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The last two weeks have been a whirlwind of traveling, doctor visits, and even some fun. Many people have helped us out lately, and I am grateful to have such amazing friends. Here are just a few of them:
First and foremost, my hiking partner John Comstock should be nominated for sainthood for all he has done for us since I was diagnosed 21 months ago. He and his wife Jo Ann made a pledge to cook a healthy vegetarian dinner for us at their house once a week, and that has taken a lot of pressure off Leslie and become an institution (‘The Tuesday Night Supper Club’) that we all enjoy. John and Jo Ann also watch Pinjji – the cool cat that brought us together four years ago — when we are gone (33 nights on Lopez so far this year, as well as other trips), and take care of the house in our absence. This last trip, John also drove us to Oakland Airport (because we were coming back into SFO), mowed the lawn, and even fixed the mailbox! He’s also helping us with getting our roof redone, something which may even start this week while we are back in LA.
Jo Ann, John, and Rob on the first of many memorable Pt. Reyes hikes - October 2007.
Steve Rubey, who I met in Hawaii at the ’84 Clipper Cup through our late mutual friend Carl Schumacher, has been a rock-steady friend through the years and has been especially supportive since I was diagnosed. He knows a lot about cancer, not only as a doctor, but as someone who lost his lovely wife Ivaly to the disease. Steve moved from Bellingham to Lopez to live with her, which is why I began visiting Lopez back in the mid-’90s – and I still feel Ivaly’s presence on the island. This last trip, Steve picked us up at the ferry, made us three dinners (lots of crab and salmon!), took us sailing on his Melges 24, loaned us his car, and a million other things. We wouldn’t have the yurt or any of our Lopez friends (Joe, Jerome, Randall, Jim, Langdon and Robin, just to name a few), if it wasn’t for my ‘big brother’ Steve.
- Mark Meloy (from Bluff, UT), Rob (under the straw hat), and Steve on the Melges 24.
A highlight of our last Lopez trip was a visit from my old boarding school roommate, Rob Campbell, and his wife Meg. They flew out from Connecticut to the yurt in one very long day, and were en route to a lumber executive conference in Alaska. I’ve known the Campbells seemingly forever, and it was great to see them for three days on our home turf. Rob got me a lot of my earliest big boat rides back on Long Island Sound in the ’70s, including the first overnight race I ever did (a C&C 39 called Freebooter). We’re both fans of Block Island, where the extended Campbell family has a gorgeous compound on the Salt Pond that Leslie and I have stayed at twice after BIRW. It was interesting to compare Block Island and Lopez with the Campbells – there are more similarities than not. (We decided that Orcas must be the Nantucket of the San Juans, while San Juan Island must be the Vineyard.) Rob is great with wood and tools, and quickly made us a washers game (big on BI, and soon to sweep the San Juans!) and finished off the wood counters we made earlier this year with nice wood trim. We did a little kayaking (Meg is a natural!), biking, berry picking, and even splurged on the Bay Cafe one night. It’s so easy to hang out with old friends, even in new (to them) situations.
Rob and Rob with the nearly-finished washers game.
Meg and Rob M. attempt the slalom course.
We were home for three days before driving down to LA to meet with Dr. Garon of UCLA and undergo a battery of baseline tests, all of which I passed. Coming more or less straight from the sleepy meadow on Lopez to LA, the juxtaposition of landscape and lifestyles was particularly mind-boggling. Too much pavement, too many people (half of them seem nuts), too much smog, not enough hills… I could go on and on, but none of this is new. What made the four days palatable was staying with old friends Mike Priest and Kellie Fennessy in their comfortable house in Torrance. I’ve known Mike and his brother Tom since the mid-’80s MEXORC days, and we all got to be good friends while sailing on the SC 70 Evolution in the ’89 TransPac. Mike met Kellie, from Mill Valley, at one of the Bitter End YC Pro-Am Regattas I attended in the early 2000s, so I have seen their relationship bloom from the beginning! It was great to stay with good friends during what otherwise was a stressful, discombobulating week.
Mike, Kellie and Rob.
Speaking of which, we are aiming the Suburu south again at 6:00 a.m. tomorrow with the goal of being on the table at UCLA for a 2:20 CT scan. Nothing is scheduled for Tuesday, and barring any unforeseen drama, I will get my first infusion of AUY922 (this drug needs a name! Any suggestions?) during an all-day session on Wednesday. Follow-up blood work will occur on Thursday and Friday mornings, after which we will retreat to Marin. We’ll be staying in Beverly Glen at one of Damon Guizot’s houses, which is literally within walking distance of UCLA – how convenient is that? Damon has been a good friend for almost a decade, and we have had some amazing sailing together on his immaculate Swan 53 Katrina in Sardinia (twice), Cowes, the Caribbean, Mexico and SoCal.
