It feels like I’m waking up from a nightmare – the last 14 + months. At the end of it all, I can’t believe we lost Luke. How could this possibly be real?
10.5.14 – Luke ran a marathon.
10.5.15 – Luke is already gone.
10.10.14 – Luke got his moose.
10.10.15 – Still gone & sinking in more each day.
A year ago I would have, and likely did, tell people who asked, that I didn’t think life or Luke could look or be that different in a year. He was doing so well.
However, this diagnosis is horrible, as noted by wikipedia:
GBM is a rare disease, with a rate of 2–3 cases per 100,000 person life-years in Europe and North America. About 50% of the people diagnosed with GBM die within one year, while 90% within three years.
This cancer feels like the wild west as far as doctors’ general handle on the disease. Where it comes from, why & how to tackle it – have been and appear to be active questions in this field for the past 50 years or more. Such basic unanswered medical questions are not great news in the 21st century. The general consensus is that those patients living longer are typically young upon diagnosis, healthy and have the right attitude. Luke had all of those things in his favor.
Given the rarity of drawing this cancer, there was considerable hope that Luke would be amongst those tackling years, not months. We had a good team behind us – one of the best. I know they wanted to believe too, and they knew what we were up against. None of us could see it playing out any other way. We knew it was bad, but I think we thought “3 years minimum, likely 5”. We held on to that. What else could we do?
It turns out that quarterly brain surgery is just not feasible – for a multitude of reasons.
The last year and half was absolutely crazy. Before the diagnosis there were signs that something was amiss, but it was hard to pinpoint. The diagnosis clarified those oddities and forever changed our lives. We were suddenly and abruptly diverted down an absolutely unforeseen path of research, travel, specialists, surgery, recovery, medicine, nutrition, clinical trials, chemotherapy, radiation, cancer, fatigue, life, death and change – on so many fronts.
Additionally, recovering from brain surgery, has it’s challenges. One of them is steroids, to reduce swelling. Doctors claim it’s a minimal dose – you won’t notice a thing – but after the first surgery, I literally thought they might have scooped out some of the lovable parts of Luke – who was this guy? Steroids. Luckily Luke was able to taper off of them quickly and did, sweetly return to himself – certainly in large thanks to an amazing surgeon & team. Before later surgeries he would warn loved ones that the upcoming him would be steroid influenced and temporary, please remember that he loved them. Luckily, most of his steroid tapers were a relatively short 3 – 4 weeks.
Still, things were not exactly the same. The brain is complicated. Additionally, the horrific nature of this diagnosis – essentially a death sentence – looms over your everything and yet remains utterly unbelievable, to the bitter end.
It was also crazy to get used to brain surgery. To know the routine of it, where to go, when, whether to expect to see the doctor, remember the nurses, the timetable, the waiting room, the local walks, the associated drugs, the steroid taper, the schedule. It’s bizarre that this became routine for us over the course of four surgeries.
After diagnosis and the first surgery, we were able to gain ground and get our feet under us – the marathon, the moose – but then a bad MRI threw us into a tailspin of research, options and a 2nd resection. We trucked along after a relatively quick recovery. Luke returned to work and progressed through 4 cycles of chemo before an April MRI brought concern, followed by necessary action, research & surgery in May.
Again we tried to regain our footing after the surgery, but this time it was more difficult. Decent times in April, didn’t seem that far away. Trying alternatives was our only option. We were drawing at straws. Seizures crept into the picture, took over more than their fair share of room and intensified over a few short months.
Our lives have been in fast forward.
In the scheme of things, Luke had a wonderful year. We were able to live as normally as possible under the given circumstances – ski, work, play, travel, etc. Planning anything was tentative, as everything had a way of changing with some regularity. Once things went downhill, they really went there relatively fast – over the course of 4 months. During that time there was progression of the disease. It happened under under our noses – gradually, daily and then in spurts. One week he was driving and talking, the next, not so much of either… It was hard, and really, it was fast. Always, it was unbelievable.
If she were prone to, Elsa Bird would have likely dedicated the following original tune to Lukas Peter “Rabbit”:
I love you.
You love me.
Now you must join your destiny.
This was sung in the living room of her own accord, while her father lie dying in a bedroom on the opposite side of the house. A room she flitted in and out of as we labored with Luke.
It was a labor. It was slow, it was solemn, it was painful, it was hard, it was long, and simultaneously out-of-control fast. It was about preparing the space; it was about walking Luke as far as we could go with him towards his final, ultimate summit of life. It was about saying that it was okay to go.
It was complicated. It was impossible to have to simultaneously understand that death was the new goal and tell your partner that they should push for this new summit as best they could. Somehow, all of this transpired. As with birth, death is a part of life. It is supposed to happen and will, in some capacity, happen to all of us, if it hasn’t touched you already.
