“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
goodbyedancerhellocancer.blogspot.com.
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.”
