Welcome to Cancer ABCs feature, CANCER THRIVER STORIES
Anyone touched by cancer must find a way to THRIVE. Every THRIVER needs to find their own path. Michelle’s story is the first in our series about a THRIVER’S journey as she finds her personal path.
No One Should Go It Alone
By: Genette Nowak Merin*
Michelle St. Germaine had a few hours to tell her tale before taking her son, Charlie, to karate. She had whipped up an impressive spread of snacks for us amid mom duties and making weekend plans to head to Philadelphia for a Gloria Gemma Convention, a breast cancer resource foundation. She was going with a fellow patient, a close friend. The plan was to spend the weekend among peers listening to and recounting stories, building support systems and gathering all the bits of information they could.
While Michelle was looking forward to the event, she felt a bit bad because another friend, with whom she had also bonded close and fast over their mutual condition, was having her bachelorette party at a nearby casino. Michelle was one of her bridesmaids. She hated to miss the festivities, and while her desire existed in multiple places, her body could only be in one.
Her phone was abuzz with texts regarding arrangements for the weekend, friends checking in on her health, and others keeping her abreast of their medical updates. Her reactions varied from sighs to smiles. Between ringtones, Charlie simulated moves he had observed from their recent venture to Smack Down Live: a low punch, a back round kick. He was a regular ninja ready to slay a beast. Her days, much like this one, tended to be packed: always planning, always giving, always receiving, always loving, always making memories.
Michelle put her phone to the side, took a deep breath, exhaled a smile, caressed her port and declared, “I’m a thriver. That’s who I am.” Her eyes began to float.
In August 2015, with mind, body and soul she felt amazing. She was kickboxing three times a week, eating organic, and fortifying her best. But, there was this one thing, this one pain she couldn’t shake. It was in her abdomen. “It was like I had done thousands and thousands of sit ups. At first, the sensation would come and go, but then it became persistent.” Her primary care physician assumed it was gallbladder stones and proceeded to order blood work and an ultrasound. The lab results revealed that her liver enzymes were elevated.
Interestingly enough, and somewhat ironic, at the time she was taking the nutritional supplement “Thrive.” Thrive is known to elevate liver enzymes, therefore, they didn’t think too much of it. While awaiting lab results, Michelle packed up her family for a trip to Disney World.
In the happiest place on Earth, Michelle received a sobering phone call. Cysts. They were on her liver. Her doctor assured her not to worry. “It’s probably nothing.” To be safe, an MRI was scheduled for Halloween. She heard the news. She absorbed the news and pushed it into the back of her mind refusing to allow it to ruin all that sparkled. Frolicking in mouse ears, posing with princesses, ogling over fireworks and squeezing her dear Charlie, Michelle carried on.
The liver enzymes climbed on, so much so that the MRI was moved up. After the scan, there was silence. “There was no initial response, so I thought things were okay.” Unfortunately, it was a case of mistaken instinct. Her physician’s original diagnosis was also an unfortunate goof. She needed to be seen immediately. “I knew something was wrong, but never in a million years did I think the word cancer.”
She called her husband, Matt. Urgently, he left work.
The MRI showed multiple lesions on her liver. Her physician was 99% sure it was cancer. “Obviously, my jaw dropped.” An initial state of shock set in, but all Michelle really wanted to know was, “What’s next? What do we do?” Because of Michelle’s age, they didn’t believe it was coming from her liver. One CAT Scan and two hours later, they discovered it was deriving from her breast and had spread to her lungs, liver and bones. The cancer had spread like, well, cancer. Michelle was diagnosed with Metastatic Breast Cancer. “That’s when I heard stage four.”
“At that point, I had no idea what stage four meant. I cried that day. I had that moment of why me? And I was scared, but, I was like, okay, I can do this. A lot of people do this. Then I asked, ‘Okay, what do we do?’” Her PCP alluded that she would need surgery, chemotherapy and then radiation. After a good cry, Michelle straightened up to declare, “Oh, I can do that.” She was calm. She was cool. She still didn’t know what stage fourmeant. Michelle floated with hope on a cloud of promise that if she had surgery, had chemo and then underwent radiation, she would be cleared of cancer. “She [her physician] never said it was incurable. I didn’t know I was incurable.”
