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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MAY 7, 2009 1:19AM

"This Is Not The End Of Your Life"

Rate: 60 Flag

 "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

family  

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

That's Karen.


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!"


VHL Family Alliance - Cancer Research Fund - Alex Anderson's Fundraising Page.

"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.


VHL Family Alliance - Cancer Research Fund - Alex Anderson's Fundraising Page.


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Fed for family, hope and love.
Your devotion and love of your family comes through so strongly in these words. Wonderful piece. Five years ago my oncologist told me the same thing. "This is not the end of your life." He was right.
Sally, I'm really sorry. But let me beg, beg you not to let Karen feel like a failure or that she's not thinking positively enough if the cancer spreads.

No matter how this works out, her victory will be in living life the way she wants to, and loving and being loved.

My mother and I shared breast cancer. I am fine nearly 9 years later. She is gone these two years now. But what she did during those 12 years after her mets were discovered! Wow.
This hits very close to home for me. My neighbor's 23 yr old daughter died this past weekend from melanoma and my father was just diagnosed with skin cancer on Monday. I am feeling your pain and you have my prayers.
I have no clue as to the pain you are suffering right now, only prayer and hopes for the best. You have a lovely family
Roger, I'm so glad to hear you say that and that you're still here! May I ask what kind of cancer? Regardless, from your lips to god's ear...

Gregor, thank you for your concern, and you're right about her victory. But be assured I would *never* make Karen feel like anything other that what she is and always will be, My Hero.
zuma, you are so kind. MAWB, I am so sorry for your pain.

I just want to ask everyone to offer positive comments as much as possible, since Karen and the family will be reading them for added comfort and hope.
Sally - Tons and tons of prayers and positive healing thoughts of love and hope go out to your Karen, her family and to you! You are so blessed to have them and they, you! You are such a beacon of healing light and hope for Karen. This is so apparent here and so invaluable to this process of healing and love beyond compare. You are a rock, kiddo and I am sure you have many moments when you doubt it, but you are rock solid. Know so many here are with you in spirit and love. God bless and protect you all through this difficult time. Love and prayers.
My uncle had melanoma. He did not have a good prognosis. Recently, the doctor at MD Anderson in Houston put his hands on my uncle's shoulders and said, "You are a miracle." He has been cancer-free for a few years now.
The same thing can happen to Karen. I will pray and pass it on.
I really don't have words, but please know that my heart and thoughts are with you and yours.
My landlord is a retired chemist with stage IV breast cancer. She was told that eight years ago, and ceased all treatments, the doctors can't figure it out. Apart from the normal aches and pains a woman her age might have, she looks pretty damn good and never stops moving.

My point is, regardless of the doctors and what they say, or don't say there will always be a fudge factor and sometimes the fudge is deeper, and richer than you'd expect.

That these medical traumas are being visited over and over on this one small family is the personification of the "life is not fair" truism, in it's most bitter breadth, and depth.

There is no why. There is only next.
I am sending radiant green light to Karen. (Green is the color of
health.) Sparkling radiant green light pulsates through Karen's
liver and washes away all dis-ease. Healing is.
Stay Strong.
Prayers for Karen and your family.
What a family, Sally. The word "tenacious" is written all over each and every one of you. There seems to be an incredible appetite for life in your gene pool and an awful lot of determination to jump in, splash and push its boundaries. The common factor it seems , is that this tightly knit force of nature known as your family has surmounted many obstacles and exceeded expectations with luck, sheer will and force. But the most important element in this whole equation is love and there seems to be no shortage of that amongst and between you.
This is NOT the end of your life (or anyone else's) as you so rightly repeat. The courage of all of you and the love radiates from each of your stories is as powerful as any treatment I can think of. My prayers and love to your beautiful family are coming from many of us here os OS. Know that we are thinking of them as well as you. Return to us for refills of hope, hugs and encouragement if needed and when you can. We have plenty to share with you. Hearts and healing hugs to you. Put those in your vault too.
I couldn't wait and read all of the comments before I posted mine Sally.

"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."

That quote is going on my fridge today. True words to life by.
My heart goes out to you, your niece, your sister, and all of the family. She WILL live a full life, no matter how long. My prayers, good karma winds, hugs, blessings, and every thing else I can muster are all flowing to Karen. And dear one...you also.
True words to live by... hugs...giant hugs. And positive thoughts...lots of them!
Oh Sally. Holding you and yours in my heart. Hoping. Hoping.
Sending positive energy and healing light your way. Cartouche said everything I could have about your family. You all are a force to be reckoned with and the love you have will help hold you together.
rated for reality and living in the now
Sending love and healing thoughts. Sisters and our relationships to them...they are hard to describe and so valuable. All my best and you and your sister and her family are so wise to focus only on the positive.
Sending love, hugs, and lots of good karma to your whole family!
You know I'm sending all the good thoughts and prayers I can muster, Sally. Stay strong, tell Karen and the family to stay strong. You've enlisted an army of well-wishers to stream the best possible karma out for her. Surely it has to help.
People can say what they will about Armstrong, but he had the single digit chance of living and he won several Tour De France' after he beat it. He's done a lot for cancer and for that I don't care if he doped himself or not.

