[vc_row][vc_column][vc_column_text][/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]Timeliness is not always my strong suit… Many of my updates during Luke’s illness were forced, given the fact that things were changing so quickly that if I didn’t post what I’d already partially composed, it would soon be old news. Clearly, life on that front has slowed down – as have my updates… So, I hope you’ll forgive the extreme tardiness of this belated, but heartfelt Thank You!

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In all honesty, this post began approximately 6 months after Luke passed away; I can’t speak to exactly when it was abandoned. I’m sure wanted to revive & publish it for last year’s anniversary. I can only think it didn’t come to fruition at that time because Elsa & I were living in our guest yurt then, while I attended to some necessary house upkeep (sanding the floors, etc.). I was hauling water, making fires, cooking on a propane stove & living out of a cooler during Elsa’s first 6 weeks of kindergarten – life was busy and the internet connection was sparse — excuses, excuses. After Luke’s first death-iversary passed, the pressure was off and so another year has passed… I appreciate your consideration in this overly late, but no less heartfelt note. I have opted to leave and augment what was written, now over a year ago – because though these wounds are less fresh today, it’s important to know what lies beneath ever-thickening scar tissue.

The photos below illustrate the day I spent honoring Luke one year after his passing. The day entailed a solo hike up Table Mountain and a small shrine in front of the Grand Teton. It was a good place to contemplate life and death, as a Raven danced on the rock beside me.

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Thank you to all those who gathered in Teton Valley on October 24, 2015 – from near and far; and to those that couldn’t make it, but were here in spirit. The day, venue, friends, family & fire could have only been made more perfect were our missing guest of honor able to join us. The force of the whole was terrific. The number of people overwhelming. I’m sure I didn’t see you all and I know I didn’t hug you all. However looking over the sea of friends was nothing, if not supportive. I just wanted the proximity of having you all so close to last for so much longer – to get see each of you, even for a moment. Your support has been & continues to be an incredible well of strength.

There is a long list of friends and volunteers who made the venue, music, mic, ceremony, decor, food, shelters, chairs, tables, kids’ tent, dinner, fire, and memories all so top-notch. Your physical and financial help made this event what it was and I can’t thank you enough for your support, action, conviction, and follow-through. It was as beautiful & memorable as it could have been. I’m so appreciative of the effort and ease with which so many were readily hosted to honor Luke. Thank you!

With over 300 gathered together, from as far as Alaska – it was one hell of a group hug for this amazing man. Luke would have been nothing, if not proud. I know he was. He loved his people and was an ever generous, genuine and willing friend – always up to help or for an adventure of any size. I hope we all continue to carry a little Luke forward into our daily lives, and that he will live on in that way — that we will all be more willing, say yes and go wholeheartedly. It’s important.

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I feel like I’ve fallen behind in life – on a multitude of levels. I’d like to catch up, but I don’t begin to know where to start… except that I am. Slowly. Ever so slowly.

And yet it feels like every day is beyond full – just like everyone’s lives. There’s just not enough time. I know the things I “should” do to slow life down. I don’t know why, most of the time, I don’t. I always feel better when I do…

I’ve responded to only the most necessary personal emails since Luke died, for the last 6 months – maybe longer… If you’re someone who’s reached out, I so appreciated each message, story, photo & note – you name it – truly I only wish for more… My thank you list is long and mostly unwritten.

I believe it’s the weight of the response that has stymied mine. I, also, don’t know what to say.

I still feel like he could walk through the door any minute. Will, walk through the door in a few days. I, too, can’t really imagine he’s gone.

Forever is just too hard to visualize. So unbelievable. So unreal. So long.

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The above is from the original post and I’d like to speak to the fact that it felt like Luke could walk through the door at any minute or like he was in the room next door – not in a creepy way, more of a comfortable way… I completely understand if that doesn’t make sense. Regardless, I didn’t think about it much, but it did feel that way. Frankly, I didn’t mind.

In November, a little over a year after Luke’s death, I reached out to a friend of a friend, a psychic medium. It was an amazing experience whatever your beliefs. There was solace in feeling Luke’s presence, sense of humor and self – and messages for both of us to convey. What came to light through this interaction was more though – apparently, he had yet to step into the light – joining his spirit & soul. He was still wandering the tunnel of life, looking over past experiences and being near. She said he was close to making the move, but that it might be helpful if we did it together – help him take the final, necessary step beyond. Just like Luke to make me do this again… Really?! Saying goodbye the first time was one of the single hardest things I’ve had to do in my life and now I need to do it again… We made a date in December and did the deed. I won’t go into the details, but in the end, he high-fived his way into an abyss of love and light – rejoining his spirit & soul. She said he’d be stronger for it, that it’s the evolution of the process, the next, necessary step in the cycle of death.

I’ll be honest. It feels different. Since that day, it’s felt like he’s gone in a more real way.

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Then there’s today, tomorrow – the future. Let’s not get ahead of ourselves… No visual on a future just yet. But there’s always today. Every day.

Things that have to be done, meals that have to be made – you know the drill. Plus life plans, packing up past lives, playing with a five year old (6 now!), ect. It’s a long list and plenty to keep a person busy.

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I still say “we” sometimes. I also don’t think I’m talking about we or our being Elsa’s and mine, but Luke’s and mine – Our house. Our car. Our boat.

It’s so hard that everything ours is now more or less mine – along with the responsibility, logistics and brute strength that go along with ownership and life.

Turns out Luke spoiled me. I knew this. So did he.

The first winter after Luke’s passing was the first time I snow-blowed, and frankly, I still didn’t embrace it. My darling sister took control of snow duties for the most part. In my second winter, on my own, I typically resorted to shoveling after not being able to start the snowblower on multiple occasions… I do have resolve to embrace the snowblower more fully this winter, but I also have patience and complete knowledge that this is a step by step program, and for some reason, some steps are bigger than others and take longer to achieve.

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When the first Spring rolled around, I really, really did not want to mow the lawn – a lot. Only when a neighbor sweetly came over to get the mower started and then left, was I forced to take advantage of the moment (aka- a running mower) and get ‘er done. Two years later, I can troubleshoot to some degree when it doesn’t fire up immediately. The first year I mowed everything, though never as well, in Luke’s honor. Today, I have more meadow, a lot less lawn, and can accomplish the task with a tank of gas and one free hour – versus 5 hours last summer!

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When I met Luke, I was 22 – only 4 years out from having grown up in a two-room cabin (with no running water or electricity), outside of Butte, MT. I’d grown up hauling & chopping wood on a daily basis, chopping a hole in the creek ice to get water over the winter, hauling 5-gallon buckets of water to the house, showering outside (when I wasn’t at a friends’), and using an outhouse. I was tough enough. Likely could have been tougher, but clearly tough enough.

My sister was 12 when I first brought Luke to the cabin. She and my “unreal” dad promptly made up a song for him – “Icky the Icthiologist”. He saw, knew, and embraced my life & family for 15 years – spoiling me along the way.

Now Mark, my unreal dad, is gone as of February 2016, and the cabin is forever quieter for his lack of presence. Luke is gone, unbelievably before that – and with them both, so many shared memories, stories, and adventures. The end of a chapter. The end of an era.

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The layout of the ceremony spoke to the task at hand. There was an ascension to the area of the ceremony. A large, sloped field allowed for contemplation of the suffering involved with death before funneling everyone through an arch: realization and acceptance of this new reality sans Luke. Somehow it sunk in a little deeper and felt more like an actual fact with group recognition. We continued to meander, up a sweet and winding Aspen path to a sun-filled meadow lined in haybale pews and sweet live music drifting on lazy October beams.

People gathered. So many friends. It was overwhelming in the best of ways. Amazing friends and family took the mic and spoke of our beloved. I wish that I had words at the time – any words, strength at least enough to get up before you all and look out on the field of your shining faces and thank you. I wanted to, but also couldn’t. I was empty – completely worn out.

After the beautiful ceremony, we descended back to reality. Slowly, making our way across the sloping field after siphoning through the arch – again, accepting as we step through the arch that we’ve altogether recognized the death of a person, the passing of a spirit. Walking across the field we have time to take it all in. As is with life, some of us have lingered and taken longer to cross this field than others, but all of us must land firmly in the grips of the gathering – food, drink, and community being necessary and positive realities.

