Gloria Johns Was Told “Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;” She Proved Otherwise

Every so often, you come across a story of hope, courage, and dogged perseverance that renews the spirit and lifts the soul.  Gloria Johns’ story is a classic example.  Gloria Johns is a 61 year old stage IV ovarian cancer survivor, who has battled the disease for nine years through five cancer recurrences.  When Gloria inquired about enrolling in an ovarian cancer support group after her initial diagnosis, she was informed by a local health care professional that “[o]varian cancer patients don’t live long enough … to have support groups.”  Gloria Johns proved otherwise by establishing the first ovarian cancer support group in Alachua County, Florida (which encompasses the city of Gainsville). … Recently, Gloria’s inspirational story was featured in an online article (reprinted in full below) written by Jessica Chapman for The High Springs Herald.

Every so often, you come across a story of hope, courage, and dogged perseverance that renews the spirit and lifts the soul.  Gloria Johns’ story is a classic example.  Gloria Johns is a 61 year old stage IV ovarian cancer survivor, who has battled the disease for nine years through five cancer recurrences.  When Gloria inquired about enrolling in an ovarian cancer support group after her initial diagnosis, she was informed by a local health care professional that “[o]varian cancer patients don’t live long enough … to have support groups.”  Gloria Johns proved otherwise by establishing the first ovarian cancer support group in Alachua County, Florida (which encompasses the city of Gainsville).  Always encouraging, Gloria tells the women in her support group to “never take a day for granted,” while reminding them to ignore statistics because “women with ovarian cancer are not numbers.”

Recently, Gloria’s inspirational story was featured in an online article (reprinted in full below) written by Jessica Chapman for the The High Springs Herald. At the end of the story, Gloria states:  “My goal in life now is to help others on this journey and give them hope to overcome. … I believe with all my heart that God has ordained this for my life to make me the person he wants me to be.”  Ralph Waldo Emerson, the great American poet and essayist, wrote: “… [T]o leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded.” By any measure, Gloria Johns has succeeded.  Gloria’s ongoing support group work represents not only a job well done, but a life well spent.

We want to extend special thanks to The High Springs Herald, Jessica Chapman (author), and Edward Izquierdo (photographer) for allowing us to reprint Gloria Johns’ inspirational story.  We also want to thank Gloria Johns for her living example of courage, perseverance, and most importantly, hope.

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Johns’ beats cancer five times, forms support group that no one said could exist

By Jessica Chapman For The High Springs Herald, High Springs, Florida.

ALACHUA — In 2002, at 2 p.m., Gloria Johns’ eyes rolled back in her head, and she was gone. Then she was floating above her body, watching as doctors worked on her.

Her platelet count had just dropped to four. A patient’s platelet count is at a dangerous level when it is below 10.

When she woke up at 10 p.m., the nurse told her someone had sat with her all day. The woman with long, blond hair never said anything. The nurse thought it was Johns’ daughter, but it wasn’t.

She walked into the elevator just as Johns woke up.

Johns believes an angel sat with her until she woke up.

Photo By Edward Izquierdo. When Gloria Johns first attempted to form a support group for ovarian cancer patients, she was told they don't live long enough to join a support group. She proved otherwise and has the photos (above) to show it.

Photo By Edward Izquierdo. When Gloria Johns first attempted to form a support group for ovarian cancer patients, she was told they don't live long enough to join a support group. She proved otherwise and has the photos (above) to show it.

In 2000, Johns, 61, was diagnosed with stage IV ovarian cancer. For nine years, she fought through five recurrences of cancer.

And beat them all.

Throughout all the support from friends and family over the years, one thing Johns didn’t have when she first began treatment was a support group that could relate to what she was going through.

“I went to the patient liaison at North Florida (Regional Medical Center) to get one (a support group when she was first diagnosed), and she [the patient liaison] said, ‘Ovarian cancer patients don’t live long enough for us to have support groups,’” Johns recalled as she sat at the dining table in her kitchen. “That was discouraging.”

Ovarian cancer is the fifth most common cancer-related death among women. That is more deaths than any other cancer of the female reproductive system, according to the American Cancer Society.

After her third recurrence with cancer, which is when her heart stopped, she decided to start her own support group, the first ovarian cancer support group in Alachua County [Florida].

Johns, who has lived in the Alachua area for 13 years, mentioned the support group to her doctor, who thought it was a wonderful idea, and she started the group, Johns elaborated.

Before support groups for ovarian cancer and the success in cancer research began, tips like the ones these women share were few and far between, Johns said.

Ovarian cancer was known as the “silent killer” because by the time it was detected, it usually had spread to other areas of the body, according to the Mayo Clinic.

“Only about 20 percent of ovarian cancers are found before tumor growth has spread beyond the ovaries,” according to the Mayo Clinic.

“It’s overwhelming what cancer is doing to people,” Johns added. “It changes you.”

Along with encouraging the women in her support group to “never take a day for granted,” she reminds them to not look at statistics. Women with ovarian cancer are not numbers, she said.

Statistics include a wide range of people. The women in statistics include the young, old, those with different stages of cancer and those with multiple recurrences, Johns said.

For example, those statistics might not be true for a young woman in stage two of cancer, she elaborated.

