SMITHSBURG — When Nicole Bachtell talks about living with a rare cancer, don't expect a pity party.
She'll have none of that.
Instead, she prefers dwelling on the positives: the friends she has made, women who have become like sisters, the love and support of her family.
She excitedly talks about a vacation to London and Dublin two years ago, recent concerts she's attended and her participation in a bicycle fundraiser.
She goes to work each day, enjoys lunching with friends and driving her "sassy little 2012 Volkswagen Beetle — bright red and fast."
Bachtell has stage IV uterine leiomyosarcoma, a rare cancer that strikes about six out of every million women who are diagnosed with uterine cancer, according to the Sarcoma Foundation of America.
But she refuses "to sit in bed and be sick," she said, which tells you something about the 46-year-old Smithsburg woman.
Words like tenacity and courage come to mind.
Leiomyosarcoma or LMS is a cancer of the smooth muscle cells, which make up involuntary muscles found in most parts of the body, including the uterus, lungs, liver, stomach, intestines, walls of blood vessels and skin. It can affect men and women.
"Specifically, I have uterine leiomyosarcoma, which comes from the smooth muscle layer of the uterus," Bachtell said.
There was nothing in her past — no health issues or family history — that would have alerted her to the disease, she noted.
In fact, her life was pretty normal.
Bachtell said she graduated from Smithsburg High School in 1983, where she was president of the Drama Club, editor of the newspaper, and a member of the marching and symphony bands and the Latin Club.
After a year at Hagerstown Junior College, she transferred to the University of Maryland College Park and graduated in 1987 with a Bachelor of Science in journalism — news broadcast.
"After college, I moved around the Washington, D.C., area — from Columbia (Md.) to Silver Spring (Md.) to Washington, D.C. to Alexandria (Va.), Arlington (Va.), Sterling (Va.) and McLean, Va.," Bachtell recalled. "Most of my jobs were sales related, from office supplies — kind of a Dunder Mifflin girl — to research databases and, finally, IT staffing sales. I even had a stint managing a mosaic studio and taught classes in mosaics."
In was in late 2007, she said, that she began to have worrisome symptoms.
"I had uncomfortable menstrual cycles with heavy bleeding. And, despite exercise and diet, maintained a little 'pooch' or baby belly — and I was not pregnant or trying to be pregnant," Bachtell said.
During her 2008 annual exam, Bachtell asked the physician assistant if everything was all right "because things just didn't feel right."
She was told she had a tilted cervix, which Bacthell thought was strange because she had never been told this in the past.
"I'm pretty sure a tilted or inverted cervix doesn't develop overnight," she said. "That falls in the category of born this way."
Bachtell said she returned to the same gynecology practice in February of 2009 and asked questions about the same issues.
"During my examination, the same PA started the exam and asked the nurse to come over and take a look because she couldn't see my cervix," Bachtell recalled. "That day, the office did an ultrasound. They told me I had a 12-centimeter fibroid tumor and would need a hysterectomy."
Bachtell said the news was "delivered nonchalantly, as if it were no big deal. I was very upset. I was 43 and otherwise healthy. I had no immediate plans to bear children, but still wanted to know I had my parts to do so."
Bachtell said she began doing research and discovered that large fibroid tumors are not common in caucasian women, who are more prone to multiple or small fibroids which are often, but not always, benign.
"I also started to research treatments," she said. "I wasn't satisfied and the GYN's office didn't offer up any tests. I lived in McLean at the time and checked out Georgetown University Hospital. GUH has lots of information regarding uterine fibroids on their website and it was local for me, so I got myself an appointment with the GYN team."
Bachtell said she was seen quickly and put through a battery of tests.
"I had another ultrasound, an MRI and a colposcopy — a biopsy of the uterine wall — as well as a Pap smear."
She and her doctor also had candid conversations about how her treatment would go, she said.
"I wanted to save my organs, if possible. It never occurred to me at this time that I was facing cancer. Not a thought."
Bachtell said she had a follow-up with her physician on April 9.