There are many other friends to acknowledge — but that’s enough for now. When you get hit with a medical crisis like this, you really find out who your friends are – and I am blessed with so many of them. Thank you, all.
We hope you all had as terrific a 4th of July as we did! We had a remarkable 12 days on Lopez, concluding with one of the most spectacular firework displays we had ever seen (more details and photos from the trip next week).
A beautiful day for kayaking! Rob and Steve with the Olympic Mountains on the horizon.
Nearing our picnic site.
Steve's pond now hosts a couple of kayaks - great fun for kids of all ages!
A huge display for such a small island!
We returned on Tuesday (actually Wed. morning) after a very long travel day, we saw Dr. Liu on Wednesday, and Rob is now at Kaiser having his chemo treatment. The visit with Dr. Liu was routine, but he gave us some new options to deal with Gemzar-induced fever and rash that Rob has been experiencing. The good news is that he does think that the Gemzar is working since Rob’s CEA number has been slowly decreasing and his cough seems to be improving somewhat. As for the next CT, it’s looking like it will be after the third treatment in this round, i.e., later this month, unless Rob’s symptoms worsen. So it looks like Rob will continue the Gemzar for at least another three weeks. The goal is to keep the chemo intensity high right now so it has the maximum effect, and get as much time out of the Gemzar as possible before moving to something else. We are awaiting the results of the genetic analysis from Mass General, which will be instrumental is determining the next steps.
As soon as Rob gets home from chemo, we are heading to Pinecrest to stay with Hank for a few days and help him open the cabin for the summer.
Not much new from the cancer-fighting trenches. Rob’s cough is persisting, which is worrisome, and he has been taking daily naps, but otherwise he is holding up well. The Neulasta shot – which was shockingly expensive (nearly $6,000 for one shot — thankfully insurance covered it!) – caused Rob’s bones and joints to ache for a few days, but that seems to be over. We are mostly working on getting the condo ready to rent (paint, carpet, etc.), reading books and watching Netflix movies, and staying warm and dry. We’re also avoiding crowds and germs as Rob approaches the nadir of his 21-day chemo cycle – he didn’t enjoy his recent hospital stay enough to repeat it anytime soon.
It’s great to be home for awhile, but our thoughts keep drifting back to Lopez. We were on the island six times this year, once a month starting back in May. Rob spent a total of 82 days there, and I was there slightly less – it was a wonderful summer.
Looking south at the Olympic Mountains.
The last trip — which now seems like light years ago — was a quick one in the first week of November, mostly to close up the yurt for the season. It was damp most days, and mushrooms were blooming everywhere! It was also somewhat chilly at night, and the days were short, but Lawrence Elk proved up to the task of heating the yurt to a comfortable 70+ degrees in all weather. A nice highlight was a visit from our friend Jason, formerly of the Bitter End YC, the Aleenta Resort in Thailand and now working in Vancouver, BC. Jason brought along Tabitha, his well-traveled Thai beach dog, but his fiancée Katie couldn’t make it – she was delivering a Swan 100 from Maine to the Virgin Islands. Nice!
Jason, Rob, and Tabitha at the end of Spencer Spit.
In between rain showers, there were some gorgeous days for kayaking and hiking. We enjoyed the slower pace of the island, which seemed empty compared to the summer months. It was a pleasure to walk to the end of Spencer Spit, a popular state park that is closed for the winter, and not see anyone! The three of us also were the only clients in the Love Dog Café, our current favorite Lopez restaurant, on a Friday night during what should have been ‘rush hour’– the island is a ghost town now.
Rob got in as much kayaking as possible during this trip.
Rob and Jason (I was in the front of Steve's double).
A beautiful little cove where we stopped for lunch and hot tea.
Hiking with Kathryn, Steve and Rob.
Mushrooms were everywhere! Shaggy ones...
Tiny ones...
Strange ones...
Lopez is a wonderful, calm, healing place, but for now the days are too short and cold to enjoy living in the yurt. Sure, we could make fires, drink tea, read books, and go for short walks – but those are all things we can do just as easily in Mill Valley. We’ll get back up there again starting in March or April, but in the meantime, if we go anywhere, it will be someplace warm and sunny!