Michelle entered the Lifespan Cancer Institute at Rhode Island Hospital with what she presumed that the bastard disease would be exterminated. “I told myself this wasn’t forever. There was going to be an end. I’m going to do these three steps and all will be well.”
“No, Honey. It already spread. It’s too late for surgery,” the surgical oncologist revealed.
Michelle was dumbfounded, confused, smacked upside the head. “Well, why am I here?”
“We just wanted to get you in the door.”
Michelle professed, “I’m so confused.” The surgeon, whom she never saw again, explained they would start with chemotherapy and then go from there. “What do you mean go from there?”
“There’s no cure for this.”
“What do you mean there’s no cure for this?” Michelle found herself nose-to-nose with terminal cancer. But for real, it was the first time she thought, what the fuck. “I cried more that day than I did that first day because I never heard the words, we can’t cure you.’”
The days that followed were an emotional hangover: crusted sleep in the corner of her eyes she couldn’t wipe away. A tumor in her right breast so tiny and embedded it was overlooked by a regular breast exam. In order for it to be felt she had to be sitting up just so. It was biopsied to affirm it was the same cancer that was in her liver. It was. There was a second opinion at Dana-Farber Cancer Institute in Boston. A port was put into place, and her system was shocked again by the question: Are your affairs in order? Everything shifted into sixth gear.
On the first day of chemotherapy, the cancer was ever more palpable. Desperate to “kick cancer’s ass,” Michelle yearned the harsh chemicals. “I wanted it [chemotherapy]. I wanted it because I wanted it to kill… I will do whatever I need to do to be here another day. I was scared. I didn’t want to die. I have a five-year-old. It wasn’t my time to go.” Chemo appeared to be her most tenacious accomplice, her almighty battle buddy. Seemed to be. But then there was Tia Lurdes, Michelle’s aunt. Lurdes, a devout Catholic who regularly attends a charismatic prayer group, demanded Michelle, who at the time was not religious, accompany her. Not refusing help from anyone or anything, Michelle and her fear joined Tia Lurdes.
The prayer group didn’t know she was coming, though, her presence must have been destined. The predetermined reading canvased the topic of fear. Michelle listened. Michelle opened her mind. “I went in and I was crying. I was scared. They prayed over me. They kept praying over me. When I left the room that night, my fear was gone. It was a shiver. A release that came from within. All I could hear on repeat in my head was: Fear is useless. Fear is useless. Fear is useless.”Michelle left the group that evening giving her “fear to God.” With chemo in one hand and God in the other, Michelle has never looked back.
While her fear was thrown out the window of a speeding car on a deserted highway to roll with the tumbleweed in the middle of nowhere, a bumpy road twisted ahead. Michelle and Matt had to tell Charlie. Telling a tender child about the grim reality of cancer meant surfing a wave of trepidation. With the guidance of Michelle’s navigator, Esther, they faced the task. Ultimately, they decided to not use the “C-word.” They told Charlie, “Mommy is sick,” and she’s going to lose her hair. At first, that was good enough for Charlie because he couldn’t yet see the sickness.
But then, “I remember the day Matt shaved my head. I was hurting so bad from my hair falling out. Painful. It was so painful. It was falling out for two days. I said to Matt, ‘You know what, let’s just shave it. Let’s do it now. I got to do it on my terms.’ I didn’t let it fall and fall. For me, that pain hurt much more than chemo. So, he shaved my head. Charlie came home from school that day and he said, ‘Oh my God, you look like Daddy! That’s so funny!’”
The next morning Charlie wasn’t laughing. He woke up visibly distraught. Charlie pleaded for Michelle’s hair to reappear. She again explained, “Mommy is sick. The medicine Mommy is taking is making my hair fall out.” Charlie was not okay with the physical impressions of cancer. Not wanting to scar Charlie, Michelle decided to wear a hat when she was home despite the annoyance. Matt was not okay with her discomfort. He wanted Michelle to be Michelle. It was ever more apparent that as a family they needed to find balance and learn their new normal.
