Cancer survivor relies on faith, family
January 02, 2008
One night late in August 2003, 43-year-old Hanover mother Lori Uhl turned to her husband and said, “I’m dying.”
And that was before she knew there was an inoperable 7-inch tumor in her chest.
For several months, Uhl had been suffering mysterious symptoms, including an itchy rash, a severe cough and shortness of breath.
Doctors had diagnosed her with asthma and prescribed standard drugs. But Uhl’s symptoms only worsened – to the point that she believed she was going to lose her ability to breathe.
Uhl was desperate.
“I even guzzled Nyquil at night to knock myself out,” she said, “because my coughing and struggling for breath kept me up.”
She knew that if she was to get better, she had to take charge of her health care and be persistent. Several trips to the doctor proved fruitless.
Until finally, a chest X-ray was ordered. The results turned Uhl’s whole world upside down.
“You have lymphoma,” her
doctor said after subsequent tests. Her official diagnosis was “mediastinal diffuse large B-cell lymphoma,” a rare form of non-Hodgkin’s lymphoma.
Uhl’s extremely large tumor wrapped around her heart and was crushing her left lung.
She was advised to prepare a will and get her child-care situation in order.
Strangely enough, Uhl said she “felt a huge sense of relief” to finally get a name for the problem she believed would kill her, because this meant she could now receive the proper care.
But a long, agonizing week stood between Uhl and the start of her first intensive chemotherapy appointment at Johns Hopkins Hospital in Baltimore.
Waiting was particularly difficult for Uhl, who has a take-charge, non-nonsense attitude toward life.
“The hardest part was the not doing anything. I wanted to go at it and get the tumor,” she said.
Uhl also has a strong faith, and regularly attends Calvary Assembly of God in Hanover.
During that week, Uhl, desperate to try anything to save her life, turned to her church. There, the other members laid their hands on Uhl and prayed.
“I felt something happen,” Uhl said. “It was like a surge of electricity through my chest. I could breathe.”
All week, parishioners continued to pray for Uhl, and placed her on a prayer chain that stretched across the United States.
Before getting started with the chemotherapy at Hopkins, Uhl was given another CAT scan. But the Hopkins oncologist didn’t tell Uhl what she had expected to hear.
“Your tumor has shrunk 50 percent,” he said.
The rapid and dramatic decrease in tumor size over the course of one week left both doctors and the Uhls stunned.
Although she had taken Prednisone, a steroid, during that week that she waited to start chemotherapy treatments, Uhl attributes the shrinkage to the power of prayer.
“From that day on, I had total peace,” she said. “I knew I would be fine.”
Long road, lots of help
Uhl also knew that medical intervention was critical to her survival as well.
So Uhl then began a chemotherapy regimen and experienced the usual side effects of chemotherapy, including extreme fatigue and hair loss.
But she remained positive and optimistic.
“I didn’t mind,” Uhl said. She believed that “for every hair follicle they kill, they kill a cancer cell.”
Uhl did her best to take care of herself and her family during treatment. She took her anti-nausea medications as prescribed, and even got a wig so as not to frighten her children.
By the end of the treatment protocol, doctors determined that Uhl had responded fairly well, but the tumor was not completely destroyed. So, in February of 2004, Uhl underwent a bone marrow transplant, for which a lengthy stay in the hospital was required.
Her main concern was her family – her husband, Werner, 3-year-old daughter Hannah, and 11-year-old son Clarhens, who she had adopted from Haiti months before.
Uhl’s husband ran his own cabinet-making business, so his 75-year-old mother traveled to Hanover from Germany to help him care for the Uhl’s two children. The household was a mix of different languages, as Uhl’s mother-in-law spoke only German, Clarhens spoke only Haitian Creole and French, and her daughter spoke English. But they worked together to manage. Uhl’s church sent over meals to help further ease their day-to-day lives.
The bone marrow transplant went smoothly. And by the summer of 2004, she was completely cancer-free.
Uhl’s journey through the world of cancer, though, was not over yet.
Full circle
Once home and beginning to regain her energy, Uhl went on a mission to learn everything there was to know about her uncommon type of lymphoma. Her main goal was to locate information about any possible ways to prevent the cancer from returning.
She started her search on the Leukemia & Lymphoma Society Web site at www.leukemia-lymphoma.org. Uhl was drawn to their Internet message boards, anxious to hear what other patients had experienced and what they had learned.
However, Uhl found that, although she appreciated these message boards, she was frustrated that most of the information that was shared did not relate to her situation.
Most people had one of the more common types of lymphoma. And their symptoms, treatment protocol and prognosis were very different from hers.
When Uhl eventually located a couple of other women who shared her diagnosis, she branched off from the Leukemia & Lymphoma Society message boards and started her own Yahoo support group.
Here, the conversations could focus on issues related to their specific type of cancer.
She began the group with just herself as moderator and three other women.
In the few years that have passed, Uhl’s support group has grown to 65 members from all over the world, including Australia, India, Japan, and Indonesia.
In this group, the members offer emotional and moral support to each other, share their experiences with diagnosis, treatment, and recovery, and compare notes on side effects and outcomes.
One of the biggest benefits that Uhl has received from the group, she said, is “the feeling that I’m not alone.”
But more importantly, she said, “I feel like I’m giving back.”
Uhl, a self-proclaimed ‘information-nut,’ had spent countless hours doing research on the Internet on her type of lymphoma. She had hunted down and read everything available about her cancer.
A friend at the University of Maryland medical school library helped with her pursuit, pulling together stacks of abstracts from medical journals.
“I had a large knowledge base with which to help others,” Uhl said.
As moderator, Uhl spends a great deal of time writing to the other members of her support group, welcoming them, introducing them to others, and providing valuable treatment information, advice and support.
She reassures them that they are not alone either.
Diane Gelfand, a member of Uhl’s support group, said that people with her condition now “have a place to go where they can hear of other people’s trials and triumphs. It is a great source of comfort and information.”
In addition to her support group, Uhl and her husband have participated in a fundraising event for lymphoma to help raise money for research on the disease.
Today, Uhl suffers from some adverse effects of cancer treatment, including difficulty focusing and decreased energy levels. And she still travels to Hopkins once a month for immunoglobulin G treatments to maintain her immune system. But she has learned ways to cope with these effects, and is grateful to have her health back.
Her family is happy and healthy as well. Uhl continues to attend services at her church and remains grateful for their prayers and help. Her husband’s business has thrived, Hannah is a carefree, friendly first-grader who excels in school. And Clarhens is a driven athlete and an honor roll high school student.
Uhl feels that she has come full circle.
When she was stricken with cancer, her family, friends, and church reached out and helped her during the ordeal. Uhl now puts to use her practical attitude, unwavering spirituality, and vast lymphoma knowledge to do the same for other cancer patients.