"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today." Thich Nhat Hanh
Here's a beautiful picture of a happy family. You see families like this every day. Maybe yours is similar. Well, I hope not. Because two members of this family have cancer. One lost an eye, wears a very convincing prosethic. Still. Blind. The other lost an ear, from the inside, some facial muscles paralized, gets eye tumors too. Still. Deaf.
I hope your family's healthier. We all should share similar courage, strength, determination and love as these four do, and more. They must, because of course even the two healthy ones deal with the emotional pain and fear and monumental stress that is cancer's collateral damage. Especially to a happy family.
Who are they, this happy family living with cancer and Still. Smiling. Some of you know. Who's got cancer and who lost what? Some of you know. Hard to tell, isn't it? Modern science is amazing. Not amazing enough.
I'll tell you why in a minute. First, who's who. No surprise, they're members of my family. Closeknit, special, important to many, of course to me, especially to my sister Judy.
The lovely blonde in the white sweater is Karen, Judy's daughter, my niece. Karen lost her right eye to melanoma last year. Her rock of a husband Bob is next to her. Their son Alex, in the blue shirt, had a huge, rare, right side brain/ear tumor removed at age four, has had multiple surgeries since. His sister Amy, thank god, is as solid and healthy as their father.
Last month I wrote with such joy about Alex's bar mitzvah, Here's To Alex, To Life, L' Chaim! Two celebrations, really. Because exactly two days before the bar mitzvah was the one year anniversity of Karen's eye surgery, doctors pronouncing her cancer free. I planned to write about that for her birthday on May 20.
Then. Well. Damn. Okay, deep breath.
Last week, on Karen's routine quarterly MRI ... tumors. Somehow between January and April, that fast, there they were. Liver. Spleen. We don't know yet if anywhere else. But when melanoma goes to the liver, well. It gets harder.
"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight." Lance Armstrong
Karen told us firmly, All discussion will be Positive. I'm going to live, she said. I only want to know what I can do about it. That's what we're going to focus on, she said. Life. Positive attitude. Healing and dealing.
Monday Karen, Bob and I went to her oncologist. A unique human being, dedicating his life to finding the best treatment --right now the only treatment-- and one day a cure for melanoma metastasized to the liver.
We've faced doctors together before. For Alex. For Karen. We have a routine. I do the research, then Judy and I put together questions (it helps that Judy's a nurse). My job is to keep a clear head, take notes, ask the questions, remember the answers. Share them when needed.
This time my job was also to talk privately with the doctor, ask the tough questions, become the keeper of any tough answers. They're in the vault.
So, with a Positive Attitude, I'm going to remind Karen of the most important thing we learned. Our family should listen. You can too.
This is not the end of your life. Those are the words I want you to hear, to heed, to hold on to with your head and your heart and your inner strength. They are the mantra you will use --we all will use-- to cope, to deal, to sleep, to work, to laugh, to love, to live.
This is not the end of your life. That's what the oncologist said. First words out of his mouth as he came in the room. You heard it, sitting cross-legged on the exam table in one of those ridiculous hospital gowns and your soft ankle socks, with your unruly crown of glorious curls, looking so scared and so beautiful and so healthy and about 6 years old.
This is not the end of your life. Bob heard it, sitting in a chair opposite, so tall and straight, seeming still and quiet as always, but his eyes never leaving your face, his kinetic energy a palpable force willing his wife, his friend, his partner, his love, the mother of his children to be strong, safe, well.
This is not the end of your life. I heard it, sitting next to Bob, doing my best to be relaxed and funny and supportive in my official aunt-friend-fill-in-for-mom role, busily taking notes on my legal pad, everything the nurses and physician's assistant said before the doctor came in, next steps, treatments, tests, side effects (white hair!), requirements, possibilities, expectations.
THIS IS NOT THE END OF YOUR LIFE. Halfway down the page I printed those words just like that, big block letters, all caps, each word underlined, just as the doctor said them when he came in. Because until he said them we all thought, we all believed, we all couldn't admit, we all feared, we all... well, no. We're not going there. We're staying Here, in the Now, under that banner, that life-affirming canopy of safe haven.
This is not the end of your life. I filled two pages of notes under that banner, the doctor's assessment, reasons for each treatment, answers to our questions, assurances, reassurances. Realities too. He's so matter-of-fact. Calm.Thorough. Incredibly patient and kind. He doesn't rush. We ask the same questions four different ways, he gives the same answers, letting us absorb slowly, surely, positively.
This is not the end of your life. You will not have chemo. Yea!! Well, chemo doesn't work on inoperable liver metastases. Or the ones on your spleen. Damn. But. This treatment, the one this doctor discovered, developed, got FDA approval for, this one does work on the liver, goes directly into the liver, is working for others. It. Will. Work. For. You.
This is not the end of your life. It won't be easy. Unpleasant at best . But not constantly. One treatment a month, overnight in the hospital, feeling sick. "We're giving you the flu," the doctor says. Only for 24 hours, part of each treatment designed to make you just sick enough to kick your body's immune system into fighting mode, grow stronger, halt the cancer, keep it from spreading. That's the goal.
This is not the end of your life. There will be a different treatment added. Systemic, but again, Not Chemo. A drug that's easier, gentler, less toxic. Fewer side effects. Both treatments interacting to help you. It could be worse. Well, it could be better too. But other than one, maybe two crummy days a month, life should be normal. Well, scans every month too.
This is not the end of your life. So okay. This is the new normal. You'll be a little tired, a little sore. I have no doubt that as always you'll adjust, cope, make sure life in your house stays on course. Bob, the kids, school, the dog, your teaching, cooking, Little League, plays, Alex's check-ups, Amy's braces. All of it.
Because you have true strength.
"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." Maya Angelou
Last summer I chronicled Karen's battle with melanoma in I See Courage. (It got buried during beta, read it when you can to see how really amazing Karen is).
I said this then about Karen. It bears repeating. Under our new banner it is truer than ever.
Fight. Mobilize. Energize. Laugh. Love. Live. Learn all you can. Gather your physical and emotional resources. Seek and accept support and counsel and advice. Lean on your loved ones and stand on your own two feet.
According to Karen's example, that's what you do to survive. More, that's how you live life to the fullest.
Karen is a survivor of the highest order. An inspiration to cancer victims, mothers of cancer victims, other survivors and those who are trying to be. An object lesson to any of us who waste time moaning about petty problems.
In her own words: "So maybe I'll never get to sing with The Grateful Dead, Bruce Springsteen or Carly Simon (I'm still hoping, though). I have other gifts to bring to this world and a legacy unmatched by anyone; my children. So I'll keep on Truckin, in Anticipation, cause baby I was Born to Run!"
"People are marvelous in their generosity if they just know the cause is there." Will Rogers
I'm seeking good karma. As much as I can get. Pray for Karen please. If you don't pray, send some healing thoughts her way.
Wednesday Karen had a 'core biopsy' of her liver. It was pretty brutal but Judy got in from LA early in the morning so she was with her in the OR, took her home after. Hurray, Grammy's in the house.
Next Monday is Karen's first treatment. She'll have to stay overnight in the hospital but she'll be home Tuesday (May 12) to help celebrate Alex's 13th birthday. Great timing, eh. Could be better. Could also be worse. We'll take it.
There's one more thing.
Saturday, May 9 is a worldwide fundraising day for VHL, Alex's rare cancer. He came up with the idea himself, they'll tell you about it and you can find out if it's happening in your area.
And if you're able, help us help Alex too. For Alex, for Karen, for all who battle the "orphan cancers," the ones not high on the funding and research priority list.
Because they sure as hell are important to us.