Why Beating Cancer is a Lottery

Big Win

You can’t win if you don’t play.

And sometimes, you can’t win even if you do.

Does that title sound weird? Apologies ahead of time, but the more I deal with this disease and the more I hear of other people’s struggles with it, the more like a lottery cancer seems. One of the most interesting, but cruel, things about the Big C is that it isn’t choosy who it kills and who it spares. I call it “the great equalizer.”

Earlier in the week, we learned that the lovely Kelly Preston, John Travolta’s wife, was secretly battling breast cancer for two years. Alex Trebek has been beating the pancreatic cancer odds for about as long. And we know that Steve Jobs, in spite of being a billionaire, lost the fight after eight years. Yet, a poor chick like me can get some top shelf medical care and do okay.

On June 22nd I had my third PET scan, three months after pinpoint radiation to my lung. My radiation oncologist at Dana-Farber felt as though she would be able to cure my lung tumor…and did. My scan was nearly clear, and I have Stage IV lung cancer, the biggest cancer killer by far. Granted, my metastasis is very limited and, in fact, does not include any other major organs. Even so, good luck finding a case like mine out there in medical land.  This doesn’t happen on a regular basis. I have been extremely lucky. I’m not supposed to be here and wouldn’t be if I didn’t go to a comprehensive cancer center for my care. So yes, I’m winning the cancer lottery!

The cancer lottery has little to do with money. Buy your ticket, pick your numbers carefully, and hope for the best.

Back to that PET scan for a minute. One small sight was still lighting up, a node in my right shoulder muscle. Currently, I’m in Boston undergoing fifteen treatments of radiation to rid my body of the last traces of a disease that normally kills people much stronger than I.  I fully expect that my next scan will be clear.

Sigh.

How did this happen?

First, let me point out that I didn’t get lung cancer because I was a smoker. Yes, I smoked when I was a teenager, but the cause of my disease is what my oncologist refers to as a “genetic accident.” No one knows when it started, but there’s a fair chance that it had been growing for many years, and wasn’t discovered until last September, when a tumor started to appear in the area of my sternum. As horrendous as it was to have a visible tumor, the fact that I could see it is yet another way that I got “lucky in an unlucky situation.” Lung cancer rarely has signs that can be seen. As I sit here typing this I’m overwhelmed by how things could have been so different for me.

I also won the treatment lottery. Because of a mutation in my tumors, I bypassed chemo and was able to take a pill to shrink my cancer down to a size where radiation could be used to eradicate the remainder. Cutting edge treatment, folks. Of course I’m really simplifying it. The fact that the medication worked so well was another miracle. Jeez, did I ever hit the jackpot!

As I walk the polished floors of Dana-Farber and Brigham & Women’s in Boston, I see little old ladies just out of chemo bent over in wheelchairs, and little kids with bald heads taken from appointment to appointment by their vigilant and exhausted parents. No one wants to lose this battle.

A growing number of cancer patients become long-term survivors. We know what happens to the rest. But what’s the deciding factor?

Luck definitely has a lot to do with it, and a fortunate roll of the dice. But making good decisions has a major chapter in the plan book, too.

Here’s what worked for me.

First and foremost, the best medical care that I could get. After that, a predominantly positive attitude. Prayers and good vibrations from whomever was offering. Sidestepping negativity. Fighting to keep my mind and body strong. Educating myself as much as I could in all things lung cancer, and cancer in general. Getting back to doing the things I love to do sooner than could have been predicted. Being in very good physical shape to start with. Having a decent diet. Finding the joy in life again. Asking questions and getting answers. And relishing the miracle.

Are there people who do all these things and don’t get positive results? Unfortunately, yes. But don’t be one of the ones who doesn’t try.

As Americans, we love talking about who wins the Super Bowl and the World Series. We marvel at athletes in the Olympics and Wimbledon and the Indy 500. But here’s what a cancer survivor knows: There’s no bigger fight than the fight for your life. And when you win the cancer lottery, you’ve done something pretty special.

Play to win.

