[vc_row][vc_column width=”1/1″][vc_column_text]Life has been busy. Luke’s been back to work, on an annual yurt trip with his workmates, fishing, running, biking, skiing, racing – you name it. We had a good birthday weekend (the weekend between our b-days) in Montana with family and fun in mid-March. Though it was a fast trip, we packed in a good run for each of us, climbed the “M” with Elsa, hiked around the cabin and visited 3 parental households in 3 days – whirlwind style.

The next weekend we celebrated Luke’s 39th birthday with the JH Pole, Pedal, Paddle. He entered solo in the Men’s Rec division. Our friend, Ingrid, generously ventured down from Missoula to compete with me in the Women’s Team Rec Division. Luke’s sister, Anna, sweetly came from Portland to watch EB and offer much needed team support – there are a lot of transitions and a lot of accompanying gear to keep track of. While Luke participated in this race for the first time last year, this was my first year competing. The race consists of 10 packs of people racing the Women’s Downhill at Teton Village, followed by a 5k run (usually a 8k skate ski, when there’s snow), an 18 mile bike ride on the highway, through Jackson, WY, then a 9 mile paddle down the Hoback of the Snake River – 35 miles altogether.

I felt compelled to do the race in Luke’s honor and more or less with him; so while he trained by running 10 and 15 miles, I upped my occasional run to 5 miles and stepped up my pace – after all, he’s the one on chemo, right?! Our women’s team name was Lady Pain Neversweat – a great multifaceted name that simultaneously referred to the way we might feel along the way, while paying homage to our MT roots with the name of a mine in Butte; to cap it off, the initials are LPN – Luke Peter Neraas. Unfortunately there was an event beyond anyone’s control between our close start times that thoroughly uprooted our shuttle plan. Despite Ingrid waiting 10 minutes at the boat ramp before I could get there, she & I came in 2nd and Luke came in 4th in our respective divisions. It was way more fun than I expected.

Luke’s actual birthday falls on March 31st. He spent that Tuesday on the Teton river floating a good stretch and fishing. Luckily he got off before the wind got too aggressive later that afternoon. We had a mellow evening at home with moose tenderloin for dinner and frozen bananas dipped in cocoa & cinnamon for dessert. It was low-key, but delicious.

Thursday brought his 2nd MRI since the 2nd surgery. The news after the initial read was sighting of two 5mm points of concern. The MRI was overnighted to UCSF, but we were left in the land of limbo over the weekend. Not knowing what this might mean, but anticipating possible outcomes. Weighing how well he feels with this horribly aggressive diagnosis – glioblastoma multiforme IV. We’re so grateful that he’s feeling so well and know that has to bode well no matter the next step, but it’s still such a heavy load to carry on a day to day basis while we continue to try to live life to it’s fullest and plan for the future.

Given the unknown news, Luke opted to join EB and myself for a whirlwind trip south to Utah for a childhood friend’s baby-Q (shower), despite being on a round of chemo. We got in a quick visit with family en route to the event, which was great. Elsa fell asleep as we neared the party, so we also got to drive to the base of Snowbasin to investigate the terrain. It looked well worth a winter visit. A quick Easter morning brought us back on the road north, caravanning with a northward-bound friend via a pit-stop at Lava Hot Springs. Full circle in a matter of hours, really.

As fate would have it we realized that our caravanning friend was witness to our first encounter on Easter, 14 years ago. Rachel and I were skiing down, after hiking up Snowbowl post-season. Luke and his friend Shane were heading up. Through a row they had going that morning, Luke had promised to push Shane over if he caught him as they went up. The four of us met on a slope above the gully – inevitably crossing paths. Shane, whom I knew, stopped to say hello. Luke quickly gained him and promptly bowled him over before introducing himself. While this didn’t exactly leave me swooning, we serendipitously found ourselves at the same Easter dinner later that night, where he slyly got my number… So it was lovely to share a toast with Rachel on Easter, so many years later – who knew.

I didn’t anticipate meeting the man I’d be with so relatively young – me 22, he 25 – but I’m so glad we did. I’m so grateful for the places we’ve chosen to live, the friends we’ve made along the way, the adventures we’ve had and hope to have, and our growing girl. So very grateful.