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Certainly and unsurprisingly, I’ve been one of the stragglers across the field. Never eager for change of this sort and wondering if I couldn’t somehow singlehandedly keep the past alive. Clearly, it’s not possible. As they say, change is the only constant – like it, or not.

Two years later, the floors of our home are redone (and re-scratched), and the walls are all finally painted – some a new color. I have a new job. Elsa is in first grade and in a Spanish Immersion program. So much has changed – as is inevitable. 

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I have only recently crossed, or more honestly, am in the process of crossing the threshold. Hoping for the future – I know not what, but hoping nonetheless. Knowing we met for good reason and lived our given time to the best of our abilities. Remembering all the good times – so many wonderful adventures with so many great people. I’m so entirely grateful for what we each brought to the table and for the communities our union brought into each of our lives. I’m even more proud and know Luke is too, how well these communities have continued to carry both Elsa and I, as we ebb and flow in the aftermath of this reality – one slow river bend at a time. 

 

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[vc_row][vc_column][vc_column_text]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?

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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.

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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.

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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.

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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.

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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.

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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?!

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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.

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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.

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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.

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Lukas Peter Neraas lived large and fast over the course of 39 years. He loved life, exploring the natural world, mountain tops, friends, and family. Luke died at home, surrounded by family, on Saturday, September 26, 2015, after striving against an aggressive brain cancer – glioblastoma – for over 14 months.

Born on March 31, 1976, to John & Jane Neraas, Luke spent his youth in Montana before moving to Portland, OR. Luke played Olympic Development Soccer and graduated from Wilson High School in 1994. With the lure of Montana established in his youth, Luke went on to attend the University of Montana, Missoula, graduating with a B.S. in Wildlife Biology in 2001. He continued to spend a decade thriving in the environs of the Wild Trout & Salmon Genetics Lab, honing his fierce telemark skills on the steep slopes of Snowbowl, running the many accessible rivers nearby, and playing with friends in Missoula.

In the spring of 2001, at age 25, Luke met and quickly joined forces with Claire Vitucci. A year later, they drove his VW Vanagon north to work as sea kayak guides in Seward, Alaska. It was an adventure in every sense. In 2005 Luke steered them north again. This time to Juneau, AK to obtain his master’s in Fisheries at the University of Alaska, SE.

In 2008, Luke & Claire left Alaska and landed in the Tetons, where they’d spent a few summers in previous years & had family. Luke immediately found work with Lucey Electric. He went on to get his Journeyman’s Electrician License and excel in all aspects of this vocation. He greatly enjoyed his work, the crew he worked with, and requisite powder mornings.

On September 27th, 2008 Luke and Claire married on the banks of the Big Hole river outside of Melrose, MT. In 2011, they happily welcomed their daughter, Elsa Bird Neraas. Luke greatly enjoyed skiing, hunting, fishing, big trees, all things outdoors and spending time with his family & friends. He had a scientific mind, a loyal and giving heart, a generous hand – to any friend in need, and a willing foot to join or instigate any adventure – none too small or big. He was always happy if he was skiing, no matter the conditions. He would vote to extend a good thing every time. He loved life.

On July 21, 2014 Luke was incapacitated with a severe headache. A brain biopsy, pathology, and rapid phone calls landed the family at UCSF in San Francisco where Luke was admitted for emergent brain surgery. Over the course of the next year, Luke would undergo three resections (major open brain surgeries) and one CED Infusion (chemo fed through catheter directly to the tumor) in San Francisco. He did all with unwavering courage, integrity, willingness, and optimism. In the end, his brain was forced to succumb to swelling associated with the above surgeries, radiation and tumor growth.

Luke is survived by his beloved wife, Claire and their daughter, Elsa Bird; his loving parents, John & Jane Neraas of Butte, MT; his devoted sister, Anna Neraas & her generous family; many aunts and uncles; and a multitude of friends. He will be forever held in the hearts of all those who crossed his path and especially those of his family and friends. He was a generous man who loved without measure and who will be immeasurably missed.

There will be a celebration of Luke’s life at the Linn Canyon Ranch at 3:00 on October 24, 2015. See more information on upcoming services here and on the Facebook event page.

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When trying to find a single photo for the paper, it felt like I was searching in vain for one without a hat or sunglasses and with a clean shaven chin & combed hair. My contact at the paper sweetly commented: “Well, that was just the type of man he was and what you fell in love with, right?”

That about sums it up. It can be hard to have the above when you’re up for an adventure any minute.
I miss this man:
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Lukas Neraas
March 31, 1976 — September 26, 2015

There will be a celebration of Luke’s life at 3:00 pm on Saturday, October 24, 2015 at the Linn Canyon Ranch in Victor, Idaho.

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Saturday, October 24, 2015
Linn Canyon Ranch

Schedule:

• 2:00 – 2:30 pm – Arrive, Park & Walk to Venue
• 3:00 pm – Service & Speakers
• 4:00 pm – Hors d’oeuvres & Stories
• 5:00 pm – Dinner

Please bring a stick to add to the fire (symbolic), a stone to add to a cairn (that will reside with Claire & Elsa), a side dish to share (if possible), and plenty of warm clothes (for you & yours!).

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Please dress to be outside no matter the weather. There will be a tent and a fire, but the service will be away from both if the weather is at all reasonable. Blankets may serve you well, in addition to hats, gloves and rain gear – just in case.

There will also be a children’s tent with activities. Please note that this is an awesome opportunity to play, but not a babysitting service. Many thanks to The Learning Academy & volunteers for providing activities for the kiddos.

More information, pertinent details, volunteer opportunities, and more on the Facebook Event Page.

Wondering how you can help? Have something you would like to offer to the event? Need other logistic questions answered?
Email: celebratelukeneraas@gmail.com

•••Some donated lodging options exist. Please email celebratelukeneraas@gmail.com to coordinate.•••

Thank you!

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In addition to plenty of warm layers, if you have room before you set off on your journey to the Tetons or the Linn Ranch, please bring a stick & stone from your locale.

We’ll have some blue & green fabric strips available that you can spend some time attaching to your stick, if you so choose. Blue for sky/spirit; green for earth/body – also Luke’s favorite colors. The point is to spend some time with your stick, give it some good energy, love & thought. Then, sometime during the evening, add your stick, with a handful of flower petals, sage & juniper (available on site) to the fire. With no forwarding address, we’ll send our love for Luke skyward on the wings of the fire. Luke loved trees, wood & fire.

For Claire & Elsa, a cairn will be erected at their home with the rocks you bring. So many friends, from near and far, have held their family throughout this steep, long and trying path in spite and despite it’s certain, and unfathomable end. This cairn will serve as beacon of that support. Hard evidence in the certain lonely months ahead that there are friends to lean on at any moment.

• There will be extra sticks on site – just in case.

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Getting to Teton Valley:

Nearby airports include:

• Jackson, WY: 1 hour
• Idaho Falls, ID: 1 hour 15 min.
• Bozeman, MT: 3 hours
• Salt Lake, UT: 5 hours

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Accommodations

Please note when making reservations that Teton Valley consists primarily of 3 towns: Victor, Driggs, & Tetonia. Each are approximately 8 miles apart. The venue for the event is between Driggs & Victor.

Driggs:

• Pines Motel
• Teton Valley Cabins
• Super 8

Victor:

• Teton Valley Motel

B&B’s

• The Fox Creek Inn
• The Lone Elk Lodge

Tetonia:

• Teton Peaks Lodge

Vacation Rentals/Homes/Condos

[vc_row][vc_column][vc_column_text]Recovering from the stroke that Luke had right before surgery, meant moving to St. Mary’s for rehabilitation therapy. It was just on there other side of Golden Gate Park. Therapy sessions were packed and Luke improved daily. From the parallel bars, to a walker, to a cane, to a staff. It was amazing what could be accomplished in a day. I believed, without doubt, that he’d walk out of the hospital when the time came. They had insurance approval to keep him until Sept. 10, but were vying for the 17th if he continued to improve at his given pace. He pushed the therapists to push him – three more steps, to the end of the room, etc. There were 3+ hours of therapy approximately 6 days a week. With occupational, physical and speech therapists coming & going, hospital meal deliveries, medicine dispersals, vitals & mandatory rest – the days were busy enough.

