Article re: 11 year survivor of Stage IV LC

[Hebbie]

Stumbled upon an inspirational article!

http://www.palmbeachpost.com/accent/con ... _0816.html

'I survived stage 4 lung cancer'

By Joanie Willis

Special to The Palm Beach Post

Tuesday, August 16, 2005

If you know Lisa Pierot, then it is likely that you know me. We're two peas in a pod. I'm her best friend, her soul mate, her partner in crime, her advocate. And she is mine.

The past few weeks have been really tough because Lisa got the news that her cancer, which she has fought for more than 10 years, is now in her liver. I just hate it — and now this: Peter Jennings is dead from lung cancer, and Dana Reeve has been diagnosed with it at the ripe old age of 44.

I could say, "Isn't that funny? That's how old I was when I got lung cancer, 44."

But it's not funny, not funny at all. I guess I could even say, "How could it happen to them, so famous and wealthy?" But I know better. Cancer can happen to anyone — the young, the rich, anyone.

My cancer story is a long and torturous one. But whose isn't?

"You have cancer" was the most surreal moment in my life. My doctors stood around my hospital bed after performing a biopsy and informed me that I had stage 4 lung cancer. The cancer had spread to my mediastinum area (the membrane that protects the heart), and they would not be able to operate.

I knew nothing about lung cancer, operations or metastasis. Why would I? What I did know was what their expressions told me: My circumstances were grim.

It struck me like a thunderbolt. I had lung cancer, and it might just kill me.

A haze of disbelief

If you have heard those words, then you know how they impact your world. For me, there was a heavy sensation of fear and terror, a sense of doom and sadness that was laced with a haze of disbelief. This was a betrayal of my body, a threatening situation I couldn't walk away from. I remember that fear even today, 11 years later.

That first week left me feeling unconnected and outside myself. Light conversations were exchanged for life-and-death discussions, and the joy I once took for granted was long forgotten. I went through the normal drill — the bone scans, CT scans, MRIs, X-rays and blood tests. I tried like everyone does to digest the extensive amount of information I was receiving from the doctors and nurses.

In truth, all I ever heard in those first days was my own heart pounding and phrases like, "It's a difficult case" and "We will do what we can." I was tattooed, zapped with radiation, injected with chemo, lost my hair, lost my health, lost my peace — and lost the expectation that I would be around to see my two precious sons, Andy, 12, and Mark, 10, grow up.

The nights were the worst for me. I had learned that I had about a 4 percent chance of surviving, and without fail, I would awaken each night in a drenching sweat, heart pounding, alone, feeling terrible despair. I would sneak down to my boys' room and stand at the foot of their beds, watching them sleep, contemplating their lives and all that I would miss. This was the worst of it for me. The thought of not being there to watch them play sports, graduate, get married and have my grandchildren brought me physical pain. I could feel my heart break; I was devastated, sick and sometimes beyond tears.

I don't remember the precise moment when my inner will to live manifested itself, but it did, and for that I'm eternally grateful. I do remember the day I stood in my bedroom, all alone, and started repeating the word "NO" over and over again. No to feeling helpless, no to despair, no to depression, no to giving up, no to being a victim of this lousy disease.

I still felt sapped of emotional energy and physical strength, and incapable of the most important fight of my life.

I decided to make decisions. My first was to face the situation head on, get the facts no matter how horrific, trust my own instincts, and act quickly. I liked my team of doctors and told them to hit me with everything they had. They did.

I received 36 radiation treatments, all the while doing chemo — three six-hour days of chemo, 21 days off and another round. I was so sick. But I embraced those beams of radiation with the thought that they were burning the outside of the tumors. I would whisper, "Get it, get it, get it, GONE!" during the treatment. I also made a choice to believe that the chemotherapy drugs were invading deep into the tumors and destroying them within. I fought the doubt that attracted me like a tangible enemy.

"No," I would say. "No."

Weakness and fatigue

Experiencing all-consuming weakness and fatigue from treatments, I determined to make use of my "down time." I read every book I could on cancer, radiation, boosting the immune system, chemotherapy, vitamins, herbs, nutrition, exercise and spiritual matters. I even read about death.

There were no support groups for lung cancer. I wasn't sure if it was because of the stigma lung cancer carries, or if it was because there weren't that many survivors, but I knew I'd have to go it alone. I concluded that regardless of how many herbs and vitamins I had to take, how much juicing I had to do, no matter how much I had to alter my life, I was willing to do it.