The following Monday night our oncologist reached out to say that she believes one of the points of concern is likely scar tissue, the second point she believes could be growing tumor. She asked that we come to UCSF for a consultation on the 27th. This will include another MRI to determine whether the suspect spot is a growing tumor, followed by meetings with both the oncologist and surgeon to determine the next steps, if, in fact it is a tumor…

In the mean time, a twist of fate has sent us to Hawaii for a much needed change of venue and vacation with Luke’s sister and family. Luke’s sister and family have been with us every step of this journey – incredibly supportive across the board and this wonderful opportunity affords us quality time together in a relaxed atmosphere, rather than dealing with pre and post-surgery scenarios. Since airfare, lodging and rental car were covered by this incredibly sweet and generous offer by a distant family relation, it was impossible to deny and impossible not to enjoy.

Goes to show that one truly never knows what lies around the next bend in the river of life. So we’ll wait to know the next steps this journey will entail on a sunny beach in Maui – enjoying this moment and one another.

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A decade ago, Luke and I lived in Missoula, MT for a decade – also home to Snowbowl. Not only did we first meet on her slopes, but during the winter months a good piece of our lives revolved around the pitches of this mountain. There’s an undeniable, solid camaraderie amongst Snowbowl skiers. It takes two old, two-seater lifts and approximately a half hour to get to the top of the mountain – which might be considered a commitment by some. The top greets you with 2,900 vertical feet laid out in multiple ridges, treed meadows, and likely – bumps. Not necessarily for the faint of heart.

Then you meet the locals or become one yourself. You find your line(s) and you find your niche – there’s one for everyone. It’s a terrifically dynamic crew with a fierce appetite to ski – for many, in top condition and at top speeds.

Given it’s low elevation, it also means skiing in all conditions. February 2005, evidenced below, was a bonding year for those of us who continued to ski fields of ground between patches of snow. It was also a significant factor in spurring us northward to a chapter in Alaska, but not without sincere regret at leaving our Missoula family. We’ve kept in touch with the occasional visit (we certainly owe more), correspondence and through friends.

It’s amazing to feel like we could go back in a heartbeat and not have missed a beat. It’s a mountain, whose people and delicious food, I wish I could carry in my back pocket (and put in a more powdery location!). I get the feeling that they must still feel that way about us from their recent amazing outpouring of support with this mobile sign. Tear-jerkingly sweet. It even spent a few days featured prominently on the mountain’s live web cam.

To top it off – because we know Snowbowl knows how to raise the bar – they sent a signed banner of the message to boot. For real people. True love. We are awash in your outpouring of love and support. Thank you. We love you too! High Fives all around, says Luke.

In good news Luke’s been given the green light to fully resume activity!

In other news, the swelling that he’s been dealing with at his temple has been officially diagnosed as cerebrospinal fluid (CSF). “Any tear or hole in the membrane that surrounds the brain and spinal cord (dura) can allow the fluid that surrounds those organs to leak.” Apparently it’s relatively common after a second brain surgery and is the result of a surgical point popping.

It’s currently been deemed cosmetic, but has been, at minimum, disconcerting. The point of concern changes daily and has often been swollen, though doesn’t hurt. When it’s swollen tight Luke’s been taking it easy, trying to get the swelling to abide. Now that we finally know what it is, the plan is to wait it out for 4 – 6 weeks to see if it settles into a pattern or (hopefully) down. We’ve been in touch with Luke’s nutritionist, who dolled out a barrage of supplements to beat back the inflammation that looks to be the hole in his armor – according to his blood work. I like to think the body knows what to do and will get to healing, especially with the added nudge of the recommended supplements – fingers crossed. If not, we’ll be back in touch with the surgeon and may have to return to SF at some point.

In the meantime, Luke is simply relieved to be off of strict rest – phew! And he’s back at it across the board – working, skiing Teton Pass, biking & running when possible, working on the house & yard, and reminiscing a recent 3-day yurt trip. We’re carrying forward and hoping for the best. Elsa just turned 4 – which meant a good portion of the month was devoted to fun and loving activities for our big birthday girl. A sledding party, a new bike from her grandparents, a walk by the Teton River and some necessary time on the slopes – while the snow lasts…

It’s funny how children mark time. If not for her, it seems like it could have been just yesterday that we were coming home from the Last Run Inn after a beautiful day at the Bowl – our hearts and belly’s full with camaraderie, food and fun… and yet here we are – a decade later, during another low snow year, living in the Tetons with our growing girl and keeping Luke alive & well. Goes to show, you just never know.

