Inevitable Season

Winter is an integral part of life in Minnesota. People hear that this is my place of residence and the next question, facial expression, or highly original comment inevitably relates to the season from which we suffer roughly six months each year. It is widely known that winter happens here in a big way and those of us who have lived here more than five minutes have experienced this firsthand.

From the Fanconi Anemia Research Fund’s    information regarding “Relationship to Cancer.

From the Fanconi Anemia Research Fund’s information regarding “Relationship to Cancer.

Still, every year there is a bit of unfounded hope that perhaps this will be the year that winter won’t show up, or even if it must, that maybe there’s a chance that it won’t be quite as awful as the winters we’ve already survived, that maybe because we’ve paid our dues in years past the worst is behind us.

Excerpts from Sean’s medical chart

Excerpts from Sean’s medical chart

Despite our best hopes and our warmest thoughts, at some point each year in Minnesota the arrival of winter is confirmed, either by the first big storm or the often hard to believe readings on the thermometer.

From an email written by Sean’s Ear, Nose, and Throat surgeon on 1.24.19, which translates to, “Doing this operation might create a hole in his throat, which may kill him, so we recommend radiation instead of surgery.”

From an email written by Sean’s Ear, Nose, and Throat surgeon on 1.24.19, which translates to, “Doing this operation might create a hole in his throat, which may kill him, so we recommend radiation instead of surgery.”

Once the season begins, we know we’re in it for the long haul. We’ve lived through other winters so we know it won’t be pleasant, we just don’t know how bad this one will be. Run of the mill? Record-breaking? The history books have reports on both sides, though they certainly skew one way.

In the beginning we think, “Maybe this isn’t so bad after all. I’ve got drawers full of cozy sweaters that have gotten me through the last pile of winters, each of which I lived through to see turn into spring. It’s certainly not lovely and temperate like autumn, but I think we can get through this.”

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“Radiation 2/35 was followed by a lovely walk in the ‘warm’ Minnesota temps. Taking advantage of this moment pre-snowstorm and pre-radiation induced side effects.”

As the winter progresses, we listen carefully to forecasters, the ones who went to school to learn about seasons just like this, the ones who have access to all the data we can’t see. At times, they tell us bad weather is headed our way. Sometimes they’re right. Sometimes they’re not. Either way we hold our breath.

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“This guy just finished day 9/35 of radiation and he's feeling it. Spicy and citrusy foods are bothering his mouth, his throat hurts with every swallow, and that side of his neck is red and warm. ‘Yup,’ his team all says. ‘It's only going to get worse.’”

We see on the news how other states, cities, communities are being affected by this season. Charts of accumulated inches, photos of cars stranded, maps made beautifully daunting with colors, coded to show who’s got it worst fill our news feed and our consciousness. Even when our window shows only a dusting of snow and our own commutes are perfectly manageable, these images from elsewhere negate what we are actually experiencing, instead clouding our minds with fear that we will be next, that our data will be added to the charts, that we will become the next headline.

From    Day 35/35

And then, just as they predicted and just as we feared, a storm hits. Stockpiling supplies, sending warm vibes, and studying the meteorologists’ charts could not keep it away, nor could stories told to us by others who have lived in cold places of their own. As terrifying as it was to see storms on the news effecting other communities, no amount of reporting could adequately prepare us for what it feels like when the storm comes to our neighborhood, to our house, to our family.

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“Day 28/35. Well, we got through 5.5 weeks before being admitted to the hospital-much longer than we'd expected. Sean's dizziness has continued to worsen, so much so that he is very unsteady on his feet. His hemoglobin is also dropping, so we decided it was time to get checked in, get blood, and try to figure this out. The clinic is 4 blocks from the hospital, but they called this mini ambulance to make sure he got there safely, which was a first for us. He's now all checked in and waiting for the blood, hoping that does the trick.”

