Kathy's long journey
Despite battling cancer for more than two years with few lucky breaks, this Baldwin City mom lost neither her sense of humor nor her competitive spirit
25 February 2007, 12:00 a.m.
Marvin and Norma Jardon were sitting quietly in their rural Douglas County living room, slowly turning the pages of two old photo albums. The star of their black-and-white treasures was their daughter Kathy. Memorial services for their only child would be the next day in Baldwin City's First United Methodist Church.
Kathy died Sunday, Oct. 29, 2006, of cloacogenic anal cancer.
She was 52.
"I don't think I've ever seen a prettier little girl ... those rosy cheeks," Marvin said quietly, his voice unsteady. He held out a photo of 5-year-old Kathy in the direction of Norma who nodded in agreement.
"Different ones have stopped by telling us about knowing Kathy or riding on the school bus with Kathy always smiling, and they all mentioned those rosy cheeks," Norma said.
A delivery truck rolled noisily along the Jardons' gravel driveway and stopped next to their back porch.
"Looks like some more flowers," Marvin said, heading toward the door.
Norma was staring out her front window at traffic slowing down for the stop signs at Baldwin Junction. She spoke about the sympathy cards in their mailbox.
"When Kathy was walking pretty good, she's maybe 2, 3 or so, I'd take her in the hardware store in Baldwin to pick up a new pie tin or something and she wouldn't bother a thing - never touched anything," she said. "We got a card today from a girl who said her mother-in-law worked in that store and she used to comment on how mannerly Kathy was. Kids today ..."
And they talked about Kathy being struck by lightning, when she was 16: "Melted her hair into clumps and knocked her to the ground," Marvin said. "We wonder if that didn't have something to do with her cancer ... Kathy sure did."
On Dec. 7, 2005, the Jardons were visiting Kathy at Kansas University Medical Center after cancer surgery and she was not doing well.
"She was so sick with an infection ... temperature of 105 and a nurse apologized to Kathy and us for not being able to lower her temperature," Norma said. "And darned if Kathy didn't say - you know in that way she had - 'Look, I can't die today, it's my mother's birthday.'"
Besides driving Kathy to most of her doctor appointments and treatments at Lawrence Memorial Hospital, the Jardons spent time caring for Kathy at her Baldwin City home.
"I wouldn't trade that experience of Kathy getting sick for anything," her mother said. "It showed us how you can hurt so bad and be so sick, smile more than you want to and still keep your head above water."
The Jardons said it was a learning experience.
Norma said, "I don't think a lot of people understand how someone really feels when they're going through all of those treatments ... those drugs can be wonderful but they can be so hurtful in so many ways."
In 2001, Kathy was divorced and living in California. Her former husband, Miles Stotts, an environmental scientist, was working for Pitkin County in Aspen, Colo., where their daughter Sara was going to school.
"Kathy called about two weeks before Thanksgiving asking if she could come see Sara," Miles said. "She never left."
Miles, the son of a Methodist minister, married Kathy on June 1, 1977 - Kathy's birthday - in Baldwin City. They divorced in 1995.
Each described their relationship as "on again off again, periods of discontent, intervals of intense dislike contradicted by 31 years of undying love."
On March 23, 2004, Sara drove her mother from Aspen, Colo., to a colonoscopy appointment at a hospital in Glenwood Springs, Colo.
Kathy was in pain.
"My insides had been hurting way too long and I knew something bad was wrong with me," Kathy recalled. "The fourth time I heard my gastroenterologist say, 'Oh, s---,' I knew I possibly had 'the Big C.'"
She was admitted to the hospital, given a shot of morphine and a massage. She told a nurse the only thing missing was chocolate. A bag of M&M candies appeared minutes later.
"That's it," Kathy remembered thinking, "I'm dead ... I'm dying."
She summoned her other daughter, Amy, and Miles.
"I knew it was something horrible if she was including me," Miles said.
Kathy told them her intestines were ready to burst. Surgeons were preparing to remove an 8-pound mass in her abdomen. There also was a 1-pound mass that was inoperable. A tumor already had crushed her right kidney.
She came out of surgery with an ileostomy, a bag to handle her intestinal waste, and later a stent was inserted through her back in an effort to save her damaged kidney.
She was told that treatments and more surgery could be performed in Denver.
"I wanted to go home," Kathy said.
She called Mary Vernon, who was her physician when she lived in Lawrence.
"Hey Mary," she said. "I've got cancer and I know about Dr. Stein. Can you get me in to see him?"
