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Sorry about the long delay between postings. The last two weeks have been a blur, but things are almost back to the ‘new normal’ now.
Our trip to New England was, as always, too quick – but it is starting to look like we’ll be spending a lot of time there later this summer. The primary reason for our trip was to consult with Dr. Lecia Sequist at MGH about ‘Plan E’, i.e., drug options when my current chemo, Gemzar, is deemed ineffective. Leslie explained the results of that meeting in the previous blog post, and nothing much has changed since then. Unfortunately, I’m still coughing a lot — which may mean we’ll be back in New England sooner rather than later.
We almost always always fly on Southwest Airlines into Providence’s Green Airport, which gets my vote for the coolest airport in the country. It’s small, the lines are short, there are two Dunkin’ Donuts (yuck!), and — best of all — there is a cool Mount Gay 30 sailboat, rigged and going upwind on port tack, permanently on display in the lobby. It’s a fitting welcome to the ‘Ocean State.’ Marnie and Scott live about ten minutes away in Cranston, RI, so we started and ended our trip there, also as usual. We enjoyed seeing both my niece Katherine, who just graduated from Brown that weekend, and nephew Philip, also a recent Brown alum. Philip has been working in NYC for the last two years, but will be moving to Washington, DC, this fall to attend Georgetown Law School. Katherine, a Literary Arts major (writing, journalism…), is looking for a job, and we don’t envy her that task in this economy. They’re both terrific young adults, and we are all very proud of them!
Rob and the Young family - Marnie, Katherine, Scott, and Philip - all redheads and Brown grads!
We also stayed at three other excellent B&B’s during the week — my Mom’s house in Mystic, CT; the Barn in Fayston, VT (my sister’s ski cabin); and Stephen’s ‘farm’ in Leverett, MA. New England is green and lush at this time of year, as well as humid and buggy. Leslie is still covered with black-fly bites, while I went unmolested — apparently they don’t like people on chemo? One other place we visited — Northampton, MA, where Stephen’s girlfriend Betsy lives — is worth mentioning. We ate several meals on the main drag there and decided that Northampton, home of Smith College, has got to be one of the people-watching centers of the universe. We felt old and almost out of place there, as none of us sports tattoos, dreadlocks, piercings, combat boots, purple hair, etc.
Marnie, Rob, and Scott at the now overgrown beaver pond - Fayston, VT.
The New England Peace Pagoda - Leverett, MA.
We’ve been home for almost a week now, and in that time I have had seven needles jabbed in me for various reasons, including a gigantic one for my liver biospy. That tissue is back at MGH by now, undergoing genetic sequencing to find out how the cancer has mutated in the last 19 months (funny to think that part of me got on a plane and went back East without the rest of me!). I’ve also had another round of chemo, without the fever this time, and been back to Stanford for my one-month post-criz follow-up visit with Dr. Wakelee. I’ll miss going to Stanford, which was more of a resort than a hospital — but it’s on to Harvard now!
We’ve also seen a lot of friends lately, including the ‘PV People’ for lunch at our house on Sunday. Mike and Lowe, Pam and Mark, and Lou and Laura all have deep connections to Puerto Vallarta and all know each other from down there. Mike, one of the original Yucca crew, and Lowe are full-time residents, while Pam and Mark, who Leslie met on a dive trip in the Solomon Islands years ago, split their time between the Bay Area and their house in PV. Both couples have been incredibly generous over the years in letting us crash with them down there! Lou and Laura, who sold me their orange Santana 20 Urban Guerilla back in 1980, have been cruising and racing their Beneteau 42 Cirque in Mexico each winter for the last three years, using PV as their base. It was a great afternoon with old friends, filled with laughter and stories.
Mark, Rob, Leslie, Mike, Lowe, Laura, and Lou (Pam is behind the camera).
With the Sugarbush ski area in the background, this is an iconic barn in this part of Northern Vermont.
We’re back from a great trip back East to visit Rob’s family – more on that later. Yesterday we met with Dr. Liu to review Rob’s most recent CT scan, taken on Tuesday. The good news is that cancer in his abdominal lymph nodes is now undetectable. The bad news is that the primary tumor in his right lung has grown slightly, indicating that the current therapy isn’t working as well as it was previously. All Rob’s blood and urine tests were in their normal ranges except for the CEA number which has risen slightly over the past two months – another indication that the cancer is progressing. This progression means that we are now, with Dr. Liu’s help, working diligently to get Rob into the Pfizer crizotinib trial at Stanford Medical Center.
I’ve been trying to stay two steps ahead by doing all the research necessary to get Rob enrolled in the trial, and since he tested positive for the ALK mutation (crizotinib is specifically targeted at these mutations) and is in otherwise very good health, we are hopeful that he will meet all the criteria. This is not a slam dunk. Only about 300 people will be enrolled in the trial world-wide, and Stanford has 8 slots (Rob always wanted to go to Stanford!). The trial is a randomized, open label trial of crizotinib vs. the current standard of care (pemetrexed or docetaxel). This means that a computer randomly decides which arm of the trial each patient is assigned (the new drug or the control) – i.e. there is a 50/50 chance of getting the crizotinib. If a patient’s cancer progresses on the control arm, they will automatically be put into a Phase II trial that guarantees them the crizotinib. Confused? So were we when we first started researching all this. There’s a good overview of crizotinib and the trial by Dr. Camidge at this link.
Other than knowing that the cancer is again growing in his lung, Rob is still in fine health and able to do the things he enjoys, such as sailing this past weekend on Yucca in the Jesscia Cup (they won) and hiking again now that his ankle is better. His immune system is healthy enough to allow him to go out in public and live a normal life, though he does tire more quickly than before. Unlike many cancer patients, he is neither bald nor emaciated, and his spirit is good. Though disappointed that the current chemo regimen (Alimta and Avastin) seems to have become ineffective, we are convinced that getting on the path to crizotinib is the best shot we have. We’ll keep this blog updated more often in the next few days and weeks as we learn more.
On a happier subject, we had a terrific visit with friends and family last week in New England. It was a bit of a whirlwind, going between four states and four different houses in eight days. In order, we stayed at Marnie and Scott’s nice new house in Cranston, RI (in a section of mostly Victorians near the water called Edgewood) and enjoyed seeing Dan and Kim in Newport for dinner; Mom/Marge’s house in Mystic, CT; Marnie and Scott’s cabin (‘The Barn’) in Fayston, VT with the family; Stephen Kavanagh’s house in Leverett, MA; then back to Mystic for the final night. Lots of packing and unpacking!
Falls colors at the beaver pond, a short walk from the Barn.
Scott, Rob, & Marnie at the beaver pond.
With two woodstoves and a fireplace to heat his home, it's no wonder Stephen won the firewood chopping contest!
Betsy, Stephen, Leslie, & Rob at the Barn.
Rob, Mom/Marge, Marnie, & Scott in Vermont.
We had a lovely stay with Marnie and Scott at their new home in RI.
Rob envies Stephen's shed/chicken coop.
The leaves were somewhat muted in color this year (I’m only showing the most colorful images), something to do with big rains before we got there. Still, it was wonderful to see everybody and to be back East for awhile. Just as we have decided there is no place better than the Northwest for summer, there is no better place than New England during the fall!
An old maple syrup shack in Vermont.
Just another scenic Vermont barn.
Leslie and Rob shop for pumpkins in Deerfield, MA.
Fall colors in Vermont
A beautiful fall day in Vermont.
