Wildflowers

Hello again, from the land of the crazy. It has been, too. Crazy, that is. I dropped off the face of the blogosphere. I can manage about a half hour of social media a day, mostly while on the toilet (you didn’t come here to not hear about my toilet entertainment, did you?) and while eating, so when I pop in and out on Facebook, that’s what I’ve replaced blogging with. But it does seem past time to flex my writing muscles again, and I do owe you updates.

So first, there’s D. He’s plugging along. I don’t think he feels super, and why would he, after three years of nonstop chemo? He seems like he has less energy than ever, even as his comprehension of the world is exploding, his face is becoming more angular, his feet longer, his hands bigger. He is simultaneously an old soul and a giggling, enthusiastic explorer of life. But more and more, I find him draped over a chair in the living room, and he tells us he is ready to go to bed instead of fighting bedtime and finding ways to stall its inevitability. I’m telling myself this is the push to the finish, and it makes sense- after all, if little bodies could take more treatment, there would probably be more treatment. There is a reason treatment stops when it does- risk versus reward. It is the amount of treatment needed to give him the best chance of avoiding a relapse without causing an unacceptable amount of harm to him. At the end, it makes sense that he is somewhat wrecked and exhausted. Of course the anxious, sensational extension of my subconscious on my shoulder is always whispering in my ear that anything out of the ordinary is a sign of relapse, that this is exactly how one might expect a relapse to look, but realistically, the odds are better that he’s simply a growing boy who has been wrung out by relentless doses of drugs that have known harsh side effects for the last three years. I am so ready to get to know this boy who will emerge when chemo ends this August- what foods will he like when his taste buds are no longer affected by the cardboard-metallic taste that chemo gives his meals? Will he start growing? Will his energy kick up several notches? Will he finish a short hike without begging to be carried? Will his sense of humor or pieces of his personality change? Will his brain fog and inability to find certain words when he needs them get better or stick with him? But at the same time, I am sometimes gripped with terror. It hits without warning or provocation. I picture us tumbling back to the bottom, to the start of another climb like the one we are almost to finish, and the sheer enormity of it just flattens me. We are pinning everything on this upcoming date- the date after which we will live without cancer making our decisions for us. The date we take back our lives. The date we emerge, grasp the edge of the crumbling pit we’ve been in and swing a leg over into the sunshine. If cancer should reach out with its ugly fingers and grab us by the ankles as we are escaping, and should drag us back down into that pit and demand we begin scrambling up those crumbling walls again, well. I can tell you one thing. At least one of us will one hundred percent lose her shit. It won’t be pretty or classy or anything remotely resembling dignified.

There have been a few things that have come up since my last update; almost too big of things to tackle retelling here, but I’ll give them a shot, because what good is full disclosure when one leaves things out? There are some good things, some scary things, some bad things, and some that are at least two of those things in equal portions.