'Cancer poster child'
Norma and Marvin drove to Colorado, packed up their daughter and brought her and Amy to their home at Baldwin Junction.
"I felt like the cancer poster child," Kathy said. "On Sunday, my folks brought in every relative I hadn't seen in 20 years and in the middle of visitors day I got really sick."
Later that day, Lawrence Memorial Hospital emergency room doctors found three blood clots in her right lung. The following day she met Dr. Matthew Stein who works in the oncology department at LMH.
"I started to explain to Stein that after my surgery I'd done what they told me, I'd worn those stupid hose ... and he said, 'you've just had abdominal surgery, clots happen.'"
Kathy was impressed.
She commenced a series of tests, biopsies and three nephrostomies, "where they poke a hole in your back, find your kidney and drain it," she said, wincing.
Cervical cancer was among possible diagnoses.
On Friday morning, Kathy said she was visited by a physician who said if it was cervical cancer she would have about six months to live.
"I couldn't even cry," she recalled.
An hour later, she recalled an upbeat Dr. Stein rushing into her room announcing he soon would be starting chemotherapy and radiation.
Given a diagnosis
Kathy said Dr. Stein called Monday and announced she had cloacogenic anal cancer and it was treatable.
"So it was rah, rah, rah, get one for the Gipper, but I still wasn't sure what was going on," she said. "I guess he figured I was worth saving and 'by God we were going to get this done.'"
Kathy moved into her grandmother's former house on Santa Fe Street in Baldwin City. Daughter Sara was enrolled at the University of Colorado and Amy was at Kansas University.
In May and June, Kathy had two rounds of chemotherapy followed by 28 radiation treatments.
"If they had told me how much radiation burns hurt, from the inside out, and how they deplete your red blood cell supply, I probably would have said 'Bye ... .'"
Despite drinking "gallons of water" before and after chemotherapy, high fevers and teeth rattling chills sent her to the LMH emergency room.
"I'd pretty much hit the brick wall," she said.
Insight into journal
Kathy had kept a journal pretty much all her adult life. She had boxes of notebooks. Some of her journal entries, in italics, are included in the rest of the story.
Cisplatin (anti-tumor agent) Toxicity
asked Miles to call Hospice.
(I'm) driving off Wolf Creek Pass (ele. 11,850 feet, three hours from Aspen)
There will be NO more of this
I am DONE
I'm in GOD's HANDS.
Her entry on the next page:
Aug. 4, 2005
Stephanie (In Dr. Stein's office at LMH) called w/GREAT NEWS. "best scan Stein had ever seen."
X-ray, CTscan CLEAR
Stein upset that I'm NOT more excited.
Later when the news sunk in, Kathy conceded, "It was unbelievable."
But, it was too soon to celebrate. Her cancer experience thus far had seen more than one "gotcha."
Job hunting was a possibility but she couldn't help but think about her next CT scan in November when they'd check for new cancers.
Cancer had become a full-time job.
Kathy's journal described seven days in seven words spread across two pages of her journal.
Late August 2005
Starts around 3 p.m.
For the next few weeks feeling miserable was not an option.
Her bladder became infected.
Seated in her kitchen, Kathy waved her arm and pointed out several fabric bags bearing various names and designs. Her daughters called her "the bag lady."
"I love bags but I like them with Louis Vuitton labels. But these ... at times I've had an ostomy bag on my left, a urine bag on my right with a nice Velcro strap on my leg ... it's just amazing," she said.
Oct. 26, 2005
9:30: be @ LMH South CT Scan
11:00 bloody painful
1 p.m. Something's wrong
On Friday, Kathy drove herself to her appointment with Dr. Stein.
Oct. 28, 2005
Bad news/more liver tumors
Dr. (Jameson) Forster (KU Medical Center) or Pittsburgh, Pa? (University of Pittsburgh Medical Center for Liver Disease)
Everyone sad/love me
Real mature-Marlboro Lights and champagne at Alison's.
Kathy chose KUMC and called Dr. Forster's office for an appointment.
Three days passed with no reply.
On Tuesday morning Kathy went to Discoveries, a shop in Baldwin City run by her friend Sally Nixon. Together they sent an e-mail to Dr. Forster.
"Why is it when there are things inside your body, trying to kill you, the cavalry can't find their horses?" she asked.
Nov. 1, 2005
Noon: Want to Scream!!!
5:15: Forster called/Stein ecstatic!
Tests followed during the next several days.
