AJC > Sandy Springs > Blog > Archives > 2005 > October > 24 > Entry
DEL.ICIO.USA story of remission: 30 years later
The Atlanta Journal-Constitution
Imagine you’re at the point in your life where the good stuff is just beginning. Then someone tells you you’re going to die.
It’s August of 1975 and you should be thinking about your senior year at Auburn. You should be thinking about your friends at the sorority house, dates with handsome young boys and yelling “War Eagle!â€? at football games. But something’s wrong.
You’re spending the summer working as a lifeguard in the small town in Alabama where you grew up. You’re supposed to swim 20 laps a day to stay in shape, but lately it’s getting harder and harder. During your breaks you have to lie down on the table in the break room.
One day a friend pushes you into the pool and you’re afraid you don’t have the strength to pull yourself out. If you weren’t so exhausted, you’d panic. At home you try to pack to go back to school but it’s just too much work. And then one day you can’t get out of bed.
There’s a monster lurking in the shadows. Because of your youth some suspect you have mono. Your doctor knows better. He sends you two hours away to the University of Alabama/Birmingham Medical Center. They perform a bone marrow test, a procedure you’ll have too many times in life.
It’s Sept. 9, 1975, and they tell you you’re feeling bad because you have Acute Lymphocytic Leukemia (ALL). They can treat it, but you only have a 15% chance to make it. The monster is loose.
It’s Sept. 9, 1975, and it’s a beautiful early fall day. The sky is deep blue, the clouds are white and puffy and there’s a hint of l in the air. On this most perfect day they tell you you’re probably going to die.
They send you back home for the night because they don’t have a bed for you. Your dad takes you to the beauty parlor to get your hair washed because you’re so wiped out you can’t raise your arms.
Later he has to take you to get a blood transfusion to buy you a few hours of normalcy. You tell him you’re going to be one of the 15% who make it. He’s with you.
The next day you’re back in Birmingham and they begin a 21-day protocol of drugs and radiation. Back then they didn’t know as much about ALL as they do now and they basically flood your system with everything they can think of to kill the monster. At the end of three weeks you don’t have remission, so they do it again.
You have some good days when you laugh, some not-so-good days when you feel tired and some awful days. At one point you can’t think of anything better than walking without that damn IV pole at your side. After all, you’re going to be in the 15%.
It’s Oct. 22, 1975 — your father’s birthday — and they tell you you’re in remission. You’re weak and your immune system is shot, but the monster has been staggered.
Things would be better if you had gotten remission the first time. Again you hear that 15% business, this time applied to your chances to keep remission. But you didn’t get this far to lose. There’s more chemo and radiation and your hair falls out.
The doctors tell you it’s out of their hands. The longer you stay in remission, the better your odds are. You wrap a scarf around your head, go back and finish college. You don’t know exactly what you want to do next, but if you only have months left, you’re not going to get your ticket punched sitting at a desk in some office.
You hit the road to visit friends. You find yourself in Hilton Head. It’s full of young people. It’s fun. You decide on the spot to stay. Just like that. You go home, get your stuff and move.
You work at a score of jobs. You’re a photographer, a lifeguard, a waitress, a shop girl. Your pals are waitresses, golf pros and tennis bums. Everyone seems young. Work is just a way to kill time until the next party, the next picnic, the next boat trip. If things are going to end more sooner than later, let it be like this.
You play tennis, plant a vegetable garden and ride your bike everywhere. You sit for hours on the beach. Climbing the career ladder is for other people - you just want to feel the sun on your face and smell the salt air.
Slowly it starts to sink in. You’re not dying. The monster is gone.
A few months at the beach becomes three years and suddenly you realize that a savings account might be a good thing. You eventually leave Hilton Head and begin the phase of your life without a sword over your head.
Your hair is still thin from the chemotherapy and your teeth are fragile because of the radiation treatments. Your back is dotted with scars from bone marrows and spinal taps and you remember every single one. You can’t be a blood or organ donor, and getting insurance is a pain. Small potatoes for someone who stared the monster in the eye and told it to go to hell.
