Kevin Berry is an 13-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, 

. He lives in Central Florida with his wife and adult children.

Kevin Berry

Every cancer survivor remembers D-Day in grotesque detail. The look on the doctor’s face, the ice-cold shock filling our veins, the first words said in the parking lot afterwards. The other thing we all do within a couple of hours is to consult "Dr. Web." This is also known as the Internet.

We remember going to our computer and searching the term: “survival rate” for our specific cancer. In 2005, my results said: “Mantle Cell Lymphoma (MCL) is an incurable subtype of Non-Hodgkin Lymphoma (NHL). Chemotherapy usually results in a response but unmaintained remissions are short and the median survival is 3 to 4 years.” Grim news. Even back then this was not really true.

MCL was a recently identified and little understood disease then. Most scholarly articles and “popular” sites (such as the Leukemia and Lymphoma society’s page) used these identical words, obviously copied from each other.

Researching current scholarly articles, especially from Europe, showed that the three-to-four-year survival rate was “old news.” Cutting-edge research was being done in Germany, which moved to England, then to Canada, then to the U.S.  The information in peer-reviewed, publicly available articles was quoting three-to-six-year-old data. In fact, by mid-2006, many new treatments in Germany were showing promise and the median rate of survival was over eight years. While eight years isn’t a lot more encouraging than four, it was moving in the right direction.

I was fortunate that one of the leading MCL researchers in the world was at the closest regional mega-cancer center. Due to the rarity of the disease he saw few new patients. He spent a lot of time with us explaining the progress of current treatments. “Your goal,” he said, “is to get into remission, to give the science time to catch up to you.” There should be new treatments available to me if or when I fell out of remission.

He was right. I’ve had MCL three times over the last 13 years. Each time, when I needed it, new drugs and treatments were available to put me back into remission. There’s already a very promising procedure being used if I relapse a fourth time.

Dr. Web is a pessimist! Things may not be as bad as you read.

This article boils down to a few key points:

Don’t believe everything you read on the internet. Especially popular articles. Even articles in scientific journals can’t be seen as definitive, since the purpose of them is to promote debate and discussion among researchers

Don’t believe the percentages. These are averaged over all ages, overall health, and decades. Since most cancer patients are very old, the survival rate for middle aged, or young people, are 

, according to the National Cancer Institute.

If any popular article about your cancer is more than a year old, it’s obsolete. Scientific articles might be accurate a bit longer. Remember, major conferences about your specific cancer happen at least yearly. That means a 3-year-old article is suspect

Don’t automatically trust your local, general purpose oncologist. Many do a yeoman’s effort keeping up with progress, and (hopefully) research your particular kind of cancer. But with hundreds of cancers, (

 alone, up from 40 a decade ago), there is no hope they are an expert in your cancer. If you have one of the “Big Three” (breast, colon, lung) there is a large body of knowledge and well-understood treatments. 

, for instance. There are only a handful of researchers worldwide. Getting seen by a specialist for your specific cancer is a key recommendation for new patients.

Ask about genetic typing for your cancer, no matter what kind you have. Cancer is a very individualized disease, and there may be as many kinds of cancer as there are patients. There are often multiple treatment choices and genetic testing may guide you into the best choice.

 site. I also encourage readers to visit the 

 site to learn about registering as a potential stem cell donor.

Articles

Surprise! You can’t believe everything you read on the internet!

Paging Dr. Web

Throughout my 13 years of fighting mantle cell lymphoma, I've had spent lots of time waiting: short-term waiting, while lying on a scan or radiation table; medium-term waiting, those long hours between appointments at the big box cancer megaplex or doing time in hospital beds; long-term waiting, for remissions to come, or remissions to fail. During the waiting times I read, I nap, I stare blankly at the ceiling. Often, though, I just think.

One of the things I think about is the future. All cancer patients know we have two futures: One where things go well, and one where they don't. The good kind are in our heads during the happy days with family and friends, or when treatments are going well. The other kind happen late at night, or when the pain, side effects and prognosis are tearing the hope from our souls.