"He had my pathology lab (results) sent to his colleague at Johns Hopkins and they came back with leiomyosarcoma. I said, 'OK, that's cancer. So I guess we have to have the hysterectomy.'"
At this point, Bachtell said the physician had already set up an appointment with Dr. Willard Barnes in the Lombardi Cancer Center in Washington, D.C.
"He said that if it were his wife, he'd have done the same thing. Lombardi is a National Cancer Institute site, so I knew I was in good hands," she noted.
Since her diagnosis, Bachtell said she has had all of her treatments through Georgetown University Hospital.
Her record is as follows:
- April 28, 2009 — uterine artery embolization, which is an interventional radiation procedure to cut off the blood supply to the mass and uterus and prevent blood loss during surgery. For benign fibroids, this can be the only treatment needed.
- April 29, 2009 —radical hysterectomy. "My mass also had put pressure on my urethra, so a urologist had to rebuild it. I was in the hospital for a week, developed a pelvic infection and then went back in for another two weeks."
- August and September 2009 — 25 pelvic radiation sessions, three internal radiation sessions.
- December 2009 — metastasis to my pancreas, which is a huge, big deal."
- Jan 21, 2009 — Whipple procedure (a major surgical operation involving the removal of the pancreas, duodenum and other organs.) "I was in the hospital for three weeks, came home and overdosed on pain meds. That's another story altogether."
- November 2010 —"PET/CTs show [metastasis] to my back, both thighs and stomach."
- December 2010 — Endoscopy to remove the stomach [metastasis]. A trip to New York City to see Dr. Martee Hensley at Memorial Sloan-Cancer Center and to Kettering, Boston to see Dr. Suzanne George at Dana Farber Cancer Institute. "Both agree a systemic approach via gemcitabine/Taxotere is next."
- Jan. 6, 2011 — start GemTax at GUH.
- July 2011 — CyberKnife (targeted robotic radiation) with Dr. Brian Collins at GUH for left leg.
- January 2012 — no new growths.
Today, Bachtell said, her condition is stable.
"I am stage IV and I will have to monitor and manage (my cancer) for the rest of my life with PET/CTs and treatments," she said. "The published outlook is about 50/50 for over five years after distant mets."
Bachtell said her day-to-day activities "are mostly normal. I just get tired sometimes and have to put myself to bed and rest."
Prior to her first diagnosis, she was laid off from a job "and had a year to be sick."
She returned to work in December of 2009 with a new career path at Lockheed Martin, where she still is employed.
"My family and friends, new and old, have become my support network," Bachtell said. "I have rediscovered true-blue friends and made new ones. The support from literally around the world is overwhelming and has been my strength. I embrace it all."
Since being diagnosed with leiomyosarcoma, Bachtell said she has met other women with the same disease.
"I track others through a Yahoo user group," she explained. "Three women in Montgomery County, Md., found me and we have LMS Ladybug lunches. We sadly lost a ladybug in January. Our group has expanded to seven in the Maryland-D.C.-Virginia area."
Bachtell said of few of the ladybugs rode in the Cycle for Survival for Memorial Sloan-Kettering Cancer Center in February and raised more than $3,000.
"We email and talk and support one another," she said. "We are instant sisters."
Bachtell said there currently is no cure for LMS.
"There are treatments that make it manageable, but no definitive cure," she said. "I'm hopeful that a cure will be found. But, realistically, I think that finding ways to manage cancer like other chronic diseases is just as good."
Despite the fact that she is stage IV, Bachtell said she does her best to keep her spirits up.
"I don't allow myself pity parties," she said. "If I do feel mopey, I don't let others know. My support network is amazing. I have been in awe and humbled by the generosity in work and thoughts by family, new friends and old. When I feel crappy, I remember that there are others suffering more. I also feel like I can't let down all my supporters. They have lifted me up and I want to spend time with them."
Bachtell figures that LMS will be her official cause of death — "but not until I've shown LMS a thing or two. That was supposed to bring a chuckle. If we don't laugh, we will cry."
More information about LeioMySarcoma is available at www.leiomyosarcoma.info
Bachtell's story also can be followed at www.caringbridge.org/visit/coco2010