We were so lucky to make it home. We were further enriched by the amazing support hospice offered readily upon our arrival: to have some control over the end; to be comfortable – if there is such a thing; to be near family and friends; to be in the comfort of our home. The continuity and consistency of care that hospice provided ended up being very important for us given the speed with which Luke ultimately went once we got home – less than one month.
Five days before Luke’s death we hosted his favorite meal & holiday for the family – Thanksgiving. We scooted his bed as close to the door as possible, sat at the kitchen table and enjoyed the flavors with Luke. We took turns feeding him. He had 3 bites of everything – turkey, cranberry, potatoes, brussels sprouts, etc. It was a big meal in his final days. He enjoyed it as best he could.
Despite being inches away from Luke’s face, with my hand on his over-beating heart – until it was wasn’t…. it’s still hard to believe he’s gone. Despite keeping him overnight after he passed and knowing he was gone as he was wheeled out of the house and away from our home – the home we bought together, brought our daughter home to, lived in, and planned to grow old in… It’s still unbelievable.
I feel like the cancer died; it clearly needed to, but now I’m ready to have Luke back. Super ready for pre-cancer Luke to come walking through the door… any minute.
For the two nights preceding Luke’s death, a black bear visited our house, rooting outside our kitchen & bedroom windows. On night two, I stepped out on the porch to shoo it away. I could have easily touched it’s rump. We warned Luke a spirit animal was on the prowl, looking for him. We had already brought in his moose hide and laid it on the daybed opposite the hospital bed. I imagine these critters walking beside him into the next world. The bear has not returned since Luke’s passing.
The path to Luke’s death was quick in weeks, but slow in days. His language went from occasional words, to grunts, to humming, high fives and then all that he could convey with a single eye; his left arm eventually so weak he could hardly itch his nose. Definitely not the way anyone hopes to go.
So hard to balance not wanting your person to suffer and not wanting to let them go. So hard to climb this mountain with them, each of you struggling at the false summits, questioning the true summit, wondering at the destination, stepping forward blindly, necessarily. We talked Luke through the process as best we could, we visualized, we sat, we held, we waited. The goal had transformed; Luke knew it too. As with all things Luke, once the goal was set, he went for it, and he went for it as fast as his body would allow at such a young age and with such a strong heart.
I tried to imagine him cresting the summit, a bright light, a final step into the next world – one with it’s own landscape that he’ll be exploring while he patiently awaits our arrival – as he has on so many mountain accents. He’ll know where to find all the best ski lines, deep fishing holes, beautiful mountains, and big trees; he’ll be free to move, to ski, to walk, to jump, to hug, to run, maybe even fly – who knows?
The morning of his death, he opened his eye as we rustled his bed pillows and bumped him around. Not long after he was reconfigured and settled in, his breath changed. It was shallow, it was variable. In a marathon’s amount of time ~4 hours, 30 minutes, things began to climax. We sat with him. He was surrounded by family. The windows were open. With a gust of wind, his soul departed from this now worn-out, but so loved body.
I knew. I was prepared. I was right there. I was encouraging him to let go.
I’m pretty sure I yelled. I couldn’t believe it. I felt sick. A visceral feeling of loss. Moments later I unexpectedly had to excuse myself to vomit. So much to process. Death is so final. I still can’t wrap my head around it.
After my nausea readily subsided, I crawled in bed with him. I held him. I tried to soak up the last of his heat, his body, him. One last snuggle of sorts. A few hours later, when I finally made it outside, the colors were vibrant.
That night we draped him in the moose hide and hoped the strength of that animal helped during his transition. The next day we made prayer ties as we looked in on him, until the mortuary came to take him away forever – to be cremated. I kicked the road. What the hell?!
The night following Luke’s death was a full moon, a super moon, a blood moon, the harvest moon, an eclipse and our 7th wedding anniversary. I felt like a star-crossed lover. Too many convergences.
People gathered by the Big Eddy along the banks of the Teton River under the bright, hidden, then bright again moons mentioned above. There was a large crowd upon short notice. There was a good fire – tended through the night. There were mountains in silhouette, water nearby, and we were as close to the stars and moon as we could be on short notice. It was a blur of hugs as I made my way around the crowded fire.
Many thanks to those who could make it.
On Tuesday after his passing, we met the mortuary fellow on the highway, as we were on our way to Green Canyon Hot Springs. He passed us Luke’s ashes, and we took Luke with us on our day. Unfortunately, I’d misread the hours, so we had a quaint 4 hours to kick in the canyon before the pool opened. We took Luke down to the creek, had a picnic, picked rose hips, explored the creek bed, nearly lost one of Elsa’s shoes, and walked up the road.
Saturday, October 24th will mark the public acceptance of the reality of this ill fate. It will be unbelievably difficult to face this truth with all of you. Simultaneously, I couldn’t do it without you. The truth is so hard, so unbelievable, so completely incomprehensible. Soon we will step forward together into this very different reality. Thank you for walking with us throughout this complicated year, during this particular, blind step forward in life and always.