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I’ll admit it – I’m sick of cancer, chemo, needles, hospitals, CT scans, coughing, neuropathy, low energy, and various aches and pains. It is scary and depressing that my cancer continues to progress despite doing everything in our power to contain it. The bastard is getting smarter, and we are running through the drug options quickly now. I’m disappointed that my association with Stanford was so brief, and had hoped for a much longer run on criz, which was a vacation compared to getting back on chemo. Hopefully these weekly infusions of Gemzar will work, but so far my cough has not abated and I’ve had some nasty chills and fevers from the drug. On Sunday night around 6 p.m. — right on time for the Rapture — I started shaking uncontrollably, and then developed a fever that finally peaked at 102.4. I skipped dinner, and after 15 hours in bed, I was disappointed to wake up at home instead of in heaven. (If there is a God, he or she must be in hysterics over his latest prophecy!)
Okay, enough whining. I’ve only had two doses of the ‘Gem’, so it is too early to know if it will work – and I am optimistic that it will, as I figure I’m due for a break. The good news is that I’m still here, and in relatively good shape other than the chronic cough and a minor energy crisis (time to get hiking again!). The new chemo regimen has thrown a monkey wrench in our summer plans, but we will deal with it — and still intend to spend as much time as possible at the yurt. We’ve also got a 10-day trip lined up in early June to go back to New England to see family, friends and a doctor at Mass General Hospital (MGH) about Plan E. The MGH docs are experts in the new ALK-targeted therapies, and have several potential clinical trials (not available in our neck of the woods) that might be options for me. Leslie is leaving no stone unturned in her efforts to find the best next step.
Coffelt farm from the pond -- the yurt is in the far right corner.
It's springtime at the yurt.
Happily, we managed to sneak away for five days on Lopez last week, our shortest trip yet. It was rainy and still a little cold when we arrived, but glorious for the last two days – it was hard to tear ourselves away, but I only have a week between chemo sessions now and had to get home (Kaiser doesn’t extend up to Washington state). Over the weekend, we went to a quintessentially Lopezian event, the annual Sheep-to-Shawl demonstration at the community center, a full day of herding and shearing sheep, spinning wool and loom demonstrations, environmental exhibits, butcher clinics and even lamb burgers if you were hungry (we weren’t).
A traffic jam on Lopez!
Spring lambs.
Rounded up, penned in, and ready for shearing.
The shearing begins.
Oh the indignity!
Almost finished.
We have a wood stove -- but will this ewe be cold tonight?
A major accomplishment during this visit was the construction of two kitchen counters for the yurt (finally!). Thanks to Steve for handling the power tools! We also had several great meals with Steve and Kathryn, read books by the fire, hiked a little, and generally took it easy. It’s still too cold for kayaking or sailing.
Measure twice and cut once!
The finished counters!
The big excitement – which is a relative thing on Lopez – was the discovery of two baby Great Horned Owls in the woods. They were cute little fuzzballs, tentatively named Custer and Sitting Bull, easy to find in the same area every day as they are still oblivious to the art of camouflage. Their parents were almost always lurking nearly, but were much harder to spot… We also think there are eagles living back behind the groover at the moment, and the sky is thick with three kinds of swallows (barn, tree, and violet-green). A pair of ducks and geese have taken up residence at the pond, and Steve – who is becoming quite the birder – has put up various kinds of birdhouses all over the meadow. Oh, and the robins start chirping incessantly at 5 a.m. Anyway, Lopez is a birder’s paradise, if you like that sort of thing.
Great Horned Owl fledglings.
One of the owlets.
The watchful eyes of Mama or Papa.
Rob and Steve with the new bluebird house near the yurt.
A violet-green swallow checks out a possible new home.
It’s ten days into the New Year already – time flies when you’re having fun! It’s also been just over ten days since Rob starting taking criz – still no side effects or noticeable results (i.e., the cough persists). However, it supposedly takes about a month for criz to do its magic. Patience, everyone — especially Rob!
Marnie, the family wit, even wrote a long doggerel (i.e., bad poetry, a multi-generational family tradition) about the subject called Waiting for the Criz to Work, set to the tune of “Sitting on the Dock of the Bay”. With her apologies to Otis Redding, here are the first two verses:
Waitin’ for the Criz to work
I’ve been coughin’ like a pack-a-day jerk
Ten rounds of chemo done
Can’t remember what it’s like to have fun
I’m waitin’ for the Criz to attack
Crushing my tumor, beating it back
Ooh, I’m waitin’ for the Criz to attack
Wastin’ time
We’ve been busy with house guests (Steve and Kathryn from Lopez), but I was able to sneak away for a couple of days to photograph migratory birds in the Sacramento National Wildlife Refuge. Thousands of snow geese use the refuge and nearby rice fields as a winter stop over, as do sand hill cranes and many other water birds – it was spectacular!
Over 100,000 snow geese were counted at SNWR in December.
Keeping a watchful eye...
Sand hill cranes in the fog at the Cosumnes River Preserve.
Sand hill cranes - mating ritual or territorial dispute?
We’ve been hiking almost every day, and logging miles on trails at Pt. Reyes, the Headlands, and Mt. Tam (Rob is leading our newly-formed ‘2011 hiking challenge’ with 30 miles already logged this year).
Half-way through a 9+mile hike at Point Reyes. (Photo by John Comstock)
Steve and Rob at the "Serpentine Power Point" on Mt. Tamalpais.
