Community activist completes cancer treatment, continues to give back
By Melissa Komar
It will be business as usual when Santa and Mrs. Claus come to town for 300 kids in Port Richmond this December.
The Port Richmond on Patrol and Civic Association hosts a free, annual Christmas party each year, complete with gifts, food and a visit from the jolly old man himself and his wife for kids from the area.
PROPAC president Ken Paul and his wife, Anne Paul, play the dynamic duo, but for Anne, make that “Mrs. Santa,” there will be one slight change.
“I used to just curl my hair,” she said. “I have no hair now. So, this year, Mrs. Santa will have to get a wig.”
Paul is referring to her new look: She lost her hair during the past year during treatment for cancer (Ken shaved his head in solidarity with his wife, and her 6-year-old niece had a heart shaved on the back of her head).
On Nov. 15, 2017, Paul was officially diagnosed with multiple myeloma and kappa light chain disease and started treatment two days later.
The cancer is a blood cancer, which goes into the bone and develops into bone cancer, and the kappa-LCD is an excess of the proteins, which will then stick to the heart or kidneys, according to Paul.
Paul’s went to her kidneys.
“They’re sticky little buggers, and they clog your blood vessels and then your kidneys don’t work right,” she said. “And, the kappa chains keep producing and they wreak havoc. And, they also hide in your body, so they have to find a way to kill them.”
After being diagnosed, Paul began a bioengineered treatment that included a needle, a pill and steroids.
“It was a very easy treatment. It killed off 90 percent of the light chains,” she said. “But, there was still that 10 percent and that’s when I got the stem-cell transplant.”
Every Friday for 16 weeks, Paul would go to Jefferson Torresdale Hospital for the treatment.
And, every week, Paul would bring snacks for other people receiving treatment.
Snacks ranged from chips, to pretzels, to bags of candy — some purchased by the Pauls, others donated by Herr’s, Casani Candy and Patty-Pat Kozlowski — -as a gesture to give back for how well she was treated by staff.
“I was very lucky in my treatment. After I received the injection in my stomach, I would go home,” she said. “Some of those women were there six to eight hours hooked up to their chemotherapy. And, they are very appreciative of everything you do for them.”
Because Paul responded so well to treatment, her stem-cell transplant transplant was moved up to May 7. She received a mass dose of chemotherapy to wipe her entire system out before transplanting thousands of her own stem cells back into her body.
Paul remained in the hospital for five weeks until her numbers came back up from zero.
“The stem-cell transplant is like rebooting your computer,” Paul said. “Everything starts over, and they are put in there to rebuild my immune system.”
When Paul came home, home health care would visit twice a week for blood collections and to check her vital signs.
Every night, Paul received a bag of nutrition intravenously for 12 hours because she hadn’t eaten for two months during her treatment and was considered malnourished.
During the day, she received two bags of saline to assist her kidney function for four hours.
“I didn’t get any more treatment after the chemo, it was all just maintenance,” Paul said. “I slept a lot, but I felt better and got stronger each day.”
Paul went for a check-up with her doctor on Tuesday, Aug. 7, and because she was “doing so wonderful,” he decided to take Paul off the saline and nutrition bags.
Paul, 62, asked her doctor what she could do with her abundance of unused medical supplies, and was advised to throw it away because the hospital couldn’t take it back.
The topic came up again with Paul’s home health care team, Penn Home Infusion Therapy, and one woman advised calling the local animal shelter to take it.
“And, they did take it,” Paul said. “I called the ASPCA. The only thing they don’t take is supplies they would have to pay to have removed, like needles or medications. We took two big boxes of supplies to them. We were glad someone could take them because they were all brand new.”
The Pauls dropped the supplies off to the Pennsylvania SPCA, 350 E. Erie Ave., Saturday, Aug. 11.
Supplies included rubber gloves, heparin, bags of saline solution, urine specimen bottles, wound care kits, IV lines and blood collection tubes.
While Paul spent many hours receiving treatment over the past nine months, she never let it stop her from staying involved in the community.
A member at Grace Church and the Incarnation and an active member of PROPAC, she appeared as Mrs. Santa in December, helped orchestrate the Easter egg hunt for local children, and hosted monthly dinners at the church.
She organized and fundraised for the annual “Secret Santa” operation, providing Christmas to local families in need.
All year round, she continued to make “feel-good baskets” for people with or undergoing treatment for cancer.
And, she intends to do it all again this upcoming year.
Paul credits her parents for instilling her with a spirit of altruism.
“We grew up like that. Our parents instilled it in us to give,” Paul said. “When you see someone who needs help, you help them. It’s really nice to give back to your community. It just feels good.”
Physically, Paul is feeling the best she has since being diagnosed.
Paul does have kidney damage from the disease, and the cancer doesn’t go into remission, but Paul is optimistic about the future.
“It’s not a curable disease, but it’s treatable,” Paul said. “Doctors maintain it. In two months, I’ll go on maintenance, which is a pill every day for the next three to five years.”
Paul is quick to point to the power of prayer and the community’s support when talking about her current state.
“I was on everyone’s prayer list,” she said. “I truly believe that it worked. Prayers mean so much more to me now. I’m doing really, really well. I truly feel blessed by all the support I’ve received from the community.”