We continue to be grateful for every chapter we get out of this sweet life together. A big thank you to all our friends for making each chapter so special, fulfilling, and lasting – we’re not into endings and we’re glad you’re not either. For every rough patch, like a low-snow day at Snowbowl, we’re simply drawn closer together for having gone out and given it our all.

• 2005 video footage featuring Luke & some other notorious Snowbowlians courtesy of Greg Seitz.

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[vc_row][vc_column][vc_column_text]The week before this all started in mid-July, we were vacationing in Montana with family.  At some point we found ourselves in Butte browsing at Murdocks. Luke found a must-have carhartt, burgundy wool, fleece-lined hat with both a brim and ear flaps. Not seasonally appropriate, but it did look like a perfect fall acquisition. He blissfully bought it.

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[vc_row][vc_column width=”1/1″][vc_column_text]Upon getting his stapes removed and making the 3 week mark of required rest, Luke immediately donned his favorite apparel – skis. He took EB out, either downhill or cross-country skiing, for 6 days straight. Granted, at nearly 4 years old, EB is not known for overly long ski sessions, but it was a great effort and lots of fun. She also made the perfect pacer for Luke in his early days of release.

After a quiet Christmas, we made our way north to Butte, MT to do our traditional parental circuit. This involves visiting three households and making sure everyone gets well-appointed time with the grandchild. It was very nice to see everyone and catch up, as brief as it was.

On December 29th, Luke began his first round of chemo since the original combined dose of radiation & chemo. This entailed twice the dose that he took before, daily for 5 days. He seemed relatively unaffected, but for one nauseous morning and a little fatigue – both likely due to over-exhaustion from late nights over the new year, hanging out with family, and generally over-doing it. In the future, we’ll likely stick closer to home during these weeks.

During our Montana visit Luke noticed cool temps at home, it’s not often that Tetonia is considerably colder than Butte. Unfortunately for us, this meant coming home Friday night to a frozen pipe and water pump. Luckily, I grew up without running water (or electricity), so I was relatively unfazed and immediately began melting snow, after retrieving the six gallons of water I have stored in the basement for just such emergencies. It also provided a great learning opportunity for EB to understand what it means to live without running water, and how to melt snow – which she did with gusto. With 48 hours of warmth on the subject pipe and some youtube-gained insight into jumpstarting our specific pump, Luke heroically made the cool, clear waters run through the faucet again late Sunday afternoon — Hallelujah.

Doctors will prescribe the next chemo dosage based on a physical assessment of this last experience and his blood counts. I imagine they want to push the envelope, to give him the highest possible dosage without tipping the side-effect scales too far… So far he feels really good – especially all things considered. We are so grateful – every day.

He’ll go back for blood work and the new chemo dosage amount this week. January 27th will be the next MRI.

It’s officially been 6 weeks since his second surgery. Luke is shining. He’s back to work, back to skiing, and generally just back to it. We are reveling in the normalcy of it. It obviously feels good. There are moments of fatigue, but mostly we are just thankful that he’s doing so well. It gives us great hope for the future.

We can’t thank you all enough for your support on all fronts over the last 6 months. Everyone’s been amazing in helping to carry us through this journey, as smoothly as possible, on the rockiest of roads. We hope to be out of the roughest patch for some time and, while I’ve been learning what a crooked road life can be, we’re hopeful that our path straightens out on a good, long course. Your support has meant and continues to mean so much – it’s clearly helped us across the board. Thank You!

Here’s hoping for the best for everyone in 2015!

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[vc_row][vc_column width=”1/1″][vc_column_text]Luke moved out of the neuro-ICU in the early afternoon, the day following surgery – to nearly the exact same room he occupied during his previous stay at UCSF. The normalcy and now innate knowledge of how things go, of protocol, of where to find doctor’s offices, pharmacies, admissions, the OR, ICU’s & bathrooms is bizarre. I recognize some of the nurses from before. Everyone is very kind. One of Luke’s ICU nurses, who’s son name is Luke, was particularly great; she was a previously trained acupuncturist, originally from Columbia.