My dad came to help with Elsa and bring her home to be in Willa’s care (my sister). Elsa knew where we were, what we were doing and was clearly ready to move on and be home amongst her people, things and schedule. Anna, Luke’s sister, needed to return to her family, work and moving to a new town. On Friday, August 21st, everyone headed their separate ways. I stayed with Luke and found wonderful lodging with Family Link (much like a McDonald House for adults). It was less than 2 miles from the hospital & Golden Gate park. Unbelievably my morning’s temporary commute took me from Casto St. (one block from the Castro Theatre), along a good distance of Haight St. and through the panhandle of Golden Gate Park – a commute that I could never have anticipated as a youth growing up in a two room cabin in rural Montana, nor even as an adult living life in the Tetons. The distance assured I got a walk in twice a day and included a hill to traverse both ways.

The first day of rehab was one week after surgery and full of assessments for physical, occupational and speech therapists – setting the baseline. You can imagine how the physical and occupational assessments went; Luke eager to please, happy to have physical goals, willing across the board to do the work to get everything back, to walk again.

I found the speech assessment much more difficult. As it was an assessment, they wanted little of my input or interpretation. A pen, a piece of paper and a penny were laid before Luke. He was asked to point to each individually – no problem. Then he was asked to use the pen to point to the paper. Total stumper. I had to interject that I didn’t think he understood that he could interact with the objects. Once we cleared that up, he caught on to the series of questions and stepped it up. However, since they were assessing things, they’d switch up the line of questioning every 5-10 questions. Every time it took Luke a few questions to get the hang of the new train of inquisition, the new pattern. Several questions into a yes/no portion, the following question was posed: Does paper burn in fire? Luke responded with an unequivocal “No.”

He did get this question correct when posed coincidentally again so many days later. Nevertheless, it was also completely disconcerting. Since June, Luke has had issues with communication and word finding – aphasia, they call it – due to a stroke. I have given him the benefit of the doubt cognitively for months, with good reason. He was there. I have also tried to anticipate the words he might be looking for, or the potential object of his desire, ahead of time to limit frustration on everyone’s part. In this way, I hadn’t readily recognized how far off course we’d gotten both gradually over time and with the intensification of the latest stroke on August 12th.

I liken it to visiting the pediatrician when Elsa was little.
How many words does she know?
About a hundred.
Can a stranger clearly understand her?
Of course!
…. Later, listening as a stranger might, I feel like I might have been a little overzealous in my reporting – clearly no bias.

Nausea crept in; retrospectively one the first signs that things are likely amiss during the last year. There was a day where he couldn’t participate in any of his morning therapy. There was a moment of real confusion. There was an episode of rocking him with his wheel chair – rolling him back and forth in his narrow room, by request, as he held his bucket and breathed heavily through a nauseous moment. There remains the fact that Luke is one of the strongest people I know, and the amount of effort it takes him to stand up or lift his right leg is incredible. That he requires rests between transitions and is primarily bound to a wheelchair is heartbreaking.

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Friday – August 28, 2015:

It’s been 2.5 weeks since the surgery; I had been trying to raise alarm about Luke’s growing difficulties with his left eye all day without much result. Paired with nausea over the preceding days and two other disconcerting moments the day before, I felt like things were changing, which often isn’t good in our current realm. Finally I snapped photos and consulted with Luke’s UCSF oncology & surgery teams via phone & email. The requisite doctor came by late in the day, finally on board with my rising distress after assessing Luke’s dilated left pupil, how clearly swollen it was and its complete lack of motion. Mostly Luke’s eyelid remains closed, regardless of the patch he’s been wearing to avoid recent double vision caused by swollen optic nerves that cropped up a week after the surgery and a day after we got to Rehab. Originally each eye worked well individually, but the left eye has significantly suffered from the effects of swelling and is no longer functioning normally.

Suddenly, around 8:30 pm the nurse came in to transport Luke to a CT scan. Hmm… I signed off with Luke given the hour and my accrued lack of sleep. I made my way home – hoping it was somehow routine, but knowing full well it wasn’t. As I walked and neared my domicile, I was considering how macro our current life is; how anything could change at any minute; literally – anything. Literally, any minute.

My phone rang.

CT Results: Luke’s brain is so swollen that it’s caused what they refer to as a brain shift. The left side is so swollen that it’s pushed his entire brain off center. It’s not good.

There are few options – only the standard of care – CCNU + Avastin. Neither are a golden ticket. CCNU comes with 2 days of nausea and 2 weeks of fatigue every 6 weeks. It can only be taken for 9 months maximum. Avastin has the possibility of reducing swelling, but may or may not work. It also carries a risk of stroke. Pathology from the most recent surgery shows that his glioblastoma has morphed into something yet more aggressive – gliosarcoma.

After hearing from the doctor, I cried, shouted, stomped my feet, kicked and generally had a temper tantrum before imparting the news to Luke’s sister. It was late. It was heartbreaking. I was almost home… I turned around and made my way back to the hospital to check in with Luke.

En route I aimed for Walgreens to print out some photos I wanted to share with Luke – an errand I had been meaning to do for a few days – no time like the present. It felt right to bring them. A distraction. A million good memories. A life so well lived.

 

Already on my way, I realized that I could have likely made my way by the Grateful Dead’s house – one of Luke’s favorite local icons – except that I hadn’t been paying attention to the streets. At that moment I paused, looked up and across the street – I was opposite 710 Ashberry, the very house I was looking for. At the top of that block I paused to look back down the hill and take in the serendipitous moment. A prominent top-floor appartment window caught my eye. It’s stark white walls held only one display above the mantle: an old pair of wooden skis & poles mounted in the classic X. A curious SF centerpiece – I thought, but not when I considered just how close Luke’s soul was just then.

I hurried on my errand and returned to Luke’s side. He was happy and surprised to see me. He was also wide awake due to the extra 8 mg steroids he was given at 10:00 pm per orders after the CT scan. To reduce the swelling they raised his dose from 16 mg/day to 24 mg/day when only days ago he was on a steroid taper.

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On Saturday, after reviewing the horror of the CT scans firsthand with the weekend doctor on call, I later spoke with our oncologist in a very real way.

I was running a quick errand to get some lunch & snacks for Luke, when her call came in – sweetly making time for us on a Saturday, to call and help solidify the crumbling tower of options – or lack thereof.

If we make getting home our main priority and shoot to make the trip on Tuesday – is it possible? Suggested?

Whether and when we could get home or not, became a question.

I totally lost my everything on Haight Street. As it turns out, one of the more privately public locations this could have happened. Very few people noticed as I clung to the fence of a school yard discussing the future & the past, deliberating questions, prioritizing, weighing options…. – where were the options? Feeling my feet let go. shaking. sobbing. keeping it together. watching things fall. falling.

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Is his left pupil still dilated?

Affirmative.

If eyes are the window to the soul?
Then Luke’s soul must be that much closer.

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Home being the new priority, we booked flights, luckily finding a direct connection from SFO to Jackson, WY on the eve of Tuesday, Sept. 1st. This gave us Monday to work through the bureaucracy of being discharged pre-emtively, time to get our ducks lined up on the receiving end, last minute tips from the therapists, etc. and time for Luke to stabilize at the larger steroid dosage.

Monday evening our oncologist thoughtfully came by with her husband to send us off – clearly not something she does for all her patients. It was special and really nice. Everything about this disease and situation is so layered and complicated, it felt good to have the support of our team and advisors as we made the difficult decision to split for home. Finding out that her father-in-law passed away of the same cancer, made all of our experiences and connections that much more vibrant.

Our brother-in-law, Chase, helpfully arrived to aide with the flight and transition. It was good that he did. Just hours before our planned departure the oncologist swung by to make clear after reviewing the CT scan and thinking about it overnight that there was a small, but very real risk, that Luke might not make the plane flight given the change in pressure and the severe swelling in his head. That the plan was to double the day’s steroid dose – 48 mg of dexamethasone with 24 mg dispersed at his lunch time dose; that it was a relatively short (1.5 hours), direct flight; that a two day drive didn’t seem overly feasible in his given condition; that there was a serendipitously organized group of Missoulians gathered in Luke’s honor at the very time of our flight devotedly keeping him in mind; that it felt like now or never; that I know how strong Luke is – all weighed into the necessary split second decision to go for it.

