Carolyn Higgins – The Closer

IMF ASH Reception 2015

Carolyn Higgins

Diagnosed 2007

Treatment

  • Velcade ®
  • Elotuzumab+Revlimid®+ dexamethasone (2009, in Phase I)
  • Daratumumab+pomalidimide+ dexamethasone

“THE CLOSER”

I never met a sale I couldn’t close. I was one of those people who loved outside sales. I craved the challenge of the cold call. I used to put 500 miles a week on my car and think nothing of it. Don’t put me at a desk making calls! I would much rather be out in the field!

So when I encountered myeloma, I knew I was going to close on it too. And when I met my myeloma doctor—the one who was going to get me into trials—I made a deal with him. “You get me a cure, and I’ll make you rich and famous.” We shook hands on it. I’ve never looked back.

Now, of course, it wasn’t that easy. And I have to confess I’ve been guilty of some denial along the way. In fact, when my son went with me for a second opinion at Dana Farber, he had to be convinced. “You mean, my mom really does have myeloma?” he asked the doctor. I’d been so determined to play it down, I had him convinced it was no big deal.

But I do know it’s a big deal. When I think about what myeloma does to people, it makes me so mad! It’s not like other cancers where, at some point, they may say, “You’re free.” Myeloma keeps coming back.

It’s just that I’ve never let anything get in my way. I was divorced after 20 years of marriage and with three almost-grown children. Then, one month after my divorce was finalized, the company I was working for laid me off.

I was devastated. But I realized I didn’t have time for that. It was the height of the “season” in South Florida. I marched right over to the Marriott. I had no hotel experience. They hired me on the spot, anyway. I started as a secretary and, over the next 18 years, and many geographical moves. I eventually worked my way up to a managerial position.

But before then, I had found my niche: selling. I started in group sales, re-booking corporations to return to the hotel in the scary days after 9/11 when no one wanted to put their executive teams on a plane. That’s how I got started doing cold calls. And I loved it! I knew that, even though I was selling for 450 hotels, every one of the people working there would make sure my customers had a great experience. I could believe. So I could sell!

But being a Type A, selling all day wasn’t enough for me. I got into race walking. I even took up 5K races, and soon was winning every one of them in my age category.

By this time, I’d left the Marriott. I was doing purely outside sales for the furniture company we’d used at Marriott. I loved going out into the world to bring people into my world, where I knew we could meet their needs. I loved knocking on a new door. Making a new client. Taking care of the ones I already had.

But suddenly, I just didn’t have any energy. I’d come home from work, make dinner and go straight to bed. I couldn’t even walk a half mile without pain! Forget 5K! And weekends were spent mostly sleeping. My primary doctor referred me to an oncologist. An oncologist! But she told me not to worry. It was something called MGUS and could stay just that for years.

Within 6 months, it had kicked over to full-blown myeloma. It was 2007. I had just lost my brother. I had kids but they were having kids themselves. I had no support system. I sat in the car in the parking lot when he told me, and cried again, one last time. Then I marched right into work. Told them straight out what was going on, and said I wanted to see no pity in their eyes. Work went on as usual.

So, I went on Velcade, but that didn’t do it for me.

By that time, I’d found Dr. Lonial. He suggested a stem cell transplant, but I’d done my research and felt that was not the direction I wanted. That was when we shook hands on the deal I made with him. There was something new, he said. A monoclonal antibody called elotuzumab. Did I want to be in a trial?

“Sign me up!” I said. It didn’t matter that it was straight from the mouse to me. It could be the one. And it was. For five years.

During that time, I had to finally quit my sales job. Too much running around to public places, hugging my clients, giving them a kiss and encountering who-knows-what in crowded lobbies. I hated to leave. I loved working. BUT it did leave me time for the other love of my life: Grandchildren! I have seven of them. One of the reasons I’d finally gotten out of the hospitality business was so that I could: to have weekends free to go to their birthday parties. That was before I had myeloma. And now, because of these new treatments, I’m getting to see them grow up. I get to have sleepovers and attend their sporting events.

When I was diagnosed, I was so ignorant. I didn’t even know there were different types of cancer doctors. But I’m like a sponge. I started bringing boatloads of stuff home, all the brochures, everything I could pick up at the hospital. I don’t even know how I found the IMF, but once I was plugged in with them, they’ve kept me informed. And it’s not just with things to read. I get to talk to all the top myeloma doctors in a personal setting. They’re myeloma encyclopedias, and it’s almost like they’re sitting down with me at my kitchen table.

But last year, my numbers changed. I had to come out of the Elo trial. I was surprised! I’d been so certain this was going to be the answer! I wouldn’t hear “no.” But luckily, there was something else new for me to try. Another trial. Another monoclonal: daratumumab. I on Dara started in January, and I’m doing great.

Back when I first got sick, Mr. Marriott gave me a call. During my time at Marriott, I was coordinator of a private beach club that was integrated into the hotel’s beach area. I increased membership signficantly while there. One of the highlights was the time Mr. Marriott and his family spent with us every winter. He’d heard that some of my former Marriott friends and I were planning a reunion. I had just been diagnosed at 62. I didn’t think I’d make it to 70. I wanted to be with these wonderful friends while I could. Well, he told me he would he would take care of it. He reserved two oceanfront cabanas for us, and I even found a gift basket in my room! That was Mr. Marriott.

You see, one of the reasons I could do so well in sales was that I had the backing of a great organization. That gave me the confidence to sell to anyone. I knew what I had behind me. And that gives me the confidence to stand here and talk about my myeloma: I know that all the doctors and all the researchers are thinking, “I don’t want to lose one more person to this disease.” I know they’re doing it for us.

I was on two trial drugs, and now both of them are approved! I know that so many drugs get tested and they don’t end up making it. And all of that research is for naught. I’m just thrilled beyond belief that my two did! Look at what this community has achieved.

So once again, I’ve got the backing of a great organization. The whole collective of myeloma researchers, working on that next great treatment that will get us just a little farther along. And the IMF, closing in on a cure. With all that knowledge and talent behind me, how can I fail?

I got 5 years out of elotuzumab. And the drug I’m on now, daratumumab, didn’t even exist when I started. I’m buying my time, getting my cure in bits and pieces. I did make it to 70. And I plan to keep going. I’ll always have my hand up for a trial. So just keep me in mind!

The other reason I could close so well, is that I learned from crack sales people. Between Marriott sales school and working under the best-of-the-best, I picked up a few things. And one of them is: Don’t give them the opportunity to say no. A good salesman never hears “no.” The other is: The customer’s always right. So, myeloma researchers and docs, I’m the customer this time. I’m not hearing “no” and I’m always right.

So let’s close on that cure. Deal?