Recovery: 3 weeks
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.
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.
Here’s to 2015!