Wednesday, January 21, 2009

I have reached a new milestone in this provocative journey.

My doctors don't say it, at least not in my presence, but I know that I was dying. Not in the way that we are all dying, in that we are growing older each day, but as in feeling the life force that is me, slip away. After my surgery in September, these same doctors were telling me that I should be feeling better each day. The days post-surgery turned to weeks, then months, and I was not improving. Instead, it became increasingly more difficult to perform the simplest tasks, beginning with arising each morning. There was no dramatic event; the two trips to the hospital were unpleasant, but there were no ambulances, sirens or melodramatic scenes a la House or ER. Just a feeling of quietly slipping away.

The changes brought on by Tarceva were subtle, until one day I again felt alive. One day I woke up and there I was. That's how I knew that this life-threatening disease had become, in fact, life-threatening.

I can't help but be filled with metaphors for this experience. I am fortunate to have so many fond memories, brought about by the wealth of people and experiences that are the fabric of my life. When I think of where I was in December, and where I am now, I see and feel sunlight. PFS. Since 6th grade, Carole has always been there reminding me to Pray for Sun. I had the feeling, way back then, that she was on to something, but I have now lived that phenomenon. It is winter, and January weather has not been kind to Atlantans, but I am enveloped in my own stream of sunlight. This is the recurring metaphor: from darkness to light.

There is another metaphor prominent in my mind at this point. I went from devastating diagnosis to drawn out staging process to simultaneous chemotherapy and radiation to Emory to MD Anderson (remember Medical Industrial Complex sometimes known as Cancerville?) to suspected metastasis then back to treatment then treatment hiatus then surgery then post surgery recovery that wasn't then back to Emory and back to the hospital (twice) and more consultations then more chemotherapy and more tests then another devastating diagnosis then Tarceva. It was like being squeezed through a very constricted and abrasive tube. Or tossed around in a dryer on a long, hot cycle. I can finally breathe now. Literally. My one lung, if cancer free, will probably provide me with a very decent quality of life, as far as breathing goes. (BTW, last year I bought my first new pair of ski boots in 15 years. I plan to use them.)

More difficult, I think, is coping with the effects, the scars, of where I have been. Even more daunting is knowing there is a high probability that the cancer will recur. Clouds that could restrict or block out the sunlight. Next month I will have the first scan since I began taking Tarceva. And perhaps I will be lucky enough to be able to face more scans over many more years. That would be a good thing. But first I have to prepare for this one.

Know that I am truly thrilled to get out of bed each day. It is a joy that previously went unnoticed and unappreciated. Now sunlight isn't just rays from the sun that I take for granted, and clouds are no longer innocuous vapors that simply come and go. Each precious breath now counts. Of course, each breath always counted. I just didn't know it or appreciate it. Aside from skiing, I am not sure how I will use this new found awareness. I want to be productive, that is a given. And for as long as possible, I will be walking, maybe even running, in sunlight.

If you're coming with me it's time to get a good pair of shades.

34 comments:

Anonymous said...

Thank G-d!!! We pray for continued good news. You made my night Elyse.Take care and thanks for keeping us informed. Michelle S.

Wendy said...

Elyse,
I've got my shades for the sunlight! Thank God for the good news, and thank you for all that you give to the world and to all of us. Your spirit is indeed an inspiration. Wendy

Team Dream 2009 said...

Nothing short of a miracle. May all your future miracles be as sweet.
xoxoxo
AKW

Bruce M. said...

You are amazing..Keep sending us good news.

Bruce M.

Anonymous said...

we all share this journey with you...through sunlight and darkness.....may this part of the journey keep going strong

N and L

Ann said...

Elyse,
Only you could do this, and only you could share this with everyone so beautifully and articulately.
You are truly an inspiration.
Much love,
Ann

Anonymous said...

Yes! I KNEW that was light we were seeing at the end of the tunnel! I am wiping tears away as I write this. You have made me sit still and find a way to embrace the day as a gift, not another series of chores or things to cross off my list (and you should see how long that list is!). Being grateful for what we have does not come naturally and through you I am trying hard to remember that these gifts are not to be taken for granted. You are teaching me mindfulness. Thank you for this gift, Elyse. I will try hard to live up to it, but you are one helluva an act to follow. Thank you for sharing your incomparable grace. With love (as I reach for my shades), Cynthia and family

David S. said...