On Saturday, we enjoyed a fun wedding, that of Morpheus buddy Tim Parsons and Jane Stewart. Of course, we’re procrastinating on the big things (estate planning, house projects, condo sale, etc.), but running out of excuses not to tackle them soon.
On a sad note, one of Rob’s old Connecticut friends, Bill Langan, passed away recently after a two-year battle with leukemia. Bill, just 55, was an all-around great guy, as well as a prominent naval architect in Newport, RI. Rob and Bill knew each other since college days, and would bump into each other at regattas in warm places every now and then. In the last year, when both had been diagnosed with cancer, they corresponded more frequently. Bill will be missed by his wife Candy, their two kids, and all who were lucky enough to know him.
A 1974 picture of Rob (bottom left), Bill Langan (next to Rob), members of the Brown Sailing Team and friends. See Scuttlebutt for the rest of the story.
Stopping for tea at the deserted Mountain Theater on Mt. Tam, the day before starting "criz".
Thursday, December 30, was a long day full of milestones. First, and most importantly, Rob began Crizotinib. We were at Stanford most of that day, as Rob had three blood draws and two EKGs while the staff monitored his reaction to the new drug over two hours. All went smoothly, and there have been no side effects yet, which bodes well. We’ll know within a month if the ‘criz’, as we fondly call it, is doing its thing – either through the regularly-scheduled CT scan in early February, or if the cough subsides sooner. Happily, criz is a twice-daily pill, not an infusion – though we still check in with Stanford every three weeks for the same routine described above.
Marnie rewrote the Langston Hughes poem in honor of the day (“The snow done frizzed me; Pfizer done crizzed me…”) and Don Wieneke is guilty of embedding the old Huey Lewis song “I Want a New Drug” deep in our subconscious. We are optimistic that this new targeted drug will work, and the odds are seemingly in our favor – something like 70% of the patients in the trial have had success with it so far, and it is being heralded as a breakthrough drug. Rob is only the second person at Stanford to get the criz, and apparently the other man has responded well.
Two other things of note occurred last Thursday: John Comstock retired after a long and distinguished career at the San Francisco VA Hospital, where he was chief biomedical engineer. Among other things, this means Rob will have a weekday hiking buddy other than me. They’re looking forward to hiking, kayaking and maybe even backpacking more often now – and they have even formed a 2011 hiking challenge (more on this later, perhaps). The other thing was that the UConn women’s basketball team’s amazing winning streak finally ended at 90 games, much to Marge’s (Rob’s mom) dismay. At least they lost to a worthy team, Stanford. We even thought briefly about trying to see the game, as we were right there – but not for $200 a ticket to scalpers!
Yesterday afternoon, John, Jo Ann and I braved the cold, drizzly weather to search for long-eared owls (there were 9 of them!). Even in the bad lighting and through many obscuring branches, I managed to get one in-focus portrait of these beautiful birds.
Long-eared owl.
Last night, we ate dinner and toasted the New Year with John and Jo Ann in front of their fire – particularly nice during the cold, damp weather. Actually – no surprise – we didn’t really make it to midnight. We were home in bed by 11 pm, just like the old married couple we suddenly are. This last year was an emotional roller coaster ride, and we are glad to get it behind us. We are hopeful that the upcoming year will be a better one but, as always, we are grateful just to be here enjoying one day at a time.
All the best to our many friends who have been following this blog. Thanks for being there for us – onward to 2011!
Fireworks from the 2010 Sausalito Lighted Boat Parade.
We enjoyed a nice Thanksgiving last Thursday, spending the day hiking and picnicking at Abbott’s Lagoon in Point Reyes with John and Jo Ann. We found many snowy plovers, an endangered species, among 80-some other birds that John, our resident expert, logged. We retired to our house at dark for a fire and a wonderful stuffed portobello mushroom vegetarian dinner (this recipe is highly recommended) with all the trimmings. This weekend, Leslie cooked a small turkey and stuffing, so we had Thanksgiving twice!
Thanksgiving Day at Abbott's Lagoon.
Rob and Leslie
The endangered Snowy Plover
Snowy Plover.
Sandpipers trying to keep their feet dry.
Jo Ann, John, and Rob
After a pleasant weekend, we spent a full day at Stanford yesterday, where Rob had another round of blood tests (normal), an appointment with Dr. Wakelee (routine), and his second round of chemo (so far, so good). After the neutropenia incident, the trial protocol mandated a reduction in the dosage of docetaxel, so hopefully the side effects will be reduced and he will avoid more visits to the ER. Additionally, to bolster his white count / immune system function, he will be getting a shot of the white blood cell booster Neulasta, tomorrow.
Rob’s cough has been returning, which we hope isn’t associated with the tumor being on the move again. In three weeks, he will have another CT scan, which will tell us whether he has had a response from the docetaxel. He is also shedding his hair rapidly now, and we’re on the verge of shaving it all off. To prepare for hair-loss, Rob received a cool Brown University knit beanie from Marnie and Scott, with a note that stated, “While you are getting your PhD in Grim Reality from Stanford, I hope you will always remember where you got your BA in Happiness.” The hat is starting to come in handy!
Enough medical news for now — things are under control, and Rob is getting the best care possible. We are thankful that we live in a sophisticated area with great medical resources — otherwise we would be traveling constantly to faraway hospitals. We are also very, very thankful for our families and friends who have supported us in so many ways over the past year!
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.
