- Diagnosed 2008
- Revlimid® (maintenance)
- Ixazomib (since 2010)
I have two babies, but no children.
Now before you get to asking yourself how I managed that, let me point out that they each have four wheels. And one has metal dashboard. But they are babies, in fact we call them Baby One and Baby Two.
I’ve always loved driving. I love the feel of the vehicle on the road. I love testing myself and the car, finding out what we’re both capable of. But I’m getting ahead of myself, because The Babies came along later for me. They’re part of the normal life I’m getting back to, because I now have a life again after cancer.
I’ve always worked 60 to 70—sometimes 80—hours a week. My wife, Linda, and I came over to the US with my job from England in the 90s. Along the way, we became Yanks ourselves, and even root for the Patriots, when we’re not cheering my hometown team, Manchester United. Now Linda, she’s very competitive—in fact, she’s happiest when she’s beating me at something–so we kept pretty lively on the weekends too, trying out American things, like skiing, and sticking to some of the British basics, like golf and darts. I was never tired—and if I ever was, I just put it down to overdoing it.
So when my doctor called to say I was a little anemic, I put that down to the diet I was on at the time. But we knew we were in for something else when we walked into the specialist she’d recommended and saw a sign that said, “Welcome to the Cancer Ward.” We knew nothing about multiple myeloma. Had never heard of it. And once we’d Googled it, we were sorry we had. The outlook was that bad, back then.
We went straight out to dinner with a fellow cancer patient— of course, we didn’t know he was a fellow cancer patient when we’d made the plans. Well we raised our glasses and vowed that we would face whatever was coming our way as positively as possible. I was determined not to let anyone down: Linda, my friends and work colleagues. I’d only missed two days in 25 years, and one was due to a ski injury . . . . but that’s a different story.
I was recommended for transplant. Of course, that was no easy process, to say the least. But after all of that—including complications that nearly put me in the ground before my time—it didn’t take. I never went into remission.
The doctor wanted to do a second transplant, but I knew by then, that second transplant numbers were 50%–and not in the right direction. Me being the stubborn guy I was, I insisted on a second opinion. That didn’t go over well. I went for one anyway. I was lucky enough to end up at Dana Farber, where Dr. Richardson said there were other options. I was on Revlimid maintenance at the time. He said we should see how that went.
Well after awhile, it didn’t. So he told me about the trial for a new drug. It was 2010. Back then, we called it 9708. It wasn’t even ixazomib yet.
But before I went on the trial, I happened to see my original doctor, the one who wanted me to do a second transplant. He told me that if I went with medication instead of the transplant, I’d only have two years to live. That was, of course, very frightening, for both me and Linda. But I decided that however much time I had to live, I didn’t want to spend it in a bubble.
And ixazomib is working! It’s keeping my myeloma stable. Ixazomib is my savior. It’s turned myeloma into a chronic disease for me. But I know that’s not the case for everyone. And I know there’s no cure yet. So I’m grateful to all the doctors and researchers who worked on it, and are working for the next savior. Back when I first started on the trial, I told Dr. Richardson I’d be the poster boy for 9708. And here I am, on cycle 91 standing in front of . . . a poster.
I’ve been on ixazomib 5 years, and it’s not been too troubling. In fact, I was still feeling tired, and I tried to blame that on the drug, but it turned out to be sleep apnea! I’m just getting to know the IMF, but I understand that Dr. Durie says “it’s not always the myeloma.” And I have to concur. As part of that, I reluctantly decided, a few years back, to give up my Harley. I loved riding that, feeling the wind in my hair.
But we found a new love: our Babies. I had always wanted to own and drive old cars. So after diagnosis, we got two: A 1972 Land Rover Series III (that’s Baby One) and a 1989 Jaguar XJS convertible (that’s Baby Two), also known as the Princess. I made another vow: to look after them the rest of their lives . . . and mine.
A couple of years ago, we went to our first Land Rover gathering. It was in a small New England town and it involved camping. But Linda took over. It turns out, we don’t really do camping. We do “glamping.” That’s the more glamorous form of camping. Our bed is off the ground. We have heaters and little bedside tables. And Baby One is very glamorously parked beside us—even though she’s full of dents and dings, because we take her off-road whenever we can find the terrain. An open field. A track. Wherever you can get off the road and into the mud, and ruts and bumps. It’s heaven. But you’d better not go out alone, because you’d feel pretty silly if you got stuck somewhere and somebody had to come pull you out.
But don’t think it’s all roughing it. Baby 2 never sees the mud. Or even the rain. She’s the Jaguar. We only take her out when it’s perfect. And it’s always with the top down.
I also love to drive at the golf course. Linda and I get out two or three times a week. I’m trying to get back down to my pre-cancer score. But whomever we’re playing, we’re really playing each other.
I’m also still working. Work has been incredibly supportive, they even created a “bubble” office for me after the transplant. About a year ago, I whittled my way down to 50 hours a week, and now I’m just three days a week. Because next summer, I’ll be retiring. I could go on working. I probably would have gone on working if I didn’t have myeloma. But that’s not why I’ll be leaving. Ixazomib has given me a life extension. I intend to enjoy it, not work through it.
Next summer will also be when I complete cycle 100 of ixazomib. We’re celebrating by glamping our way across the country to a national Land Rover club meeting in Moab, Utah. There’ll be hundreds of Land Rovers there, most of them old. We’ll be doing some off-roading, as well as “green laning,” that’s when a caravan of us drive on terrain that isn’t quite off-road, but isn’t exactly meant for driving on. We’re likely to come back with a few more dings—hopefully, just on the car.
There’s another thing I said to Dr. Richardson back when we first met. “All you have to do is keep me alive until there’s a cure.”
Well because of ixazomib, Linda and I no longer ask, “Will I have a retirement?” Now we ask, “Where will we spend it?”
We talk about moving someday, to a place on the water. Hopefully somewhere warmer than New England.
Wherever it is, I’ll still be driving with the top down and the wind in my hair.