Very nice to read this, Elyse. It confirms this really is a week full of hope and change!

Love from DC,

- D.

Anonymous said...

Rock on, girl....and wear those sunglasses at night! May the sun shine so brightly that you need two pairs!!

Big hugs,
Lorie, Lexi, Justin and Dakota

Eric said...

Awesomely beautiful writing and insights. Deep Powerful Truth

Anonymous said...

Hooray! You are bringing us all along in your journey into the sunlight and into the deepest appreciation of our precious lives. Thank you for that. I am waiting to hear back from Cumberland- before you go skiing, lets get you into the warmth and magic of the Georgia coast. Love, Michelle N.

Lenore and Scott said...

I had to read this posting several times to completely digest all your thoughts. You touched on so many things (very eloquently, of course).
Since it's hard to have an original thought these days, I must quote one of the great prophets of our time:
Mama always told me not to look into the eye's of the sun.
But mama, that's where the fun is.
Yes she was blinded by the light,
revved up like a deuce,
another runner in the night.


As with so many things in life, we take for granted that which we don’t even think about – walking, breathing, talking, laughing. And as the saying goes, you don’t know what you have until you no longer have it. That statement rings most true in regards to health. You, my friend, have taken the curse of cancer and used it to find the gift of (in)sight – the ability to see and cherish the smallest (but so important) joys in life - like being able to get out of bed each day.

Along with the ski boots, I am sure you will be using oars, kayaks, canoes, bicycles, running shoes, yoga outfits….
Keep on keepin’ on sista! You are an inspiration to those of us with no ‘license’ to bitch and moan.

Anonymous said...

Count me in on the walk...with or without dogs?

Deb

Anonymous said...

Elyse

What a fabulous blessing that you never noticed your ultimate fear until you looked in the rear-view mirror!!

So happy you've seen improvement and are regaining your fighting spirit!!!.

Stan

Anonymous said...

And. . . there's more daylight at the end of the day again. I'm glad you've turned a major corner and are looking to the future again. Keep on keepin' on! Mary Waggoner

Forrest said...

What great news to read. You can really tell you are so upbeat. I hope you continue on this path.

Charna said...

Elyse,
I'm so happy that you're feeling the sunshine. Sheryl Crow's "Soak up the Sun" comes to mind. I've been celebrating that you've found joy in basking in the sun and would like to share her video:
http://www.youtube.com/watch?v=DOLcdm6wg7s
Turn up the volume and sing like no one's listening, dance like no one's watching. Rock on!
Charna

Anonymous said...

Elyse,
Great to hear the latest news... I want to make sure I have the right shades for your walk....I'm leaning toward the ones that light up???
http://www.ctswholesalesunglasses.com/index.asp?PageAction=VIEWCATS&Category=88

Enjoy the day....

Howard D.

Anonymous said...

Shades are on and I'm ready to venture out with you!
Thank you Hashem!

Steve Beagle said...

I am one who is never at a loss for words. As I have been the modern day Willie Loman in a new position I have been remiss at viewing my personal email from my lonely revolutionary road. So on this grey rainy morning as I play "Pokemon" monopoly with my rugrats I start to cry uncontrollably. My children wonder what is wrong with me as I head to the bathroom to gain control.

Your words Ali are so palpable, so touching, so real. The ups, the downs, the fear, the small steps of success, the understanding, the twists, the turns and as the Beatles sing - " The Long and Winding Road.."

As from day one your resilience and your will to win is about the most inspiring personal testament to overcome I have ever witnessed.

Rock on Ali.. your strength will of course bring you to a the sun however that sun is defined. LH&P Steve for the family..

Mariana said...

Hi Elyse,


I'm so glad you are feeling great, you are a big light of live.

Love.

Mariana

Mariana said...

Hi Elyse,

You are a big light of life, and I'm glad to be your friend.

Love

Mariana

Anonymous said...

I am a true believer in prayer--I know that prayers are answered. The improvement you are experiencing in your health is another testimony that my continuing prayers for you are being answered

I love you all day every day

J Denys

Rachel said...