It was totally scary, totally unknown. There were signs to look for, ready steroids to give if need be. There was a vein along his scar that steadily grew darker and extended upward – it felt like a barometer of sorts. It was not one of the given signs… A portion of it began to swell slightly. Then the plane started to descend. We were close. We were going to make it. Of course after landing safely we still had to go over 8,431′ Teton Pass, approx. the same pressure as that of the plane…

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Thankfully, we made it home by 10:00 pm.  Happy to be back in the silhouette of the Teton range.

We wheeled Luke in and negotiated our happily single story home with the large wheelchair. Elsa came out for hugs and love from both her folks. After a 2 week hiatus, everyone got to sleep in their own beds and near one another. Luke had been in the hospital for 3 weeks.

The next day hospice arrived. We signed paperwork. Continuity of care given the limited timeline we were facing seemed important along with immediate caregiving. Luke was somewhat reluctant. It was a hard conversation, followed by real questions. Luke was forthright in his answers despite his limited communication and mostly yes/no answers.

Thursday the hospice nurse, a friend of the family, came by to meet and assess Luke. All was relatively well. She went to work gathering the necessary accessories we were going to need and that would work best in our home – shower chair, walker, transport wheelchair to fit through the doors, etc.

Friday the aide came by for an expertly executed shower, shave and exercises. Friends came by en route to a wedding. Together we got Luke outside to watch the kids jump on the tramp and enjoy the sun. It did’t last terribly long. To get him back, we had him stand up and step up the back stoop and walk, with help, into the kitchen. Bravo – but things weren’t really that good.

Saturday his parents came down from Butte, MT. Luke’s days included getting up around 6:30 am, scooting to the edge of the bed. Getting dressed with my help. Grunting disapproval when he didn’t care for a particular pair of pants, socks or shirt proposed for his ensemble. His hat was a must. Eyepatch preferred. Ski socks only.

Sunday night Luke’s cousin came late. My sister helped watch Luke when I ran Elsa to school or briefly stopped by work to keep my post afloat. Friends passed through. Parents returned.

Sunday, September 13th, after finishing breakfast in the kitchen as per usual, Luke wanted to go back to bed. Little did we know that it would be the last time he was really up and about. Over the weekend his core strength had melted. It was difficult for him to move into and out of bed or sit up and adjust pillows (only one arm, remember). He was not comfortable. On Monday morning’s visit from the hospice nurse, a hospital bed was suggested. While I couldn’t commit immediately, before the morning was out, I texted my consent. It was delivered later that afternoon. My bed shifted to an Aire mattress atop our stacked boxsprings and now doubles as a day bed for visitors. Luke is definitively more comfortable.

There are some good days, full of rally. There are some days where it seems like he’s so far away, trapped in both a body and likely a mind that are barely his. There are distinct moments of Luke. There are distinct moments of loss. There are few words on his part. The labor of death is not for the feint of heart.

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Last week Elsa broke her arm (plastic fracture – the bone actually bent instead of breaking)… then I lost my phone. For at least three days, I was the only one in the house that could put on socks, and none of us could return a call. You have to laugh, as you cry. It’s all just too ridiculous.

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As a family, we are often approached by community members who want to share their love and support, which is amazing, if occasionally overwhelming. Everyone has a different approach in communicating about an experience as grave as ours; however, if I happen to run into you, may I suggest refraining from asking “How are you doing?” – especially if I haven’t seen you in a while. “How are you?” is open ended, spans months, and to honestly answer that question, I would likely need to sit down with you for at least an hour with a handkerchief or 10. Our situation is so complex. However, I can more honestly & specifically answer a question about today. It might have been a great day or a tough one but at least I can tell you about it truthfully in a few sentences. “How are you today?” is doable. “How are you?” is overwhelming. Often times, I honestly don’t know.

Also, while we deeply appreciate your sincere thoughts and gestures, being so steeped in this nightmare, we also welcome hearing about something funny, sweet, difficult or mundane going on in your own life. We promise to listen, celebrate, or sympathize with you. Life is complicated – we know – full of issues that create emotions, take up thought and demand solutions. Ours, in particular, takes up a lot of energy right now, but it doesn’t mean others are not valid.*

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We are blessed with an amazing community – locally, regionally and beyond – the landscape & history of our friendships & extended family is amazingly and happily rich. Our community is like no other.  We know by the generosity applied in both actions and words over the past year that people care tremendously.

Thank you for honoring us, stepping in at our darkest hours and continuing to hold us up as our lives are redefined yet again in this long, tumultuous and complicated year. We are setting our sights on a new goal – one we’ll never be ready for, but one we understand to be the next unfathomable, necessary step. We’ll walk with Luke and support him as best we can until our paths will inevitably have to part, as he crosses the line and makes his way to the summit of the next unknown, but surely majestic, mountain top. We can only hope that this stage of suffering is short, though we’re in no hurry to say our final good-byes.

As with this entire journey, things continue to be incredibly complicated and absolutely unimaginable – even to us – and we’re living it. We can’t thank you enough for helping to carry us along this twisted path to it’s bitter end. We surely would have tripped and fallen before now without your unwavering support, consideration and generosity across all fronts.

With love, light, and one foot in front of the other,

C + L + EB

*Sentiments echoed from a friend in a unsettlingly similar situation.

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[vc_row][vc_column][vc_column_text]July 21st marked one year since we walked Luke into the local clinic to check up on an excrutiating headache. It has been a tumultuous year since that unassuming visit. We recognized & thought about the date, but we didn’t really mark the occasion. There seemed like little to celebrate since Luke has not been feeling well.

A year ago brain cancer was a distant concept; glioblastoma – never heard of it. Now we know more about this disease than we ever wanted; how many are effected, the steep statistics, treatment options & the severity of this cancer. We hear it in the news. We know others facing the same diagnosis. All of it is heartbreaking and completely abysmal.

While there have been lulls, the last few months have been riddled with seizures, the last of which came with increased frequency and intensity – affecting more of Luke’s body, specifically his right hand. Even though his recoveries are generally quick, it can be unsettling to say the least. He’s also had a recurrence of small headaches, fatigue and nausea – none of which bode well.

Because of the recent health issues, Luke’s scheduled MRI (every 2 months) was moved up one week to Monday, August 3rd. Following UCSF’s reception of the scan on Wednesday, we received a call with an official read by one of our oncologist’s peers – the news was not good. There are few options; the chemo options they can offer carry a 50% risk/benefit ratio to be re-reviewed when our oncologist returns from vacation. Surgery is off the table. The doctor we spoke with in our oncologist’s stead was forthright – in summery, he gave Luke approx. 4-6 months.

While nothing is written in stone and I don’t like to repeat these numbers out loud or otherwise, I do believe it’s important to share the gravity of our position with those that care about Luke. There are many that deserve this news delivered in person, but I hope you’ll understand that this is all I have energy for. It’s totally heartbreaking and unfathomable despite the fair warning of what we’ve been up against.

It’s nearly impossible to watch your person slowly discombobulate – someone so strong, so intelligent, so caring, so generous, so adventurous – that you chose to commit and spend your life with them. To watch someone you planned to grow old with slowing down beyond repair before your very eyes and clearly before their time.

We digested this news as best we could. It was practically impossible. It was hard. We took a long drive on a dirt road in the mountains – not unlike one of our first dates and yet the polar opposite. We drove by & re-documented the remnants of a ginormous log, evidenced below, that Luke cut up and stoked our fire with 4 years ago. I inadvertently talked about local hospice options with a family friend, as recommended to us during the oncologist’s call. We tried to hold it all together. We told our families. We told Elsa.
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This whole thing is impossible. It’s hard to believe this is happening at all. It’s hard for people to know what to say to us and it’s sometimes hard for us to know what to say in return. Luke’s running motto, given his limited communication levels and his ever upbeat attitude: “It is what is.” – which pretty well sums it up – as much as I wish I could alter this reality and assume another path for him and for us.

