicated med schedules and clinic schedules and sleepless ten day hospital stays (not complaining, those could have been much longer) and pounding I-25, practically bumper to bumper at 80 mph anywhere from one to four times per week. Then we hit maintenance, so life on the cancer front became less intense right about the same time we lost our source of income. We had some savings, so we were able to keep the house we'd just bought, and got on Medicaid, which took a huge financial strain from us, but still blew through savings for groceries, other insurances and taxes, and vehicle expenses. 2016 was also a year of crisis management, but more because of financial fallout from 2015 than from cancer.

We are in a better place there, as well, now. We moved to Summit County and dropped our housing cost by twenty five percent (oddly enough considering housing in Summit County is around thirty percent higher than it is in Loveland, but we lowered our housing standards by about half when we moved), but then had double monthly housing bills for three months while we tried to decide whether to rent the house or sell it, then whether to sell by owner or list with an agent. We wasted a month trying to sell it ourselves, finally resigned ourselves to paying thousands and thousands in realtor fees, listed it with a flat-rate realtor, and six hours after it being added to the MLS...got an offer slightly over asking. As of closing last week, we are mostly back in the saddle. The house sold for enough more than our buying price a year ago that it replaced most of the savings we burned through last year when we did not have an income. Bobby is again working full time. Our budget is mostly under control and our housing is the cheapest it has been since leaving Kansas, even if the trade-off is living in a trailer park, paying them rent every month our house sits on their lot, and running a home repair business out of a very small house with no garage. No, we will probably never afford a "real" house up here, even though if we could bamboozle our way into a loan for one that was roommate friendly, our mortgage could probably be covered by the ridiculously high price of seasonal bedroom rentals or even AirBNB, and we could remove housing almost completely from our monthly budget. But what we are doing is sort of working...for now. 

So I have no justification for losing my mind now. I don't know what is happening. I have no short term memory lately. Seriously, I spend most of my time trying to remember what it is I should be remembering right now. Words...I try to speak in complete sentences and can't remember my words. In the last week, I have spent hours trying to remember words like "teleport", "justify", "allocate", and a word that means making several factors fit together nicely, that once again, I can't remember and it is driving me nuts. You do it with your checkbook, too. ..."Reconcile." I had to ask Bobby and spend five minutes describing it. 

And then there are the Horrible Dreads. I get them when I can't identify why I feel something is weird but know something is. That something has never been actually life threatening; when Daniel has had legitimately dangerous issues like neutropenia and positive cultures I've bounced into straight-up I'm-fine, upbeat crisis management. Nope, it's when there is nothing I can put my finger on that the Horrible Dreads attack the hardest. A fast respiration or heart rate, his skin feeling clammy when he sleeps, or just when I look at him and realize just how beautiful and tough he is, how wrapped around him my heart is, and how completely finished I would be if I lost him. Sometimes they hit when we make a memory so amazing I know it will be replayed in the future if I need to find a happy place should the Worst happen, and I don't know if I am enough in the moment to truly remember every detail. Or when a little friend relapses or dies and I realize how easily it could have been us. I start to imagine his little body failing in front of my eyes like I missed it doing the first time and wonder what I am missing again, and then the Dreads start pounding on the walls in my brain. They live behind the door I keep my back against, and sometimes they force it open, just a crack, and I see the ugly, dark awfulness behind that door, and before I can slam it shut again, they are on me, clawing and ripping. The only thing I can do is slam the door back shut and pile all my mental furniture in front of it, then deal with the Dreads that escaped, feel what I feel, and know that whether they are there to tell me something is wrong with Daniel or something is broken in myself, all I can do in the moment is let them make me a fierce mom willing to show all her cards and let her kid know how completely he is loved.

I still see germy goo everywhere I look, materializing not only on grocery cart handles and door handles and gas pump handles, but on the bag of apples or carton of pasta I just brought home from the grocery store. I have not given in to the urge to wash the groceries in a long time, but I won't say I'm not tempted. Cardboard packaging is surprisingly resistant to a wipe down with water and antibacterial soap. Those of you who knew me in our pre-leukemia life will know how incredibly weird this is for the adult who morphed from the child who had to stay up to date on her tetanus shots because she wouldn't stop running barefoot through the cattle pens and horse corrals.