Chemotherapy treatments stressfully continued. One-week Michelle couldn’t receive the medicine because her blood counts were too low. “I literally cried that day,” feeling abandoned by her comrade. Consequently, she also had to miss out on Thanksgiving that year. Around week eight of treatment, she found herself in the emergency room because she couldn’t breathe and her heart rate skyrocketed. The nurses said she had “white coat syndrome.” Every time a doctor would walk into the room her heart rate would accelerate. It was pneumonia. Around week twelve her liver enzymes began their ascent. Her oncologist opted for one more round of chemo for good measure before rescanning her body.
When Michelle saw her doctor’s name pop up on the caller ID, she swallowed something big, but it wasn’t fear. “’Michelle, there’s no evidence of disease in your body.”
“Wait. Can you just say that one more time?”
“Michelle, there’s no evidence of disease in your entire body!”
“I just remember screaming, ‘Thank you, Jesus!’” And the tears streamed. And she was not alone. Her oncologist shared in the rush of amazement, the cries of gratitude, and Michelle understood how lucky she was to possess a special, empathetic relationship with her doctor because not everyone can be so lucky.
“We were in a sprint. Now we’re in a marathon,” her oncologist declared. Nothing felt more momentous than those words. Four months after the original diagnosis, being told she was incurable, she was no longer treating this as a “terminal illness” but a “chronic illness.”
In February 2016 Michelle switched to hormonal therapy. Chemotherapy’s goal is to kill everything in the body, for Michelle, it seemed to have done the trick. The new goal was to make her body produce the least amount of estrogen as possible. The treatment included Letrozole, an aromatase inhibitor; Zometa, a drug used to treat high blood calcium and prevent bone metastasis; Zoladex, a hormone treatment injection into the ovaries, and Ibrance. At the time Ibrance was new to the market. Its job is to target the gene that feeds cancer. At that time it was showing 12.8 months of delaying disease progression, as well as potential to shrink tumors. Since Michelle no longer had tumors, Ibrance was to keep her clean. Even though it was just approved by the Food and Drug Administration, Michelle had no qualms. She had family. She had faith. She had God.
Every three months Michelle was scanned and with every scan came the anxiety, better known as “scan anxiety.” “Sometimes a week before I would think I felt something. Then I would tell myself to shut up. It’s the devil and his disease, Red Legs. Red Legs get out of my head, I would say. It’s nothing,” And, she’d be right. Her scans kept coming back clean.
They just kept coming back clean.
Two years later came the inevitable loop. Sadly, it wasn’t scan anxiety. “I feel like I had a good run with the hormonal therapy. I made it to the 23-month mark, January 2018, and then it started to regrow in my liver. Being that I have stage four we figured I’d be here at some point and I’d have to change treatment.” The cancer outsmarted the therapy. Red Legs played his dirty trick of shape shifting. Although, in typical Michelle fashion, she readily asked, “What’s the next step?” Without question, she was ready to hop the next train.
Her oncologist at Lifespan had already called her colleague, a fellow oncologist at Dana-Farber who was working with a new clinical trial. They agreed that Michelle should begin treatment in Boston. Michelle had only one question: “When do we start?” They would begin as soon as the computer generated the appropriate cocktail. It would be a conglomeration of a hormone blocker called Fulvestrant, Ibrance, and/or immunotherapy. Michelle wasn’t at all nervous about putting her fate in the hands of the machine because she took comfort in knowing that regardless she’d be on Fulvestrant. immunotherapy made her apprehensive. “The night before I had met a woman who had immunotherapy at Dana-Farber and was put into a coma for two months.” Michelle’s oncologist said it was an extreme case. While this was the only time Michelle doubted her medical care, she grew to be okay with it because no matter the generated outcome, all scenarios included Fulvestrant. This clinical trial was her only option. Faith then chimed in: “God is going to pick the best one for me.” God picked option three: the shot, the pill and immunotherapy.