As directed, Luke was kept in low-light conditions until release mid-day on Friday, the requisite 72 hours. When we decided to walk a few laps in the hall at one point, they dimmed the entire floor for his benefit. His sister and I reveled in how much less pain he was in and how well he was doing – having gone through this not that long ago.  We brought him smoothies and other treats and hung out in shifts. I took the majority of the days and early evenings, never knowing when a doctor might swing through with some vital piece of information.

The evening before Luke’s imminent release, our oncologist came by after meeting with the tumor board. The tumor board is made up of department oncologists, surgeons & pathologists who meet weekly to review current cases, diagnosis & treatment options as a group. It’s encouraging to know you have the team’s backing; especially from a department that’s, as the office posters tout, ranked #1 on the west coast and top 5 in the nation for neuro-surgery/oncology.  Dr. Clarke came in with a smile, not something we necessarily knew was in her repertoire; she had good news!

90% of what they pulled out was “scar tissue” (dead tumor), with only the outer 10% of the tumor containing active cancer cells. This effectively means they believe that treatment has been working. In other positive news, they believe this to be part of the tumor they knew existed and was targeted by the radiation & chemo; so it’s not being considered a recurrent GBM. It took us some time to process this information and there are still some basic questions that I haven’t quite gotten to the bottom of: for example, how did the tumor simultaneously grow and die in the allotted time? There was also a communication breakdown somewhere along the line, because we thought they’d gotten the majority of tumor last time… Anyway, the take-home remains the same and is decidedly some of the best news we could have gotten. We were ecstatic of course. “Scar tissue” says Luke, “I told you – It has to be scar tissue.” This was the mantra he had been repeating since the November 3rd MRI, and, thankfully, this time he was right. Phew!

Luke was very ready to leave upon his one o’clock release. He & I walked out, waving to the awed nurses, towards the nearby air b&b his sister had found for all of us. The family (his parents, sister, brother-in-law, and the kids) met us en route to hugs all around. So crazy. Luke was doing really well and we were all happily shocked about his good recovery & news.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/1″][vc_video link=”http://youtu.be/QAMoz-LJuMc”][vc_column_text css_animation=””]

From Cole Valley, where we were staying, our local Whole Foods was located in the Haight & Ashberry district. On Saturday, we made this our itinerary and went for a stroll. Haight street provided it’s own kind of entertainment as shops tried to out-do each other’s window displays, and street-people vied for attention. The architecture and colors of San Francisco homes never disappoint and provide additional eye-candy whenever we cruise the city. We consequently walked both sides of the street and crossed the famed Haight/Ashberry intersection as part of the day’s outing.

On Sunday we walked to the Conservatory in Golden Gate Park. We tried to go twice on our last visit, so made a point to visit during operational hours this time. It was filled with orchids of all colors, sizes and variety – all very amazing and well worth a visit.

Monday greeted us with followup appointments beginning at 9:00 a.m. with the oncologist and surgeon’s nurse. These flew by. Despite having my questions written down, a few still fell through the cracks in the matter of discourse. Sill, the news continued to be good. It was determined that Luke will continue with the standard protocol at this time, which entails 6-8 months of chemo treatment and MRI’s every 2 months. Chemo will be a continuation of the pill (temodar) that he took during radiation, but the dose will be at least twice what it was before; however, instead of daily doses they will be paced out in 28 day cycles. Cycles will include 5 days on and 23 days to recover. We’re hopeful that the side-effects will be minimal – he’ll start Dec. 29th.

While we were there it seemed an opportune time to discuss the primary pain Luke had been dealing with since we left the hospital – his calf. Some varicose veins in one of his calves had been disturbed with the use of the calf “exercisers” that help ensure blood flow through extremities during surgery and we were all were concerned with possibility of blood clots. The veins were swollen and by far the most painful part of the aftermath of his recent brain surgery. We ended up spending the next 4 hours getting ultrasounds of his legs, visiting the urgent care and getting to the bottom of the fact that while there were resulting blood clots, they were in superficial veins and would heal in the next week and half of their own accord. Keep the leg up, try a warm compress and a compression sock.