With all that weirdness rattling around in my head, there is still the diagnosable stuff. I feel like my childhood ADHD diagnosis has become an adult-sized disruption lately. My frequent hyper focus as well as the lack of focus has become a problem. In hindsight, most of my life has been spent doing things that are either extremely therapeutic (like the bilateral physical activity of biking) or extremely well suited to issues with focus, like heavy equipment operation, housekeeping, housekeeping inspecting, painting (art) and writing. All things that allow me to go deep, deep into the zone, zone out all distractions, and just allow myself to be completely immersed in whatever I am doing, or listen to music, audiobooks or podcasts to hold my brain's attention while my hands work mindlessly. Nothing so wrong with that, unless one must be easily able to break out of their zone to deal with distractions. I know the most obvious ADHD trait is lack of focus, the inability to focus on any one thing and spinning from one thing to the next. As a kid, I spent entire school days drawing pictures in notebook margins because I couldn't manage to focus on a single math problem long enough to solve it. As an adult, I find myself feeling incredibly irritable if my kids dare to distract me from whatever I am trying to get done, be it cooking, cleaning, or even playing with them. I'm aware of the irony of that one. (But dammit, we are playing with trains right now. How dare you suggest we read books exactly one minute after asking me to get out all the train stuff? I'm not elbows-deep into building train stations right now just so I can quit and switch gears.)

I recently heard someone describe ADHD in terms of fish and barrels. Imagine a fish jumping between barrels of water. Barrels in this case would be activities, objects of focus, or trains of thought. A regular fish can jump into a barrel, swim around in it, jump to the next, swim around a bit, and so on. But with ADHD, that fish will either shoot at high speed from one barrel to the next, just skimming the surfaces, or it will swim so deep in each it costs a huge effort to reemerge, let alone jump. And when the fish can't jump without feeling unreasonable anger at being required to swim up from the deep, comfortable murk, the fish who is also a mommy fish deeply resents not only those who ask her to do so, but herself for showing the worst parts of herself to the best things in her life, and acutely feels the judgement of other adult fish, real or imagined. Yes, I'm aware the fish analogy is falling apart by now. (On a different but related note, there was a time my husband affectionately called me Goldfish because of my inability to remember what I was doing long enough to swim across my fishtank, or what I was saying long enough to finish my sentence. When I would unexpectedly word-associate mid-sentence and blindside him with a wild, unannounced change of subject, he would say, "thunk!", imitating the sound of a goldfish swimming at high speed into a fishbowl wall. He used to think it was infuriating, but cute. Now we mostly just think it is acutely infuriating.)

I have a 20 month old and an almost four year old. I need to be able to jump. I also need to remember to feed them before 4pm, pick Daniel up from preschool, whether or not I gave him his meds today, and that my children exist when I am deep into a project. 

So I did something I have not done in my entire adult life the other day. I saw a therapist. With one of those weird couches that doesn't know if it is a couch or a bed and everything. (Fortunately, there were also two hard, upright, uncomfortable chairs sitting directly, awkwardly facing her desk for people like me who think the couch is too much of a cliche, but who then spend an entire hour thinking how comfortable the couch looks but also wondering if a switch to the couch mid-visit will be psychoanalyzed so they stay the course with their chosen chair while their butt goes numb.) The decision to try therapy was precipitated by a week of me not being able to manage childcare, cooking and cleaning simultaneously in one day, and being beside myself in the evenings with mental exhaustion, self-recrimination over being such a horrible housekeeper and/or mother, completely overwhelmed by the time Bobby got home, being angry at him when he suggested I should have done a better job, had more patience, not yelled at my little darlings for being little darling jerks. I don't know why anger has been my go-to, other than the anger has been borne of sheer frustration with myself and my inability to adult lately. Well. And the fact that until we get kicked off government healthcare as we edge further from poverty level, mental healthcare, at least in the area mental health center, is covered. This might be the only time in my life I will be able to afford to find out if I'm an acceptable or unacceptable amount of nuts, so as long as it is available to me, I would probably do well to take advantage of it.

I almost suspect part of this weirdness lately has to do with having no crisis to manage, and that is disturbing to me. I wonder if I have become actually somewhat addicted to the subtle high that accompanies panic. I almost miss the simplicity of being allowed to drop all the peripheral stuff and just keep the main thing the main thing and being forgiven for letting everything else fall apart. I'm in a state of transition back to "normal" after four years during which we changed jobs five times, relocated to new towns twice, recently moved again to a new-again town where the friends I have left here are in a very different place than I am with older kids (although they try their hardest to still be the friends we used to be, which says something amazing about them), lived in four different houses, went from ten years together childless to having two kids, and had one of those kids diagnosed with an acute life threatening illness. I have been pregnant and/or breastfeeding during that entire time, which means I literally have no idea anymore how much of the crazy is me and how much is my hormones. Or maybe I've been hormone-crazy for so long all the non-crazy neural pathways have buckled asphalt, with weeds growing through them.