I've spent a lot of time thinking about and studying techniques of visualizing the future, and how it can truly affect patient's outcomes. This may sound like pop psychology, but it can really help with emotional stability, keeping a positive attitude and even speed up healing. Medical professionals tell us that people can't necessarily will themselves to live, but they surely can will themselves to die. My own experience supports this. I'm alive today because of cutting-edge medical technology, highly professional medical care and an amazing support team. And, to a great degree, because I've been able to visualize a positive future. Through my studies about how human beings think, make decisions and generally move through life, I've developed a way of powering through difficult times. I use it not only with cancer, but with running long races, and in tough work situations and even with home improvement projects.

Here's how it goes. First, imagine the worst. Invite yourself to the pity party we all know we want to have. Tell your story like others might, putting the worst possible interpretation on it. List the ways your situation has diminished your life, your family, your friends. Give yourself permission to mourn the life you could have lived, if it wasn't for the cancer you never asked for, and don't deserve. It's OK to have these thoughts. They are real, they are happening to you, and they affect your life. Then, wrap this story up into a neat, pitiful bundle, put it in a box and then bury it deep in a place you'll never show anyone. Cut yourself loose from this narrative, and even if you've cried a bit, give yourself permission to end the mourning and move on.

Next, imagine the best. Put aside modesty and humbleness. Since you'll never tell this story either, you don't have to worry about what people will think. Go back to your childhood, when you were encouraged to play super hero games. Look at yourself with the admiration others use. Keep score. Count up your infusions, your surgeries, your radiation treatments. Estimate the number of blood draws you've endured. Celebrate the way you've managed to live a good life despite the horror of your illness. Write the documentary film of the inspiration that is you. Allow yourself to see your inner hero. This story, you don't box up. Keep it close to your everyday life.

I'm not saying that you should strut around, praising yourself loudly and thumping your chest. Part of your story needs to include the modesty and humble, gentle attitude that exemplifies true heroism. Make that part of your story, also.

Remember, this is real. The bad times, the good times, and the way you respond to them are happening in real time, in real life. If you see yourself living the good future, influencing the world around you in a positive way, it just might happen. And even if it doesn't, you and your circle of influence will be better off for having tried walking the way of the hero.

's site, I hope you'll visit my Taking Vienna site. I also encourage readers to visit the Be The Match site to learn about registering as a potential stem cell donor.

One of the things I think about is the future. All cancer patients know we have two futures: One where things go well, and one where they don't.

The Hero Inside Every Cancer Survivor

, chances are you've lived the horror of Day One, which many call Diagnosis Day, or D-Day. You or your loved one haven't slept, haven't eaten and probably spent the day on the phone with family members. D-Day feels a lot like the day a parent or spouse dies. You move in a daze, dealing mechanically with the body's minimum functions and numbly interacting with others who are just as shocked as you are. And also … the internet. A huge mistake we all make.

Day Two may mean follow-up appointments, dealing with your job and entertaining an endless stream of well-meaning visitors, hosting them when all you want to do is curl up in a ball and disappear from the world. Daily life is still a minimal function —eating a little, drinking a little, bathing, getting dressed. Your higher brain functions are alternating between "fight" and "flight," with occasional visits to the land of "this just can't be real."

Somewhere around Day Three many of us experience a shift into action. We enter the "cancer whirlwind," scheduling port installations, evaluating options. Making plans for work, travel and child care. The future begins to creep in, and after discussion with oncologists we begin to have a vision of the next month's events and schedule. Most importantly, our brains' higher functions start to kick in.

I know what I'm talking about. You see, two years ago, I had my third Day Three. On June 22, 2016, I relapsed after my second transplant. I can say that the third time wasn't any easier, but I did move more smoothly through Day One and Day Two. By the time I got to my third Day Three, my brain was going full throttle. Notifications were done, my blog was updated, plans were made and hope was returning.

But I still cried a lot. Moving into the action phase is like putting a band-aid on a gunshot wound. It gives the appearance of accomplishment, but really is just a tiny step towards coping with the horror. The numb feeling is still there, vaguely masked by action. You see your family hurting, your friends struggling with what to say, and you may find yourself cast into the role of comforter and hope-giver.

