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A decade ago, Luke and I lived in Missoula, MT for a decade – also home to Snowbowl. Not only did we first meet on her slopes, but during the winter months a good piece of our lives revolved around the pitches of this mountain. There’s an undeniable, solid camaraderie amongst Snowbowl skiers. It takes two old, two-seater lifts and approximately a half hour to get to the top of the mountain – which might be considered a commitment by some. The top greets you with 2,900 vertical feet laid out in multiple ridges, treed meadows, and likely – bumps. Not necessarily for the faint of heart.
Then you meet the locals or become one yourself. You find your line(s) and you find your niche – there’s one for everyone. It’s a terrifically dynamic crew with a fierce appetite to ski – for many, in top condition and at top speeds.
Given it’s low elevation, it also means skiing in all conditions. February 2005, evidenced below, was a bonding year for those of us who continued to ski fields of ground between patches of snow. It was also a significant factor in spurring us northward to a chapter in Alaska, but not without sincere regret at leaving our Missoula family. We’ve kept in touch with the occasional visit (we certainly owe more), correspondence and through friends.
It’s amazing to feel like we could go back in a heartbeat and not have missed a beat. It’s a mountain, whose people and delicious food, I wish I could carry in my back pocket (and put in a more powdery location!). I get the feeling that they must still feel that way about us from their recent amazing outpouring of support with this mobile sign. Tear-jerkingly sweet. It even spent a few days featured prominently on the mountain’s live web cam.
To top it off – because we know Snowbowl knows how to raise the bar – they sent a signed banner of the message to boot. For real people. True love. We are awash in your outpouring of love and support. Thank you. We love you too! High Fives all around, says Luke.
In good news Luke’s been given the green light to fully resume activity!
In other news, the swelling that he’s been dealing with at his temple has been officially diagnosed as cerebrospinal fluid (CSF). “Any tear or hole in the membrane that surrounds the brain and spinal cord (dura) can allow the fluid that surrounds those organs to leak.” Apparently it’s relatively common after a second brain surgery and is the result of a surgical point popping.
It’s currently been deemed cosmetic, but has been, at minimum, disconcerting. The point of concern changes daily and has often been swollen, though doesn’t hurt. When it’s swollen tight Luke’s been taking it easy, trying to get the swelling to abide. Now that we finally know what it is, the plan is to wait it out for 4 – 6 weeks to see if it settles into a pattern or (hopefully) down. We’ve been in touch with Luke’s nutritionist, who dolled out a barrage of supplements to beat back the inflammation that looks to be the hole in his armor – according to his blood work. I like to think the body knows what to do and will get to healing, especially with the added nudge of the recommended supplements – fingers crossed. If not, we’ll be back in touch with the surgeon and may have to return to SF at some point.
In the meantime, Luke is simply relieved to be off of strict rest – phew! And he’s back at it across the board – working, skiing Teton Pass, biking & running when possible, working on the house & yard, and reminiscing a recent 3-day yurt trip. We’re carrying forward and hoping for the best. Elsa just turned 4 – which meant a good portion of the month was devoted to fun and loving activities for our big birthday girl. A sledding party, a new bike from her grandparents, a walk by the Teton River and some necessary time on the slopes – while the snow lasts…
It’s funny how children mark time. If not for her, it seems like it could have been just yesterday that we were coming home from the Last Run Inn after a beautiful day at the Bowl – our hearts and belly’s full with camaraderie, food and fun… and yet here we are – a decade later, during another low snow year, living in the Tetons with our growing girl and keeping Luke alive & well. Goes to show, you just never know.
We continue to be grateful for every chapter we get out of this sweet life together. A big thank you to all our friends for making each chapter so special, fulfilling, and lasting – we’re not into endings and we’re glad you’re not either. For every rough patch, like a low-snow day at Snowbowl, we’re simply drawn closer together for having gone out and given it our all.
• 2005 video footage featuring Luke & some other notorious Snowbowlians courtesy of Greg Seitz.
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Days later our reality drastically shifted. I cut his curls. A nurse shaved what was left of his hair shorter yet. There was a biopsy and a surgery. Within weeks his noggin held a questioning scar and soon-to-be mohawk. As his hair thinned with radiation, the light diminished and the days got cooler. This burgundy hat became a definitive part of his daily attire.
Luke got word from UCSF that he could try wrapping his head with an ace bandage to help reduce the swelling. The first time he did this we were flabbergasted. An hour afterwards, the point of concern was entirely devoid of fluid and swelling. Of course, it readily returned, but it was still impressive.
Despite the adages to ‘take it easy’ during radiation, Luke continued to go as full steam as his body would allow and was unexpectedly up until 4:30 am on his last night of treatment – processing a moose. Luke moves about a thousand times faster than these updates; so first, I must recount the marathon he ran in 4 hours, 25 minutes – less than one week before the moose/radiation finale.Luke continually trained for the marathon when time and energy allowed. On October 3, our family left at 6:45 am to make his 8:15 daily radiation appointment in Idaho Falls. The team, who has clearly come to love Luke, greeted us with smiles. When we walked Luke back to the treatment area, we were delighted by the super thoughtful banner across the doorway – “Good Luck Luke!”. They have been consistently wowed by his constant level of activity and have deemed him their most inspirational patient to date – even bringing in doctors to meet Luke at one point. Afterwards one of the nurses, who’s recently taken up face painting, asked if she might paint Elsa’s face. Of course Elsa was delighted by the prospect & the finished product. At 8:45 am we made our way to the Salt Lake airport, with our new pink kitty-faced daughter in tow, ever eager to show her painted face to her Portland cousin upon our arrival, a mere 12 hours away… In turn, Luke was also planning on surprising our hosts with his new mohawk – the only hair-do choice left, aside from shaving it all off, once it started falling out. Luke’s sister, Anna, her husband Chase & their kiddos one-uped us when they picked us up from the airport dressed in their Canadian team regalia – race ready and so perfect.
Tying flies has been the perfect activity for the nights he’s risen at 2, 3, 4 & 5:00 am – wide awake. Insomnia, being one of the many side-effects of steroids which were re-issued upon beginning radiation and have proven to keep the swelling down. However, we found their downsides considerable and we were glad when he was issued the calendar to reduce use – effective immediately. He’s within a dose or 2 of being completely done and already sleeping a ton better; though still prone to waking early. Melatonin has been helpful at night as well, plus has benefits to GBM’s.
So far he has luckily been limitedly affected by the chemo drugs (temadar) and the radiation. Below are a few shots of his mask and the 360º radiation set-up in Idaho Falls. The folks are super friendly and it’s done quickly – all scientifically focused in doses. Of course everyone else has to leave the room for the actual treatment. He feels a little dazed momentarily afterwards – “like someone just indiscriminately shot my braincells.” Between that, the drive and the drugs there is certainly a limit to his energy levels and inevitable crashes happen. They are typically easily fixed with food and rest. We’re still perfecting the optimal diet and sifting through the limited sure advice on the nutrition angle to optimizing radiation & chemo, while starving the tumor, but he’s been excellent about cutting gluten, sugar, most white foods and more that are unanimously on the “out” list.