Five Years

Five years ago today, I was diagnosed with cancer.

Five years is a milestone for lots of cancer patients. In general, five years in remission means that chances are good that your cancer won't be coming back. Of course, for a Follicular Lymphoma patient, that time span doesn't mean much. Lots of people go five years with fNHL; some even go five years in remission. But it often -- usually? -- comes back. It's the burden we live with. But it does get easier with time, and, as anyone who has read the blog knows, I always hold out hope for a cure.

And I have reason for hope. It seems like once a week that I come across something that describes a new treatment, or an improvement over an old one, or maybe just an idea that might lead to something good. I write about those things, and even if they are only small studies, or promising theories, or tiny improvements, I always try to end of a note of hope. I'm being hopeful for all of you, but mostly for myself.

Hope wasn't always there, especially early on in all of this. A few days after I was diagnosed, I went to see a lymphoma specialist at Yale. If I had been kind of floating along for a few days in a numb fog -- everything happened so fast -- the Yale visit was the cold, cold water that woke me up. The ward of the cancer center that I went to was devoted to blood cancers. I sat in the waiting room -- a lovely, sun-filled room with smoked windows and lots of green plants -- among other cancer patients, some bald and without eyebrows or eyelashes, and many of them very, very young. I remember looking at the signs hanging from the ceiling, guiding people to chemo rooms and bone marrow transplant centers. My stomach clenched, and the January sun beat in through the smoked windows, and I felt really hot and really cold at the same time.

Dr. R had warned me that the specialist, Dr. C, was known for being brutally honest with patients. He said some things to me that were honest and hopeful. And then, as we were wrapping up, I looked for just one more bit of reassurance, and I repeated what Dr. R had said about people rarely dying from Follicular NHL. And I shouldn't have asked it, but I did, and I got my answer: "Oh, this will definitely shorten your life span...." And the cold water fell on me hard, and my stomach clenched a little tighter.

And then Dr. C asked for another blood test, and I waited some more among the other cancer patients, and then I got some blood drawn, and as I walked back to the waiting room so I could finally get out of there, I saw a rack of pamphlets on the different types of NHL, and I grabbed the one for Follicular, which I shouldn't have done. Because one of the sections of the pamphlet was on survival rates, and the 5 year survival rate was something that seemed ridiculously low to me -- probably in the 70 percents somewhere, I don't remember and I don't care anymore. And I thought, "What if I'm one of the 27% who doesn't make it 5 years?"

And I couldn't get that thought out of head for a week, and when I was alone, I'd break into spontaneous tears every half hour or so, thinking about my wife and kids. And sometimes it would happen when I wasn't alone and I'd find some excuse to leave the room. And I'd pray, "Please, God, just give me five years. My kids will be almost 16, 14, and 12. Maybe that's old enough for all of them to be OK." And it was a dark, dark place and the water was like ice, all around me, up to my neck.

And now it's five years.

And I want more.

And I plan to get it.

Because the cold waters eventually receded, and all of the knowledge that I sought that day, which did nothing but bring me darkness, now brings me light. I stopped paying attention to numbers that made me sad. I learned a lot about Follicular Lymphoma. I paid attention to the things that gave me hope. Like the person from the support group whose doctor told her, with the advances they'd made and expected to make in treatment, "If we can keep someone alive for five years, we can keep them alive for 50."

If it's going to shorten my lifespan, then I guess the plan had been for me to live a very long time anyway.

I certainly won't stop my quiet fight.

I've learned some important lessons in five years about being a cancer patient:

Find a support group. Give yourself access to people who have been where you are, who know what you're feeling and what you're likely to feel. People who have been through hell are wonderful about sharing stories about their trip. Make use of them.

Do not keep things inside. They fester there. Do not be afraid of what others' reactions will be when you open up. People will surprise you. Usually in good ways. But keeping it all inside is a bad idea.

It's OK to have bad days. Cancer patients have earned our bad days. And you'll find lots of people who will tell you, "You have to stay positive! Don't get down!" They're right, in a way. But some days, you just want to be sad. So take your bad day. Or even two bad days. (But three in a row is a sign that you need some help.)

Give people the benefit of the doubt. People say and do dumb things because they don't know what else to say or do, or they thought they were being helpful. There are few real jerks in the world. Feel sorry for them. Assume the best intentions in everyone else.

Understand what you are dealing with. For me, knowledge is power. I deal with things better when I know what to expect, even if there's just a small chance of it happening. Know enough to talk to your doctor. If you don't understand, ask questions.

Learn your own lessons. Stop and reflect on your experience, and take something from it that you can use later on. And always, always assume that you'll be around long enough to put whatever you learned into practice.

And laugh. At yourself.  At just how ridiculous it all is. And at cancer. Especially at cancer. Because cancer feeds off fear. Laugh at cancer so hard that little bits of spit fly in its face.

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Thank you all for reading, and thank you all for being there for me.

Tomorrow is the first day of year 6.