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Archive for Sunday, January 29, 2006

Life anew at thirty-six

Julie Cowdin battles with a cancer gene

January 29, 2006

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It had been a long day, and Julie Cowdin was getting ready for bed. Glancing at her bathroom mirror, she thought she noticed a redness on her left breast. A closer look got her attention.

She asked her husband, Tim, for a second opinion.

"Skin look different? : Weird?"

He agreed.

Before going to bed she peeked in on Riley, her 4-year-old daughter who was already asleep.

That was Jan. 8, 2004. Julie was 34 years old.

The next day she was diagnosed with breast cancer.

Eight days later she had her first chemotherapy treatment.

Five months later, in a Lawrence Memorial Hospital operating room, Julie lost both breasts, her reproductive organs and 23 lymph nodes. This was followed by breast reconstruction. Her surgeries lasted 11 hours and required the skills of five physicians.

It was also her 35th birthday.

She had eight sessions of chemotherapy before her surgery and 28 doses of radiation plus oral chemotherapy after her surgery. By now it was the end of October.

Incredible.

But today, Julie will tell you that the probing, the surgery, the sticking, the chemo and the radiation were easier to handle than the emotional ride that followed.

"I was mad, I was angry, and there were all these people saying, 'You should be so happy to be alive,' and they just don't get it," she said firmly, arms waving.

"Yeah, I'm great. I'm bald, I'm burned, I've been poisoned, I'm scarred and I've been on the fast track to death."

Familiar symptoms

Let's back up.

The morning after discovering redness in her breast, Julie got on the Internet and didn't like what she found.

"I had eight of the 10 symptoms listed for inflammatory breast cancer," she said. They included redness, swelling, warmth to the touch and changes in the skin's density.

Video

Interview/slideshow with Julie Cowdin. Part two of "My Cancer, My Story." Enlarge video

She said the changes were subtle, including her skin texture. One area "looked like the outside of an orange or lemon."

Julie did what any 34-year-old woman would do in a crisis: She called her mother. Rhonda Young responded quickly and agreed they needed help. By 1:30 that afternoon she'd been shoehorned into the schedule of Dr. Mark Praeger, a Lawrence surgeon.

"He diagnosed the disease with a sonogram, did a biopsy and had us wait in his office while he hand-carried it to the lab," Julie said.

When Julie and her mother left the surgeon's office, she had an appointment to see oncologist Jay Andersen.

So by circumstance, and in less than 24 hours, Julie left the life she'd known for 34 years and was drawn into an arena no one is ever prepared to enter, where trusting your physician takes on a whole new meaning and making choices can have lifelong impact.

Julie has never taken illnesses lightly.

Video

"River City Weekly" part 1: Journal-World senior editor Bill Snead talks with cancer survivor Julie Cowdin. Enlarge video

"If I had a cold, I knew it was lung cancer, and it always turned out to be nothing. Maybe it was just preparing me for this."

After more blood work, she had her first consultation with Andersen that included her husband, mother and stepdad. He told them Julie had stage 3B inflammatory breast cancer.

"I liked his direct approach," she said. "He basically told us how things were going to go, and he expected nothing less than a cure."

His plan: Do eight rounds of "dose dense" chemotherapy (every two weeks instead of every three).

"I was so happy someone was taking charge because I was obviously in no shape to be driving the train," she said.

Her oncologist suggested she be tested for cancer-causing genes.

"There was a lot of cancer on my father's side of the family," she said. "His sister died of breast cancer when she was 46 and his twin had laryngeal (larynx) cancer.

With her family risk factors, plus Julie's diagnosis, doing the cancer gene test seemed obvious.

Video

"River City Weekly" part 2: Journal-World senior editor Bill Snead talks with cancer survivor Julie Cowdin. Enlarge video

LMH oncology nurse Shari Kretzschmer explained that if Julie's blood tested positive for the gene, she had an increased risk of developing cancer in her other breast, or ovarian cancer and possibly others.

"So I said, 'OK, what's the good news?'"

Julie tested positive for the cancer gene BRCA2.

That simple test presented horrific complications.

"So what this meant in terms of my treatment and in order to narrow my risk as much as possible, I would have a double mastectomy, a hysterectomy and it was my decision whether or not I should have some type of reconstruction," she said.

"It was just all too much. I couldn't handle that part of it right then. I was halfway through chemotherapy. I had four more treatments, and that was all I was trying to do."

Playing it straight

The Cowdins were advised by friends and professionals to tell their 4-year-old daughter everything that was happening with her mother's illness.

"It was great advice," Julie said. "Believe it or not, we were told that the truth is so much better because their little minds can come up with stuff that's worse than things really are.