Back in February, I started noticing a major decline in my ability to climb up ski resort mountains at night and ski back down. I was suddenly exhausted and winded halfway up Keystone or A-Basin, my boots, skis and skins feeling like they weighed a hundred pounds, my heartbeat impossibly fast, my head light. So I did the obvious thing and tried to work out more often at lower intensity, because I must be getting old. The harder I tried, the more easily exhausted I became, and the faster my heart raced, so I eventually had to admit defeat and get it checked out. Thyroid tests revealed the large nodules discovered on scans I’d had after my bike accident were still benign and not responsible for whatever dysregulation was happening, so I went home and started trying to eat better, take better care of myself, and I stopped doing solo nighttime randonee adventures after my last one scared me a little bit; when I leaned over to pick up a dropped ski pole the movement triggered an arrhythmia that had my heart racing at 220 beats per minute and refusing to come down, leaving me weak and making me wonder if I might lose consciousness, and how long it might take a snowcat driver to find me while grooming the run I was trying to die on. Several people who know of this episode have asked me why I was not more worried about my own mortality at this point, and it’s a good question, if not one I have a ready answer for. The thought definitely crossed my mind, but at that point, there was nothing to do but hope for the best. This whole experience of watching D’s little body survive so much has almost made me more cavalier about the ability to survive a malfunctioning body, maybe. Maybe I focus too much on his survival and not enough on the death he escaped. Maybe I am just fatalistic enough that I figure I cannot outsmart death, so I live knowing it is close, just trying to squeeze enough experience out of life to make death less awful when it comes. I happened to be climbing in snowshoes that night with my snowboard on my back, so I strapped on my board and started riding down, only to be distracted by how bad I felt and catch an edge in the unfamiliar gear, which smacked me down face first on the snow, deeply bruising my knee and hip bone, twisting my arm in its socket, and greatly increasing my self-pity. The next day I made an appointment for a cardio consult, which still took several months to accomplish, since it involved waiting weeks for an appointment with my PCP so they could make the recommendation to the cardiologist, who was booking a month out, so they could hook me up to a Holter monitor for a month, then send those results and me to a specialist in Denver, also booking a month out. Long story short, I paroxysmal supraventricular tachycardia, specifically an atrial flutter. And mild dysautonomia. None of which is definitely going to kill me. Basically, I can’t control my blood pressure very well, so it suddenly drops with small changes in body position. This causes my heart to speed up to get blood to the important parts, which keeps it higher than normal a large part of the day and creates exhaustion. But also, my heart rate randomly shoots up without any discernible cause. This is why I may need ablation to kill the extra signals firing and telling it to contract for no reason. But also, a few minutes into an episode, the rhythm changes, indicating that my atrium is going into a sort of feedback loop, the signal telling my heart to contract apparently bouncing in circles around my atrium instead of passing through in a nice straight line and going down into my ventricles like a normal heart should do. This may be due to some sort of inflammation or adhesions or other anomaly in the muscle tissue, and there apparently isn’t much that can be done about it. Except, possibly, to radically control inflammation. It's somewhat newly indicated in research, but this comes from "the big expert in electrical stuff" in our area, who has started recommending all of his arrhythmia patients go on a grain free diet. It was strongly suggested that I avoid stress, avoid all inflammatory foods, especially wheat, avoid too hard of athletic training, avoid weight gain, avoid alcohol and caffeine, and start meditating. I hate to admit he is right, and so far my own experiments are preliminary, but I do seem to do better on a plant-based wheat-free diet with very minimal grains- the occasional corn tortilla and oats being my only grain. So that's somewhat annoying, but on the plus side, my abs are slowly becoming visible without me constantly carb- and cheese-bombing them, so I guess there's that.

I could pretty much see his eyes light up at the news that I was parent to a five year old with cancer. Aha! It’s anxiety! I hastened to assure him that while yes, I am no stranger to occasional short bouts of depression and not so occasional feelings of impending doom (known here as The Dreads, recently redefined as The Mighty Midnight Dreads, since they have been the cause of zero sleep recently as my brain plays host to loudly reverberating scenarios in which I am not here to personally assure my kids' safety, security, and happiness), I honestly do not feel as though they affect my daily life, and it is hard to find any correlation between these heart symptoms and times of increased stress. He did hypothesize on the question I have been asking myself- am I meant to live at high altitude? Although I have had periods of these episodes since 2007, when I discovered one fine summer morning that birthday cake for breakfast before a bike ride was a recipe for racing pulse, lightheadedness, shortness of breath, and near fainting, which sent me to the ER for an EKG that was normal by the time the electrodes were placed, they did seem to fade almost completely when we lived in Kansas and the Front Range. They really only returned after our return to Summit County. Correlation or causation? I don’t know. His only wisdom was that the physical stress of living and sleeping in a state of oxygen deprivation was possibly a factor, but almost certainly not the only one. So, if I want to, if I get really sick of it and can’t manage to control it by diet and being a Very Calm Person and practicing vagal maneuvers and popping the beta blocker in the locket on a chain I now wear around my neck, I have the option of scheduling an ablation, but given the evidence that this is not a single problem, I am not yet personally convinced that shoving a catheter into my heart and zapping bits of it out of commision is entirely necessary. It seems a bit extreme. We’d rather do the not-extreme thing, downsize a lifetime into several suitcases, move 5,000 miles away to a beautiful island in the middle of the Pacific Ocean, and try living at sea level for a while.