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Before I could round up pictures & post the devastating news above… Luke’s assigned oncologist returned from her vacation. One week after the MRI, on August 10th, just after 4:00 pm we received a call that spun us at least 720 degrees. Dr. Clarke & Luke’s surgeon, Dr. Berger (a renowned rockstar in his field), reviewed the MRI and decided that surgery was back on the table. Apparently the 3 separate areas of tumor grew together in such a way that made removing the central mass & it’s tangents possible when paired and weighed with Luke’s strength, drive and history.

This was incredible news and goes to show how rapport and advocacy for oneself in the medical realm can equate to real differences in the way one might be treated and in medical recommendations. Hard to believe these factors can have that much sway; however, there was a catch… surgery was emergent, if we were game, and could we be there (in San Francisco) tomorrow? Oofta.

With nary a thought – it really was the only option on the table – wheels went into high gear: airline tickets, lodging & packing in a matter of hours. A few hours of sleep and then up at 4:00 am to head to Salt Lake to catch a plane. Luke’s sister, Anna, ever the angel, dropped everything to meet, shuttle and support us in this newest unexpected turn. We got Luke checked in to the hospital as soon as possible, but closer to 4:00 pm than the requested 10:00 am… It was the best we could do and relatively impressive given the extremely short notice.

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The next day, on August 12, I arrived at 7:30 to catch Luke in pre-op for a kiss and send off. Unfortunately I found that he’d already headed to OR, which was unusual. Luckily the gal behind the counter took pity on me and made a call to approve my seeing him behind the double doors. Dr. Berger sweetly obliged. I was quickly given a bunny suit, slippers, a hairnet, a bag for my purse and ushered in. Given the speed and imposition of it all, I didn’t really have time to take it all in, but rather was able to check in briefly with Luke, give him a kiss and a few words of encouragement. It was then I learned that his arm wasn’t responding or moving.

Recent seizures have scarily been affecting his right hand; however, the recovery each time has been swift: 3-5 minutes to general recovery with some lingering weakness. It was highly unusual that it would not have recovered in over 2 hours, as I gleaned its affects were found sometime in the 5:00 am hour…

Surgery began around 8:00 am with hourly calls keeping me abreast of their progress. The 5 hour surgery went according to plan and Dr. Berger felt like he’d gotten the majority of the tumor & its tangents with the resection. He expected a quick and full recovery when we met briefly after the surgery.

I saw Luke in the neuro ICU just before 2:00 pm. He looked good – all things considering. He could lightly wiggle the fingers of his right hand and gently squeeze my hand with his. There was room for this to worsen with increased swelling 48-72 hours after surgery. It did.

The day after the surgery his right arm was flaccid. His right leg also showed great signs of weakness… Unlike the previous surgeries where he’s practically waltzed out of the ICU doing tree poses, this time it took a lot to walk 15 feet in an advanced walker with the support and guidance of a physical therapist the next day. It was hard on a multitude of levels.

Eventually he moved down to the 8th floor for further recovery, working with both PT and OT daily, if briefly. While he would usually be discharged 3 days after surgery, this time it was a week. At the week’s end he was still in no condition to travel or even be at home. The post-op MRI revealed that Luke had had a stroke just 2+ hours before the surgery.

He was transferred to an acute rehab facility on the opposite side of Golden Gate Park on August 18th. The next day there were physical, occupational and speech assessments to set the base line. These were generally hard for me to watch and some were definitively hard for Luke to complete.

He was then assigned a team that will primarily work with him on a daily basis with the exception of subs and weekend therapists. This will provide continuity & interdisciplinary communication regarding his needs and progress. There’s a good chance he’ll be here several weeks if he’s motivated and making headway. Given Luke’s propensity towards physical challenges, his upbeat demeanor in the face of what we’re up against and just being Luke, there’s no question he’ll work hard and happily – pushing the therapists to push him.

Already he’s befriended the floor (both therapists and nurses) with his sunny disposition, consistent  motivation and instant progress. Each day he’s growing stronger.

If you would like to send a post card, a picture, a memory or words of encouragement to Luke:

As always, our gratitude for your support is endless – as, it seems, is your support. We thank you from the bottom of our hearts. There was an amazing fundraiser in Swan Valley, 2 days before our departure, with a terrific turnout of our Montana friends, our employers and work-mates, friends and community members – thank you all for making the drive and making it such a successful event. Thank you to all whom have risen to the occasion on this long and twisted path. The woods may yet get darker and your light helps us see our way. Thank you.

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[vc_row][vc_column][vc_column_text]Mid-June we returned to the Bay Area for the much anticipated MRI – one month post chemo-infusion. Unfortunately the week preceding the trip did not bode well.

In truth, Luke has not really felt up to par since the May 15th infusion. The infused chemo was contained within the tumor and has since been metabolized (I’m told); however, according to the MRI, this treatment did not have any real effect on the tumor; which in fact grew in the month between the procedure and this latest MRI.

Four days before we were headed back to San Francisco Luke laid down around 6:00 pm – not totally unusual in his given condition, though I happened to ask if he was feeling okay?
“Good. In fact great,” he replied.
“Are you tired?” I asked.
“No. I just feel good laying down right now.”
Fair enough, I thought, as I don’t usually question him when he lays down. However, an hour later he came into the kitchen, gripping his knees and looking at me with a foreign face. We both thought he’d had a stroke – the right side of his face had clearly fallen and he couldn’t speak.

Thankfully he rebounded quickly and literally within an hour we were having dinner and talking. UCSF was super responsive with a call back from our oncologist within 10 minutes on a Sunday evening. A steroid was added to his regime. While we’ve more or less been warned that things could change at any minute, neither of us was prepared for him to lay down for a simple nap and wake up so physically compromised.

The next morning he got ready for work. I was not sure that work was the proper course after the episode the night before, but played along until it happened again just before he was about to depart. Again UCSF was quick to respond and more meds were added. Not knowing what to do with him and needing to get EB to summer camp and theoretically myself to work, I decided to bring Luke with me to drop Elsa off.

After dropping Elsa off, as we were driving back towards downtown, he had another seizure. I had preemptively made a doctor’s appointment after the morning’s first seizure, but it wasn’t until 11:00. Since it was 9:00, I thought we’d go ahead and sneak in as walk-in’s to run everything by our local doctor and a second pair of eyes – not wanting to put Luke at any undue risk.

Unfortunately I stepped outside, to call in late to work, when someone came by to call on Luke. I’m sure he couldn’t begin to communicate why we were there given his limited vocabulary after the two recent seizures that morning; thus when I came back he’d already been ushered to the ER. From here they wanted him taken by ambulance to Idaho Falls for an MRI. Given San Francisco’s adamance regarding the upcoming MRI, I refused to do anything until the local doctors could talk to those at UCSF. Also, Luke’s oncologist had already given me instructions that morning on what to do if he had any more seizures… I just wanted some local support to second that. So after a few more seizures, a couple of Adivan, and several hours, I was finally able to bring Luke home.

Tuesday brought a few more seizures and more Adivan (anti-seizure med). The seizures are not particularly gripping, but they do cause the right side of his mouth/face to fall and afterwards his speech is impaired. Wednesday brought further recovery, just in time for Thursday’s planned departure to San Fran.

Because of the recent seizure activity we met with an epilepsy specialist at UCSF upon arrival. Anna, Luke’s sister and an angel, flew in ahead and picked us up with lunch in hand. The appointment ended with a scheduled introduction of a new seizure med, that will be followed with a taper of the old med….Fingers crossed.

This time we stayed in Los Gatos in order to spend some time with my grandparents and feel some of the warmth one associates with California. On Friday, my grandmother came into the city with us for the big appointment. She was incredibly helpful. She insisted on watching EB solo and sending Anna up to join the meeting when the time came. It was invaluable to have Anna there as a sister and another set of family ears in the room. The news was unimaginable.

In addition to the the infused tumor’s continued growth; there are two additional small tumors on the opposite side of the surgical cavity. Surgery is currently off the table.

Devastating news across the board.

There were tears, questions, horror, shock, hugs, disbelief. Then there was just the fact that it was – and that’s what we were sent away with… That and proof that there had been a small stroke in the last few days, though she suspected it had been more recently. The location of the stroke could affect his word finding abilities; which have clearly been crushed by the week’s raucous activity on his brain.