"So we decided we'd be straight with her. She'd know all the doctors, know everything that was going to be happening and she rolled with it and did beautifully."

Julie's Friday chemotherapy sessions took the better part of a day. Tim accompanied her to all eight treatments. Riley went to some.

"I remember when the chemo was nearly gone I'd tell the nurse, 'Don't take it yet, I want every last drop of medicine in that bag.'"

On Saturdays following her chemo Julie, Tim and Riley went to the LMH emergency room for a shot of Neulasta to bolster her white blood cells.

She was in training for surgery.

"After a few visits to the (LMH) Oncology Department and into the 'Cancer Community,' chemo day would be like old home week," she said.

Sometimes, while hooked up to an IV in a reclining chair she'd turn off the lights and try to relax, thinking "it might work better not to fight it, just let it happen."

Two weeks after her eighth round of chemotherapy, Julie and five surgeons spent 11 hours in an LMH operating room. They performed a hysterectomy, a double mastectomy, removed 23 lymph nodes (13 tested positive for cancer), the chemo port and did TRAM flap breast reconstruction.

TRAM flap involves using the transverse rectus abdominis muscles (TRAM) in the lower abdomen along with abdominal tissue, skin and fat to construct breasts.

Seven weeks after surgery, she began a series of 28 radiation treatments taken five days a week. These were followed by four rounds of oral chemotherapy for "insurance."

The Cowdins had targeted Halloween 2004 as the day they'd celebrate the end of Julie's cancer treatments by going trick-or-treating. They did it.

That was more than 10 months after her late-evening discovery in the mirror.

Support, and shock

During her chemotherapy treatments she lost her hair, as happens with most chemo patients.

"You think losing your hair is not going to be a big deal, but it is. It was the first outward sign that I was sick, and most people don't react well around 'sick' people," she said, making quotes with her fingers. And her daughter "obsessed" about it.

Many of her friends became scarce.

But she said her illness brought some unexpected blessings.

One was the Lawrence cancer support group Bosom Buddies.

"What a wonderful, amazing group of women - and they would do anything for you," she said. "Baby-sit, help you clean your house, you name it."

One problem.

The median age when most women develop breast cancer is around 62.

"I was 35 and dealing with different issues like fertility and being the mother of a young child and possibly adopting down the road."

She said recovery in her mid-30s in Lawrence was a lonely proposition.

She met Mary Tilley, a Bert Nash social worker who also taught at Kansas University's School of Social Welfare.

"She was a breast cancer patient and a wonderful, warm person who was my age," she said. "She had two young children : we had a lot in common : lots to talk about."

They'd spent time on the phone and the two would meet to talk about their new lives.

With little warning Tilley died Oct. 18, 2005, a year after Julie finished her last cancer treatment.

Julie was shocked.

"She was like me, and if this could happen to her then it was a reminder that not everyone comes out on the other side of the disease. It was awful."

Most times Julie thinks the physical part of cancer was the easier part, rather than the issues that follow, the losses.

"From losing your hair to losing your breasts to losing your femininity with the hysterectomy and losing that security, that invincibility that you have in your mid-30s - where life is good and you're supposed to be raising your family and dealing with your career and this-could-never-happen-to-me kind of thing and you have to deal with that, too, meet your own mortality - that's a very humbling experience. Extremely scary. I can't think of any other way to describe it."

Julie was upset and wanted to talk about it.

"Once you can accept it," she said, "that's the long part of that process. Then you have to live with it, which is almost ironic. Then people say, 'Well, everybody is going to die.' Yeah, but not everybody is going to die from this or with this. I don't even know how to describe it. People who have been there know."

Julie made the decision to have breast reconstruction on the same day as her other surgeries.

"So when you wake up you have these breasts. They're not your breasts yet. They're different breasts. They're on your body but you don't own them yet. Even waking up with breasts wasn't what I intended it to be. We talked about options : implants.

"I couldn't do implants if I wanted to do the reconstruction immediately, and I knew I wanted to do it immediately because I didn't want to wake up without breasts. Then you wake up with these strange breasts that don't look like breasts. These aren't my breasts," she said with eyes wide.

"You hear the stories about the babies getting mixed up at the hospital and you wake up and say, 'Whoa, who do these belong to?'" she said. "But, you just get used to yourself. You start getting comfortable and they become your breasts."

There are a lot of self-image issues.

Julie's cancer was fed by estrogen produced by her reproductive organs, necessitating the hysterectomy.

"What they don't tell you until afterward is you're not going to be able to take any estrogen, so you hit menopause at 70 miles an hour."

She described night sweats, mood swings, sleeplessness, lack of energy and hot flashes. "About the only thing they can help you with is sleeping medications that take the edge off the mood swings so you don't become a homicidal maniac."