Cancer-Survive-Quote

The New Face of Surviving Cancer

What’s so new about surviving cancer? A ton.

As I travel this road of being a cancer survivor, I’m learning a hell of a lot. Maybe more than I ever learned as I crisscrossed the globe for two decades. Maybe more than I learned my entire life. Absolutely more than I ever wanted to know about this particular subject.

Now, it’s my reality and I’m going to live it. And if I can help others in the process, even better. Every dark cloud has a silver lining, right?

But let’s get back to that new face of surviving cancer.

What’s your perception of someone with the Big C? It’s this, right?

Chemo Two

This may still be reality for some unfortunate enough to get this disease, but not all. What if I told you that every single picture of me in this blog (and most on my website) were taken after my diagnosis, and that my appearance didn’t change at all as I’ve gone through treatment? That there are people wandering around out there in the world, like myself, that have cancer and you don’t even know it unless they tell you? You’d call me a liar, but that’s okay. It gives me a job to do here, changing your perception of what a cancer survivor looks like.

Let me just clear up one more thing.

You’ll see a lot of this stuff out there, too:

Chemo One

I’m going to title this one “Gorgeous Woman Who Has Never Known Cancer in Her Life Telling You That You Can Look as Happy and Fantastic as Her While Your Body and Your Identity Get Depleted By Chemo.” This is called “putting a happy face on a really crappy situation.” It’s misleading advertising at its best and worst. And this is absolutely not what I’m aiming for here. Nor am I suggesting that every chemo patient is ugly, or that any chemo or cancer patient is ugly. I’ve seen people look absolutely stunning in head wraps and/or wigs. Don’t know how they do it. I admire them greatly. In general, I think strength is way more admirable than the Kardashians.

Disclaimer: I was lucky enough to turn my back on chemotherapy, but was less than twenty-four hours away from having it when I was offered cutting edge treatment at a comprehensive cancer center.  I don’t know what chemo is “like” and I don’t plan to. But I do know what it’s like to think that this is the only way to rid my body of this demon called cancer. I was almost there. My lucky stars aligned and I was saved this misery. And this is why I’m so different.

I have lung cancer. And no, it’s not because I smoked, and no it is absolutely, positively not okay to assume that or to ask me about it as if it’s a given fact. That’s an unfortunate way the face of cancer is changing: lung cancer is on the rise in populations in otherwise healthy individuals like me. But that’s for another blog. For this one, let’s get just a bit deeper into two of the reasons that cancer is getting a much needed makeover.

I was diagnosed at a local hospital before I went to Dana-Farber in Boston, which is consistently in the top five cancer research institutes in the entire United States. My local hospital was prepping me for chemo and radiation, but had the good sense to send my biopsy tissue out for what is referred to as biomarker testing, though it may also be referred to otherwise. I can’t even stress how important it is to get this type of testing done if it’s available for your type of cancer. It could be the difference between vastly different treatment scenarios. It could be the difference between life and death, as it was for me. When you settle for chemo and radiation as a first line treatment, that is all you’re ever going to get, and at many small cancer facilities it may be your only option. I know now that if I had not gone to Boston I would not have lived long. Scary stuff.

If you’re fortunate enough to have a biomarker, you may be able to have something called targeted therapy, which is what I’m on. It’s basically a pill that targets the specific mutation in your tumor but usually doesn’t destroy anything else, like white blood cells, which is what chemo is known to do. Targeted therapy drugs often have many less side effects than chemo. It may sound far fetched, but the therapy that I take daily started shrinking visual tumors I had in less than a week and set me on the path of getting my life back. Results vary, (mine was phenomenal) but many people have great responses to these wonder drugs.

The second fairly new treatment is called immunotherapy, which uses your own immune system to attack cancer cells. Like targeted therapy, more cancer survivors are living longer lives with infusions of immunotherapy. Many options are available, and I’ve read several success stories.

It is accurate to say that targeted therapy and immunotherapy are rewriting the script on cancer and putting more people in the survivor column.

Before you accept chemo and radiation, be sure to look into all your treatment options.

And join me as the New Face of Surviving Cancer.