Stories From A Life

Been there. Done that. Writing about it.

Sally Swift

Sally Swift
Location
Philadelphia, Pennsylvania, USA
Birthday
June 14
Title
VP, Repartee
Company
Swift Retorts
Bio
sally: a journey, a venture, an expression of feeling, an outburst, a quip, a wisecrack ... me

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JULY 10, 2008 6:52PM

I See Courage

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Karen Before After   

"Life shrinks or expands in proportion to one's courage." Anais Nin

They say life gives you only as much as you can handle. If that's true, my niece Karen is Mother Freakin Teresa.

It's hard to believe life's given her such heavy burdens. Not that she can't handle them. She's a wife, mother, teacher, massage therapist, healer, a dedicated practitioner of healthy lifestyle and positive karma. She's smart, funny, generous and open-hearted.

Sure, she has her ups and downs like the rest of us. But Carrying the Weight of the World just never seemed her destiny.

Turns out it is, though. Karen's been fighting cancer for 8 years. Most of those years not for herself, which would be bad enough. For her son, which is, to a parent, much, much worse. Yet you and I should only manage half as well.

I've mentioned before that our family's had more than our share of heartache. Sure, every family has, but our list is too damn long.

I've talked about my mother's struggle with blindness. I've touched--just barely--on my biological father's inner demons and eventual death.

Alex

Last month I told the story of my nephew Alex's battle with a rare tumor-producing cancer called VHL. I noted his regular 6-month exploratory eye surgery was coming up. To those of you who kindly asked me to keep you posted: unfortunately, the news isn't so good. Eighteen tumors removed. And each time the laser cuts out tumors, it also takes away some of his sight. 

Alex and his sister are at camp now. Not the best place to add new glasses to the hearing aids he's always losing. But, as he says, "Hearing's over-rated. Seeing's not."

Let's ask his mother -- my niece Karen. Right. Karen is Alex's mother. And incredibly, a year and a half ago Karen got cancer too. Not VHL. Melanoma. An ominous word. So now she's battling cancer on two fronts.

Bare Background
Karen's the daughter of my eldest sister, who married young, so I'm closer in age than a typical aunt. More like her older sister. 

Progression. Synergy. Cooperation. Love. Obviously, we're a close-knit group.

I've asked myself over and over, regardless of family support, how does the parent of a child with cancer cope with such heartbreakingly cruel responsibility? The stress of hyper-vigilance and Keeping Things Normal is so sky high. Now I know how. Because no matter her age, Karen is my sister's child and she's sick too.

Melanoma

When Karen found an odd patch on her leg and was told it was a melanoma, she didn't panic, just dealt with it, no fanfare. The growth was removed, clean margins, good outcome. Done. We thought.

Not. So. Fast.

Six months later, last July, that word again. Melanoma. In. Her. Eye. Go ahead, shudder. I did. More invasive surgery would be required this time.

Karen took it in stride. No time for fears or tears, she was too busy juggling summer schedules, keeping the house on track, cleaning the pool (a gift to Alex from the Make-a-Wish Foundation), walking the dog, doing laundry for camp ... as every mother knows, the list goes on.

So okay, a few more tasks: X-rays, liver scans, pre-op tests, paperwork for surgery. And make sure the kids are looked after, emotionally and physically.

Who better than Grammy to man the home front. So my sister came in from LA. (She has a tragic and uplifting story of her own. Not kidding. But for another time). 

Radiation Eye Surgeries

The first operation put a radioactive chip into Karen's eye to kill the cancer cells. Karen would wear a lead eye patch for 5 days. 

Post-op all seemed okay until the rest of the anesthesia wore off. Without warning, excruciating pain hit. Killer nausea too. Added to the darkness under the heavy patch, the nightmare was suddenly, terrifyingly real. Finally, finally Karen didn't care who knew it.

Hallelujah! She let the tears flow, the sobs come, even a few howls rip, releasing all the pent up stress she'd been carrying so long under that stiff upper lip. Me, I'd have been crying and ranting for weeks. But that was it for Karen. One good cry and she was ready to move on.

Her inner balance was back. Hallelujah for that too.

The follow-up surgery was far easier, radiation chip removed and a laser used to eradicate any remaining cancer cells. A few hours later, Karen was on her way home.

She resolved to make her family's life better, safer, healthier. Anti-cancer foods, recipes, lifestyles. Everything  organic. Swimming and long bike rides. Horseback riding. Walks on the treadmill. Singing. Teaching. Life again back to normal. For all of us.

Until the Cancer Demons said, again: Not. So. Fast.

Enucleation

A routine check-up this Spring became the biggest nightmare yet. Malignant tumors on her optic nerve. No time to waste. No other option. The very next day, April 16, 2008, surgeons Removed. Her. Eye. Yeah, join me in another giant shudder.