No electricity, no water, but it's warm and cozy!
We’re just back from another trip to Lopez, and it was a busy one! Rob flew up on 9/11 and met his long-time friend and former boat partner JB, who lives in Long Beach, at the Seattle airport. Together, they took the bus/ferry to Lopez and opened up the yurt. The weather was moody, misty, foggy, drizzly, and occasionally outright rainy (welcome to the Northwest in the fall!), which put a slight damper on some things. However, Steve, JB and Rob kayaked 10+ miles from Shoal Bight back to Barlow Bay, thus completing Rob’s three-part circumnavigation of Lopez. This last leg, the southern one, is by far the most scenic!
Other highlights of Rob’s first week included going on the pre-tour and dinner for the annual Lopez house tour, which featured seven houses this year including Steve’s beautifully restored 100-year-old farmhouse; the weekly ‘men’s dinner’ at Jerome’s house; a pig roast dinner feast at Langdon and Robin’s place (they have spent the last 30 years summering in their tent, tepees, and yurt and are our mentors on off-the-grid living); and getting stung on the tongue by a yellow jacket. Okay, that was a lowlight.
I arrived on Lopez on 9/19, having stayed home for an extra week to catch up on chores and photograph the first two days of the Big Boat Series. Unfortunately for the photos, those two days were extremely foggy, with fairly light wind and a flood tide, so no exciting action shots for me this year! It was still great to be out on the water, although the BBS just wasn’t the same without Rob out sailing.
The weather on Lopez this time of year was/is variable, to say the least. We dressed in layers, planning chores between rain showers. We lit our wood stove every night to keep us toasty, and on some mornings to burn off the morning dampness. Occasionally we lit the outside fire and ate at the picnic table, but more often we retreated inside. We even set up the kitchen in the woods this time, covered by a flimsy, but largely effective, tarp. We also learned to augment the sun showers with hot water from the stove, which worked quite well.
On 9/22, Rob’s only sibling/sister Marnie, and her husband, Scott, arrived from Rhode Island. As we have been frequent visitors to their special cabin in Vermont, we finally had the opportunity to reciprocate. Rob immediately enlisted Scott to help chop firewood, and Marnie and I moved and stacked it, completely filling (and then some) the woodshed built during our last visit.
The fully stocked woodshed.
Scott, Marnie, and Rob at "the Spit".
Between chores, Marnie and Scott were able to get in a couple of short bike rides and hikes — Shark Reef, almost in our backyard, was a favorite. Other diversions included planting a volunteer Doug fir in the meadow (the first of many if it takes), and a day trip to the bustling metropolis of Friday Harbor.
Rob and his women!
Scott, Marnie, and Rob at Shark Reef, looking at...
...at least a hundred seals on the rocks across the straight!
The Shark Reef challenge.
Scott and Rob plant a tree. Scott thinks it should be named "Juanita".
On the last full day of their visit, Rob took Scott for his first-ever kayak outing while Marnie and I went for a hike to Iceberg Point. Scott, a natural, returned with a grin on his face, and we knew he was hooked! That night we celebrated Rob’s 57th birthday along with Steve and Kathryn at the Love Dog Café, a memorable evening. How wonderful it was to celebrate this significant occasion with family and close friends!
Rob gives Scott a few quick pointers.
Scott and Rob.
Look closely - it's our boys on their way back to the dock. Kathryn and Steve are the dot on the right. (Click to enlarge)
The four of us grabbed an early ferry on 9/27 and drove Scott’s much-maligned but trusty Cobalt rental car to the airport together, and then headed for our respective homes. This was a really special trip for all of us, but it was time to get back to reality, which unfortunately includes lots of doctors appointments. However, all seems well enough for now — Rob’s blood tests remain in a normal range, and he had chemo this afternoon. His next ‘report card’, i.e. CT scan, is scheduled for 10/19 and we have no reason to think anything has changed much. We hope, we hope…
Sorry this report has been rather long and rambling. If you’re still awake after all this, check out “Birthright“, a six-minute video about Michael Mitchell (Shirley’s son), a remarkable man who lives in Stinson Beach. Michael was paralyzed from the waist down in a surfing accident as a teenager, but it has never stopped him from enjoying a full life. In fact, he is one of the happiest people we know, always smiling and full of good words for all. We hope you find this short film as inspirational as we did.