We walked home the long-way after the unexpected long day on campus. I felt like I should feel relief and gratitude, but instead, I felt overwhelmed with the longevity of this diagnosis, of the unknown future, of the not-so-distant memory of life before all this. My mental shift was impossible hide from Luke, who was feeling upbeat and positive; which was good. We are lucky to have each other and we can only hope our pendulums swing low at opposite times, so the other is there to lift spirits up again when ready. We walked purposely by a home the Grateful Dead lived in during the 60’s on Ashberry street. I got a pic of Luke standing in front of the purple, well-cared for, gated home. As we continued down the hill a young man walked up the hill towards us, “Nice house” he said. Luke replied, “Yes. Nice house.” We passed, then randomly turned to look back at the end of the block, the dude was headed into the house. A brush with fame, of sorts, was enough to take my mind off of the big picture and back to the present; which is typically a good place to be and a place that is filled with gratitude at how extremely well things are going, given what we’ve been dealt.

On Tuesday we went on a 3 mile hike overlooking the California coastline, the ocean and the Golden Gate Bridge with the family. It was a nice outing and a perfect trail with plentiful views. We saw dolphins, a cargo ship and a sailboat pulling crab pots.

Wednesday dawned the precursor to the “big storm” and brought us driving south down Highway 1, taking in the 20 foot waves that crashed along the scenic coast. We stopped in Pescadero. The few businesses in this small, cute, wetland-located town, were putting down sandbags to prepare for forecasted floods. In Santa Cruz we lunched with dear, old friends and took in the expert surfers and the big waves down by the pier. Mesmerizing and very impressive. We went over the hill and had a lovely dinner with my grandparents – all of us were glad it worked out to see each other given the proximity, but obvious challenges in making it happen.

Thursday proved a necessary day of rest for Luke. One GBM survivor’s site talks about brain fatigue vs physical fatigue. I can see that the day of the 3 mile walk was easier on his brain than a full day in the car, viewing scenery, navigating, watching traffic, chatting & dining with friends & family. It also made sense to take it easy the day before we flew. Additionally it was the biggest storm in 10 years for the San Francisco area. Schools were pre-emtively closed, flood warnings were advised and it was an otherwise generally wet day – a fine day to take it easy.

On Friday we made it home in a day, despite our best intensions of spending the night in SLC. It was 2:00 pm when we found ourselves back to our car and the weather was clear. Luke wanted only to wake up in his own bed and there seemed like plenty of time… We decided to make the dash for home against my better judgement. My premonition proved to be on target when Elsa decided to talk incessantly the entire 5 hour drive home.

Mom. Mom? mom? Mom! Are we there yet? (repeat x 5)
Merry Christmas. Merry Christmas. Merry Christmas. (repeat x 3)
After Christmas comes my birthday, right Mom? I’ll be 4. Right Mom?

Repeat. Not exactly the best medicine for a recovering brain surgery patient and admittedly a long day for her too. Luke wasn’t cleared to drive, loves to drive and definitely prefers driving to entertaining Elsa. In the end, not our best family trip, but we made it!

We were all very happy to be home and Luke especially liked waking up in the comfort of home. The day proved drizzly and Luke was understandably tired, so while Elsa was desperate for a Christmas tree, we were contemplating putting it off a day. As I prepared to walk out the door to get a tree permit for the next day, an elf miraculously and inconspicuously delivered the perfect size & shaped tree at the end of our walk. It clearly had not been there moments before. A welcome Christmas miracle that instantly brightened our home and helped bring on the happy holidays.

A big thank you to all the elves in our lives who have busily been helping where they can, showing endless kindnesses and bountiful generosity. We are beyond grateful for your support, our family, friends, understanding employers, the thoughts, prayers and good energy flowing our way. It’s all helping! Luke is doing really, really well.

He’s been good about taking off the requisite 3 weeks – not lifting more than 10 lbs, staying off ladders, and generally taking it easy. Keeping him down a notch for another 3 weeks would likely be beneficial, but we’ll see how it goes. He has been tired and is listening more to what his body needs, namely rest, this time around – which is a good thing. Of course he’s looking forward to running, catching up with everyone and getting back into the full-swing of things in the new year.

In the meantime we’ve been skiing with Elsa – who’s skiing by herself! And otherwise enjoying the downtime holidays afford. We hope you have too and wish you all a very happy holiday.