March was turning into April, bulbs were sprouting into blooms, so Michelle celebrated with fresh blond hair and showed it off to her oncologist in Boston. It was returned with a sad face. “It didn’t work. The cancer got worse.” Fortunately, it was contained to her liver. It wasn’t in her bones, her lungs or her breast. It was growing in her liver, and it was time to return to chemotherapy. Jokingly, Michelle reacted, “Man, I just went back to being blond! I don’t want to lose my hair again!”
“No, no! You don’t have to!” There was a new chemo pill called Xeloda. It was a great option because there are minimal side effects and no hair loss, but best of all, it kills everything. Michelle declined to go home and think it over. This shocked the hell out the oncologist, as it was this particular doctor’s first-time delivering D-day news to a Thriver.
“I’m not going to dwell on it. It’s not going to change anything. For the first two weeks after being diagnosed it was, why me? Why me? After that first charismatic prayer group meeting it was, why not me? I can do this. I am not depressed.”
Then, our conversation shifted. Michelle suddenly became consumed with sentiments of a friend she had met through Gloria Gemma. “She’s depressed. She’s hopeless.” Michelle wished she could have extracted the devil and desperation from her friend’s soul. Fear had her consumed by negatives such as life expectancy. “People can live with this disease for over 20 years. But if you Google the median life span of a stage four metastatic breast cancer patient, it’s three and a half years. I never asked. I don’t think anyone should tell you that. Only God knows when it’s your time to go. I will not be a statistic.”
Nope, instead, Michelle is going to be an ass-kicker, a cancer ass-kicker.
In fact, before she was even done with chemo treatments she was already kickboxing again. With every punch grunting, “FU cancer.” And she doesn’t fight alone. Michelle swears Jesus is by her side throwing jabs. This will continue on until she’s “old and grey.”
It has gotten easier with Charlie, he has more understanding now, though, he still doesn’t comprehend terminal illness. He knows that the doctors will forever have to take care of Mommy. This is a tough one for Michelle. She wiped her tears and swallowed the sorrow, “I don’t want to upset him. I don’t want him to worry.”
“It’s weird to see a kid’s perspective. At that young age, you want to give them information but not too much.” One day a younger relative, roughly Charlie’s age, learned Michelle had the “C-word,” so he wouldn’t hug her because he thought Michelle was contagious. He didn’t want to enter her house. He couldn’t understand how Matt and Charlie lived with her.
Michelle thrives on. Every single week she holds tight in that charismatic prayer group. Unfortunately, some of her peers in pink lack a strong grip—merely surviving. “There’s a different mentality. You can survive it, but you still need to thrive it. There is a difference.” She wonders if doctors have different means of communicating with survivors verses thrivers.
The first time Michelle met with a particular oncologist she was drawn to a young couple across the waiting room, thinking they were going through the same situation. “I asked my nurses about that girl. As it turned out, they were asking about me.” The nurses insisted that they meet, and so they did. They became friends. The other woman was 10 years younger. She had stage three and was all cleared after surgery. One day the young lady had a “bad news day.” Cancer had returned with vengeance, stage four. Michelle reached out. “I tried to find words to say to her, and she was mad. She was so mad. I told her it was okay to be angry, but be angry for a moment, don’t stay in that anger because it’s not good. Unfortunately, she stayed in that anger.” The girl passed away in the winter of 2017. Michelle later found out the couple was furious with the doctors because they could only “treat her, not cure her.” Anger had created a rift in her treatment. “Why isn’t she here? I think she gave up. They asked how long she had. The doctors said six months. She died the next day. See, why ask that? Her mom was in denial. Her mom was in the room praying and was asked to leave the room. If anyone is ever in my room praying, please, never ask them to leave.” Battling cancer takes an army.
