An Uncelebrated Anniversary, MRI, Surgery & Stroke

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.

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.

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.

IMG_1476With 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.

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…

IMG_1481Surgery 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.

IMG_1487The 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:

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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.

This Post Has 2 Comments

  1. Jed Brown

    My heart is with you three. Do not hesitate to contact me, if it suits you. 970-929-5324 is the land line. cell is the same.

  2. Molly Robertson-Goodrich

    Luke and Claire, You can do this and meet the continuing challenges! You are so strong! So much love comes your way from so many! You are in my thoughts with lots of love and support! Big hugs to you over cyberspace!
    Love, Molly

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