Cancer Warrior

March 31, 2013


At the age of 25, Lisa Johnson did not worry too much when she began having digestive troubles.
Four years later, after several surger­ies that have reconfigured her anatomy and rendered her unable to bear children, the 29-year-old Johnson faces life with a strength others might not summon and an optimism that sets her apart.
Because March is Colorectal Cancer Awareness Month, Johnson wanted to share her story in an effort to raise aware­ness and help others.
The Rivesville native and resident, mar­ried to husband Chad and with her entire future ahead of her, was kicking around job opportunities. Even though she had just graduated from Fairmont State with a bachelor’s degree in psychiatry and an associate degree in criminal justice, she decided to take a fun job coaching the dance team at North Marion High School.
Then everything changed and suddenly her choices seemed to diminish.
“The cancer diagnosis came once I was in that job for a year and a half,” she said. “Since then, cancer has been my full-time job.”
Not only cancer, but one that does not get the attention that other types, such as breast cancer, do. And one that generally strikes people ages 50 and over, not some­one half that age.
The ordeal began in 2009, with a symp­tom experienced by most at some point, constipation.
“I didn’t think it was a big deal,” she said. “I didn’t think at 25, 26, it was any­thing major. I started thinking, ‘Maybe I’m missing some fiber in my diet,’ so I started taking an over-the-counter fiber supplement.”
Instead of solving the problem, howev­er, a new symptom began — bloating.
“And not just bloating. It was the fact that I thought I was pregnant. I weighed 105 pounds. I was skinny, but you could tell I had this tummy on me.”
After that, Johnson tried a stronger over-the-counter laxative, magnesium cit­rate. The bloating and constipation would come and go.
By the time late 2009 rolled around, Johnson had a new symptom. She began to notice blood in her stool.
“I was thinking, ‘This is strange. Something can’t be right.’ Around the same time, it was time for my annual female check-up. Not having insurance, I went to a free clinic.”
She told the doctor about her symp­toms.
“She said, ‘You are 25. It’s nothing to worry about.’ I thought it was cool. The doctor told me I was fine.”
In February 2010, Johnson began to feel a dull ache in her tailbone that she equated to the pain a child who fell might feel. A friend of her mother’s, a retired pharmacy tech and a for­mer emer­gency medical technician, told her she needed to see a doctor.
Johnson did, but not before she felt her worst symptom, a stabbing pain in the right cheek of her bottom.
“It felt like I was being stabbed by a butcher knife. I couldn’t stand. I couldn’t sleep. It was awful.
“We’re so easily lured to the Internet to help us solve problems, so I did a little research and I seemed to have symptoms that looked like they fit into the category of internal hemorrhoids.”
While that did not sound fun, Johnson felt a sense of relief that she figured out the problem.
So she went to see a surgeon in Morgantown. But within minutes, he diagnosed that something seemed horribly wrong.
“He did a digital rectal exam and he found a large lump that was exactly on the right side, inside my rectum. He told us immediately, ‘This is something that is abnormal.'” Three days later, she was having her first colonoscopy as well as a biopsy. The result: a 7-cen­timeter tumor, the size, the doctor said, of a goose egg.
“It was blocking 90 percent of my rectum,” Johnson said. “He knew immediately that this was a very advanced cancer. He knew it was serious and he knew we need­ed to get start­ed doing treat­ment right away.” Two days later, she learned she had stage 3 cancer with a size T4a tumor, the next-to­the-last largest-size tumor, which is a T4b.
“It was the largest he had ever seen,” Johnson said. “The reason I was having so much trouble, I was trying to get stool past 10 percent of my rectum. That’s how advanced and large this tumor was.”
As for causes, the doctor was “flabber­gasted.” He asked Johnson if she had any family history of Crohn’s disease or any other gastrointestinal conditions.
“He told us, ‘When you walked in here, I was expecting you to have internal hem­orrhoids,'” she said. “I had the largest tumor he’s ever seen with any kind of can­cer.
