My time in the lymphoma club

Editor’s Note: Tom Goldstone is the executive producer of CNN’s “Fareed Zakaria GPS.” He sits on the board of the Lymphoma Research Foundation. This is an open letter to Lloyd C. Blankfein, CEO of Goldman Sachs, who has been diagnosed with lymphoma. The views expressed are the writer’s own.

Dear Lloyd,

I woke up Tuesday morning to learn of your diagnosis. I’ve met you a few times when you’ve been on CNN, and my immediate reaction to reading the news was one that you might find odd. I wanted to reach out to you and say, “Welcome to the club!”

Let me explain: I was diagnosed a little over two years ago with lymphoma, too. I was crushed. I was 41 years old at the time and considered myself pretty invincible.

Yet, suddenly, here I was staring into a doctor’s eyes as he said those words that I never imagined anybody would say to me: “You have cancer.”

I felt scared and I felt alone. Sure, I had great support from my wife and kids, my friends and family, my colleagues and many others. Indeed, as I type this, I’m getting choked up thinking of all the kindnesses extended to me while I was sick.

But I still felt alone. Why? Well, in large part, because I didn’t know anybody who had had lymphoma. It seems everybody knows somebody who’s had the “big” cancers (breast cancer, prostate cancer, etc.) but lymphoma? When I was diagnosed, the only person I could think of who had had lymphoma was some guy who played for the New York Giants in the 1980s (and I couldn’t even remember his name).

How was I going to figure out how to navigate this strange new world? With much of our lives, we have a pretty good road map of how to do it: how to get into college, how to succeed there, how to get a good first job, how to climb up the ladder, how to get married, how to raise kids.

But how does one DO lymphoma?

Well, I found a friend of a friend of my parents’ who had had the disease, and he opened up a whole new world to me.

In my first meeting with him he said something that will stick with me always: “Sorry to hear about your diagnosis. It stinks. But you’ve just unwittingly joined a club of really nice people who are here to help”.

He was right. And, so, that’s why I welcome you to the club of lymphoma, too.

Before, during, and after my treatment I sought out the counsel of survivors. First and foremost, I wanted to know it WAS possible to survive and even thrive.

I know the Goldman Sachs press release said that you had a “highly curable” form of lymphoma. But it’s still cancer, right? It still makes you think about your mortality (or at least it made me think about mine). The American Cancer Society statistics are pretty clear: 80,000 people are diagnosed with lymphoma every year, and 20,000 die from it. So, it’s not like catching a common cold. It’s deadly, serious and deadly serious.

In fact, people like you and me are lucky. Not lucky to have been diagnosed with lymphoma, obviously. But lucky to have been diagnosed with it when we were. We are living in a time of “rapid advance and tremendous progress” in the fight against lymphoma – that’s according to the Lymphoma Research Foundation, an organization that helped me greatly with information and support when I was sick (and on whose board I now sit).

Indeed, according to the National Cancer Institute, the mortality rate for one of the two types of the disease – Hodgkin lymphoma – has fallen by an astonishing 70% since 1975. The NCI says that for the other type – non-Hodgkin lymphoma – mortality has been on the decline since 1997.

We’re also lucky because the treatment has gotten so much better. When I was diagnosed, I expected to spend my post-chemo days and nights in a dark room, moaning from my pain. I certainly didn’t expect to spend those days at work.

But there were few moans and little pain from the R-CHOP regimen of drugs I was prescribed. (I have thankfully forgotten the multi-syllabic medical names for the rest of the drugs, but I do know that the “R” in the cocktail stands for rituximab – a rather efficient eliminator of non-Hodgkin lymphoma that was approved by the FDA less than 10 years ago).

Yes, it’s scary when the nurse has to put on what looks like a full biohazard suit to inject the “red devil” (one of the R-CHOP drugs) into your veins because it could be “extremely hazardous” if any of it gets on her. But, in the end, I could best describe the aftermath of my chemo “infusions” as feeling like a really bad hangover – I was a bit woozy, my stomach hurt, my eyes were a bit sensitive to light, my memories were a little hazy, and I often looked forward to a nap. Despite all of that, I never missed a day of work due to my chemo.

The press release said that you plan the same. I imagine you have a couch or two at your disposal at your office in case you need one of those naps!

That was one of the pieces of advice that all of my cancer “mentors” gave me: try to stick to a normal life; if you can help it, don’t let cancer take over. And that’s one of the pieces of advice I want to pass on to you.

Now, I know you certainly didn’t ask for my advice, and you may or not need it. But I hope by writing this to you, I can also help some of the many others who do not have the resources at their fingertips that you do.

I’m sure I don’t have to tell you about the importance of educating yourself about a disease like this. In fact, you are probably already reading up on recommended treatments, etc. But I wanted to say how important it is to stick to reading from official sources, such as medical journals, and not spend too much time on Internet message boards. It’s hard not to when you’re doing a search online, but I’ve found there’s often a lot of doom and gloom in those places.

The fact is that despite all of the advances in science, the frightening reality is there is so much that is still NOT known about cancer in general (and lymphoma is certainly included in that). I went to four doctors at four of our nation’s finest cancer centers and got two different diagnoses – different in subtle but crucial ways. Since I had been “studying,” I was able to make an informed decision on which way to go.

So you’ll have decisions to make. And you will need to advocate for yourself because cancer hospitals and cancer doctors are just as harried as the rest of our medical profession in this country is today. If you don’t think your doctor is hearing your concerns, speak them again and again until you feel you HAVE been heard.

I’ll end where I began, with community support. When I found these people with whom I now shared a bond, I wanted to hear every aspect of their story – how they found out they had the disease, what their diagnosis was, what kind of treatment they had, how they tolerated it, how they told their kids, how their kids reacted, how they felt when they were done with treatment, what their mindset was today. And they told me every intimate detail, all in an effort to try to make my struggle easier than theirs had been.

It worked.

They were my cancer mentors. For their advice and counsel, their words of wisdom and support, I will be eternally grateful.

I had my last of three rounds of chemotherapy two years and nine days ago (not that I’m counting or anything). And I had my first of 17 sessions of radiation shortly thereafter. In the ensuing two years, I have been thrilled to be able to “pay it forward” – to mentor others, to help new patients in their moment of crisis and questioning.

If I can help in some way, then let me know.

Sincerely,

Tom Goldstone

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