Great post about hope and perseverance Sally. Loved it.
rated
Our hopes and prayers are with you and your family.
This is terrible to read, but your spirit, and especially Karen's spirit, are an inspiration. God's strength to you and your family.
I wish you and your family the best.
I am utterly convinced attitude and outlook has a lot to do with these things. Melanoma's an insidious disease. A friend has it. You have my hopes.
i have been here. as long as there is life there is hope. do not let it go. do not let anyone or anything take it from you. change anything you believe to meet your needs. make as much physical contact as possible. love is all that matters, all the ever mattered, and all that ever will matter.
I am adding my prayer for Karen, and for all of you. Passionately written. This truly is not the end of life.
Sally, my thoughts are with you and your family.
Wow.

My mother was diagnosed with ovarian cancer 5 years ago. She was told her days were numbered. She lived for 4 1/2 more years before cancer finally took her life. I would heartily agree that her initial diagnosis was not the end of her life as she knew it.

Thank you for writing this. I'll be sharing this with others. Thank you.
Oh Sally, truly beautiful and touching. I will focus on the positive, as per instructed. I will hope strongly and fiercely. I'm taking a moment to do so now. I hope you and your family feel it.
A wonderful, positive attitude goes so far...this is difficult to sustain, yet I can see in your posting that you all have what it takes to do battle. A beautiful family who obviously knows how much love needs to be pulled in.

I add my prayers and good wishes to the the flow of them.
You're right: Keep the faith. And I agree with Thich Nhat Hanh.

Rated
This does hit close to the heart........God.... you, and they are brave....
Such spirit as this, in the face of a wretched foe, inspires all of us.
I am sorry for the pain and seemingly endless suffering.....I am wishing so hard for brightness and hope..
Sally- This is why I have you bookmarked. The strength that this family, your family, has is phenomenal! I can feel the will and courage and determination radiating from this post! Fantastic, all of you are just fantastic! Remember, if you live your life knowing you are loved, then you are living a full life.
Rated for grit
Can't think of a more wonderful advocate and relative than you. You have the heart and brains and ability to communicate. I happen to know something about what your niece has and have heard of the progress, so your slogan is definitely the right slogan. Those of us who live with a cancer diagnosis need to keep living to the fullest, and the support of loved ones like yourself is such a big part of that. This was a heartwrenching yet heartwarming post.
I'm not sure how to respond to this, Sally. I'm sorry all of you have to deal with such uncertain hardships. I'm a firm believer in positive affirmations in what ever form of practice. Prayers and good energy to all involved in this time of need. Again, I'm so sorry.
Sally---you have set the table for a grand meal of upcoming celebration. You've made everything ready. The plates are on the table and everything is gleaming. . . . and the crowd around that table is huge. Good Karma time.
Thank you, Sally. I got so tired of hearing about "positive thinking" and how it was supposed to make cancer go away. Right.

Positive thinking means, "I am going to make the best of this." Now that sort of positive thinking works.
This is too, too hard.

Kudos to you and your family for being brave and strong.

Hugs and prayers,
Denise
Oh, Sally. Damn it. Your cheering section is here for everybody...
So many good thoughts, hopes and prayers. I've known many people affected by cancers of various sorts during the last few years...and many victories. It's one rough road, though. I'm really hoping for the development of something less brutal than chemo. It does seem to work pretty well in terms of zapping cancers, but it gives people such misery when they're having it. I can really understand the relief of hearing the words, "The treatment won't be chemo."
Wow. I go to sleep late, get up late and well, wow. Here you all are, with your prayers, karma, good wishes, kind words and oh boy, positive advice and inspirational stories. They mean so much, everything you say means so much. I can't wait to show this to Karen and Judy and the rest of our family.