Three weeks later on Nov. 22, Kathy was ready for radio frequency ablation to eliminate her tumor. By Kathy's description, a probe would be inserted into her liver that would heat it and the tumor to 300 degrees, obliterating the tumor. During the operation, Stein and Forster conferred by phone four times.
After the procedure, she recalled watching steam rising from her thighs that were covered by cold packs. A bout with a nurse who Kathy said read the wrong chart didn't help matters.
And while she was in the recovery room, Miles, Amy, Sara and friends Alison Bauer and Carol Ann Westfall were holding a healing prayer circle led by John Hoefer, founder of Kansas City's Healing Touch.
Hoefer had visited Kathy before. She described the experience in an earlier journal entry:
"Even though my eyes were always closed, through my eyelids I saw his hands rise and fall in the act of pulling something from by abdomen ... I could feel tugging and warmth on the long incision that went from my breastbone to my pubis ... sometimes it felt like John's hands were inside my abdomen."
Road to recovery?
Kathy had now lost her right kidney, gall bladder, appendix, and was minus a third of her liver. Looking at her glass as half full, she hoped her body would now provide fewer nesting places for her enemies.
Forster was so pleased with Kathy's prognosis he was going to send her home early.
"So," Kathy said, "I was on the road to recovery and damn grateful."
A high temperature delayed her release by two days.
She arrived home Wednesday, Nov. 30. Her friend Martha Wright visited and washed her hair, Alison brought brownies and Kathy's folks dropped in. That evening, her home soon filled with friends, family and good food. By noon Saturday, Kathy was up and dressed and disappointed that there were no visitors.
Around 4 p.m. Sunday, she developed muscle spasms in her lower back. Percocets and a heating pad did nothing to help.
"The heat pad was a hand from hell," she said.
Then came the chills. She thought she was bordering on convulsions. She panicked when her teeth began chattering so hard that she thought they'd break.
She screamed for Miles to call 911.
Dr. Stein and Dr. Chris Vega, the emergency room physician, were waiting for her at the LMH emergency room and got her stabilized. She was struggling to breathe. She had a pulmonary embolism (artery blockage usually by a blood clot) and staph infection in her kidney and bladder.
A CT scan showed abscessed areas on the dome of her liver and in the area where her right kidney used to be.
She had a second ambulance ride to Kansas City. At 3:10 a.m., she was wheeled into the KU Medical Center Surgical Intensive Care Unit.
She was in septic shock, where the body is overwhelmed by infection capable of shutting down vital organs.
She said there were more tests and the drain was reattached to the dome of her liver.
Back in intensive care, Kathy's temperature was normal but she wasn't.
"I'd lay my head back, close my eyes and I would hear a nurse say, 'C'mon stay with us, open your eyes, talk to me.'"
Kathy's teeth-chattering and shakes would come and go.
Dec. 5, 2005
drain not holding suction
moved to 4508 --scared.
Something is very wrong.
Hoefer came by that evening for another healing session.
Later, Kathy's hopes waned.
"It was the first time after a session that I felt incredible pain where he had been working on my abdomen. It scared me. It scared me bad," Kathy said.
She wondered if morning would ever come, and if it did, would she be sad or glad?
Dec. 6, 2005
Dr. Collins (at KUMC) PO'ed. Entire catheter/drain redone in special procedures. High temp/chills in recovery room.
"Finally, after two painful attempts," she said, "Dr. Philip Johnson, head of radiology got the pic line on target."
She wrote about her thoughts when she awoke before dawn:
Dec. 7, 2005
It's my Mom's Birthday! God, I can't die on her birthday. Yeah, I haven't been the best daughter to her most of my life. Seems like I've always been running away. Now it would seem really bad to blot her birthday with my death.
I sent Miles a (cell phone) text message saying I couldn't die on mom's birthday which scared the hell out of him so he drives through the blizzard thinking this was to be my last day on Mother Earth. I seem to be oblivious about anything but dying on this day.
Dec. 9-13, 2005
Friends call asking to come visit. I have no energy to spare. What exactly do I have to spare.
Miles came every day. It worried me that he became more haggard. He's been helping the girls and he's been my rock when its really mattered. Everybody loves Miles. And here I am, laying here, waiting for my next meal, my next ride, my next tumor.And, the doctors, they talked a lot. They just didn't say anything.