If this is a lot to imagine, consider having lived it. My wife Carol did. And because she’s been there and come back, she quietly gives back.
She was there when they started Camp Sunshine for teens and kids with cancer. She did the three-day walk to fight breast cancer twice, once as a walker, once as a crew member. Once a very vocal non-runner, she’s completed two marathons with the Leukemia & Lymphoma Society’s Team in Training program and helped raise thousands to fight leukemia. This winter she’s going to serve as a mentor for Team in Training.
That doesn’t count the phone calls and letters to people who have just been diagnosed. Or their families. Her message is simple - the monster doesn’t always win. There’s hope.
We’re lucky if we meet one genuine hero in our lifetime. I married one.
Comments
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By Michelle
October 24, 2005 10:18 AM | Link to this
Wow. That story really inspired me. I have just dealt with a frightening scare myself. I had VIN III, carcinoma in situ of the vulva. It sure wasn’t fun and the recurrence rate is really high - I needed a story like this - thank you!
By J.T.
October 24, 2005 11:02 AM | Link to this
Jim - God bless to your wife and to your family. I pray that the Beast is kept at bay forever or at least until your wife reaches a ripe old age.
I know the pain that cancer causes family members all too well. My little sister was born with Blastoma and Lymphoma. She was not given long to live. In the all too short time she did live (just 13 days shy of her second birthday), she learned to walk, to talk (in almost full sentences) and to laugh and play when the horrors and agony of the chemotherapy and radiation weren’t causing her to scream in pain - pain that her little mind could not comprehend…pain that she never lived without, but might some times be abated just a bit for her to enjoy herself. I was young myself when she died, but I remember her - I cherish those memories and I wonder what I fine woman she would be today. I see her in my mind’s eye and I know that one day I’ll see her again.
More recently, a very dear, immediate relative went through years of radiation and chemotherapy, staving off colon cancer that had been diagnosed far too late for any hope of success. She went from being a former beauty queen and very athletic and active woman to a mere 68 pound shell of her former self. She held on and held on, cherishing every minute of every day as fully as she could and drinking in as much life as she could. Eventually, the agony for her was more than her poor body could endure - operation followed operation as the cancer spread and ravaged her bones and other organs in her body, but she would not let go. Even though every moment of her life was spent in sheer agony - though morphine was provided at very high levels, she didn’t want to go. Several of us finally told her it was okay to let go - that we loved her too much to see her in such pain and though we needed her, we would be able to get along without her and that we would always love her. We knew she would always be there watching over us…She died hours later. The loss is still felt and forever will be.
Because I’ve had benign tumors in the past and because of the history of cancer in my family - as a former sun worhsipper - I stay out of the sun now and I make sure that I get yearly check ups. I encourage anyone and everyone to do the same. Life is far too precious and short to not take any and all precautionary steps to circumvent the very real possibility that you may be diagnosed with cancer. Believe me, the pain that is felt, as you, Jim, and your wife can attest, is beyond horrible for the victim, but is also felt by the loved ones surrounding them. So if someone doesn’t do it for themself, then please do it for those you love.
By Becca
October 24, 2005 11:26 AM | Link to this
Wonderful! This is a beautiful story of triumph. You are a very lucky man to be married to such a strong beautiful woman. Carry on.
By Jenna's #1 Fan
October 24, 2005 11:36 AM | Link to this
Awesome. The tears were flowing as I read your column. Thank you for the uplifting message this morning, and thanks to your wife for letting you share her story. When the beast is bearing down, sometimes it is so difficult to remain upbeat.
This coming December will mark four years since my niece was diagnosed with brain cancer…fibro sarcoma. She had just turned 9 two weeks earlier, and had celebrated Christmas only days before. It is a rare cancer, not usually found in children, almost never in the brain. Very little is known about this cancer, including successful treatment.
Needless to say, it was devastating news…almost unbelievable. Going into surgery, her parents were told to hope for the best, but to be prepared for the worst. The outcome was questionable. Jenna pulled through with absolutely no impairments…truly amazing! Unfortunately, the nature of this particular tumor is recurrence.
