What to say…
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?
…. 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.
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.
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.
Is his left pupil still dilated?
If eyes are the window to the soul?
Then Luke’s soul must be that much closer.
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…
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.
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.
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.*
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.