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Scuttlebutt: Ken Legler Update

(Ken Legler is known as the sailing coach for Tufts University, a premier race officer, and of late, a fighter in his personal battle with cancer. Ken had to forfeit his annual shift as PRO at Acura Key West Race Week 2006 to attend to his health, and below is a report that he submitted recently to family and friends. We felt that Ken's influence in the sport deserved a broader audience, so with Ken's permission, we have provided an edited version below. Additionally, we found Ken's details of his experience too inspirational not to share.)

February, 2006: As many of you are aware, I'm moving right along in my cancer treatment for stage IV squamus cell cancer in my throat and neck. Phase One includes three rounds of aggressive inductive chemo. I'm halfway through the second round; the third round will start March 1. Two weeks after I'll be re-evaluated before starting Phase Two. Given how well my neck tumor has responded to chemo, I'm pretty sure Phase Two will start at the end of March or early April and include six weeks of IMRT radiation with three weeks of chemo at the start. May will suck and June is all about recovery. Probable minor surgery will be needed in July to remove the remains of my right lymph node and to remove my &*$# feeding tube.

Side effects have been rolling and manageable and have included fatigue, lip sores, headaches, digestive issues, lack of taste (but how much taste did I have before), loss of hair (boy, is my head ugly) and minor amounts of bleeding in soft tissue areas. Then there's my feeding tube, which I still won't need until April. I actually do use it now, for some awful tasting Chinese herbal tea, meant to improve my immunity through all this. One morning last month my feeding tube starting pulling in a centimeter at a time. It's marked up to 12 centimeters and that last mark was disappearing inside. I pulled on it but it pulled back in. I suddenly realized I was involved in a lightweight tug-o-war battle I needed to win. I did, and then taped the tube to prevent such future mischievousness.

I'm on my way back up until round three of chemo. Given all the crap I went through before chemo started, including tests and surgeries, I figure fast approaching April 1 could be my halfway point. In the meantime I can work and intend on attending my 29th Trux Umstead Regatta at Navy in late March. Depending upon radiation schedules and what my body says, I may also attend our team spring break training trip at St. Mary's.

It is amazing how much support I am getting. I have undergrads, alums, Tufts Athletic Dept., race management friends, Boston Sailing Center frostbiters (where I still work winter Saturdays), other coaches, old school friends, and even random alums from other schools recalling how I helped them with their college sailing. More important, I have wonderful kids, an ex who cares, and a wonderful girlfriend (and her happy and bright seven-year-old, and a gorgeous and affectionate cat) who have all been there for me. It is true that people with great relationships live longer, and that will certainly be true in my case.

Support has come in many forms. Among the biggies… Dave Perry strongly encouraged me to get a second opinion. As I was short on time with all the appointments, my girlfriend Lisa spent hours and hours on the phone making the second opinion happen. It did, and my new treatment plan gives me much higher odds. Also, the IMRT radiation that follows nine or ten weeks of chemo is much less damaging to other organs than the original plan. I'll likely save my salivary glands, teeth and perhaps a few other things I might have lost.

The new plan takes place at Dana Farber Cancer Institute in Boston, a state-of-the-art center for treatment and research. They have everything including specialists for every side effect. I have seen a radiologist, an oncologist, a nutritionist, specialized nurses and even a counselor. It's even easy to get there now thanks to the Big Dig.

I also got a Suduko book, 50 cards, hundreds of supportive e-mails, brownies, hats, and hospital visitors. Tufts Captain Emily Randall’s mom knitted me a hat from "the softest yarn in the shop." I've been toasted from an A-Scow crew in Switzerland and a Swan 45 crew in Key West. Old friend and survivor Moose McClintock (who every sailor knows) sends me a joke a day, all good but none I can pass along. I have received cash, and have opened a separate account to either use it if needed or donate it to Dana Farber if not. Speaking of financial support, my health insurance is covering me fully with virtually no co-pays, good deals on medication, and even cheap parking. North Shore Cancer Center, where my first plan had me heading, has great doctors too, and would have been convenient to my home in Reading with free parking, but Dana Farber is where it's at for the very best care there is.

Many seem to think my positive attitude will help immeasurably. I wasn't always this cheerful. Over the past ten years I have had the good fortune to coach some students who seem to possess happy genes. They include, but are not limited to, Jen Provan '01, Aroline Seibert '01, and AJ Crane '04. When Jen e-mails aaaahhhhahahahahahaaa, I can hear her laughing and it sounds better than music. They make others around them feel better and I want to do the same. Due to so much exposure to students like them, I am changing for the better.

Advice has come from many wise people as well:
* From Tufts President Larry Bacow: “When others offer help, find ways they can” (I'm trying but so many have...there's still time however).

Advice has come from many wise people as well: * From Tufts President Larry Bacow: “When others offer help, find ways they can” (I'm trying but so many have...there's still time however).

* From survivor Waddy Garrett (and dad of former Navy racer Parker): “They take you to within two steps of the funeral parlor, be accurate with your medications.”

* From survivor and former Tufts student Taylor Fallon '03: “Eat what makes you feel good” (that would be dark chocolate but she liked milkshakes and I'm trying them).

* From Dave Perry: “This is not an exact science, get a second opinion.”

* From survivor and sailing's number one videogragher Gary Jobson: “Recovery is not linear” (he should know, his was the hardest for a survivor).

* From former Tufts Athletic Director Rocky Carzo: (Actually I can't tell you what he said, it's a man's thing, let's just say he is a man of wisdom).

Meanwhile Tufts is paying me throughout. First they asked if I had taken many sick days this past year. Given that I have worked through Chicken pox, pneumonia, etc. over 25 years, I qualified for the max. But then I sailed through mono as an undergrad, something I would be fired for if I advised my own students to do now. I just can't get enough of this college sailing stuff; it's really fun. Premiere Racing Inc. (Key West Race Week) even paid me for not being there (hmmmmm). And who says there is no such thing as professional loyalty.

We're hiring a temp coach for this spring but they're having a hard time getting me out of here. We continue to practice and we're looking forward to training, minors, majors and championships. High school junior class recruits are pouring in and we near decision time on seniors at Admissions.

Beyond this spring I plan to do a little sailing this summer. I've been invited on a Swan 45 in July and plan to compete in the Blind Nationals and Worlds, all in Newport, RI. I also plan to work in August with Cotuit Skiff 100th anniversary regatta, A-Scow inlands, and Tufts pre-season. Come September, we'll have more floats (I hope) and all 24 Larks going everyday except Mondays.

Thanks so much for caring, it is helping,

Ken Legler

** Click here to read an updated report that Ken submitted in December 2006.

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