Jenna, too, has undergone extensive treatment. She’s had a lifetime of radiation and has undergone four brain surgeries to remove the tumor that keeps coming back. She does have limitations now. She has physical deficits on her left side. The hair on the crown of her head has never grown back. So, she wears a leg brace, and she has an extensive wardrobe of caps, and a wig that she chooses not to wear. The important thing is that she’s still here. She’s very excited to become a teenager this December.
Currently, treatment has shifted back to chemotherapy. So far, so good. She even attends school (seventh grade) during the weeks when she is not undergoing treatment. She truly is an amazing child. A year ago, nine days following her third brain surgery, Jenna participated in her cousin’s (destination) wedding.
It is very difficult to sit by and watch what this disease can do to a child and a family. It becomes life…fighting it every moment, year after year. The world just about stops spinning for them during the weeks of the scheduled MRIs. Unfortunately, most people do not take action unless they are directly affected by cancer. Our very large family was no exception.
A great way to get involved with cancer awareness and fundraising, and to include children, making it a family event, is the American Cancer Society’s Relay for Life. It is a celebration of life and a community event. Money is raised by purchasing luminaries, either in honor of a survivor, or one who is undergoing treatment, or in memory of one who has lost the battle. The events are usually held at local high school tracks. When those thousands of luminaries are lit around the track,it is a most sobering site. One of the most inspirational moments in life is when the survivors walk the initial lap around the track, illuminated by the candles.
In 2002, Jenna led the group of survivors at their local high school. Jenna’s team consisted of 70+ people…mostly family members. (A team usually consists of ten.) Since we live “out of state”, we were not present for the big event in our hometown. However, the event is held on different weekends, throughout the country, in the spring.
Also, during our summer visits “home”, there is an annual “Gelatin Jump” fundraiser for the local chapter of the Lymphoma & Lukemia Society. Many local businesses sponsor the event, and it is covered by the media. Every person, either a survivor or a supporter, who raises $200, gets to slide into a pool of gelatin (yuk), then gets washed off by the firetruck hoses. Our son was 11 years old when he participated for the first time. He, along with every other kid present, thought it was “totally awesome”. This fundraiser, too, became a family event. Aunts, uncles, cousins, grandparents all attend to watch and cheer as the kids slide.
Congratulations to your wife Carol. She is an inspiration. Keep spreading the word.
By anonymouns
October 24, 2005 12:29 PM | Link to this
Congratulations to your wife.
My sister met the monster right after she graduated from college. It took a bone marrow transplant to cage the monster up, and send him off forever.
She got married, to a wonderful man with 3 kids. She got her graduate degree, and focused on being the best mom and the best teacher she could be.
Then the monster that we all thought was dispatched forever came back. Since then she’s continued to be a great wife, mom, and teacher (and sister too), all the while holding the monster at bay. (I’ll brag - she was named teacher of the year last year.)
My sister is one of my true heros.
She’s back in remission now, but she faces the monster every day.
While the monster waits in the shadows to pounce again, she goes on with her life.
Now - if it’s ok, I’m going to give you a secret recipe to create more heros. Those heros are called Bone Marrow Donors.
One of the most effective weapons against the monster is a bone marrow transplant. My sister was leukemia-free for 12 years. While the rest of the world walks around saying “Gosh, I wish there was something I could do”, if you become a bone marrow donor there IS something you can do.
It doesn’t really hurt, it doesn’t take a lot of time, it won’t cost you anything, and you can save a life/
Maybe it isn’t your sister, or brother, or relative, or friend who needs a bone marrow match - maybe it’s a small child on the other side of the country; maybe it’s a mom with two small children; maybe it’s a police officer with a family; maybe it’s a college student; maybe it’s a teacher. It could be anyone. It doesn’t really matter who it is.
It doesn’t hurt - you go have blood drawn. They test it and put it into a computer registry. One day you may match someone. You could get called tomorrow. You may never get called.