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[vc_row][vc_column width=”1/1″][vc_column_text]It’s hard to know where to start – sometimes feels like it’s been years instead of four months since life took this crazy turn. There have been a lot of seemingly unnecessary obstacles we’ve had to overcome during the last few weeks. The first included a change-of-date for Luke’s surgery, after we bought airline tickets & wrapped our heads around the upcoming plan. Dentists don’t do this, I had no idea this could happen with a scheduled brain surgery. Nevertheless, surgery was moved up a few days to Dec. 2nd. Not the end of the world, but it was a moment that I felt stretched.

This schedule change also meant leaving a houseful of guests after a lovely Thanksgiving and flying on the Sunday following Thanksgiving – one of the busiest travel days of the year. This in turn resulted in 6 hours wait time at the airport (after a 5 hour drive) and was followed by a complete cancellation of our flight due to mechanical issues. Thus, we spent an unexpected night in Salt Lake City and left for the airport at 4:45 am the next day. After boarding and de-boarding our plane in combination with yet more delays, we finally made it out on an actual departing 8:30 am flight thanks to a kind steward, who made room first for Luke and then for Elsa and myself at the last minute. We arrived in San Francisco a mere 3 hours late for our scheduled pre-op appointments. Unnecessary stress on stress. However, the airlines did what they could and everyone at UCSF made it work as well.

Luke’s sister and family picked us up with snacks and smoothies, swooped Elsa and deposited us directly at UCSF for Luke’s initial pre-op MRI. After the MRI we grabbed a quick bite and then promptly met with Dr. Berger – one of the best brain surgeons on the West coast and the same surgeon Luke saw in July.   His 8th floor hill-top office affords incredible views of the Golden Gate Park, bridge, oceanfront and downtown San Francisco.

Upon meeting with him we reviewed the November 3rd MRI and today’s version to compare notes and determine the the plan of action.  There was some discrepancy between the MRI images due to the different machines used, which made it appear that things might have improved in the month since the first image; however, there was no doubt in Dr. Berger’s mind that there was definitely tumor present and likely some “scar tissue”, both resulting in swelling and agitation. Whether he went in now or in a couple of months, it would have to be done. For a split second, Luke thought he might be temporarily off the hook. Since our oncologist was out of town, Dr. Berger called in another for a second opinion. In the end, it was determined that now was the time. This was a good call in my opinion, as we were here, prepared and ready to get it out for another fresh start. It was also decided that given his previous surgery, tumor location and Dr. Berger’s brain mapping (while Luke was awake) that he felt he could safely do this surgery with Luke asleep.

This meeting was followed by an MSI scan. Magnetic Source Imaging is “a new technique for measuring brain activity; it records the magnetic fields created by electrical activity in the brain.” This procedure involved a magnetic room – one of only 20 across the country. Two days a week are devoted to Dr. Berger’s patients, the rest are devoted to research, primarily in regards to epilepsy. Luke laid down with his cranium in an MRI-esque contraption and settled in with some earbuds. He was then locked in while the researcher and myself situated ourselves on the other side of the massive door. The researcher played a series of nouns, to which Luke was asked to reply with related verbs – car = drive, etc. On the researcher’s computer a series of seismographic-like lines swept the screen. They were mesmerizing, beautiful and impossible for me to imagine how they would be applied. Tests were varied every 5-10 minutes. The researcher would go in, check on Luke and explain the upcoming series, then come out, push play and compute the lines. In the end, this information would be further applied to mapping Luke’s brain for the upcoming surgery. It took a couple of hours and would entail them staying late in order to have the final map computed & prepared for tomorrow’s 7:30 am surgery.

Dr. Berger also approved Luke for use of a clinical trial drug called ALA. While it’s standard care in Europe, Dr. Berger is trying to gain approval in the US. Luke is one of 300 patients at UCSF that will have the opportunity for it’s use during this phase of the trial. The morning of surgery, Luke will swallow this sour liquid. After Dr. Berger removes everything visible, he’ll turn on a black light of sorts, any remaining tumor will glow. The only downside is that he’ll have to remain in the hospital for 72 hours in a low-light environment. Apparently this medicine is more commonly used topically for skin cancer to be sure they’ve removed everything, but people can burn more easily right after its use. After the last surgery, Luke was released a day and half later – as caregivers, we felt that might have been a little too soon, so we weren’t really worried about the additional care and it seemed like a small price to pay for the benefits it might reap during surgery.

