Sunday, April 28, 2013

3 Years - "What A Long, Strange Trip It's Been"

     It’s “officially” been 3 years, or 36 months, or even 1,o96 days if you like (counting 2012 as a leap year) since cancer collided with my semi-normal 26 years of life on April 28, 2010.
    Since the words “you have cancer” became an unexpected reality in our life, I’ve made it through 28 pelvic-radiation treatments, 3 different chemotherapy regimens, & 2 major surgeries (August 2010 & September 2011); however, without-a-doubt, the emotional & mental journeys have, by far, outweighed the physical.
    Looking back now on who I was 3 years ago is like looking back on an old high school year book. I was so naïve but so sure I had this life all figured out. I had planned to continue with my love of dance, hoping to one-day open my own studio. We planned to build our dream-home & soon begin starting our own family. Or course none of that happened & it took quite some time for me to accept the hand that I had been dealt. I remember feeling so lost & being so angry; I didn’t understand why this disgusting disease was fated to be part of our life but it was &, in one way or another, always will be because it affected our life on every possible level.
     Friendships that I thought could weather any storm took cover & I found myself relating more to (then) strangers than people I had known most of my life. The family Chad & I dreamed of & for so long talked about starting would never be, yet I would have to spend my days & nights constantly nauseous & vomiting like some sort of sick sterilization joke. A body that was not only my job but also my love & my passion was suddenly ridden with aches & pains that I didn’t even know could exist. My once “don’t have to worry about it” metabolism would go MIA, leaving me to blindly navigate a complete physical transformation with treatment & surgery; and as silly & vain as it may sound, it was something that took a substantial emotional toll on me & something that took quite a while for me to come to terms with.
    On the bright side, this “cancerapade” has given Chad & I the opportunity to fall even deeper in love with each other. One of the very few upsides to having cancer is all the time we were able to spend together, although I really don’t know how he did it, hell, I got on my OWN nerves a few times! ;) We know we can beat anything this world can throw our way, because we have & I know we will only continue to do so. We will have our family one-day, it will just be a few years later than we had planned, which is absolutely fine because as the great John Lennon once said: “life is what happens while you are busy making other plans."
     Yes, cancer took a lot out of my life but it didn’t take my life. If anything, it gave me not only a second but also a third chance in this world to see what & who are really important & essential around me. I’ve met amazing people had I not known if not for cancer. I know the true warrior that lies beneath my skin had I not known if not for cancer.
     I am who I am not because cancer walked into my life...I am who I am because I didn't walk out on myself & that, in my eyes, is the ultimate victory.

Thank you for being part of my journey. 

Friday, April 26, 2013

Dancing With Words

     I grew-up in the dance world; spending my evenings at a local dance studio sashaying my way through the world of ballet, tap, & jazz. My first love would come much earlier than I had ever expected; instead of the cute boy in Social Studies, it was dance & I was 2. I danced every extra second I had in my days. Whether it be in front of the mirrors of the studio or in my kitchen where I had carefully moved aside the table and chairs to create center stage. I just danced and I loved every second of it. Dance soon became the essence of my life; I lived and breathed only to survive long enough to make it to my dance studio and be able to gasp my next breath.  The world of dance always had this strange effect on me. I was intrigued by its grace and perplexed by its magical and unexplainable ability to make me feel the way it did. It made me feel beautiful. It made me feel graceful. It made me feel alive.
    I continued to dance through-out high school but  in my late-teens/early 20s, I began working, I met & fell in love with Chad, & was going to school full-time. A few years later, we lost my brother & dance became something only in my past. However, fate had a different idea.
     A little over a year before I was diagnosed, I was lucky enough to re-discover my love of dance by coaching a high school dance team. I, very happily, found myself back in the world which I had grown up: sore muscles, tired feet, & exhausted, yet unwavering enthusiasm…but that would all change in April 2010.
    Very soon after diagnosis I made a promise to myself that I would spend the rest of my life, however long that may be, doing anything & everything to educate others about the seriousness of Rectal Cancer. Realizing how naïve I was to the disease prior to a face-to-face introduction, I recognized the best way to do this was to share my story with you, no matter how private or extreme my battle & the details may become.
    Along with dance, writing has always been an emotional outlet for me - so when I was no longer (physically) able to find solace in pirouettes or grand jetés, I found myself choreographing something else: words.
    Shortly after, I began looking into starting an online blog so I could share my thoughts with others, never really expecting it to go further than the people around me. “Goodbye Dancer, Hello Cancer” soon became my very public journal & has been my center stage ever since.
     When I was younger, dance was a way to express myself - to say in motion what I couldn't say in voice. Now my words are my dance; they are tiny steps throughout different combinations of my life.
     Beating cancer was, by far, the very best dance of my life. It made me feel beautiful. It made me feel graceful. It made me feel ALIVE...and as far as I'm concerned, there will never be a final curtain call because that is something to celebrate everyday.

1st recital. 

Wednesday, April 17, 2013

"...In Sickness & In Health..."