Oh, you thought that was a joke?

So did we...for a while. Then we joked to the right people. The idea sort of grew on us. It has sort of been a thing that’s been on our radar for years. We had begun selling our stuff to move there before we moved back to Kansas in late 2011, but with the option to make much better money for a few years in Kansas and go with more savings, practically won out. We decided we’d rather pay our dues a few more years than go somewhere notoriously hard to make a living, get really broke, and be forced to go back to Kansas because we couldn’t afford to live anywhere else. It only took a few days after deciding to move back to Kansas that we also decided that our interlude with family and slow farm living wouldn’t be the worst time to start trying for a baby, as well. After all, I was almost 30, and guaranteed to be bored for the next several years.

So we had D. Somehow, when we sold the Kansas business and left to come back to Colorado, we had lost the itch for the ocean. All those quiet, creeping days of dust and brown horizons and inactivity and low daily excitement sort of reset our wanderlust back to near zero, not to mention all our attention was on our fat, giggling, squishy, delightful baby boy. We were too exhausted and too used to being close to family to consider a radical move. So we bought a camper and spent the summer in it, before getting that reluctant oilfield job as another financial stop gap as we plotted our next move, and somewhere in there, under the spell of walking out the door of our camper to the endless Colorado sky over towering peaks and rushing water and inquisitive deer and meadows waist-deep in wildflowers, all mirrored in clear, cold mountain lakes, with long, sundrenched days bookended by flaming sunrises and sunsets, we made another baby. And then there were diapers and breastfeeding and cancer, and then the loss of the job we never really wanted in the first place, and the attempt at being self employed in the Front Range, which barely got off the ground before we had the opportunity to come back to Summit County.

And then it was still cancer, but also skiing and biking and hiking and that gnarly, face-altering mountain bike crash a year ago. And then this last winter, which we spent working and trying our best to play, to enjoy life in spite of the soul-crushing cold, which somehow seemed less bearable this year, even though comparatively, it was a warm, dry winter. I took the kids out about every other day and we played hard on a budget, thanks to living where we do. Kids under 5 ski free, the outdoor ice rink is free if you bring your own skates, and there is plenty of tiny second-hand winter sports gear floating around this county, passed from consignment shop to mom to mom back to consignment shop. There are cookies every afternoon, parades on Saturdays, crafts and ice cream parties on Sundays, every day a different free kid’s activity, allowing my boys to live as though they were permanently on vacation. There was also school, which we dipped in and out of as virus after virus swept through the student body, sometimes staying home because D was sick, sometimes because everyone else was. I hit a wall again this March and April, beyond sick of the cold, maybe my own body malfunctions making it worse as I was perpetually exhausted and freezing, my mental state deteriorating as cabin fever fed the ADHD and the ADHD fed the cabin fever and I stopped trying to fight it because it was just too cold and gray and pointless. The heater could never be turned up high enough, I took to wearing wool sock and shoes and jackets inside the house just to stay warm, I let my kids watch way too much TV, and I just hid inside my head. And when I finally did poke my brain out into the world again, push myself out the door to go run, my heart would not let me take fifteen running steps before it went tachy and stayed there until I slowed to a plod, leaving my head light, hands numb, stomach nauseated, body weak and shaky. Thankfully, that was the worst. My heart and head are functioning much better now. But I do know one thing- I'd rather cut off my big toes than do that again.

Somewhere in there, the idea of the ocean recaptured our imagination. I’m not sure who first mentioned it. But eventually, the idea of a vacation slowly turned into the idea that we should explore what the realities would be if we were spend a few of the coldest winter months closer to the equator. B’s job wouldn’t suffer too greatly, as his summer was already looking full of contract jobs. Our lowest paying job was our winter job, working for the property management company that we have worked for off and on for years, and we figured that we could work extra hours in the summer to justify the time absent in the winter. We discussed the Caribbean and the Gulfshore and the Pacific, anywhere we could work as U.S. citizens if the opportunity arose.