After getting a blood draw and collecting the necessary medicine we finished everything up around 6:30 pm. A long day, but so grateful that we were able to squeeze it all in and for UCSF’s help in accommodating our delayed arrival. A quick dinner at home with the family was followed by an early night’s rest.

Unfortunately, the next morning found Elsa with a fever and cough. I was torn trying to get Luke to the hospital in time and trying to snuggle her back to necessary sleep. Luke’s sister ended up running Luke up to the hospital for the 6:00 am check-in and returning momentarily to chauffeur me after I successfully got Elsa Bird back down. Tough to leave, but I knew she was in good hands.

I caught up with Luke in admissions. Then we reminiscently headed down to the 4th floor OR where Luke was issued a draped “room” in the back with the aforementioned dimmed lights. He changed into his surgical gown and conducted a few interviews with the anesthesiologist and crew. Dr. Berger came by for a quick hello and any last minute questions. Soon enough he was wheeled out and again we experienced the dejavu of the kissing corner. One last love, a solid reassurance from the accompanying nurse and away he went through the solid double doors.

It was drizzling and with Elsa feeling blue, it seemed appropriate to return to the family. We kept each other company and rallied for a walk to Golden Gate park, loading the girls (3 & 4) into the double bob and the 1.5 year old onto his mama’s back.

The OR called hourly to check-in. All was going according to plan. Around the 4 hour mark I got the call to come back to the hospital and wait in the surgical waiting room for Dr. Berger’s next call. I was ushered up 30 minutes later. Dr. Berger met me briefly in the hall. He said that he felt everything had gone well, though he did go considerably deeper this time. He didn’t anticipate any problems for Luke’s recovery.

Within the hour I was reunited with Luke in the Neuro-ICU. He was nauseous, but otherwise doing so well. Last time pain management ranked as the main priority in the crucial hours of recovery, this time his main complaint was a dry mouth and a 24 hour restriction on liquids or food. He was sweet-talking the kind nurse and then repeatedly slipping in – “Water?” Her compromise was an ice chip/hour. He was devastated and persistent.

Luke’s sister, Anna spelled me after dinner since everyone is ousted between 7 & 8, am & pm for shift changes. We were all thankful to be successfully on the other side of this hurtle with Luke in good spirits, talking and readily able to walk on down this road we’ve turned down – life, with all it’s ups and downs. [/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/1″][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=”3285,3286,3280,3284,3282,3288,3287″][/vc_column][/vc_row]

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Despite the adages to ‘take it easy’ during radiation, Luke continued to go as full steam as his body would allow and was unexpectedly up until 4:30 am on his last night of treatment – processing a moose. Luke moves about a thousand times faster than these updates; so first, I must recount the marathon he ran in 4 hours, 25 minutes – less than one week before the moose/radiation finale.Luke continually trained for the marathon when time and energy allowed. On October 3, our family left at 6:45 am to make his 8:15 daily radiation appointment in Idaho Falls. The team, who has clearly come to love Luke, greeted us with smiles. When we walked Luke back to the treatment area, we were delighted by the super thoughtful banner across the doorway – “Good Luck Luke!”. They have been consistently wowed by his constant level of activity and have deemed him their most inspirational patient to date – even bringing in doctors to meet Luke at one point. Afterwards one of the nurses, who’s recently taken up face painting, asked if she might paint Elsa’s face. Of course Elsa was delighted by the prospect & the finished product. At 8:45 am we made our way to the Salt Lake airport, with our new pink kitty-faced daughter in tow, ever eager to show her painted face to her Portland cousin upon our arrival, a mere 12 hours away… In turn, Luke was also planning on surprising our hosts with his new mohawk – the only hair-do choice left, aside from shaving it all off, once it started falling out. Luke’s sister, Anna, her husband Chase & their kiddos one-uped us when they picked us up from the airport dressed in their Canadian team regalia – race ready and so perfect.