I naively hoped it would be as simple as procuring a bottle of whatever adults with ADHD are taking these days, and taking them as I used to- popping one only when I truly needed it to get through my day, only when the goldfish needed to be somewhere besides hidden inside her plastic castle, driven to mad distraction by the colorful rocks and waving plastic seaweed and hey! Bubbles! I only took them on school days as a kid, and bounced around at will the rest of the time. i thought I could do the same as an adult and thus experiment with contrasting me on meds to me off meds and see if off meds was so bad after all. But it never is that simple, is it? The therapist wanted to assess me at length. And talk. And schedule more talks. I know she is doing her job, but I have zero time or patience to talk. I sacrifice sleep to write here, late at night, in my private journal that is also my public blog (because who has the time to keep two separate journals when they can just decide they don't need to keep their secrets secret?) so I don't have to actually talk about this stuff. I'm awkward in person. For some reason, I'm fine with the entire internet knowing I'm not superwoman...as long as I don't have to see their reactions to this shocking news. But it turned out I scored higher than I thought I would on her assessment quizzes for trauma, depression and anxiety, areas I thought I was perfectly fine in, sooo hey ho, to therapy I go. 

Once she heard that depression and/or bipolar disorder, officially diagnosed or merely suspected, is practically a gulf stream through my gene pool, the therapist jumped all over that. She thinks a lot of kids who were at high risk for being bipolar were misdiagnosed with ADHD in the 80's and 90's because manic depression, as it was known then, was an adult's diagnosis while ADHD was a kid's diagnosis, countless kids of bipolar parents were diagnosed with ADHD and there is no link between the two, and bipolar disorder has a definite hereditary component. I am a lot resistant to the idea because not only is it stigmatizing to have such a diagnosis, I don't feel like I have those erratic swings between manic and depressed, and while the occasionally endearing and amusing and occasionally really destructive monster I have been calling ADHD my entire life does somewhat come and go, or more accurately, is more or less disruptive depending on the current circumstances, it is generally me managing the symptoms that determines when it does so. I also have issues with her snap assessment of a misdiagnosis because my parents, when I was ten, were skeptical enough of such a popular diagnosis at the time being pinned on their kid they drove me to Denver to hotshot big city child psychologists for second opinions, even had an EEG done to identify the brain wave abnormalities associated with an ADHD diagnosis to remove the skepticism they rightly felt. They did their due diligence to ensure I wasn't just a case of drugging something that should have been parented. They were ahead of their time in hesitating to jump on a bandwagon, and the fact is that the meds worked. Almost overnight, I started completing my schoolwork, started feeling like school wasn't this horrible, unfair, hostile place, stopped needing to give equal attention to the words and numbers in my workbooks and the scratchy pencil two rows behind me, the person whisper-reading beside me, the foot tappers, loud breathers, snifflers, crackly page turners, or the teacher assisting other kids. I don't feel it was a misdiagnosis, if anything, as an adult, perhaps there is some encroachment from the more hereditary aspect of my mental health that is muddying the waters, and I greatly resent that. And if my brain's version of Pandora's box was opened by the stress and trauma of the last several years and now other, specifically genetic stuff is rattling around in there, I very greatly resent that.

I just want happy, simple and uncomplicated. I don't want to be broken. Over the last two years, so many people have called me Supermom I have become afraid of letting them down, of letting them see me lose my crap- I mean cape- and becoming the person I thought of myself as before- not awesome, just barely holding everything together. My biggest fear at the moment is that I am going to gain a diagnosis I do not want, one that I have not been incorporating into my personal identity and embracing as uniquely, lovably, infuriatingly me since I was ten, and now nobody will want to sit by me at lunch. I know. 