You don't want to hear me answer everybody, just know that I thank each and every one of you. And that my heart is filled with pride at how my OS family surrounds us with love.
Sending love, light, and all the good energy I can muster. Beautiful family, beautiful tribute, blessings upon you all.
Well, Judy has seen it, Karen is busily arranging for 'Alex Jay VHL Day' so from both/all of us many thanks for all your good wishes. And more, your good karma. And only positive thoughts. And Sal, thanks for your OS buddies. Love, Sally'sSisterJudy
OK, Sal, I have a little bit on my mind so when I read this I neglected to say, "RATED for wonderfulness." 'Dith
Such things put life into perspective very quickly. A couple of years ago, my wife was diagnosed with amyloidosis, an extremely rare condition that manifests in either of two ways: dead in six months or no problem. Waiting for the determination of which type made for some of the longest days of our lives.
Hugs and Love and Healing prayers go to your sister and your nephew; to your niece and your brother-in-law; to you and your extended family. One big roundabout hug.
Peace and healing to you and yours, Sally.
Please add my positive thoughts to these others, for you and your inspirational family.
May the God of our Mothers and Fathers, of the Past, Present and Future, guide Karen in this moment and each moment as she rests and breathes deeply in the healing Power of Love.
I will say it again for your neice "This is not the end of your life'. I am touched by your post at just the right time as I await news of a close friend who is undergoing a day full of sugery to remove a melanoma and 2 recurring breast cancer growths. For her too, I will say "This is not the end of your life". And I believe it for both of them and for Alex.
Many prayers to you and your family. Your strength is more valuable to her than you'll ever know. I attribute the love that surrounded me (and still does) to my recovery. 18 years cancer free. Be strong (you are) and never give up on hope! She needs ya'!
They need all the love they can get!
Incredible. I would kill to have a sister like you. She is wonderful but also lucky to have you and an incredible support system. Makes all the difference.
I am terribly sorry about this, Sally. I will keep you and your family in my thoughts and prayers. Being you, I am sure you are a rock for them. Be good to yourself in all of this, too. Some things are just too much to bear...
I just have to weigh in again and tell you all how much this means to me. Wait, this isn't about me. Well, what it means to me is that good people are making sure I can send even more good karma where it's needed most. Thank you all so much!

Oh, PS, if anybody has any empirical knowledge about treatments, alternative treatments, homeopathic stress-busters, please PM me.
I'm sorry for the news, but Karen's optimism is cause for joy. She sounds like a wonderful person. I'll be keeping all of you in my thoughts and prayers.
Hey Karen, I hope you're reading: You are gorgeous and now I know where Alex's angelic ringlets come from! (Sally knows I fell in love with his hair :)

Be who you are, feel what you feel, embrace whatever love comes your way. I'm sending some through this comment.
Words are not enough. She and her immediate family, you, your sister are all in my prayers. Your ministry of presence means so much to Karen and her family. May God be with you all.

Monte
om shanti, shanti shanti, sally. peace, peace peace.
Sally, I'm getting to this a bit late but wanted to add my good wishes and hopes.

I've taken care of quite a few people with cancer, including several who far outlived their prognoses. (e.g., given 4 mos to live, they lived over 4 years longer.) One thing they had in common was wanting to live and doing everything possible to do so. I've seen other people get a diagnosis, give up and die quickly.

All this has convinced me that hope and the will to live are hugely important, so you all are doing the right thing in focusing on the positive. This has also been noted in long term AIDS survivors (esp those that beat the odds back when most were dying quickly).

All MD's will tell you that prognoses are only guesses, based on averages, and that they're never that accurate. The mistake is when people hear them, believe them and basically will themselves to die on schedule. I decided long ago that if I ever get such a prognosis, I won't focus on it -- I'll focus on living instead.

Of course none of us can push back death forever, but I'm convinced that we can extend our lives with both tangible actions and mental and emotional attitudes - -and the love and support of our families and friends. (wanting to stay alive to be with people you love also seems a powerful motivator in my observation of people with cancer)

Hang in there. You are helping far more than you know by being there and supporting them emotionally, even more than all the practical things you are doing.
Your family is blessed to have you in their lives as a support. You and your family will be in my prayers.
Hope Karen makes a full recovery. She is lucky to have you.
Keeping you and your amazing family in our thoughts and prayers. Sending healing, peace, strength, hope, love.

Paws up.
Wishing Karen and your family the best.
Lisa, Lainey, Silkstone, thank you for your calls to action and support of same, you're so right, we need to stay positive. Karen is determined to push negativity away and we will help her.

Monte, Lonnie, Jess, Joan, Mary, the spiritual support, healing thoughts and prayers you send are absolutely equally important. To all of us.

I am so grateful for so many kind OS friends having my back. To those who've sent me PM's, I'm researching and replying as fast as I can... thank you!

Thank you ALL from the bottom of my very full heart.
Sally, you are such a good sister.

This is a gripping post, and inspiring, and heartbreaking. I admire how you did this, with the repetitions. Call and response, evokes the hope/despair/hope/hope rhythm beautifully.

I wish wishing worked. My wish for you and your family is a very good outcome, the least pain, the most LIFE, the best lessons, the least pain, the sweetest moments, the endurance of all, the least pain, strength, ease to the youngest hearts, the most enveloping love.
Sally--Consider this a massive positive thought going out to Karen and your entire family. The notion of "This is not the end of your life" is exactly the right sentiment. How many stories do we hear of people living 5, 10, even 20 years past where the "experts" told them they would? The power of the mind may actually be stronger than the power of medicine. If we think we can make it, often we do.
To paraphrase a great American -- "YES SHE CAN!!"
Thank you for such an honest, hopeful, and loving share.