Johns does believe that encouraging and supporting people can help prevent future ovarian cancer-related deaths. Johns frequently e-mails and calls other ovarian cancer patients throughout the country in need of support.

Many of the people who contact her have heard of her through oncology offices throughout Gainesville [Florida].

But while much of her time is spent encouraging other cancer patients, she makes sure to take care of herself, too. She has a rule: after one of the women has gone to hospice or home to family, she will not go see them, but she will call.

“I think that would be extremely detrimental,” she said. “I’ve never done that. I’ve been real careful about getting extremely close to people.”

Six women in the group have died. She has called and sent cards to them all, but she prefers not to talk about them.

Despite the hardships and losses, Johns has learned an important lesson in her journey with cancer: everything has a purpose, she said.

She believes that God’s purpose for her was to use her experiences with cancer to help and encourage the women facing the same problems.

Through five recurrences with cancer, five different treatments, five times losing her hair, five times facing the fear of dying, Johns could have used the support from the group she started.

“The first recurrence is worse than the first time in my opinion,” Johns said. “The first recurrence is tough because you were praying you’d beat this thing.”

The first treatment she received was nine months of carboplatin and taxol chemotherapy. After she went through these chemotherapy treatments, she was in remission for 10 months. Then the cancer came back, and she had three more chemotherapy treatments during her first recurrence.

“It never held a whole year,” Johns said. “It seemed to come back every August.

When the cancer came back two years later, she had a stem cell transplant at Moffitt Cancer Center in Tampa.

“You’re so weak (after the transplant) you can’t work,” she said. “You can’t be around animals. You can’t be around dirt because your immune system is so shattered there’s just nothing there.”

However, a weak immune system didn’t slow her down. When Johns returned home, she kept up with her regular activities, including teaching the college and career Sunday school class and leading the church choir at Antioch Baptist Church in LaCrosse.

The treatment was supposed to keep cancer from coming back for four years, but despite her hard work at returning to a normal life, the cancer came back two years after the treatment.

She, again, went through six months of chemotherapy, but the cancer came back in less than a year. This is when she went into anaphylactic shock. The anaphylactic shock was a result of too much chemotherapy over the past years.

After recovering, she decided that as long as she was in remission from the one and a half chemotherapy treatments she received, she would give her body a rest and stop treatment.

Almost three years passed before the cancer came back for the last recurrence in 2007, but this time she was prepared, Johns said.

Johns and her doctors knew that if the cancer came back, she would go through CyberKnife radiation, a new treatment previously used on brain tumors. The doctors were unable to use radiation on ovarian cancer patients until the CyberKnife radiation treatments began.

Her energy level went up after the radiation, and as a result, she felt “like myself again,” she said.

Ever since that treatment, she has been in remission. Thanksgiving 2008 marked two years in remission.

“I’ve been trying to get there for eight and a half years,” she said.

Now, Johns said she makes sure to appreciate her time, and she knows that if she loses the fight with cancer, as a result of her support group, something will be left behind “that was worth doing.”

“My goal in life now is to help others on this journey and give them hope to overcome,” Johns said. “I believe with all my heart that God has ordained this for my life to make me the person he wants me to be.”

SourceJohns’ beats cancer five times, forms support group that no one said could exist, by Jessica Chapman, News section, The High Springs Herald, published online May 29, 2009.  The article and accompanying photograph were republished by Libby’s H*O*P*E*™ with the permission of the The High Springs Herald, Jessica Chapman (the author) and Edward Izquierdo (the photographer).

3 thoughts on “Gloria Johns Was Told “Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;” She Proved Otherwise

  1. im a 2nd time ovarian cancer survivor…But Im in treatment now but on a 6 week chemo break because of my reaction to a new kind of chemo after having 8 doxil…Im on Avastin and Taxotere but I won’t have another until all the blisters go away doc told me…Being on Doxil I thought my cancer couldnt spread…but it has spread to my liver on the outside of it colon and spleen…They said no surgery right now but wants to continue the chemo once these blisters go away…did yours spread to your liver?

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    • Dear Allison,

      I am truly sorry that you did not fully respond to Doxil. In terms of Libby (to whom this website is dedicated), the clear cell ovarian cancer did spread to her lungs and liver. But, as you know, each ovarian cancer patient is different based on the specifics of her case (e.g., subtype of ovarian cancer, residual tumor after surgery, cancer stage, etc.).

      I took the liberty of performing a search of http://www.clinicaltrials.gov using the search terms “ovarian cancer” and “liver metastasis.” Click here to view the search result for clinical trials that are recruiting or are about to recruit.

      You may also want to register with a new national “matching” registry called http://www.researchmatch.org. Once you registered, researchers from participating institutions can contact you to see if you are interested in participating in clinical trials that may benefit you.

      Finally, you may want to review the Libby’s H*O*P*E* post dated March 10, 2009 and entitled High-Dose Stereotactic Body Radiation Therapy (SBRT) Effective Treatment For Patients With Low Volume Lung or Liver Metastases. I do not know the specifics of your case, and therefore, do not know if you could benefit from SBRT. You may want to discuss this concept with your doctor.

      I wish you great success with the Avastin/Taxotere combination. If you have any additional questions, please feel free to contact me. Best, Paul

      Like

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