Because of the treatment’s failure, Luke is out of the clinical trial study and we are no longer beholden to scheduled visits to UCSF at this time, though they will continue to be Luke’s main doctors from afar and we talk to them often. The only thing they’re currently offering, given the recent stroke, is CCNU, a chemo pill taken every 6 weeks. A person can only have ~9 months worth in their lifetime. It has a 20% effectiveness rate of slowing tumor growth and comes with 2 days of nausea and two weeks of fatigue with each dose. We’re hesitant to make him feel worse when he already hasn’t felt well – it seems like such a slippery slope.

CCNU is usually paired with Avastin (chemo-drip every 2 weeks), which has a 40% effectiveness rate – together they give a whopping 60% chance of slowing things down. This is a big number in GBM world and the “best” standard option available. However, Avastin comes with a small risk of stroke, which is why it’s not recommended at this time. Most clinical trials also have the caveat of being stroke-free for 6 months. Thus a pretty major road block on the traditional medical front.

We finished a whirlwind collision of sisters (mine & Luke’s) with my grandparents in California over a quick weekend and came home to process and reconfigure. We celebrated Swift’s 2nd birthday. We researched, made phone calls, appointments, processed, lived, loved, cried, held one another, ran together, went for a bike ride – we tried.

The next weekend brought us to a happily pre-planned trip to Montana for the weekend. We met friends for a horse-pack/backpacking trip in the Tobacco Roots. There were a slew of horses, mules and even a mini-pony for the kiddos, as well as a requisite pack of dogs. It was really fun to get up in the high country with good friends for a couple of nights.

Solstice brought us out of the mountains and off to the banks of Divide Creek and Fort Fouts for a celebratory eve. More Missoula friends met us there. We followed with a night at Luke’s folks in Butte and a quick breakfast with my mom before making our way home. Luke drove the entire way – something he couldn’t have done days earlier in California. He read a complicated book to Elsa successfully on Tuesday morning (6/23), the previous Tuesday one of her more complicated ABC books proved challenging enough. Progress, thus hope.

However, the days after we got home didn’t go well. Sitting with the news was too heartbreaking, too depressing. Also, it was time to apply for disability, which felt incredibly hard. Luke could barely communicate. He was disengaged, unmotivated & sad – rightfully so – additionally, he didn’t have the words to talk about it, even if he wanted to… So I put words in his mouth, try to interpret, try to talk and walk through the highly potential and potentially unknown of “this” as carefully and hopefully and realistically and wantonly as possible.

It’s impossible to see Luke so not himself. It’s impossible for Luke not to be able to do things to his full capability. It’s hard. He’s really been a champ – all things considered… He’s been incredibly calm and thankfully willing to try – the majority of the time.

We floated the S. Fork of the Snake. Luke sat in the Father’s Day chair at the back of the boat – taking it all in, but notably not fishing. He rowed a little. He needed specific directions. A woman came on Monday afternoon from Salt Lake. She brought a large suitcase of equipment with her. She walked us through Novocure, further shaved Luke’s head to the scalp and applied the electro magnetic arrays. Additionally, it comes with a 6 lb. backpack with battery power and/or a wall adapter that he’s supposed to be connected to at least 18 hours/day.

He was definitely not looking forward to this treatment, but I think the dread ended up being somewhat worse than the reality – though it’s a real commitment and clearly cumbersome. He spent most of the following week plugged in and rather personally restricted himself to bed and/or the house with a very low level of communication. Last Thursday morning (7/2), after his Wednesday afternoon’s acupuncture, he woke up and said, “I’m back!” I looked at him and thought – he kind of is!  Exhale.    Breathe.         Thank goodness.

Thankfully it’s mostly been an upswing since then – in fits and starts and slowly, but an upswing nonetheless. Over the weekend he seemed to have rebounded somewhat from last week’s low – emotional, physical and phycological. He’s thankfully re-engaging, re-motivating and re-activating. He caught some fish and found an antler shed on our annual 4th of July float on the Teton River – good signs.

Monday he walked a mile in 1/2 hour (an incredibly relaxed pace for Luke). Tuesday he weed-wacked, ran 3 miles (felt slow), stretched (a few minutes), and fish/floated a section of the Teton river with friends. Wednesday was acupuncture.

Communication comes and goes, but sometimes it’s fine and sometimes it’s completely absent… That it can be fine helps me believe that it could be fine again. Overall, I’d say things are improving, but better is becoming more and more relative…

We continue to ride the wave and hope we’re turning the tide. This is incredibly rough stuff. It’s been hard enough being sad, but it’s even harder to see Luke sad. We are working to inflate what we have as big as we can – just like we always have. Nothing is written in stone and miracles happen. We’re hoping our tactics gain purchase against this rotten disease.

We so appreciate everyone’s support – I’m super behind on Thank You’s, but please know that we so appreciate everyone’s efforts on Luke’s behalf and for our family during this crazy time. It’s all been incredibly helpful — Please keep the good vibes coming. There will be an MRI during the first part of August that will likely dictate the next steps.

Until then we hope and assume that him feeling better is another good sign. He’s starting a steroid taper and tapering off of one of the old seizure medicines as well.

We’re looking up at the base of an impossible mountain. Holding hands and putting one foot in front of the other.[/vc_column_text][/vc_column][/vc_row][vc_row full_width=”” full_height=”” content_placement=”middle” video_bg=”” video_bg_parallax=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vcex_image_grid grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4570,4568,4569,4567,4564,4563,4565,4587,4588,4631,4571,4566,4572,4573,4593,4594,4574,4596,4575,4576,4577,4590,4609,4591,4592,4579,4595,4608,4580,4607,4581,4633,4586,4582,4585,4583,4597,4603,4598,4599,4602,4632,4601,4600,4604,4605,4606,4634,4635,4636,4637,4638,4639,4640,4641,4642″][/vc_column][/vc_row]

[vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column_text]A week after we arrived home from the May 15th surgery, we returned to San Francisco for the 2 week infusion follow-up. There were no MRI’s. Simply a meeting with the oncologist, a quick physical and a blood draw. It was a quick trip. We left on Thursday, had appointments on the 29th and flew home at 6:00 am on Saturday. At one point in travel I dozed briefly, as I roused myself, I wondered whether we were coming or going and from where? Life is moving at lightning speed.

The trip did alleviate some outstanding worries and for that reason felt worth it. Luke has had some discouraging numbness in one thigh; however, the doctors believe this was due to a pinched nerve while he was out during his 4+ hour surgery. It seems to be recovering. The day before we headed to San Francisco he had an unusually nauseous moment, but likely due to moving too fast; he’d only gotten his foley catheter out the day before and was raring to go. He’s had more head pain and less energy lately, but both are explicable given that he had a round of steroids, came off a quick tapor of them, had 12 days of uncomfortable catheter-ville, quite a bit of travel and let’s remember, brain surgery. Anyone might be tired – Luke was too. Thankfully he rested.

Luke can feel something “going on up there.” It’s disconcerting at the least. In the past, his intuition has closely aligned to reality; however, this time we know something’s going on. I imagine a microscopic battle – chemo vs. cancer. I hope the chemo is causing the raucousness that is the cause of his discomfort and winning. It could of course be any number of things… the tumor could be growing, it could get worse before it gets better; it’s new technology, it’s a crazy diagnosis and it’s totally unknown. We are hopeful the coming June 12 MRI tells us more.

Truthfully he’s feeling better every day and went back to work Tuesday feeling good. We march on, one day at a time, knowing that we’ll know more soon… Until then, pictures are worth a thousand words. Here are a few more insights into our recent, more light-hearted adventures:[/vc_column_text][vcex_spacing size=”30px”][vc_single_image image=”4314″ border_color=”grey” img_link_large=”” img_link_target=”_self” alignment=”none” rounded_image=””][vc_column_text]Iao Valley

Iao Valley is home to the Needle, a steep, prominent point, used as a lookout in historic battles. A silver stream, full of luscious, deep pools flows out of the base of the valley and is obviously the locals’ favorite place to cool down. It’s also a state park with stairs that lead to a good viewing area of the Needle.