Because you cant top the Beatles:

Good day sunshine, good day sunshine, good day sunshine

I need to laugh and when the sun is out
I've got something I can laugh about
I feel good in a special way
I'm in love and it's a sunny day Good day sunshine, good day sunshine, good day sunshine

We take a walk, the sun is shining down
Burns my feet as they touch the ground

Good day sunshine, good day sunshine, good day sunshine

Then we'd lie beneath the shady tree
I love her and she's loving me
She feels good, she knows she's looking fine
I'm so proud to know that she is mine.

Good day sunshine, good day sunshine, good day sunshine
Good day sunshine, good day sunshine, good day sunshine
Good day sunshine, good day sunshine, good day sunshine
Good day...

xxxooo

debbi chartash said...

Elyse,
I never have met a person more inspiring than you. I continue to keep up with you and I have all great hopes for you. You will beat this.

Love, debbi

Marshall Hyatt said...

am SO thrilled you're feeling better and feeling more active and that Tarceva seems to be working for you. keep up the good work!

Marshall

Terri said...

Elyse,

We are so happy for your new awareness. Go with the flow.

Love, Terri & Barry

STEVE BEST said...

Elyse,

Melissa and I think of you often, keep up with your BLOG and are thrilled at your progress. We think of you during Mi Sheberach at TKC and our good wishes are with you always. I hope G-d continues to answer all of our prayers for your recovery.

STEVE & MELISSA BEST

Susan said...

The light and warmth from all of us for you is always there because YOU are LOVED!
Hugs, Susan

Ann said...

Elyse,
So nice to know that when I tried to make very last minute lunch plans with you, you were already busy! Out and about enjoying life, and doing your regular thing. I guess a lot of people have bought the sunglasses....and are enjoying using them with you. Keep it up!!!!
Ann

Steve Beagle said...

OK Ali I promised some topical albeit a little dated laughter...

Thinking about you always LH&P Steve for the family..
________________________________

Barack Obama now the 44th president of the United States. As you know, we have never had an African-American president. We've had a Dutch-American president; we've had an Irish-American president; we've even had an incompetent American president. But never an African-American.

John McCain was so moved by today's events, he suspended his campaign again.

Obama gave a great speech. But he may have promised too much. Like when he promised to bring the dog from the "Marley & Me" movie back to life. That seemed over the top.

Every single TV network was covering the inauguration . . . except Fox; they’re still doing a recount.

Two million people turned out in Washington to see the inauguration. I don’t think this many people have been so excited since they put cheese into pizza crust.

Some people got bored while waiting for the inauguration so they started doing the Electric Slide. Apparently, the best way to celebrate our first black president is to do the whitest dance imaginable.

Bill Clinton got the biggest response from the crowd. Apparently, thousands of women yelled, “That’s him, officer!”

Very cold in Washington. In fact, with the wind chill, President Bush’s approval rating reached minus 13.

Two million people were there to watch Obama take the oath. I think Obama owes a debt to President Bush for this. The only reason the crowd was that big was because so many people are unemployed and they have the time.

It was very emotional. The liberals in the crowd haven’t cried this much since they spilled their lattes in their Priuses.

What a day for America, and more importantly, what a day for Oprah.

Barack Obama is our 44th president. As our first African-American president, he fulfills the dream of Martin Luther King, and as our first Hawaiian president, he fulfills the dream of Don Ho.

Tomorrow, Americans will get to hear those four words we’ve all been waiting to hear: “former President George Bush.”

President Bush said he is leaving Washington with his head held high — because it’s the best way to spot shoes that are coming at you.

This is also Dick Cheney’s last full day in office. He spent the entire day trying to get the price of gas back up to four bucks a gallon.

A lot of celebrities are in Washington for the inauguration. In fact, so many celebrities are out of town, over in Malibu they had to close the Promises rehab center for the week.

In exactly 12 hours, Barack Obama will be sworn in as the next president. I am not going to get excited — you’d be surprised how much President Bush could screw up in 12 hours.

He could launch an attack in the Bahamas.