If you match someone, you have more testing done - to make sure that you can donate safely. When I donated, they extracted the bone marrow through needles in my hip bone while I was under general anesthesia. I was sore for a few days. Big deal. I would have been in a lot more pain if my sister had died.
Now it’s even easier in many cases. They just hook you up to a machine like you’re donating platelets.
No question, Jim’s wife is a hero. I’m sure both Jim and his wife will agree: Yyou can join the ranks of hero too, by hhelping someone else slay the monster. Get tested. Get in the registry. Save a life.
By Karen
October 24, 2005 02:18 PM | Link to this
Congratulations to your wife! My sister was diagnosed with ALL in 1976 as an 8 year old after my mom found 3 small lumps in my sister’s head. My sister went through treatment after treatment at St. Jude Hospital in Memphis,TN, then finally after an experimental treatment, she went into remission in 1979-1980. My sister is “cured” and now has a 13 year old daughter. Thank the Lord for St. Jude Hospital. It is a life saver!
By Jo
October 24, 2005 03:22 PM | Link to this
Jim, you too, are very very brave. Life has no guarantees & the future is promised to no one. OK, I myself am alone & it wouldn’t impact anyone if something happened to me but JT is right about having yourself screened to avoid inflicting agonizing grief on your loved ones, if you’re lucky enough to have any…
By Michelle
October 24, 2005 04:35 PM | Link to this
I admire your wife for the courage that she had then and even the courage that she has now. I will pray for all of you. Thank you for the blessings that you give to other people just by showing someone that they are not alone. I have always been blessed never to have to go throught anything like the story that your wife told. She is an inspartion to us all.
By Patti
October 25, 2005 08:01 AM | Link to this
Jim - thanks for the story - my daughter was a Camp Sunshine teen - unfortunately the monster won and she passed away in February
By Brenda Brown
October 25, 2005 09:14 AM | Link to this
I am so thankful for your story. May the Lord Jesus Christ continue to bless and use your wife. She has been kept here for a powerful purpose and she is fullfilling her destiny. Carol, continue to let God use you because there is no better gift than to be used by God. Many, many blessings.
By Shelia W-L
October 25, 2005 10:14 AM | Link to this
Jim,you and your lovely wife are a blessing to anyone who is going through a terrible time right now. I so enjoyed reading her story. My sister-in-law has undergone breast cancer surgery in recent weeks and they didn’t get all of it and she is now going through radiation and chemo, it affects the entire family greatly to see a member physically fighting this disease when there is nothing we can do except pray. I pray for continued remission for your wife and that my sister-in-law will soon reach the remission stage.
By Sally Hogshead
October 26, 2005 09:23 AM | Link to this
Jim and Carol - thank you for reminding us all to embrace each moment of our lives to the utmost. This story is breathtaking and precious.
A favorite quotation, from Anna Quindlen:
“Live your life as if it’s a terminal illness, because if you do you will live it with joy and passion, as it ought to be lived.”
By Jeri
October 27, 2005 03:55 PM | Link to this
Thank you for sharing that remarkable, inspirational story! What a woman you have! Thank you.
By Cheryl Strayer
October 28, 2005 02:56 PM | Link to this
This was an amazing article and actually brought tears to my eyes. I have had breast cancer twice, went through 2 rounds of radiation and one round of chemo. I have survived monster-free for 8 years. I believe a big part of successful treatment is your attitude going in. Sounds like Carol had the right attitude 30 years ago and it’s still there today. Congrats and God Bless.
By Stan Seals
October 30, 2005 08:54 AM | Link to this
I have a niece that had a malig tumor behind her left eye at 3 yrs old. She is now 16 and in remission. You have a good story that relates to our family. God bless. Stan
By Priscilla McRee
October 30, 2005 11:12 PM | Link to this
Just returned from a Women’s in Faith Conference in Charlotte and read your story as I listened to Sheila Walsh singing “God I’m Amazed by You”. God knows when he created us how long we have on this earth and his plan was to let Carol live so she could be a witness to other people suffering from cancer. God Bless both of you and may God continue to shine on both of your lives.