My departure was slowed by the nurses who kept coming in for hugs, to wish me well, to offer prayers, to admit they had been worried about me, to get better, to come see them when I was feeling better. Erin, Stacey, JoJo, Dawn, Eric, Kate and Louisa. It broke me somehow, so humbled by these gifted nurses who would get upset when I would apologize for being "so much work" for them. They really cared. I felt they were my angels. And then call lights began to ring and they faded away and I could still feel their hugs, get the faintest hint of Erin's perfume.
Dec. 13, 2005
I'm back home.
Stacey Urban from Lawrence was my discharge nurse.
Outta there. WOO HOO!!!
Back in Baldwin City, Martha came by to wash Kathy's hair, her buddy Alison arrived with scalloped potatoes and a home health nurse changed her IV.
Life was better until Dec. 23 when she got news that the cancer burned from her liver had returned.
Miles and Sara became her home caregivers.
lunch @ the folks'
Miles changed dressings-gawd they either itch or hurt.
Three weeks later during a visit to KUMC came the January surprise. A CT scan revealed a mass in Kathy's remaining kidney another in her cecum (abdominal pouch) and cancer on the scar tissue left when her crushed kidney was removed.
In need of a getaway
Kathy couldn't remember when she hadn't felt tired.
"Her spirits were almost always up," Miles said. Those close to her thought her reaction to her cancer was incredible.
Returning to Colorado was always on her mind but she said, "My tether doesn't reach that far."
She sometimes used the simple things at hand to prop up her morale - like a full moon.
"Did you see my moon tonight?"
That would be Kathy's opening line when she called her friend Alison during a full moon.
Alison had known Kathy for 25 years and remembered Kathy as smart, usually underemployed, a voracious reader and very funny.
"When she was feeling really bad, Kathy spoke slowly and deliberately and not for very long," Alison said. "When a conversation was dipping towards sad, Kathy would refer to herself as an "ass cancer victim" and when she was photographed for a series on cancer patients by LMH, she called herself the "Poster Child for Cancer."
Although Alison tried not to show it, she was very sad that her friend's life might end before she got to do some of the things she'd wanted to do, like travel.
Six weeks before Kathy's death the two talked about a getaway trip.
"I told Kathy to name it and we're outta here," she said.
Choices came down to New Mexico, Colorado and The Garden of Eden in Lucas, a late addition to their virtual travels.
"By the time we decided on the 200-mile trip to Lucas, Kathy started counting her tubes, bags and doctor's appointments and we ended up going downtown for tea," she said. "I felt terrible, tried to hide it, but I know she knew."
Alison recalled a day when she was "very" upset and stopped by Kathy's seeking solace. She was stopped in mid sentence.
"Hold it right there Alison Bauer," Kathy said. "I'm the one here who is dying of cancer, so get a grip."
She said they hugged, laughed and cried.
June 2, 2006
SURPRISE PARTY-30 people here plus a call from the Good Doctor Stein.
Kathy turned 52.
"It was great having people hiding in my kitchen, old friends ... but my stomach was hurting so bad I'd have gone to the emergency room if the house had been empty."
June 6, 2006
called folks to take me to ER and then called Stein lol!
X-rays, puking, bowel obstruction admitted. Not even ice chips. Rm 304painful "we wait"
Saturday, June 10
Night puking-gawd I hate that. Me-already crying.
Stein had to put his dog down. Marilee (surgeon Marilee McGinness) looks tired-
Change IV Ready at 1 p.m. Sunday-Surgery around 3:30-friends called
Her next day's surgery lasted four hours.
Trip to Mexico
Kathy's cancer was back.
On June 27, Kathy called The Hoxsey Bio-Medical Center in Tijuana, Mexico, for details.
The Hoxsey Clinic is an alternative cancer facility. Their outpatient treatment involves herbal mixtures including their Hoxsey Tonic developed in 1840 by John Hoxsey, a veterinarian.
In 1995, Kathy's cousin Vernon Christian was diagnosed with colon cancer at age 58.
"I had seven cancer operations in 14 months," the lifelong Baldwin City resident said.
In 1998, his doctors recommended additional chemotherapy. He balked and was told that without further medical procedures he would die in less than a year.
Christian went to the clinic, where Hoxsey Tonic and herbs were prescribed, and today at 66, he still drinks the tonic.
On a visit to LMH she ran her not-yet-finalized trip to Mexico past her oncologist. She wrote in her journal that Stein wasn't too keen on Hoxsey.
In late July she boarded a plane for San Diego.
July 24, 2006
Bio-Medical Hoxsey Clinic
THIS WAS HELL!