“It was a lot to swallow and a lot to digest and a lot to figure out where to start trying to go.”
After the tumor was discovered, Johnson applied for Medicaid. She initial­ly was turned down but then approved for it. She also eventually was put on disabili­ty because of all the surgeries and the treatment she would endure.
She met with an oncologist and had a chest port surgically implanted in her chest through which to receive chemother­apy. That was so medical staff would not have to keep accessing her veins.
“Especially with the chemotherapy,” she added. “A lot of chemos are so strong they make your veins collapse on each other.”
In addition to 28 pelvic radia­tion treatments, she had a 24­hour continuous chemotherapy, with a machine hooked up to her port access.
“I had to wear a fanny pack Monday through Friday for six weeks,” she said.
The idea was to attempt to shrink the tumor with chemotherapy and radiation before removing it surgically.
“That was the plan,” she said. “That’s not quite how it turned out. But that was the game plan.”
When she had surgery on Aug. 19, 2010, the tumor had shrunk only slightly, and only from the radiation. When it was biopsied, it was found to be resistant to the chemotherapy.
At the time, the surgeon also closed up Johnson’s anus and gave her a colostomy bag attached to her lower left abdomen.
She deals with it with the same strength and grace as her entire disease.
“I thought it was going to be much more of a big deal,” Johnson said. “It’s a very nice reminder of why I’m alive.”
After that, Johnson switched oncologists and began going to one at West Virginia University’s Mary Babb Randolph Cancer Center. She also got a new chemotherapy regimen called FOLFOX, basi­cally a “cocktail” of three differ­ent types of chemo. The name is an acronym for those three chemotherapies.
“I did that every other week for six months,” she said. “I would go in and they would access my port and go up to the oncology floor and the infusion would take about five to six hours. I would have a hospital bed and I would have to stay on my hip. I couldn’t lie flat because I was still healing from surgery.”
Then, in March 2011, a positron emission tomography (PET) scan showed her to be in remission. But when she had her next scan four months later, another tumor had emerged in the same spot. It was 1.2 cen­timeters, much smaller than the first one.
“After that, I was referred to a colorectal specialist in Pittsburgh.”
This time, the surgery went further. On Sept. 21, 2011, in addition to removing the new tumor, Johnson had a complete hysterectomy at the age of 27.
“This was just for precaution, because if rectal cancer does reoccur, it usually reoccurs somewhere in the pelvis. Because I had one reoccurrence, they decided to do the hysterec­tomy. I was already sterile from the radiation.”
The surgeons also removed Johnson’s vaginal canal “because of scar tissue and other cancerous cells. They wanted to clean out as much as they could to make sure nothing would come back.”
Surgeons took healthy tissue from the inside of her left thigh to fill in the pelvis with muscle and tissue and rebuild the out­side of the vagina.
“I had known about the hys­terectomy, and they had men­tioned the slight chance that if there was anything wrong with my bladder, they might have to remove that,” she said. “Thankfully, they didn’t. But the vaginal canal was never men­tioned.
“But it really doesn’t matter. I would much rather have my life and be healthy than have to worry about that.”
However, “It was definitely a shock. I was 27 years old. That’s not the life you expect to wake up to or to be living. It doesn’t even sound like it would be pos­sible. I like to at least look at it that I woke up, and that’s the point.”
Johnson had until January 2012 to heal from that surgery and then she began another six months of chemotherapy, this time one she could do at home by taking a pill called Xeloda, two in the morning and three in the evening.
All three types of chemothera­py that Johnson underwent came with a variety of symptoms, from the typical nausea, vomit­ing and body aches to neuropa­thy, or numbness in her fingers and toes that took a full year to resolve. She still has what she calls “chemo brain,” short-term memory and cognitive function problems, as well as teeth degra­dation.
However, since last October, Johnson has been in remission. While a lot of people might feel sorry for themselves, Johnson’s sunny outlook after her ordeal makes her a rarity.