Tempus fugit! Somehow we’ve neglected the blog for another three weeks, but when this happens it generally means all is well and we are out of town having fun. We’ve been home from Lopez for several days now and Rob has undergone another round of ‘maintenance chemo’ and is doing fine other than the usual tiredness and some neuropathy (numbness in feet and hands due to cumulative effects of chemo).
Last week was a significant milestone – 9 months ago, our original doctor, who we thankfully replaced with Dr. Liu, informed us that the average Stage 4 lung cancer patient lives just 9 months after being diagnosed (ironic that human life is also created in 9-month cycles). Well, August 10 came and went and Rob is still very much here! He is now up and over the top of the bell curve, and shows no sign of leaving Planet Earth in the near future. We are thankful for the excellent care of our oncologist Raymond Liu, nurse David Sexton, alternative medicine guru Michael Broffman – and for the support and love of our family and friends. It’s been a wild ride, but so far the results have been as good as possible.
According to Dr. Liu, only 1 in 10 lung cancer patients can endure the amount of chemo Rob has been blasted with. This bodes well for keeping the cancer in check for now, though some of the side effects from the drugs are cumulative, and at some point Rob will have to go off chemo for a few months. If/when his situation deteriorates, he will hopefully get into the Pfizer-sponsored Phase III trial for ALK-positive patients (he has already qualified, but there are a limited number of slots). See previous blogs for how this works, and for the Catch-22 nature of the study. Anyway, there are more options when the time comes.
On to more enjoyable subjects: We spent a lovely 12 days up on Lopez, joined for a week by Leslie’s brother Steve, sister-in-law Susie and nephew Andrew. They drove out from Salt Lake City, towing a pop-up camper, two kayaks and three bikes. They set up camp in the meadow behind us, and joined us for meals (lots of fresh Dungeness crab and salmon), hikes, kayaks, and other Lopezian diversions. Speaking of food, Lopez is still very much an agricultural community, with lots of organic farms and even a winery. Since we only have an ice chest for refrigeration, we frequented the farm stands nearly every day for wonderful fresh produce. The outdoor kitchen configuration is still under development, but Leslie’s slowly getting the ergonomics worked out.
The outdoor kitchen.
A 2-burner stove, used doors for countertops, ice in a cooler, and water jugs, what more could I want?
The produce at Horse Drawn Farm lives up to its name.
Rob, Andrew, Susie, and Steve by one of our many campfires.
Rob and Steve finished the wood shed, among other projects – but we still haven’t faced building the yurt’s deck and porch. There’s always something more fun to do, so maybe we’ll put that off until next spring.
Rob also sailed (well, drifted) on an Olson 30 in a race called the Shaw Island Classic. It rained all day, the currents were huge, and there was no wind and only one finisher out of 60 or so boats. Yuck! The kayaking is much better than the sailing up there, and Rob and Steve Rubey (now known as ‘The Man’, courtesy of Andrew) did a long paddle from Odlin Park to Shoal Bight on the outside of Sperry Peninsula (Paul Allen’s private compound). This was leg two of Rob’s 30+ mile Lopez Circumnavigation, with only one more leg – the south side, which is by far the most scenic – to go.
Steve Rubey (foreground) and Rob near the end of their paddle.
Rob completes Leg 2 of his Lopez circumnavigation with Mount Baker in the background.
While Rob was kayaking, Leslie amused herself photographing more of the island, and spent hours trying to get the best shot of a nest of baby barn swallows in Steve Rubey’s chicken coup.
A nest of 5 baby barn swallows in the chicken coup.
It's feeding time as both parents return almost every 2 minutes with a selection of bugs for the babies.
Out of the nest and testing their wings, the babies were gone the next day.
A pair of Pileated Woodpeckers live in our woods - at 16- 20" tall, they're North America's largest woodpecker.
At the end of our trip, we reluctantly drove the Suburu home, spending the night in Roseburg, OR, a non-descript town that has seen better days.
Waiting in line for the ferry to Anacortes.
We’re in Mill Valley for the next few weeks, dealing with ‘real life’ stuff – bills, yard work, car maintenance, and catering to Pinjii’s every whim. Rob is back to sailing again — tonight in the beer can race on Yucca, and on Saturday and Sunday in an IRC regatta on Soozal. Leslie is wrestling with a head cold, but seems to be recovering – and Rob’s immune system, aided by tons of hand sanitizer, seems strong enough that he’s resisted the contamination so far.
Catch us if you can while we’re in town. We have plane tickets to head back to Lopez in mid-September, as well as New England in early October to see Rob’s family and enjoy the fall colors. Despite what we have been through these last nine months, life is good.