The best advice I got on my first Day Three was this: "remember, for most cancers, you've got time. Time to fight, time to cope, time to heal. Look ahead to Year One, and think about how quickly years fly by."

So, if you're reading this on your own Day Three, please consider this advice and try, hard as it may be, to see this as the third day of Year One.

Moving from shock to action is hard, but it's critical to surviving cancer

Diagnosis Day Three

Hi. I'm Kevin, and I'm a person who runs. I am NOT, however, a runner. This may not seem like much of a distinction, but to me it represents opposite ends of the athletic spectrum. A runner lives to run. I run to live.

As a 13-year, three-time survivor of mantle cell lymphoma, I've made a life decision. My goal, at 60 years old, is to be the healthiest 90-year-old cancer survivor in history. Right now, I'm in remission, and hopefully, this time, fully cured. It's become pretty obvious to me that, either way, the healthier you are, the better your odds. So, running is my least worst option for fitness.

"Least worst" is a euphemism for "I really, really hate it until after it's over." I like the culture of running, and I truly love the people. I enjoy the first half mile or so of a race. The middle part, I just gut through on pure cussed orneriness. The last third, whether it's a three-miler or a half marathon, is when my little voices go to work.

"Go ahead, walk a while. Nobody will ever know."

"Quit now. It's no big deal, and nobody will judge you."

And worst of all: "Everybody knows you've got cancer. You're a hero just being out here. You've got the best reason in the world to shut it off now."

About the time my evil inner spirits really start to drag me down, I call on my invisible coaches. Let me introduce you to Dave, Dan and Gary.

Dave was a "virtual friend" I met over the internet through a mutual interest in combat robotics. He became one of my magazine writers, and encouraged me through my first round of cancer. Then he was diagnosed with severe cancer himself. Dave is the first person I spoke with from diagnosis, to the terminal stage, until very shortly before he died. During this time, I was in my first relapse. Dave handled his illness, and ultimate death, with grace, courage and dignity.

Dan was a co-worker. We both had cancer at the same time, went to the same meetings, but never talked about it. Instead, we chatted about work and running. He proudly wore a Marine Corps Marathon shirt, and I was very envious of him. He relapsed again and again, and finally slipped away, working and socializing with his friends right up to the end.

Gary was also a co-worker, but one I never met or spoke with. We worked in different groups, and only found out about each other by winding up in the same transplant center at the same time. Gary was about three weeks ahead of me in the stem cell transplant process, and we kept in touch through mutual friends. After an apparently successful transplant, after moving from inpatient to outpatient status, he suddenly died from complications, with just a few days warning. He died at peace, at home, with family and friends. I feel a special kinship to Gary. We ran the same path, but went to different finish lines.

This next part is going to sound really stupid, and maybe even weird; but hey, it must work for me. I routinely turn in what's called "negative splits" meaning I run faster the last part of a race, instead of slowing down like might be expected.

When I hit the wall, towards the end of the race, I think about one of my coaches. I use their name as a chant, or mantra, or even sometimes, as a cheer. I feel like by naming them, I'm running for them, since they can't run for themselves. After I've honored all three, I turn to my fourth invisible coach: me.

We've all heard about visualizing a positive outcome to motivate ourselves. I turn that around and visualize how horrible it's been in the past. I remember lying in hospital beds, too weak to move, visualizing then how I'd run in the future. The chute coming into view, the arch over the finish line, leaping over the timing mat. Whether you call it visualization, or self-shaming, or some sort of bizarre self-hypnosis, it works. Remembering myself lying in bed visualizing myself racing to the finish, bootstrapping my future using my past, is a trick I use over and over again.

We all have heroes. Some are living in this world, some in the next. In times of stress, or discouragement, we need to listen carefully. Their voices live in our minds, and our spirits. And remember, you are someone else's hero, even if you don't always feel worthy. All we can do is run hard, and finish the race with gusto.

Besides the other wonderful blogs on CURE’s site, I hope you'll visit my 

Sometimes the people who inspire us are closer than we realize.

Kevin Berry

Paging Dr. Web

The Hero Inside Every Cancer Survivor

Diagnosis Day Three

My Invisible Coaches

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