In the midst of the storm, there are moments where it feels as if this could be the end, that this storm could kill us. This may sound dramatic if you live in a more temperate climate, but it feels completely legitimate when the winds are pummeling our windows, our nose hairs freeze within moments of stepping outside, and when we’ve heard plenty of stories from people dying from storms just like this one.

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“Day 29/35. It's been a day of ups and downs. Dizziness is so much better post blood transfusion, but his stomach is not happy and he just vomited a ton. When he had his BMT and had chemo, his throat was so sore and he was so sick that he ripped open his esophagus and we thought it might be the end. Seeing him throw up today with an irradiated throat made me panic for a number of reasons. Hoping it was an isolated event. He was able to have radiation today (only 6 more!) but they're holding off on chemo until his stomach settles down, as it's a probable culprit.”

Eventually the storm does recede. Streets are plowed. Schools reopen. Car engines end their strikes. A collective sigh is exhaled. The storm didn’t kill us after all! That was a close one. What a story we now have to tell!

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“Day 30/35.
HOME! HOME! HOME!
5 treatments remaining!”

But we are soon reminded that winters in Minnesota are comprised of more than one storm. Surviving one has no correlation to how many more storms can be expected. In fact, the historically snowiest month is yet to come. As we go through the next weeks, we continue to be pummeled by storm after storm. Sometimes there are weather forecasts that warn us, other times we awake to snowdrifts that we did not see coming.

After a while we have to learn to make the best of this winter thing or else we will be swallowed up by Vitamin D deficiency and despair. We buy cozy blankets, warm drinks, fashionable boots, logs for the fire. We decide that if this is the season we are in, we may as well find some ways to make it bearable.

When we encounter people from less arctic states, we downplay how bad it is. We don’t want to admit out loud that the actual air around us has become dangerous to be in for more than a few minutes at a time, lest we depress both the listener and ourselves.

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“These photos were taken 25 minutes apart. Sean gave all his energy for a wonderful night of fun with family and friends, got home, and collapsed in exhaustion.”

And then, at long last, we see marked on the calendar the end of this seemingly unending season. The date is there, circled in red, the words “First Day of Spring” underlined vehemently. We count down to that day, clinging to it for strength as our skin becomes more pale with each hour from the lack of sunlight. When the day on the calendar comes, we celebrate mightily. Spring is here! We did it! We survived another winter. We put away the shovels and the sleds and bring out the spring jackets and seed catalogs.

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“Day 35/35! He rang the bell! Radiation and chemo are complete!”

But wait. What’s that white stuff falling from the sky? It can’t possibly be snow. The calendar says it’s spring. Ah yes, I had chosen to forget that winter in Minnesota does not abide by the guidelines laid out by calendars. It will end when it wants, and it does not want to end anytime soon. Storms continue to blow in, made even more depressing and harder to bear because we are not hearty as we were when the season began. We are weary, beat down by the storms we have been enduring for seemingly endless months.

Eventually though, the snow melts. The grass turns green. The trees begin to bloom. The pile of shoes by the door includes flip flops and sneakers, not just snow boots. A few of the extra blankets piled on the bed are folded up and put away. Only one pair of socks are worn at a time. It feels as if this time it’s for real. Perhaps we have actually come to see the other side of this season.

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“If anyone knows to stop and smell the flowers, it’s this guy.”

With joy we dive headfirst into the season of spring, because there is no gratitude like that of a Minnesotan when spring arrives. Our parks are filled with bodies, ready to stretch and move after months of forced hibernation. We line up for scoops of ice cream, because we can finally be outside without our teeth chattering. We dig and plant in our gardens, because we are ready to see colors other than white and gray. We grab hold of each day of sunshine, each singing bird, each blade of grass because we know that without a doubt, before we know it, winter will once again be upon us.

From the Fanconi Anemia Research Fund’s    information regarding “Relationship to Cancer.

From the Fanconi Anemia Research Fund’s information regarding “Relationship to Cancer.

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