I read, I researched, and I learned. Not to mention that I prayed, a lot. Not just for me but for my friends.

For 16 years, I had worked in a small, close-knit restaurant on Captiva Island that had become my home away from home. We were family — loving, supporting and socializing with one another in and out of work. Our job was so much fun, our bosses so great, the employees so close, the money so good that we were the envy of the whole service industry in our town. No one ever quit. We really loved one another.

For years, the wisecrack in the community was that someone "had to die" for a position to open up at our restaurant.

Then, someone did die.

Janie Mullins, 44, was our first co-worker to be diagnosed with cancer. A few months later, I was diagnosed. Then Dee Stewart, 37, and then Jan Sutherland, 34. Everyone was in shock, everyone. Try to imagine the grief our little community experienced as six more women, all younger than I, were diagnosed within ja few months. There were 13 women diagnosed in town in a little more than a year. We did chemo together, talked on the phone, tried to share knowledge, tried to survive.

I can't fully describe the support we received from our community. It was a huge, heartfelt effort, and nearly everyone was involved in caring for us all. I experienced grief and heartache as my friends lost their fights. Eleven of the 13 women lost their battles with cancer. The two survivors: Lisa Pierot and me.

I had more CT scans, MRIs, bone scans and blood tests than I care to recall, and I went into a remission. The doctors couldn't tell me why, but I wasn't asking too many questions. I just took the good news and ran with it. The days turned into weeks, the weeks turned into months, and I turned into an advocate for teaching newly diagnosed patients how to become proactive.

Encouraged other patients

I became a crusader of sorts — networking resources, encouraging everyone to fight through any means possible, and always, always collecting information in the hopes that some clinical trial or vitamin or new treatment would cross my path and save us all. I wrote a book called The Cancer Patient's Workbook, a guide for the newly diagnosed, but just as it hit the market, I became ill again and was not able to do book tours or promote it as I wanted.

It was during one of the routine CT scans that I was given the news that my cancer had come back. This time, my doctors were not too enthusiastic about fighting it with a vengeance. But I was. So, I did more chemo, went out to the M.D. Anderson Cancer Center in Houston and had the right upper lobe of my lung removed, and came back home again for still more chemo. That was six years ago this month. I still have the blood tests, the CT scans, the cancer issues to deal with. I was diagnosed with melanoma this March. I'm at high risk for colon cancer and get colonoscopies every six months. But I keep on keeping on. Life is precious.

I wish I could talk to Dana Reeve to encourage her. I would say: "I know what it is like to think you might die. I have visited that doorstep hundreds of times. I know what it is like to feel sick and want to give up. I have been there, too. The thing is, you are an individual. Your cancer cells are unique to you, and you will respond to treatment uniquely, as well. So don't look at statistics; look for any kind of trial treatment instead. Sleep a lot, do your own research, and if it makes sense, try it, whatever 'it' is. Drink so much carrot, beet, cabbage and broccoli sprout juice that you turn orange from beta carotine.

"Don't rely on your doctors for everything. Get an advocate who can ask questions and keep things straight when you can't think for yourself. Drink green tea. Stay away from secondhand smoke. Take ginger baths. Don't worry about the small stuff. Spend as much time as you can with loved ones. Watch funny movies. Keep track of your CEA cancer counts. Consider getting a second opinion at M.D. Anderson or Sloan Kettering. Don't give up. Just say 'no.' NO!"

That's what I would tell her.

[Ry]

Wow what a great article, thanks for posting that.

[dadstimeon]

WOW, What a fantastic story, thanks for sharing.

[endangered but surviving]

great article!!!!

thanks!

joyce

[carolhg]

Hebbie,

This is such an encouraging article. It gives hope to so many people. Thank you.

Carol

[Addie]

Wow, Hebbie...what an inspiring post. Joanie and I, I think, share a lot of the same positivity about making our way through the cancer journey...but she trumps me in a lot of ways.

I'm printing this out for my OWN rereading and think I may just take some extra copies to my onc's office for others.

What a spirit Joanie has maintained. It's not just her words in this article....I can FEEL her spirit between the lines.

She has that "Survivor Personality" down to a science.

One thing I wonder about, though....what was it in that small community on Captiva Island that produced SO many co-workers with cancer, I wonder? A bit spooky, eh?

[pammie]

thank you so much for challenging and inspiring us all to fight and never give up. pammie