She said she was sure Tim remembers when she went through a period where she was "angry and hateful. Everything was wrong, my being mad at the world, why me, self-pity stuff for a month and a half.

"But he was so good about understanding what was happening and knowing that it wasn't him or me and helping me get through this, letting me express really vile emotions."

Normalcy takes work

Doctors told Julie she'd be off work for 12 weeks. But in seven weeks she was back working full time in accounting at Cutler Repaving Inc., 921 E. 27th St.

She would take the day off for chemotherapy and arranged to have her radiation treatments on her lunch hour.

She's been touched by the support and encouragement from her employers.

"My work was the only way I could stay sane or normal during the time these abnormal things were happening," she said.

Julie and her mother had a surprise following her treatments.

"My father had tested negative for the cancer gene BRCA2 even though he had cancer in his family. My mother was tested for it late last year," Julie said. Her mother, 61, tested positive. She has thus far been cancer-free.

Riley won't be tested for the gene until she's 18.

"I know that if she does have the gene that it's not necessarily a death sentence," Julie said. "If she does have it and we make no medical advances between now and then, we know that she will need to be monitored very closely."

Julie now has opportunities to speak to groups about her cancer. She counts it as a blessing.

She spoke at the opening of the LMH Breast Center, at the KU Medical Center in Kansas City, Kan., and at Southern Illinois University. In February she will go to Tampa, Fla., to speak at a heredity breast and ovarian cancer conference.

Julie considers telling her story part of her healing process.

She reached in her purse and pulled out a snapshot of herself sitting on a couch without a hair on her head.

She held it in front of her face.

"I carry this around with me for times when something comes along that I think I can't handle," she said with moist eyes. "I look at this picture and say, 'If I made it through this, I can surely make it through whatever's facing me now.'"

It's a reminder for her of how fragile life is and that all of the things she takes for granted, once again, can all be taken away very quickly.

"I'm still a rookie. I'm still reacting to headaches as possible brain tumors and stomachaches as colon cancer."

She added, "Maybe those insecurities never go away."

Julie said her daughter "lost the mommy she knew" and was the reason she had breast reconstruction.

"Obviously she'd seen me before the surgery and I wanted her to see that this can happen to you and you can go through this and you can still look like a woman, still be feminine and you can come out on the other side pretty much intact."

Comments

dcok 7 years, 8 months ago

Julie- I have never met you, but I know your husband. We have just lost contact. I am his cousin living in Oklahoma. Bernard was my father. Anyway, your story is worth telling over and over again. Thanks for the opportunity to share it. Best of everything to you. Duane Cowdin, Norman, Oklahoma.

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baldwinCITY 8 years, 2 months ago

Julie, as one of the pollyanna's in the writing group, I am thrilled to see your SMILE and loved, loved, loved how you brought all the facts and emotions to the Channel 6 newscast. You are truly awesome and I wish you all the best. Kathy Jardon

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jco26867 8 years, 2 months ago

To dj, Thanks so much for looking & posting!! How is life in CO???
Have Nate take a look at the pics to see our Old English puppy--he's only 6 months old & 60 lbs. Love you guys, jc

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dj 8 years, 2 months ago

Hey Jules!

You look great! UB told me to be sure to read these articles about you. I really appreciate your honesty regarding the anger, fear and losses as well as how you speak so powerfully of the positives that family, co-workers and hospital staff play in your recovery. Something not mentioned here, and others need to know, is that through all of this you managed to keep your sense of humor. And, Edgar, your poetry is amazing!

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catladymrg 8 years, 2 months ago

Julie -

You are remarkable and your poetry is amazing in its depth and honesty. I applaud your courage and determination.

I e-mailed your story to my 38-year-old daughter in Washington who has had stage 4 metastatic breast cancer since November 2000. Her breast cancer was diagnosed three months after the birth of her son. Thanks to an outstanding oncologist and a variety of successive chemo drugs, she is still with us.

My daughter would highly recommend a group that may also be of interest to you. It is the YOUNG SURVIVAL COALITION, which is a national organization for young women who are breast cancer survivors. Their web address is: www.youngsurvival.org

>

Wishing you all of life's many blessings!

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maggie 8 years, 2 months ago

Congratulations, Julie!

You have certainly been though a lot, but your inspiring story provides encouragement to everyone fighting this disease.

Perhaps you would like to add your story to the Inflammatory Breast Cancer Patients site at:

http://www.ibcpatients.org/

Continued good health and long life!

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christie 8 years, 2 months ago

Hey Julie, you look GREAT. Glad to hear you beat it. You're an inspiration to anyone and everyone.

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