Kevin gives advice for giving advice.
Kevin Berry is an 11-year mantle cell lymphoma survivor and undergoing his third bone marrow transplant. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna (www.takingvienna.blogspot.com). He lives in Central Florida with his wife and adult children.
Over the last 10 years, averaging once every three weeks, I’ve heard these words. Sometimes it’s phrased: “I just found out my ____ has cancer.” This sentence is followed by: “What advice can you give me?”
What a heartbreak it is for anyone to hear these words. Cancer is a horrible disease that smacks of no hope and a shameful feeling that somehow it’s your fault. I’ve developed a quick checklist that I repeat to people when they come to me. I ask you to copy and save this posting, because, sadly, there is a 100 percent chance you will need it sometime. I hope these words help when you are faced with a diagnosis in yourself or a family member.
That’s it. None of these will cure cancer. But, in my own experience, talking to oncology professionals and backed up by numerous studies, if you follow this approach, you will increase your odds.
Activate your network
By the time you hear these words, the panic is already loose in your mind. Try hard to un-panic yourself. Internet sites use broad statistics that make things seem worse than they might be. There are over 300 types of cancer and each has several stages. Plus, you are you, not someone else. Each case is unique and your prognosis is heavily dependent on no. 2 and no. 3 below.
Some other words about “Dr. Web,” the bane of oncologists. Anything posted on public sites could be based on medical knowledge that is at least five years old. In fact, you’ll find the exact same words on multiple sites. So don’t assume that if a public site says “average life expectancy is four years” that a) it’s still true this year and b) that it will be true for you. The studies backing those numbers may have said something like “the median life expectancy is 48 months, with 25 percent of patients still alive after the seven years of the study.” As my wife said to me when I looked up my life expectancy, “there’s no reason you can’t be one of the people on the right side of the odds.”
Activate your network
One of my first visits was to my minister. He told me, “Just by showing up here today, telling the receptionist why, and talking to me about it — it tells me you are going to win.” He said that many otherwise strong, outgoing people just shut down when they get the news, don’t want to talk about it and may even refuse treatment. By “going public” with the news, your odds of beating the disease are much greater. As word spreads, you will find you’ve built an incredible network of people who care about you, want to help and will put you in touch with other survivors of your particular cancer. You’ve done so many things for people around you and they are eager to help. Accept it gracefully and use it without reservation.
It’s a reality in life that the best things happen through the side door. Whether it’s getting a job interview, or meeting a celebrity, or finding the exact right treatment from the perfect doctor for you and your cancer — it’s all about the connections. Going public allows you to access a wealth of information that formal web sites and phone books won’t. It also eases so many of the burdens as you slog through your treatments while having to deal with daily life.
You must be in charge in two ways: your attitude and your treatment. Mental attitude makes a huge difference. You have been cursed and blessed with this disease. Cursed, because no one deserves this awful, drawn out, potentially fatal disease that will cause emotional pain to your family, friends and neighbors. Blessed, though, because your relationship with those same people will be reset and you’ll find out how loved you really are. You’ll get square with God, learn to live by faith and present yourself as a model of positive thinking and living right.
You can approach your treatment in one of two ways: “Cattle Call” or “Leader of the Pack.” In the cattle call approach, you get in line, do what the first doctor tells you, don’t ask a lot of “why” and moo-ve along with the crowd. Following this approach will get you the average remission, cure and survival rates. In the (preferred by me) approach, you shop for oncologists until you find one who puts you, individually, first. You research all the treatment options (using your doctor as a first source, but checking via a myriad of other sources). You lobby for treatments to maximize your chances, push for cutting edge or “generally agreed to but not yet statistically proven” protocols and win for yourself a customized treatment plan that can put you in the top 5 percent of the statistical curve.
Quick story: When I was sent to a National Cancer Institute Comprehensive Care Center (one of the leading hospitals in the U.S. for lymphoma), the world class doctor told me I was looking at a 50/50 chance of being cancer free in five years. I told him: “That’s not good enough. What do you have that will give me the 30 years I need?” He was shocked. But within five minutes, he’d “remembered” a new treatment I might use. (Of course my wife and I were sitting on a list of several we’d found on official government or physician-association web sites). After we’d finished his regular retreatment, plus the bonus one we’d helped him recommend, I asked again. Guess what? Another new treatment had just been approved (of course, we already knew that). So I wound up with four types of treatment instead of two and my odds went from 50/50 to considerably better than that. In fact, full remission.
When I relapsed after five years, he remembered me and assigned me to a rising research doctor specializing in my cancer. I wound up getting eight more kinds of treatment, stretching my life by three more years. Then, I had a wildly successful transplant that has me 90 percent sure of being cured for life.
I hope and pray you’ll never need the advice I present here. But, in the likely case you will, I hope you’ll remember where you put this, and use it to help win the battle.
Besides the other wonderful blogs on CURE, I hope you'll visit my Taking Vienna site. I also recommend T.J. and Jen Sharpe’s blog, Patient #1. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource. I also encourage readers to visit the Be The Match site to learn about registering as a potential stem cell donor.