Since then, the idea has gone through iterations. It took on a life of its own when old Summit County neighbors who now live on Maui offered to rent us either their guest house or an apartment attached to their home, and mentioned they might have some jobs for us to do. Between several income sources from various businesses started since their move, they need assistance, and we happened to mention our thoughts on joining them there around the same time their businesses hit max capacity given their current human resources and the demands on their time. We’ve decided we probably can’t afford to keep our house here, since we would have to continue to pay rent for the land it sits on and aren't allowed to rent it out, but with the worker’s housing situation here, we think we can sell it easily. Then, if we come back, we can find a rental more easily, since we will be pet-free at that point. (Andy, our first-born, went to live with my parents for a month or two this spring, because his aging hips could not take the deep snow, or the icy steps into our house, or the mud, or our slick flooring, or the jump into our car, and he was getting more and more hobbled by the day. After a month or two of Kansas living, it is obvious he is less anxious, less crippled, and has the freedom to bark at will, which has his big doggy smile plastered all over his furry face. As much as we love him, from his aging pink nose to his waggy feathery tail, he seems to be thriving far better at what is becoming increasingly obvious is probably his retirement home. He even chooses to sleep outside, we hear. Go figure.) It isn’t as though we couldn’t find work when we came back, whether in six months or two years. We know enough people in this county, have cultivated enough friendships and working relationships, we know work is the one thing never in short supply here, as long as ones skillset involves the ability to maintain, upgrade and/or update lodging and rental homes, and ones reputation as a reliable, honest contractor stays intact. So, we tell those asking us, we don’t entirely know what we plan to do, or how long we plan to stay. We will try it for the winter. Maybe we’ll be back. If we love it, if it makes more financial sense than coming back to Summit County, we’ll stay longer. Rental housing there is basically the same, or a bit cheaper. Even the real estate market is cheaper by about $150 less per square foot. Not that this means much, considering that we are in a far below-market housing situation here in Summit and we will be paying the same comparatively low amount to live in Maui as we are here. We have nothing to prove, just life to experience. My parents are understandably less than thrilled about their only kids increasing the distance between us, but understand that this is probably something we need to try since we’ve been threatening to do it for so long, and our hope is that instead of only seeing them for a few hours every few weekends, they can come visit us or we’ll visit them less often, but for a week or two at a time, and finally spend real quality time together.

Of course, with such a change comes fear. What if D were to relapse? We ask each other. If he did, the other replies, as we trade off being the frightened one and the reassuring one, what sort of memories would we wish to take with us back to Children’s Hospital and into the long, scary ordeal of radiation and bone marrow transplant? If he were to spend significantly more time in the hospital, what sort of recollections of his relative health and freedom would we most want to relive with him? If his body were to give out, to succumb to the spectre of sepsis that has stalked us for over three years now, if it were to become unable to hold him anymore, wouldn’t we hold each unique thing we did with him like a string of pearls, counting each one, turning them over and over as we remembered the skiing, the ice skating, the biking, the hiking, the swimming with sea turtles and whale watching, the sun rising over snow-marked granite peaks or setting over the ocean and volcanic cliffs? Would we regret giving him endless summer, less TV and housebound days, less flu season, fewer milk-white snow day skies, more sand and sunshine? Wouldn’t we remember the squeals of delight over splashing in icy mountain lakes and warm Pacific waves? We are starting to realize that doing the same thing every day, even if it is an amazing thing, tends to blur the days together and form more of a memory-picture than a string of precious remembered moments. It would be a perfect life to stay in these mountains, living on a diet of the same favors, as full as they are, and it would also be a perfect life to experience different ones. It isn’t that we think the grass is greener, it is that we are so privileged and fortunate as to be able to see the entire world as a field of wildflowers, and some places have wild roses and indian paintbrush, some places have hibiscus and plumeria, some places have flowering cacti, and it isn’t to say wild roses aren’t sweet to go walk through other flowers. As we strive every single day to harvest memories and feel sad at the end of the days we know will be forgettable, days where the howling subzero wind keeps us inside and we run out of things to do, we long for more, always more memories, against a day we may need them. As we told each other when deciding to start our new adventure as parents, at this point, we are doing the same things over. We still love them so much. But if we don’t try new things, how will we know we won’t love those things too? Life is short and earth is big and people are beautiful and we live in an age, and in a society, where the limitations to being able to expand our experience of it all are not terribly overwhelming if one is willing to make some sacrifices. Yes, we may fail. Spectacularly. Or, at the end of a few years, we may have begun to feel the new wildflowers become familiar, and start to long to walk through other new ones. Or we'll have changed as humans often do and long for stability instead. But as long as failure leaves us with the ability to come back and work, to still exchange time and services for money, there isn’t too much we can’t find our way back from. If we are fortunate enough to live a long life, we definitely hope in all of our living we will have found the time to save for retirement, but if life is cut short for any of us, we cannot afford to waste a single moment. We have an imperative to smell flowers and laugh and love and experience joy and taste new foods and watch sunrises and sunsets over new horizons and not waste a day of it on sadness unless we are forced to.