Some people are angry that the inauguration festivities are going to cost $170 million. After hearing about it, Oprah said, “Don’t worry — this one’s on me.”

Obama held a dinner in honor of John McCain. You could tell it was for McCain because it was over at 4 p.m.

Happy Martin Luther King Day.

Isn’t it fitting that in his last day in office, President Bush takes a holiday?

I have inauguration fever. ‘Twas the night before the inauguration, and all through the house, not a creature was stirring, as Dick Cheney tortured a mouse.


Hotels in Washington, D.C., are overbooked. A lot of VIPs have no place to stay. Things are so bad, Bill and Hillary Clinton have to share a room.

During President Bush’s farewell address, he said he always did what he thought was right. Far right, but right.

Now the real pressure is on. He only has three days left to respond to Hurricane Katrina.

Barack Obama plans on issuing an executive order right away. He is going to close Guantanamo Bay. He says he needs the money for new prisons to hold Democratic mayors and governors.

Some Starbucks are going to be selling coffee from China. But don’t worry — you’ll still be able to get the unleaded.

Top Ten Signs Obama's Getting Nervous

10. New slogan: "Yes we can . . . or maybe not, it's hard to say"
9. In moment of confusion, requested a $300 billion bailout from the bailout industry
8. He's up to not smoking three packs a day
7. Friends say he's looking frail, shaky and . . . no, that's McCain
6. He's so stressed, doctors say he's developing a Sanjay in his Gupta
5. Been walking around muttering, "What the hell have I gotten myself into?"
4. Offered governor of Illinois, Rod Blagojevich, $100,000 to buy his old Senate seat back
3. Standing on White House roof screaming, "Save us, Superman!"
2. Sweating like Bill Clinton when Hillary comes home early
1. He demanded a recount

On this date in 1991, the U.S. attacked Iraq. I’m so glad that’s all behind us now.

I’m not sure how this is going to go, but Barack Obama is moving his mother-in-law into the white House with him. I thought this was the guy who was going to do away with torture.

Obama had a busy day: he worked on the stimulus plan; had a classified intelligence meeting; met with congressional leaders . . . meanwhile, John McCain? He backed over his mailbox.

How about Barack Obama’s new limousine? It’s a 100-foot long, heavily armored Cadillac . . . I think the real news here is that General Motors sold a car.

I’m actually surprised Obama has a limousine. I thought he’d go to work on a magical unicorn, galloping through traffic.

It was really cold today: Iowa had a record low — 40 below zero. It was 17 below in Chicago. It got down to -50 in Maine. It was so cold in Maine, lobsters were asking to be boiled and dipped in melted butter.

It’s so cold in the Midwest, there are reports of people actually wearing the hideous sweaters they got for Christmas.

Lake Eerie is supposed to completely freeze over. Which is interesting, because a lot of people were predicting something would freeze over before we elected an African-American president.

Carolyn Dinberg said...

Elyse,
Steve Rakitt, President of Federation, sends out a weekly d'var torah--This week's parsha is about the plague of darkness, and Steve makes a wonderful connection between light and faith, faith that, as we all recognize, has helped you get to the light. I thought you'd like to see it:
***
"Ever since they’ve been young, my kids have asked that I leave a light on in the hallway so they can sleep better. Darkness for them – and for all of us – is unsettling, unnerving and even scary.

This week’s parasha, Bo, continues the story of the plagues visited upon the Egyptians as Pharaoh defies Moses’ demands to let the Israelites go. The ninth plague is that of darkness, while the eighth (locusts) brought darkness upon the earth and the tenth – the slaying of the firstborn – brought darkness to all the houses of Egypt. The three final plagues, and their common theme of darkness, set us up for the profound exodus of the Jews from the darkness of slavery to the light of freedom.

What does it take to pierce darkness? Light, while effective, is only temporary: the candle burns out, the flashlight battery expires. Darkness, as the Israelites would come to learn, can be overcome with faith. It guides us, provides comfort and even helps us sleep better."
***
All of us in the blogosphere are sleeping better these days. Best, Carolyn

Anonymous said...

Elyse is feeling better-the Steelers are in the Super Bowl........all's right with the world!

Anonymous said...

You are loved more than you know.