However, it’s a pretty short walk to the viewing point and easy enough to hop the fence and continue on what started out looking like a very reasonable trail. Unfortunately the jungle nature of the hike affords few view points until you reach the “top” – a high point in front of a cirque of steep green slopes. Very pretty. Pretty enough to carry your 4 year old piggy back 3+ miles in super muddy, slippery conditions… Verdict is still out, but we’re always up for an adventure. She definitely had the cleanest feet at the day’s end.[/vc_column_text][vcex_spacing size=”30px” class=”” visibility=””][vcex_image_grid grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4309,4317,4310,4312,4313,4491,4339,4490,4315,4492,4340,4493,4341″ unique_id=”Ioa Valley”][vcex_divider style=”solid” width=”100%” height=”1px” margin_top=”20px” margin_bottom=”20px” icon_color=”#000000″ icon_size=”14px”][/vc_column][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vcex_image_flexslider thumbnail_link=”none” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ caption=”true” animation=”slide” slideshow=”true” randomize=”false” control_nav=”true” control_thumbs=”false” direction_nav=”true” smooth_height=”true” slideshow_speed=”7000″ animation_speed=”600″ image_ids=”4329,4327″][vc_column_text]Haleakalā National Park (Volcano)

We ascended from our sea level home at the more reasonable time of 7:30 am – it’s suggested you catch the sunrise from the top of the volcano with a 4:30 am departure. I think we timed it just right, there were no buses and few people by the time we arrived; the next round of buses showed up as we were leaving. We also caught good weather and great views. Very fun to see snow from afar on the big island.

The spikey, silversword plant (pictured below) is singular to the top of this mountain and blooms once every 50 years before dying off. Very beautiful. In addition to a few viewing areas and trails, there is a nearby observatory on the mountain top that is touted as the 4th best viewing location in the world. The telescope can apparently monitor objects as small as a basketball 20,000 miles away.

At 10,023 feet it was quite the drive from sea level. We greatly enjoyed driving through that much elevation gain and looking back down on it. Well worth it.[/vc_column_text][vcex_spacing size=”30px” class=”” visibility=””][vcex_image_grid unique_id=”Volcano” grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4349,4354,4350,4328,4352,4355,4353,4426,4498″][vcex_divider style=”solid” width=”100%” height=”1px” color=”” margin_top=”20px” margin_bottom=”20px” icon_color=”#000″ icon_size=”14px”][/vc_column][/vc_row][vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vcex_image_flexslider thumbnail_link=”none” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ caption=”true” animation=”slide” slideshow=”true” randomize=”false” control_nav=”true” control_thumbs=”false” direction_nav=”true” smooth_height=”true” slideshow_speed=”7000″ animation_speed=”600″ image_ids=”4326″][vc_column_text]Blow Hole & Heart Hole

I could have spent an entire day here. There was a cliff-side maze, ocean-side lava ranging from red to black, a distinct blow hole and the elusive heart-shaped hole that Luke wanted dearly to find in a nearby cliff wall.

The 2nd half of the road was an adventure in itself – narrow, windy and steep with super ocean views all the way. We also passed through a historic Hawaiian village (panoramic above) that looked its part in location and otherwise. Very idealic.[/vc_column_text][vcex_spacing size=”30px” class=”” visibility=””][vcex_image_grid unique_id=”Volcano” grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4318,4325,4321,4320,4348,4322,4343,4482,4345,4344,4481,4346,4483,4484,4499,4501,4502″][vcex_divider style=”solid” width=”100%” height=”1px” color=”” margin_top=”20px” margin_bottom=”20px” icon_color=”#000″ icon_size=”14px”][/vc_column][/vc_row][vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vcex_spacing size=”30px” class=”” visibility=””][vc_single_image image=”4284″ border_color=”grey” img_link_large=”” img_link_target=”_self” alignment=”none” rounded_image=””][vc_column_text]Seaside at Baby Beach and Elsewhere

We somewhat belatedly checked out Baby Beach, which was too bad, because it was delightful and we greatly enjoyed it. We squoze quite a few visits there in our last days. We also splashed in a bombed out WWII bunker outside Pia – out of the wind and surprisingly delightful. The Buddhist Stupa in Pia was also especially touching for us. The Dali Lama had personally blessed it in 2007. I spent time in Nepal right after meeting Luke, in 2001, within days of the royal massacre. The country was engaging, beautiful, friendly and memorable. It was only later we learned of the devastation Nepal faced in an earthquake the day after we visited the Stupa and sent our prayers heavenward. So tragic. The world is indeed full of suffering…

On a more joyful note and a benefit to spending so much time waterside during this trip was that Elsa had some breakthrough swimming moments which were super fun to witness. Additionally, the snorkeling was all very national geographic, that is to say, pretty magical for this land-locked family.

Swimming with sea turtles is absolutely amazing. Even Elsa got a chance to experience their magic after she & her cousin practiced snorkeling poolside one day, the next day we took them out into the ocean. Elsa wasn’t out 4 minutes, bit her snorkel, looked down and boom, there was a turtle! It was awe-some in the way that she was done and wanted to go back to shore asap. They are big – especially when you’re little and not expecting them. Friendly as they are, they do take some getting used to – so glad we got the chance. It was totally amazing.[/vc_column_text][vcex_spacing size=”30px” class=”” visibility=””][vcex_image_grid unique_id=”Baby Beach” grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4437,4435,4436,4433,4428,4431,4430,4439,4438,4432,4286,4425,4405,4287,4271,4434,4441″][vcex_divider style=”solid” width=”100%” height=”1px” color=”” margin_top=”20px” margin_bottom=”20px” icon_color=”#000″ icon_size=”14px”][/vc_column][/vc_row][vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_video link=”https://youtu.be/m49JVfbTgLg”][vcex_spacing size=”30px” class=”” visibility=””][vc_column_text]Portland & San Francisco

We spent a quick day in Portland, but made good on it by visiting the Rose Garden, Sofie’s Island and the Cathedral Park. At the park we were mesmerized by a fellow blowing large and prolific bubbles. While we tried to keep the kids out of them for a while, it was just too difficult and understandingly tempting, eventually we broke down and let them chase bubbles to their hearts content. This made everyone’s hearts content as smiles, laughter and bubble popping ensued.

Luke & I took a quick trip to San Francisco by ourselves for the April 27th MRI, but returned with Elsa and Anna (Luke’s sister) in-tow for the May 15th surgery. The day after Luke was settled at home, I took Elsa down the hill to see the Bay to Breakers race that we’d been hearing so much about – the longest running race in the world (since 1912). It was started to improve the community’s spirit after the 1906 earthquake. Approx. 50,000 participants run 7 miles from the bay to the open ocean. It literally cuts the city in half for the day. We’d missed the Kenyans and other actual racers, but enjoyed a variety of costumes and likely a dozen naked men over the course of the hour we watched – apparently it’s legal for special events.

I brought Elsa home and Anna took her out again to go for a run. They went back to the course to check it out and found the mostly young and drinking crowd, now ambling the remaining distance. They took up the course and ran in the race – team denim with EB in her denim dress and Anna in her denim shirt. Perfect. Apparently Elsa felt the spirit of things and ran a good distance herself. Whenever she got out the stroller a “shark” that ended up running with them would chase her in fun. Anna thought Elsa really ran a mile or so of the 7 mile run. The next day Elsa barely caught herself as she got out of bed, she was so sore. Pretty cute.

We made it home and salvaged what was left of Luke’s hair into a mohawk for a few days. Fun while it lasted. Little did I ever know I’d be with a man with a mohawk…[/vc_column_text][vcex_spacing size=”30px” class=”” visibility=””][vcex_image_grid unique_id=”Baby Beach” grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4442,4443,4444,4408,4409,4400,4412,4401,4414,4417,4416,4415,4406,4419,4413,4402,4403,4404,4407,4422,4421,4424,4423″][/vc_column][/vc_row]

[vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column_text]Maui was marvelous – sun, snorkeling, sea turtles, family and fun.