We were able to reconvene at the finish, where at the bottom of the last hill, Luke told his compatriots that they should slow down… as he sped up. Then he declared that they should “sprint” with what they had left to the finish line – which they did! A huge thanks to Anna & Chase who took up the challenge of the marathon and more so, the challenge of running with and containing Luke during the marathon.  Chase was the perfect anchor and kept the team aiming for and sticking to their allotted 10 minute miles. I know that it’s not an easy task to contain a Neraas (let alone two!) and am ever grateful for his efforts, which resulted in no small amount of personal soreness. An amazing family & friend group rounded out a spectacular day – with ice baths for the athletes, of course. Unfortunately we couldn’t stay in Portland as long as we originally intended due to the constraints of timely radiation, but we did have the good news that coming back meant the last week of treatment.10.10.14 was the last date of radiation. As I’ve pointed out, Luke’s appointments have been early in the morning, giving him the rest of the day for recuperation or the opportunity to do something else with his day. On this particular Friday, in celebration of the finale of radiation, Luke and Shane – another past groomsman and a terrific hunter, went on a ‘scouting outing’ for a moose. Luke has put in for five years to get his once-in-a-lifetime Idaho bull moose tag and drew it this year. As he’s been consumed with the marathon, radiation/transportation, some work, and life-in-general, he hadn’t put much effort towards the moose tag yet. It’s a longer season and also thought it would be better to wait until the weather was cooler to hang the meat, etc. In short, there was no plan for the aftermath of getting a moose just yet, but that doesn’t mean people won’t rally if and when plans naturally change.Shane readily called in a bull moose from the ridge they were on, however; despite it’s decent size, the good location and easy shot, Shane called Luke off the shot since the moose was not deemed “big enough”. They ended up having to shoo this moose away. They are not their brightest during their rut.  Not too far down the ridge they called again and after seeing the bushes shake and getting a good look, Shane gave the thumbs up. Luke took aim and fired two shots within an inch of one another. The moose fell. Then he rolled down the ridge, thankfully in the right direction. Unfortunately, as he rolled, he hit the only rock on the hillside and broke off a portion of his antler paddle – easily fixed.Moose are big and I’m thankful that Shane was there to help on a number of fronts. Also, Shane’s phone got reception and they were able to call in four ready, willing and awesome reinforcements to pull the meat out that night. Six glorious guys carried out 600+ lbs – everything but the hide, caracas & guts.  We went back for the hide the next day. I, personally, was so shocked by the call, lack of proper planning and quickly sinking sun, that it was a long while before Elsa & I rallied, but rally we did.  We walked into the site around 11:00 pm. Elsa slept in the truck, but cheerily chatted as I carried her on my back discussing moose and how thankful we were for the coming meat as we walked in the light of the just-waning harvest moon. We arrived just in time to catch the fellas as they loaded their ridiculously heavy packs. Elsa and I carried out the broken paddle. It was a late & memorable night by the time the meat was to the truck, home and hanging. The mission is not quite over, as we will hand process the meat and package it ourselves, which is no small undertaking; however, it will be wonderful to have a freezer full of organic, grass fed meat this winter – especially when it’s so important to Luke’s diet this year.

           

Luke does get tired and has the occasional difficult day or moment, though he readily comes back and apologizes for them later – par for the course I say. Fatigue was a huge disclaimer of both the radiation and chemo, and no one is top notch when they’re tired or hungry (especially with his constantly refined “best” diet for brain cancer). He also can’t help but run a touch in ‘fast forward’ with the given diagnosis and the knowledge that this kind of cancer has an extremely high likelihood of returning and could limit his time – this, of course, gets complicated quickly. In the interim, he is determined to play as much as possible and enjoy life – to all our benefits… If we can keep up!

After a generally restful week following the above events, Luke is officially back to work this week and two weeks out of radiation today. Our next step is to have a meeting with a nutritionist who’s been working in the field of food’s effects on cancer for 15 years and has some good GBM survivor statistics – we hope.  The goal is to “create an environment that is less conducive to the growth and progression of cancer”. The notion of cancer nutrition has been a point of contention throughout this process, but we hope to have it nailed down shortly – as best we can. November 3rd will be the first official MRI since surgery. We’ve opted to get the scan done locally with a reading by JH doctors and a phone consult/reading with UCSF. Of course, we are also hoping and planning for the best. There will be scans every 2 months going forward.

Our sincere thanks goes out to all those that made the marathon & moose such terrific experiences. It’s all been a team effort and we so appreciate your ready support across the board. Thank you!

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