My problem recently is that for the first time in my life, I am unable to use the tools I have always pulled out of my toolbox when I start to feel frustrated by being me. I used to go on a mountain bike ride when I started to feel the thoughts whizzing around leaving me dizzy and confused, and biking was an almost guaranteed silver bullet for the brain Flubber. (Yes, the Robin Williams movie. I truly identified with that zinging little green blob.) Sometimes it took twenty miles of hard mountain biking, my entire mind focusing on the trail, endorphins crowding out the chaos, but it always worked; although I left the house feeling angry, frustrated tears just behind my eyes, I came back feeling focused, serene, happy, and ready for life again. In the cold months, cross country skiing took the place of biking when the snow was finally too deep to allow my bike to do anything but sink. When we moved to Kansas and the wind blew too hard and hot and the landscape was too flat for biking to be fun, I ran and gardened and did yoga, and having a kid just meant I did that stuff with him in the stroller, on my back or on the floor next to me. That worked until the second kid came and was like his mother- bored by and resistant to carriers and strollers once he learned how to walk on his own. (And yoga- don't get me started. You might be able to do yoga with two kids sitting on your head, but not I, and also you women who do non- yoga living room workouts that involve sweating and jumping are clearly operating beyond a level attainable by actual human mothers who are easily distracted and good heavens, how do you even manage to not wonder off mid jump-squat because the stress of a living room workout without the fresh air, nice smells and changing scenery of going outside to exercise makes you remember that you need to stress eat like, now? ...Glad I got that off my chest.) But, since their dad was mostly non-employed during the last year, I was still able to get away when the brain-Flubber really needed to be let out, and go abandon it on Loveland's Devil's Backbone or some other lonely trail. So I have only been out of silver bullets since he started working full time again. Unfortunately for my mental health, full time for him has been pretty literal- his only guaranteed days off have been every fourth Friday, chemo day, and we spend all the daylight hours that day in Denver, at Children's Hospital, on the road, or running Denver errands.

So there's all that. Turns out, if you think you are going nuts enough to make you seek a second opinion, you may find out you are more nuts than you think. I'm in a good place there too, though, I think. I'm somewhere near the optimal zone on a nuts bell curve- nuts enough to ask for help, not so nuts I refuse to acknowledge I need it. But also massively annoyed that now I'm supposed to talk. With words. Not with writing. Writing is my friend. I get to edit to make myself as understood as possible before posting, to search through the verbiage vault until I find the perfect word with just the right implication to set the tone I'm going for. Going live is more stressful. All I wanted was to try drugs for a little experiment to judge if I actually needed them or just needed to pull on my big girl pants and deal with the crappiest bits of life on my own. 

In the meantime, when it calms down, my brain still acknowledges that life is so amazingly, beautifully normal. At night, I wake up and the first thing I see in the not-quite dark is the curling eyelashes and smooth cheeks of a sleeping little boy. Which one I wake to depends on which side I am lying, they sleep on either side of me. Little mouths are open and breathing deeply, soft, busy little hands are relaxed, and I just die a little inside from sheer adoration. I am so puzzled, in those moments, how they could have driven me so crazy during the day, how I could have ever yelled at them, how I can remember how exquisite they are when I want to yell at them tomorrow. I whisper to them how loved they are, how sorry I am, how beautiful my life is with them in it. When they wake up, I ask Daniel if he knows how much I love him, and he spreads his arms wide to show me, and so do I, and we throw them around each other in a mutual bear hug. Almost every night, Bobby and I lie on either side of Daniel, all love-drunk, and talk about how overdue he is to be forced to sleep in his own bed. He slept in his own bed for about four months, then suddenly decided that was for the birds. We talk about how short these years of blissfully, innocently sleeping cuddled, safe and warm,  between the people who love him the most in the whole world are compared to all the years of living and heartbreak and adulting he has ahead of him. If I miss sleeping next to Bobby, I reach out a leg and fish around until I connect with a hairy shin. (As far as the things mommies and daddies do when they love each other very much, I know you are probably wondering. You already know we're resourceful. That's all you get.) Daniel is starting to understand fear, and told me the other day he wasn't afraid of the dark, because when he started to feel afraid at night he just shut his eyes and went to sleep between mommy and daddy. My heart turned to goo. All the fear and hurt and strangers doing painful things to him without his permission for almost half his life already, of all those terrifying roads I have had to watch him walk in his tiny toddler shoes and couldn't carry him, couldn't take them from him, couldn't walk for him, here is one thing I can do. Here is one thing I can spare him. Maybe that's our trade-off. Many other kids are spared the things he has had to learn not to fear: needles, burning doses of chemo shot into his muscle tissue, 22 (to date) spinal taps, broken bones leading to atrophied legs while steroids swelled his body, raging emotions and uncontrolled nausea and splitting chemo headaches so severe he screamed and vomited when they hit him, but there is one thing, one normal childhood hardship I can take from him. There are no monsters under his bed, no shadows creeping from his closet. 