      One of the aspects I love most about my relationship with Chad is our communication. Over the past (almost) 10 years, we have learned how to talk through & about anything & everything that is going on in our life. It will continually be a learning process, but in addition to being in love & being husband & wife, the fact that we are best friends only makes talking to each other that much easier.  From our pasts, our fears, & our day-dreams, to our secret "nerd tendencies" (totally more him than me btw! ;) ), no topic is really off limits between us, so I knew when cancer decided to crash our party in April 2010 that no matter what lie ahead of us , we would - somehow - make it through.
     We had only been married for 1 year & 3 months when my diagnosis came. We had made it through our first-year together as as husband & wife with flying colors, both of us finishing up school with Bachelor's degrees (Chad in History & Philosophy; myself in Psychology) & were still as in love than ever. We were solid & ready to live our "happily ever after", never expecting that life was about to test the strength of our love, our relationship, & the promises we made each other on January 31, 2009. 
     I remember very early on telling Chad that I would understand if my diagnosis was something he wasn't able to handle - hell, I was barely able to grasp it, so I didn't expect anyone else to understand it anymore than I did. His response was immediate: "I love you. You're my wife, my soul mate, & neither of us are going anywhere anytime soon. For better or worse, in sickness & in health, remember? This is OUR battle & we will beat it together". I remember closing my eyes & feeling those words wrap around me like a warm blanket on a cold night. We had said those words, never knowing how soon they would come in to play. It made me think about how many people say those same vows everyday; how, in some instances, it seems those words have become more of a tradition than an actual promise between 2 people who want to spend the rest of their lives together. Not for us though, somehow I had COMPLETELY hit the hubby jackpot & this was, undoubtedly, going to be one - if not THE ONE - most trying time of our life together. 
     The cancer monster barged in the week before Chad's final finals' week at WVU & we made the decision that he would stay home & become my primary caregiver. His strength, devotion, and just overall "awesomeness" would continue to amaze me everyday. When I didn't have the energy to walk to the bathroom, he would carry me back & forth all day; if I couldn't bath myself, he would bathe me. When my body was too achy to do something as simple my hair - well... he once attempted to put my hair up after my August 2010 surgery - I ended up rocking a Cyndi Lauper side pony-tail for my laps on the ICU floor, something we still laugh about to this day. :) If I was having a dark day & needed to cry, he would hold me just a little closer. If I needed to scream, he would sit there & let me scream at him (ILY!).  He kept me smiling, laughing, & was always doing little things that made me fall more & more in love with him. I would often wake-up to notes saying how much he loved me & how proud he was of his little warrior. He was constantly telling me how beautiful he thought I was when I felt anything butt (pun intended!). No matter how tired or worn out he may have been, he was always by my side. I never spent a single night alone in the hospital, in fact, we actually lost count of the number of hospital chairs he so often slept in - usually days at a time. During my BIG 2011 surgery in Pittsburgh, he spent the entire 8 & 1/2 hrs holding my wedding ring & watching my number move up the monitor in the waiting room as each stage of my surgery progressed. For someone who converted me to the foul-calling, college-football-loving wife that I am, Chad was proud to be my biggest cheerleader.
     Without-a-doubt, Chad is an amazing husband, man, & human being. He's the type of man that you think only exists in the movies; the type of man you so-often dream about. His gorgeous blue eyes & the unconditional love behind them still takes my breath away & his touch still makes the butterflies in my stomach take flight. 
     3 years ago we entered the cancer world together. Today - 2 surgeries, 3 chemotherapy regimens, & 28 radiation treatments later - we're still solid & even more madly in love than ever.

Chad - I love you more & more everyday. I am so incredibly honored to call you my husband, my best friend, my soul mate, & the love of my life. Thank you for being my Superman. <3


Wednesday, April 3, 2013

So this happened...

     This past Sunday (April 01, 2013), I was fortunate enough to have my Cancer story featured in the Times West Virginian by the *amazing* Mary Wade Burnside, to whom I'm forever grateful. I know some of my viewers are not locals, so I also wanted to share the article here in hopes it may resonate with someone out there. :)

"Cancer Warrior" - Lisa Johnson faces diagnosis with grace, optimism.


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 3cancer 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

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.” 

Lisa, pictured with husband & full-time caretaker, Chad Johnson.

Photo taken from layout.
Email Mary Wade Burnside at

Tuesday, April 2, 2013

"Unremarkable Examination"

     No matter how long you've been part of the cancer-world, "scanxiety" always seems to find it's way to you, with or without invitation. THANKFULLY, after weeks & days of ridiculous pre-CT-scanxiety, my latest scan came back with some pretty fantastic results that I wanted to share with you! 

 "Unremarkable examination" - are those not the MOST BEAUTIFUL words you have ever seen?! I may be a tad biased, but they're pretty stunning to me! I definitely feel like I just hit LIFE's "Powerball JACKPOT" & I am SO, SO thankful for this victory!