About a year after Michelle was diagnosed, she had stumbled upon an advertisement for Gloria Gemma’s Breast Cancer Walk. She wanted to help, “But really, they help. I’ve met amazing women through them and have created awesome friendships. Gloria Gemma is love. It’s just love.” Regularly, Michelle and her fellow ladies in pink go out to eat, drink, and share. “Yaps and Apps” is what they call it. Sometimes they talk about cancer and sometimes they don’t. “If there’s a newbie and they want to talk cancer, then we talk about it. And if they don’t, we don’t.” Michelle admits being a stage four in this group can be hard, for example, when others praise their port being pulled or when they will be done with their treatment. Michelle knows she will never be that conversation starter. “But that’s okay. We should be celebrating. We’re there to celebrate life in general, and we should be happy for them. I am happy for them. I would never want anyone to be in my situation.”
Once they were in Sedona partaking in an Angel Whisper Walk. Everyone received a card while standing in two rows. Each woman whispered to the next what their card read. “When it was my turn, the person whispered, ‘Your miracle is coming.’”
With God as her witness, Michelle doesn’t go it alone. Friends and coworkers have handed out her address asking for prayers. In return, strangers have mailed envelopes of love. The hallways of Michelle’s home are covered in notes of grace. She has a keepsake box of hundreds and hundreds of cards. She’s received prayer blankets, prayer teddy bears, flowers, jewelry, donations in her name. The list goes on. “People are amazing. They keep me going. It’s the power of prayer.” The names that sign the cards, the feet that walk her 5Ks, the hands that cook her meals, the people who place their compassion by Michelle’s side are infamously known as Meska’s Army. “If I didn’t have my army, that prayer group, and God, I don’t know if I’d be thriving.”
The nurses have grown astounded by the embrace that encapsulates Michelle, wishing all women could revel in her aptitude for love. Michelle shares that wish, therefore she reciprocates the kindness. After learning about a group of women who do not have a hand to hold during doctor’s appointments and treatments, Michelle decided she needed to be there. She wanted to be there. And so, she is—holding a list of their questions, taking notes, doing whatever needs to be done for them. “No one should go it alone.”
In the freeze of last winter, Michelle learned how to knit hats by watching You Tube videos. A stranger had knit one for her, therefore… “They weren’t perfect, but it was the least I could do.” Michelle gave seven perfectly imperfect hats to the Cancer Center.
As Michelle thrives on, every single day is cataloged. Some have commented on how much she posts on social media, but for Michelle, it’s a way of creating a log for Charlie to look back on, to have those memories. Additionally, Michelle has begun her sixth journal for Charlie. “I either write a poem or a memory of the day. I print out a selfie of us and put it on every page. It’s not that I think I’m going to be gone tomorrow. It’s not about that.” It’s about making memories.
On September 10, 2018, Michelle began her second round with Taxol chemotherapy. This time she is wearing a cold cap. The cold cap, an extraordinary donation, is a sort of helmet that chills the head to a cold -15 to -40 degrees Fahrenheit in efforts to prevent hair from falling out. In the past five months of weekly treatment, her tumor markers and blood counts have fluctuated. But that smile, that persistent smile continues to shine strong.
n some ways Michelle considers cancer to have been a blessing. “It makes me enjoy things more and do the things I was putting off. No one is promised tomorrow. I plan on thriving until the very end…for decades and decades to come. I can’t give up that hope.”
* About the Author:
Genette Nowak Merin is a writer and English professor residing in Rhode Island. After receiving a BA from Western Connecticut State University, she moved to New York City where she obtained an MFA in Fiction from The New School. Her work concentrates on the (im)morality of fiction in conjunction with effective ways to build bridges of empathy between writer and reader. Genette’s literary journey continues with the publishing platform Between Lines Books and Arts where she is experimenting with the organic inflection and fluency of the anthropocentric earth mind. Her work has appeared in the Connecticut Review, the Carrier Pigeon, Jezebel Music, and Zink Magazine—to name a few. Additionally, Genette has a newfound interest in illuminating the glories of what it is to be a cancer thriver, not because she is one, but because there a few who are extraordinary to her soul.