Sunny Carney's book on cancer helping others cope
-
Sunny Carney with her husband, Mark, and, from left, sons Nolan, 13; Austen, 15; and Logan, 14.
Share with others:
When Sunny Carney decided to write a book about her experience dealing with a rare form of cancer, she didn't want to focus on the treatment, the "indescribable" pain or any of the negative things about life with cancer.
"It talks about the good in cancer," she said.
Mrs. Carney, 41, of Plum, has been chronicling her thoughts in a blog for more than three years. In 2004, she was diagnosed with low-grade neuroendocrine carcinoma, also known as carcinoid. This particular type of cancer is tricky to diagnose, and by the time patients receive a proper diagnosis, the disease is too advanced to effectively treat, Mrs. Carney said.
"By the time the tumors show up, they're in major organs and it's too late," she said.
The ribbon color marking support for carcinoid research is a zebra print because the cancer is so difficult to diagnose; Mrs. Carney's doctors initially suspected anxiety or an autoimmune disorder.
Doctors often tell medical students, "If you hear the sound of hooves behind you, assume it's a horse, not a zebra," reminding them that what is wrong with a patient usually is something simple, not something obscure. In practice, this often is true: Most of the time, it's a common disorder, such as asthma, but sometimes it's something more rare, such as carcinoid.
It was a medical student who ultimately nailed down Mrs. Carney's diagnosis, she said.
Carcinoid cannot be cured, but it can be treated. Mrs. Carney underwent FDA-approved treatments and was involved in clinical and experimental trials in the United States, but those only helped for a short time. She has traveled to Switzerland three times to receive a treatment called Peptide Receptor Radionuclide Therapy, in which small receptors travel directly to the tumors and kill them. She said the treatment has stabilized her tumors, giving her more time. She plans to return to Switzerland Jan. 20 to undergo another round of the treatment.
Mrs. Carney initially was diagnosed with ovarian cancer when she was 25. Doctors removed one of her ovaries, and she was told it was unlikely she'd be able to have children, but if she and her husband, Mark Carney, wanted to try, they should start right away.
"I was blessed with three amazing children," she said of her sons, Austen, 15, Logan, 14, and Nolan, 13.
"To me, they were just my miracles, because I'd gone through such a hard time," she said.
She was in remission for more than a decade. Then, at 37, she was training for a marathon and had trouble breathing. She initially was diagnosed with adult-onset asthma before doctors discovered a tumor in her lung. Carcinoid tumors often don't show up on X-rays and require a special test called an octreotide scan to be seen.
"My lung tumor engulfed the whole lung and it did not show up on the X-ray," she said.
Over the past several years, Mrs. Carney, her husband and her sons have posted their thoughts and feelings to her blog, sunnycarneycarcinoidcancerfund.blogspot.com .
"When you're diagnosed with cancer, everyone who loves you is diagnosed with you," she said.
Her husband agrees. Her treatment has been full of highs and lows, but Mr. Carney said his wife's attitude helps the family stay stable.
"Her natural state is to be positive, and mine is as well," he said. "Her attitude definitely makes it easier for me and our three boys and our family and friends and neighbors to want to fight with her."
Mrs. Carney said writing on the blog has been beneficial for her whole family.
"It's so weird because we live two separate lives," she said. "We live the family life and we live the cancer life.
"A lot of times, the cancer life runs into the family life. ... However, there's a lot of time that the cancer's not even in our heads because we have these postings and we're so open about it."
Mr. Carney said their boys are "about as well-adjusted as three teenage boys can be."
He said the boys push buttons occasionally, but "it's teenage buttons, not cancer buttons."
Mr. Carney once hacked into the blog and wrote a love letter to his wife; it has since been taken down because it is included in "The 'Sunny' Side of Cancer," the book Mrs. Carney recently self-published.
Each trip to Switzerland costs the Carneys $50,000 to $75,000, Mr. Carney said, and each book sold helps to pay for those treatments.
The family initially printed just 100 copies to raise money for Mrs. Carney's treatment and for other people who have carcinoid. She never expected the book to take off.
She thought, "if anything, my boys will have them," she said of the copies of the book.
But now she can't keep up with the demand. She's held about 20 book signings in the past two months.
Mrs. Carney said she hopes that the book helps other people with carcinoid because when she was first diagnosed, she went looking for a book on how to live with the disease.
"There was nothing. There were no books about how you force yourself to get out of bed every day. There was nothing about living with it.
"I think my book tells people those little things. You appreciate the hugs and the little ornament they bring home and [your child] making a basket at a [basketball] game and turning and pointing to you and thinking, 'Wow. That meant more than a million dollars to me.'
"And I don't think if I wasn't diagnosed with cancer that would mean as much to me," she said.
"I'd take a cure, but I wouldn't want to take away what we've learned in going through this.
"I know that there's a really good chance I'm going to die from this in the next couple of years," she said. "In the time I've had, it's been remarkable and we've made a difference."
Mrs. Carney's oncologist, David Friedland, said a number of people with the same diagnosis as Mrs. Carney have come to him and mentioned the blog and Mrs. Carney's story.
"The most unique thing about her case is her, not the cancer," said Dr. Friedland, of UPMC's Hillman Cancer Center. "That's a relatively rare cancer, but she's an extraordinary person.
"She's really an advocate for her own case. She doesn't just sit back and take it. She's doing everything she can to help her situation."
"The book, 'Sunny' Side of Cancer," is available through Mrs. Carney's blog . Donations to Mrs. Carney's cancer fund also can be made there.
First Published January 12, 2012 12:00 am