I have been miserably sick the last two days, feverish, achy, chills and shaking, a throat so sore it hurt to talk, but am feeling much better today. My parents should be arriving soon, which means I get to do me-things for the weekend, a prospect that has me pretty excited. So far the boys have only had boogers, and Bobby has only had a mildly sore throat. I'm not sure why I'm the only one getting sick lately. I, and only I, spent a night vomiting two weeks ago. Only I have had to try to be functional through achy fever chills for two days. Thank goodness it is only I, but what the? How is Daniel staying so healthy? His ANC was 600 two weeks ago. That is pretty low. He should be the one getting so sick so often, not me. To me, this can only mean one (or maybe both) of two things- he is the most resilient little human ever, or I am an extremely worn down one. 

December 16 marked the beginning of Daniel's fifth round of maintenance chemotherapy. Each of the first four rounds consisted of three identical months, two of the months beginning with Methotrexate via a spinal tap, Vincristine via his port, and a week of steroids, then daily Mercaptopurine and weekly Methotrexate, plus four doses of an antibiotic on the weekends. The third month was identical except for the exclusion of the spinal tap. We now start a schedule with each three month round having only one month including a spinal tap, the remaining two having just Vincristine, steroids, plus the oral chemos and antibiotics. This means we now have only have one day every three months that is complicated by a procedure under anesthesia, the other two visits are in and out, just a quick chemo push into his port, and out the door. And our nurse told us that she had been mistaken- although discouraged, siblings under 16 are allowed in the clinic during flu season precautions. Which means the last two visits have been unnecessarily stressful, one of us keeping Alex down in the atrium and cafeteria while the other goes upstairs with Daniel. Not knowing this until after December's visit, for the first time in 22 spinal taps, I was not there when Daniel drifted off under sedation, to kiss him goodnap. The risk of an anesthesia complication are minimal, especially after so many uneventful sedations, but it is still there, and while Bobby was upstairs holding him as he went under, I was downstairs struggling to keep calm, fighting off the Dreads. 

Somehow, I've gotten it in my head that if my life were completely under control, I would be a better person. I would play patiently with my little boys because no sink full of dishes screamed at me. I would paint or write because why not? I spend so much of my time just dealing with this overfilled house, piles of snow clothes and tools and food and laundry and randomness pulled down from shelves and not returned. If only I were surrounded by order, then I could be functional and well adjusted. I recognize this. It is me grasping for control because I feel like I'm careening around rudderless. I'm also channeling it. Once I got the requisite living room furniture rearranging (that B loves coming home to so much- just ask him!) out of the way, I pointed the obsession toward the cabinets and closets. I finally found shirts that are stretchy enough to hold their shape when the neck is stretched out to nurse, so I bought six, and threw away all my awful, lumpy, stained shirts. I feel like a real girl. Wardrobe is under control. Check. Laundry room cabinets got organized and purged today. Check. I am surely about 1/10th more in control of my life now. 

But I also drove home to the wrong house this morning after running an errand. I was almost to the driveway of the house we moved out of over five years ago when I realized something seemed a little weird. So I turned around and drove home to our current house, poured some cider into my stovetop coffeepot to warm it a bit, forgot it, burned it on the bottom, and probably ruined my nice glass pot. So I gave up, let Leap Frog raise my kids, and cleaned all day, hoping to find my sanity under a pile of laundry.

...and I've been not-finishing this post for a week now. It's been sitting here unpublished for so long I'm sick again. A miserable head cold this time. We are hiding from life, not seeing anyone, hoping this one runs its course as the others have- with me taking the brunt of it and nursing little boys, and becoming an even bigger believer in the powers of breastmilk to deplete its provider and nourish its recipient. I just climbed out of the shower, where I retreated to try to get some warmth into my bones. I actually took a steaming cup of apple cider into the shower with me and sipped it as I let the water scald me. The steam opened up my sinuses a little bit, the cider warmed me from the inside out while the shower warmed from the outside in. I'm enjoying he finally quiet house, but almost ready to be off to bed. Bed is already made toasty for me by four warm bodies (that includes the dog) and I will probably not sleep much, between the oral chemo alarm that will go off in an hour and a half, which will wake us all but only Alex will be allowed to nurse himself back to sleep while Daniel cries. About 4am they will both wake up and nurse intermittently until 7 am. I no longer sleep, I doze. I don't mind the night nursing terribly much, I tell them they can have all they want at night (aside from Daniel's 5 hour mercaptopurine fast), and during the day, I try my hardest to redirect them.  Since my last post, in which I was about to lose my mind over it, I've made that change. Other moms night wean, but I think it works better family if we just work toward day weaning. Night weaning would mean getting them out of our bed. That's going to be a whole thing. 

Good night, and love to you. I may not be your most stable friend, but I know you'll love us anyway.