The end of the trip meant coming home the hard reality of the follow-up oncology appointment and wether or not the suspicious spot was another growing tumor… Since we were slated to spin our wheels in Portland until the looming appointment date, it seemed well worth a quick call to a family friend who has a home on Maui. He very sweetly agreed to let us stay at his place and we gratefully opted to extend our trip a few days. This afforded us the opportunity to see and do a few more things on the island as a more mobile unit of three versus our previous family size of seven with Luke’s sister and family. We proceeded to hike Iao Valley, drive around the western half of the island, find the heart hole in the rock and blow hole (featured above), ascend the volcano and swim at Baby Beach.

Despite our best efforts, time slipped by and eventually transported us back to the mainland. The next day, brought us back to the airport for a quick trip to San Francisco, sans Elsa. Auntie offered to keep her for the two nights we’d be gone and it was decided that this made the most sense across the board. She was in good hands and we took to the unfettered travel better than we anticipated – so easy.

Exploring the city alone made us feel young and new again. We took the BART from the airport to as close to the hotel as possible and then walked everywhere, surely putting 7-10 miles in each day. Living in a hiking destination, I realized it had been ages since we’d done as much at home without our little one in tow. Life is funny that way – full of different chapters.

The weather was terrific – sunny and warm. We spent a lot of time in Golden Gate park and for a shot of art & culture, visited the de Young Museum and it’s awesome tower for great views. Luke was super excited when I pointed out a Rudy Autio (Missoula artist) piece in the first room we entered. An especially interactive museum guard made time to point out the intricacies of a nearby piece and suggested we get a photo with a $26 million work featuring a rainbow upstairs. It was also beautiful and we obliged.

Our 12:00 Monday appointment inevitably came around. Luke had an MRI, followed by a visit with our oncologist, Dr. Clarke, whom we’ve grown fond of despite the news she often has to deliver and patiently walk us through. The news was lackluster. Of the two spots, one they would still regard as likely scar tissue, the other growing tumor; however, it had not grown as much as she anticipated it might have in the month since the last scan…

We reviewed our few options, weighed them against the reality of execution of each and ended up opting first for a clinical trial. Another resection is possible, but designated as a recurrence this time, it’s time to try something else. I think everyone is hesitant to perform a 3rd major open brain surgery within 9 months when he is doing so well. The train of thought is that this is small, let’s try another angle first, knowing we have surgery as a fall-back.

Luke is the 5th patient in this particular phase 1 clinical trial. Phase 1 clinical trials typically focus on dosing. As such, Luke falls into the 2nd tier of dosing within this trial. This allots him 40 mg of chemo that will be dripped via CED (essentially a catheter through his head), directly into the center of the growing tumor. The infusion process will be monitored via MRI in real time so they can see which parts of the tumor the chemo is reaching.

We like that this chemo treatment will be administered directly to the point of bane and the non-invasive nature of the surgery. There should be few side-effects, unlike systemically administered chemo. On the downside it does nothing to prevent future tumors. Luke will due his part to stay true to an organic, gluten & sugar-free diet and maintain as many supplements as he can stand to help with prevention. Participation in the clinical trial also means committing to a 2 week follow-up, a 4 week follow-up and in-person MRI/visits every 2 months going forward for the foreseen future in San Fran (as Elsa’s calling it) – until something changes, which, we’re well aware, could happen at any time… So while the travel commitment is large, we felt that this was the overall best option for Luke and that we’ll do what we can to make it work.

We landed back in Portland to our nephew’s 2nd birthday and happily got to help him celebrate and see many of Luke’s sister’s friends and their growing kiddos – all of whom we have grown to know and love over the years. Soon we were home for a whirlwind two weeks, landing within 2 hours of Elsa’s first dance recital…back to it, as they say – before Luke’s May 15th surgery and dosing.

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Life is a whirlwind and we are a sum of its parts. A week after we made it home and a week before our planned return to San Francisco, Luke had some pre-seizure-esque activity at work. He started feeling nauseous, having chills, sweats, head to tow feelings and didn’t think he should drive – a clincher for me. Shane sweetly drove him over the pass and I promptly took him to the hospital where we met with our favorite local physician, Dr. Anna Gunderson. The idea of flu was quickly abated when he remembered noting a metallic taste a few times. His anti-seizure meds were upped and he was given a valium for mandatory shut-down. This was apparently necessary; he essentially slept for 40 plus hours, waking for small meals. It was a few days before he felt his chipper self again, but by Monday, he was back to work before our imminent Wednesday departure for his Friday surgery.

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We stayed is a super sweet air b&b not far from the hospital campus. It’s been great getting to know different parts of a city we’d only vaguely imagined visiting together one day. We really enjoy it, despite our reason for being here. This time we embraced public transportation. We had a smooth ride to our destination via bus, electric trains and old trollies, but inevitably, we took the long way home – Elsa fell asleep en route…

Luke’s sister swooped in and scooped Elsa before we met with the surgeon on Thursday morning, followed by another visit with our oncologist. Luke and I walked to the hospital early on Friday morning for his 6:00 am check-in. Everything is more wrote this time around. We just know how it’s going to go – or think we do…, at least we know that things like pre-op are on the 4th floor and you check-in at admissions, on the main level, to the left.

Pre-op is a busy place before the 7:30 am surgery start time, it quiets way down after that. Around 8:00 am Luke’s MRI room turned operating room was belatedly staged; he was wheeled away to the inevitable kissing corner, where it all becomes quite real. They sweetly call from the operating room every 1.5 hours or so and check-in to say that all’s going according to plan. It’s reassuring at the time. Around 1:00 pm, 5 hours since I left him, I got the call that he was in post-op and I could go see him. Not long after I arrived a resident and then the surgeon arrived for follow-up chats.

The surgery went mostly well. “There was some bleeding, when they first went in, must have clipped a vein, but it cleared right up. Unfortunately the tumor grew 40% in two weeks. They put all available chemo into the center of the growing tumor.” The original plan allotted some dosing to the scar tissue area – just in case; the scar tissue area had not grown. Since this is a phase 1 clinical trial, they have no way of knowing how much is enough… They know what they hope to see, but not what will actually transpire. I believe they would have added more chemo to the growing tumor if they could have, but again, they have no idea what the effect will be. It may be that this tumor will need to be watched even more closely. Time will tell.

The bad news – they nicked his prostrate when installing his foley catheter, standard procedure for surgery. They claimed he’d have to wear it through the weekend, but in truth, after wasting all of Monday determining the fact, he would have to wear it for 10+ days. Talk about injury to insult. He was probably most concerned with removing this sucker ASAP more than any other part of this procedure.  Bugger. He’s taken it mostly well, if pacing around the house is good for a person. It was thankfully easily removed today.

The surgery itself was very non-invasive, Luke requested only tylenol afterwards. There’s a single stitch where they went in and two where they were holding his head steady. He’s also sporting a super sweet mohawk and already off the steroid taper. No doubt he’ll be back to it as soon as he wakes up from a well deserved nap![/vc_column_text][/vc_column][/vc_row][vc_row full_width=”” parallax=”” parallax_image=”” id=”” visibility=”” css_animation=”” style=”” column_spacing=”” center_row=”” no_margins=”” tablet_fullwidth_cols=”” min_height=”” bg_color=”” bg_image=”” bg_style=”” parallax_style=”” parallax_direction=”” parallax_speed=”” parallax_mobile=”” video_bg=”” video_bg_overlay=”” video_bg_mp4=”” video_bg_webm=”” video_bg_ogv=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” margin_left=”” margin_right=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vc_column width=”1/1″ style=”” visibility=”” css_animation=”” typo_style=”” drop_shadow=”” bg_color=”” bg_image=”” bg_style=”” border_style=”” border_color=”” border_width=”” margin_top=”” margin_bottom=”” padding_top=”” padding_bottom=”” padding_left=”” padding_right=””][vcex_image_grid grid_style=”masonry” columns=”3″ title_type=”title” thumbnail_link=”lightbox” lightbox_caption=”true” custom_links_target=”_self” img_width=”9999″ img_height=”9999″ image_ids=”4260,4259,4270,4264,4261,4263,4262,4267,4294,4268,4265,4281,4278,4286,4285,4287,4283,4282,4289,4291,4293,4337,4334,4333,4301,4336,4295″][/vc_column][/vc_row]