The thought occurs to me that having not a lot to lose comes with advantages. We are not tied anywhere by a fulfilling or lucrative job, just a mediocre one that allows us to live, not getting ahead, not falling behind. We have you beautiful souls to thank for our lack of medical debt- the expenses not covered by insurance you covered practically to the penny, sharing your love with us in the form of financial help. We are debt-free. If we fall flat, as long as we’ve made halfway sensible decisions, we won’t be significantly set back from where we are now, and there is always the chance we could succeed, even in the most narrow definition of the word; financial security.

We often wonder if there will come a time in our lives where we are satisfied with repetition. Maybe there will. I think it all depends on how well a job pays and how well one can live around its demands. If either of us had a career that lit us up, we would probably feel less ambivalent about everything else as well. If that happens, we promise ourselves we will listen to the voice that says, “This is nice.” But today, there are things out there we haven’t tried, and trying them could be the worst or best decisions we’ve ever made, and there is no way to tell that except in hindsight. What we do know is that the only time we measured success in terms of what we owned was when our world was the smallest, our perspective the narrowest, our view of the horizon the most myopic. When life was bigger than us, and our goal was mere survival, we didn’t care. We had bigger fish to fry. When survival began to seem likely and life became about thriving through survival, we didn’t care. We had perspective and gratitude that things could be so much worse. Somehow such things as things only seemed important when our life had the least amount of other sources of stress, joy, or excitement.

I am not sure why it is we have this insatiable hunger for life and location and flavor, to the point where we are always leaving the intentional family we surround ourselves with in each place. It seems like should be the last ones to leave, given the way I wax so lyrically and so idealistically about community. It sounds so good. It isn’t that we want to leave for the sake of leaving, and it isn’t as though we think the places we go are going to be any sort of panacea for all of our problems. It is just that we treasure experiences, and are deeply secure in the relationships that truly matter no matter the miles between us (my poor parents simply have to accept where we are, and not take it too seriously. Some day maybe we'll know where we will be long-term and build them a tiny house in our back yard.) As our kids get older, of course, we will need to start including them in these conversations, as we already do to some degree, and listening to them, because it is entirely possible, even probable, that they will gravitate toward less experience and more continuity if we fill their tanks with experiences early. That’s a bridge we’ll cross in a few years. By then, we may have developed our own longing for stability. Or who knows? Maybe this will be the move that lands us in a sweet enough financial situation we can afford to have a home base and travel from there. I mean, that would really be the most ideal. It’s only those of us who stubbornly refuse to accept the limitations of our finances who zing around to fun, touristy places we can live and work in, since we cannot afford to vacation there now that we have kids, and we're loathe to leave them behind.