Went out of control
Hated "The Clinic"
Before the clinic's offices opened, Kathy and 22 others lined up and held envelopes with their X-rays and medical records. Kathy said the former mansion was modern and clean with five doctors on staff.
The doors opened at 9 a.m. She saw a doctor at 2:40 p.m.
"A radiologist came in with my X-ray and asked what had happened to my missing organs and who did what to my abdomen," Kathy said.
They had other questions and described to her how diffuse her cancer was, with bad cells scattered in her body.
"You waited too long," the doctor said. "I'm sorry."
To Kathy, the "I'm sorry" sounded like a death sentence.
The doctor prescribed the smallest dose of Hoxsey Tonic along with capsules of the herb yew and artemesian, an anti-malarial drug that Hoxsey believed was conducive to shrinking tumors. A diet was also recommended.
"And they told me that if my stomach began hurting to stop taking the tonic," she said.
Two days after returning home, Kathy had an appointment with Dr. Stein.
"Stein has gone along with my acupuncture, my healing touch and he knows I wouldn't do anything that would interfere with chemo or radiation," Kathy said. "He said 'we'll do a CT scan before you go back to Mexico (in three months) and if there are any problems I'll call Dr. Franco (at Hoxsey).'"
Hoxsey's costs, and they vary: $50 consultation fee; $185 yew capsules; $150 lab work and X-ray; and $1,200 Hoxsey tonic.
Miles recalls that the $1,200 was one-third of the lifetime cost. After three visits, the tonic is free.
Kathy said she planned to take the tonic and would follow the diet "to the letter." She said "at least I'll die healthy."
In Baldwin City, news of Kathy's trip to Mexico traveled fast.
She got phone calls from strangers asking about Hoxsey. And she was amazed when she got three phone calls from women recently diagnosed with cancer "who refused to have chemo or radiation ... refused."
Close to home
During the next few months Kathy didn't stray far from home and was spending more time in bed.
"People seemed desperate to see her," Miles recalled. "People that Kathy hardly knew would keep calling until we finally told them to come on by."
Kathy would talk about making one last trip to Colorado. She had one, maybe two unused airline tickets purchased when she felt she was nearly ready for a flight. But, it didn't happen.
On the first of October Kathy sent an e-mail to friends.
"OK, some of you have heard I am at Death's door. Not true. What is true is that I was admitted to LMH Tuesday night with a possible abdominal obstruction and dehydration. Pushed the IV fluids. CT scan on Weds. showed cancer in abdomen, stoma, and new tumors in my liver. Thursday night, Marilee, my surgeon reinserted a Porta-Cath since my veins have taken a vacation. I came home yesterday afternoon and so far so good. Will see Stein tomorrow for more fluids possibly and "the talk." My chemo drug options are awful. I am not ready to "let cancer take it's course," so your prayers for guidance and acceptance will be greatly appreciated, as always!!Sorry, to make y'all worry about me again...you just don't know how grateful I am you care!
Lord, help me to find serenity."
In mid-October, Kathy was admitted to LMH. Ten days later when she was released, a nurse from Douglas County Hospice followed her home.
Kathy's living room was arranged to accommodate her hospital bed. She could look through open slatted shades onto Santa Fe Street.
One late October afternoon, Kathy's mother was in the kitchen greeting people who were entering through the garage. When the coast was clear at Kathy's bedside it was mentioned to her that, by her mother's count, there had been 17 visitors so far that day.
Wasn't that perhaps too much of a good thing?
In a raspy whisper, staring at the ceiling, Kathy said, "I have a new appreciation for the movie title, 'Loving Her to Death,'"
Before the sun was up on Oct. 27, Miles was sitting in at the kitchen table under a single overhead light. Sara had awakened him because her mother was in pain and she needed help with the dosage of pain killer.
By the clock, Kathy wasn't due for her shot of dilaudid for another hour, but she was awake and hurting.
Miles held the small vial up to the light as he backed off the plunger.
"Poor baby," he muttered softly to himself, "poor baby."
Sara came into the kitchen and said her mother wanted to say hello.
Peering into the darkened room through a curtain and exchanging "Hi," Kathy said in a faint whisper, "Happy birthday, Snead."
The occasion suddenly became special.
On Sunday afternoon a phone call from Miles, in a soft, sad voice said, "Well, we lost our girl this afternoon."
She died at 1 p.m. Oct. 29. Daughters Sara and Amy, parents Norma and Marvin, former husband Miles and two ministers, Priscilla Davies and Pam Morrison, were circled around her bed.