For one thing, her relationship with her husband, Chad, has strengthened.
“He has been the most amaz­ing man,” she said. “He really is. He is the man you grew up watching in the movies. I had to deal with this, but he chose to deal with it.
“He’ll always tell me, ‘I took vows.’ He loves me. We’re soul mates. We’re in it together. He didn’t leave my side through any of the surgeries. He was right there with me. When I couldn’t walk to the bathroom, he carried me. When I couldn’t bathe myself, he would bathe me.
“We were married a year and three months when I was diag­nosed. He has been incredible.”
After she has been cancer-free for five years, Johnson can have surgery that would rebuild the inside of her vaginal canal.
“The doctor warned us that it’s very complicated and painful surgery,” Johnson said. “I don’t know if I ever want to take that step. Right now, our decision is no. The most important thing to both of us is that I’m alive. For a while, it was scary to think that wasn’t a possibility.”
Besides, Johnson said, “Marriage really isn’t based on physicality. It’s based on love. The fact is, we have fallen more in love with each other in this cancer world than we ever could have expected. We love spend­ing time together and being with each other and we’re just thank­ful we have each other.”
As of now, Johnson has her chest port flushed out every month. She plans to leave it in until she is cancer-free for five years, after which her chance of reoccurrence lowers substantial­ly. She has a PET scan every six months, which she will do for the next year.
“And after that, I will have one scan a year for the next five years.”
Now that Johnson’s treatment takes up less of her life, she has gotten back to the business of living it and appreciating it.
That’s not to say she never had negative feelings, but more often than not, she was thinking too much about surviving.
“You get lost in this world of appointments and chemotherapy and surgery. You don’t have time to be frustrated and you don’t have time for negative energy. You have to go on and survive to be the cancer warrior you have to be each day.
“Yes, I was frustrated and angry and confused, but I had to push that aside. I fought very hard to live this life.”
It’s a life that put her in early menopause, one she cannot treat with estrogen because that feeds cancer cells. “My hot flashes are ridiculous,” she said.
It’s also a life where she envi­sions adopting children in the future.
“Children, we definitely, of course, planned to do that. That was hard to swallow, knowing the fact that you’ll never be able to see the look on your hus­band’s face when you can say, ‘I’m pregnant,’ or never feel a baby inside your stomach. But I know what it feels like to hear the word ‘remission’ and what it feels like to kick cancer right back in the butt. It’s a really good feeling in itself.”
She also found solace online. She created a blog that she calls “Goodbye Dancer. Hello Cancer,” which can be accessed at goodbyedancerhello­
Also online she met the woman she now regards as her best friend, Tiffany, a fellow rec­tal cancer warrior, through a site called FACES (Families Affected by Cancer Embark on Survival). The two plan to go on a vacation together this summer to Oak Island, N.C., and Wilmington, N.C.
For someone who keeps a blog and who has organized her thoughts on her disease so well, advice for others flows naturally.
“You have to trust your body,” she said. “Your body is going to tell you if something is wrong. I waited, and I obviously waited too long.”
And when it comes to con­vincing someone to get the somewhat uncomfortable tests required to check for colorectal cancer, Johnson has words of wisdom for that as well.
“I think people shy away from it. Rectal cancer, that’s a taboo subject. But I think it’s nothing to be embarrassed about, noth­ing at all to be embarrassed about. I always tell friends, yes, you might have to have that dig­ital rectal exam, but it’s over in five minutes and you can go on with your life. A colonoscopy, you’re out of the hospital in an hour and you continue on with your life.”
In fact, Johnson said, she never felt a sense of embarrass­ment about what she underwent and what she was going through.
“It was something that was brought into my life for a rea­son. I looked very hard for that reason for a long time. But it definitely made me into the woman I am, into the wife I am, the daughter I am and per­son I am. I think if anything, it made me appreciate my life more.”