Of course, leaving Summit County comes with a genuine sting of remorse and grief. We can't have our cake and eat it, too. If we don't return, my kids won't be the expert skiers they so want to be (and assume, with the confidence of children, they already are.) They won't know the pine and sage scents that summon memories of beautiful summer days, or the deep blue Colorado sky, or the level of athleticism that is created by living at 9,000 feet. And me, personally... it is hard to lose my Summit County sister (again). I have one of those rare friends up here who shares my love of grammar and alliteration, my obsession with the outdoors, my fascination with psychology, my love affair with logic, and who seems genuinely thrilled to babysit my kids at a moment's notice. We have biked and skied together all over this county, have been terribly obnoxious to everyone around us with our loudness and laughter, and know horrifying secrets about each other, ensuring we will be best friends forever and whoever gets dementia first will probably need to be lovingly smothered by a pillow by the other to keep those secrets safe for both of us. Neither of us are phone people, which means that we will need to travel to spend time together, but that is a poor substitute for living five miles apart.

I honestly am hesitant to say it is definitely happening until we’re on the airplane off the west coast, having put our vehicle on a boat, and our remaining possessions in suitcases, and I look down and realize just how much ocean is under us, lying between us and everything we know. I am feeling myself getting antsy, wondering what I should be doing to prepare for a 5,000 mile move with four suitcases in four months, while also wondering how much I should commit to selling the things we will not need living where there is no winter, because if we’ve learned anything, it is that plans can change in an instant. I am superstitiously paranoid that if I sell the things that really define our lives here- bikes, skis, winter gear and clothes- something will change and we will stay and we’ll never afford to replace them.

In the meantime, we are determined to truly enjoy every second of what might be our last high country summer. I have found myself gazing upward on a daily basis, mesmerized by the way the light filtering through the gently hazy air turns each mountain in a range progressively more blue. The way the snow still clinging to ravines and couloirs above treeline creates patterns I could never quite learn to emulate when painting them. That simultaneous nourishing warmth and refreshing chill that is the sun and breeze playing together over bare skin, and the cool silence and ageless dignity that is the stand of century-old fir trees guarding the stream into which my boys dip their toes when we’re exploring the hillsides behind our house. The deep midday silence in sun-baked sage meadows, where only the drone of insects is audible, and the lively evenings in those same meadows, filled with chirping birds and frogs hiding in the wetlands. Until we go, we cannot get enough of gliding over the mirror surface of the lake on a paddleboard, between islands home to ospreys, of evening woodsmoke from campfires drifting through our valley, of afternoon thunderstorms. We are savoring it and tucking it away in our memory vaults, and if a day is lost to sickness or laundry or the need to clean house, it feels like a real, grievable loss. Only in a place where summer is so short and so beautiful is the feeling of loss over even one day felt so acutely.

Bobby is trying to do all the Colorado summer things and still support us. He has been insanely busy, having committed to some deadlines early on for jobs that turned more complicated and time consuming once he was doing them. He doesn’t enjoy discussing work, but it always amazes me when I go any place with him how much of a familiar face in the community he seems to be. We can barely go anywhere without him running into people he knows and stopping to visit, which always throws me for a loop, since in my mind he is incontrovertibly an introvert, and seems as though the only people he knows or wants to spend time with are his family. It makes me realize again that we are all different people to different people, and who can truly say who our real self even is? At any rate, it reaffirms my belief that even if we need to return in a few month or years, there will be work. It really isn’t what one knows up here. It’s who one knows and whether one is known to be trustworthy.

If we seem like we are hard to get ahold of, it is because we are out enjoying the mountain summer and having no bad days. This is a sort of mantra I’ve been telling myself lately, and it is one of those things that once I heard it, realized it perfectly describes the philosophy I’ve been struggling to put into words for so long, and failing to live by as often as I succeed to do so. No bad days. There are hard days, and days that feel like they were not lived to their full potential, but bad days? That level of gratitude is something we can control by the simple process of being a healthy level of pessimistic. Crashed your car, but are you paralyzed? Missed a flight, but can you afford a ticket? Water heater exploded, but are you homeless? Diagnosed with cancer? I mean, that’s a doozie, but still not the worst day to someone who has exhausted every treatment option and had their first hospice visit today. No matter how hard it gets...no bad days. Not as long as one thinks of “bad” as an absolute value. Anything that is not as bad as it could be is, by the same token, at least a little bit good. Or at least that’s what I tell myself.

We’re off to find some wildflowers.