It's called Enucleation. Such a gentle word for so brutal an attack. But it's a quick surgery, relatively painless. Depending, of course, on how you measure pain. To the body. To the soul.

And 6 weeks post-op comes a state-of-the-art new eye, artificial yes, but painstakingly crafted to match the real one. It's carefully fitted to an implant already attached to her inner eye muscles during the first surgery so it'll move like the real one too.

Okay. Fine. Enough information.

Arrgghh, Matey
Recuperation was harder this time. How could it not be? Her right eye was gone. Literally overnight. But still she rebounded faster than even the doctors expected. Inner darkness overcome by the light of laughter and hope.

I found colorful eye patches to match her outfits. She and the kids made lots of pirate jokes. She told her husband, "I had my eye on you since we first met. Let's hope it was the good one."

Bling Patch 

The funky bling patch in this picture taken by 10-year-old daughter Amy reflects  my effort to follow Karen's lead: make lemonade out of lemons, turn chicken shit into chicken salad, focus on the joy of family, continue to embrace life.

Karen got her new eye just before Alex's latest surgery. And was by his side, as always. Look at those pictures at the top, I didn't touch them up. And I'm not such a great photographer. But even in person it's hard to tell the difference unless you already know and look hard.

Yet Karen's still cracking jokes. She sent me an IM the other day, "News report: peeling an onion is now only HALF as annoying."

On a more poignant note, telling me later on the phone, "Life is so precious. I had to lose an eye to see the truth."

The Future, Or Not
That's the part the doctors can't predict. How long will she live? Because they don't know. Ocular melanoma most often metastasizes to the liver and lungs. A few "rogue" cells could already be on their way. If so, the  mortality rate is ...wait for it... 80%.

I need to stop a minute.

=================


I want to howl to the heavens: HOW MUCH PAIN MUST ONE FAMILY TAKE?

I know the answer. As much as they're given.

Okay. So the goal is quality of life.

Long term prognosis? Not on Karen's radar, thank you. We'll know when we know. Right now, things look good. Even through only one eye. She's driving again. Bike riding. Cooking. Computing.

Except. Karen too will need MRI's, liver scans, chest X-rays and biopsies every 6 months for as long as she lives. Which we hope and pray will be a very long time.

And she shares something else special with Alex -- they both have the same eye surgeon, they've both had eye tumors removed.

But again, she jokes about it. "Most people plan family vacations," she says. "In our family we plan trips to the hospital."

Yeah, really.

Karen and Alex. Mother and son. Different cancers, similar losses, totally the right attitude. We all work hard to assure Alex he won't lose an eye too, though he knows his sight is stilll in danger. Nevermind. That's in the future.

For now, fight back. 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 those of us who waste time moaning about petty problems.

Karen is such a warm, courageous, loving person. She virtually glows with goodness and light. Which she can only see from one side now.

I can tell her what I see when I look at her -- I see unbelievable courage.

I only wish I saw half as much in myself.

 

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Comments

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I'm usually pretty good at self-editing, but this one got me. Maybe it's supposed to be two posts. Or three. Or maybe I need to be more ruthless with my writing. Anyway, thank you for your kind comments. Do read the last part, if you can. Karen does inspire such hope.
We are often humbled by the strength we see in others. You know how that is in my life Sally. It's still not fair that we get to acknowledge that, that we are humbled by the pain and suffering in others and the strength they come up with to deal with it all. It is amazing what your niece has had to endure. I love the onion joke, and that she has you.

xo

-b
Melanoma killed my father. It started with a patch on his balding head, and then metasticized into his liver and lungs and finally his beautiful brain. Despite having best doctors at Sloaan-Kettering and multiple surgeries and chemo, diagnosis to death was roughly a year. I hope your niece fares better.
Thank you, Lauren. And I'm so sorry for your loss. I think I've written such a long post on Karen partly to keep those demons at bay.
My only advice to you Sally, and my biggest regret, that was when it became apparent that Daddy wasn't going to make it, we were all still gathered around him forming our cheering section and I never told him how much I was going to miss him, how much he had meant to me. I hope your niece doesn't get into the same predicament but, if and when it is obvious she is not going to make it, let her know how much she has meant to you and how much you will miss her.
Thank you Lauren, good advice. Which I must have known instinctively, since I've been writing pieces about Karen throughout her journey and sharing them all with her.
She is a wonderful woman, a wonderful example, and you are a wonderful aunt.
A little late but I revisited this post through the link on today's post, about Karen not going to die. I don't think I can do too many of these at one sitting. But thanks, Sal, for putting this stuff in front of so many people. Positive thoughts, people. Thanks. Sally'sSisterJudy