Tori said it to me in the hallway of a dorm.
“It’s cancer. Ovarian. Stage IIIC,” she said into the phone in an eerily calm way. Actually, calm is what she would remain over the next 1½ years of her cancer battle ― the opposite of my assumed reaction to such a diagnosis, which would be abject panic.
Selfishly, when my heart dropped to the floor, it wasn’t just for her: It was for me, too, because I had been struggling with my health for a long time as well. We shared many of the same symptoms ― bloating, pain, excessive cramping, problems eating and irregular periods. It was my worst nightmare that I would suffer the same fate.
Tori went to see a doctor months prior for the same symptoms. In fact, she actually saw two doctors. The first one told her it was “IBS,” irritable bowel syndrome. He did no tests, blood or otherwise, and didn’t scan her. He would have noticed the tumors in her ovary if he did. I don’t have any evidence that he could have done this.
The next doctor told her it was “intestinal fissures” and “kidney stones.” Still, no one took the time to test or scan Tori ― they just gave her some antibiotics and sent her on her way. She didn’t get some actual answers until a romantic date with her boyfriend ended in disaster when Tori collapsed on a bathroom floor and was rushed to the emergency room.
Those answers weren’t what we’d hoped they’d be. It was not a pleasant surprise.
Not even close.
“It’s interstitial cystitis,” the nurse practitioner declared during my visit to address my symptoms. She and my last name were the same, so I was curious if we might have some kind of kinship. We wouldn’t ― I despised her. It was hard to be comforting when she was so rigid and factual.
“It’s bladder disease ― no one knows what causes it,” she said. “You’ll have to change your diet and we can do bladder infusions,” she added offhandedly. Is she still chewing gum
“When will it go away?” I asked timidly, clutching my paper gown to my chest.
“Oh, it won’t.” Matter-of-factly, she scrawled something on a clipboard. “This is a lifelong disease.”
All the way to home, I wept.
The treatments I received were very unpleasant and began shortly thereafter. I changed my diet to one that was bland and tasteless, as IC-ers allowed. No tomatoes, no acids, no coffees, no lemons. My bladder began receiving infusions containing anti-inflammatories, lidocaine, and epinephrine. Each session was a nightmare of pain and left me feeling shaken. My symptoms didn’t go away. They actually got worse. It was a desperate situation that I found myself stuck in.
Tori started radiation and chemotherapy as I struggled through bladder treatment. She lost her hair and bought beautiful red-headed wigs to flatter her skin. Her life was so unpredictable that she couldn’t control it all. So she kept her eyes on the important things and focused only on Logan her dog.
We sent an email Facebook constantly about what was going on in our own personal health lives ― something that most 25-year-olds don’t ever have to consider. Although Tori’s situation was much more dire than mine, she had so much empathy for my pain and desperation. Her emotions were too overwhelming. She was also very tired after her surgeries. The chemo had a devastating effect on her health. Our joke was that we were old women.
We sat down in her apartment and looked out of the window one day. We saw two actual older ladies strolling along in flip-flops, looking as though they didn’t have a care in the world. She was weak and I was in severe pain.
“I can’t even remember what it was like to stroll like that,” Tori said. We wistfully looked out at those women, envying them, coveting their aura of ease and comfort ― something that had been missing from our lives for months.
“My diagnosis wasn’t a death sentence, but it felt like one. I was in constant, agonizing pain, and the treatments still weren’t helping.”
As a juxtaposition to Tori’s calm, measured state, even with a very serious cancer diagnosis and not many options, I spent most days crying or falling down rabbit holes online, reading horror stories about people who had interstitial cystitis and how they were trapped in their pain, never to be released from the horrid cycle of illness. My diagnosis wasn’t a death sentence, but it felt like one. I was in constant, agonizing pain, and the treatments still weren’t helping.
This is due to the fact that interstitial cystitis was not something I had. I never did.
The only thing I could think of was severe endometriosisBecause my symptoms were different than usual, this had been undiagnosed. This is how I came to my conclusion.
After sitting through appointment after appointment and having my pain dismissed, being told I was “depressed,” being told I had “IBS,” just as they had told Tori, even after going to therapy because a male gynecologist suggested to me that my pain was coming from my emotions, I found a great doctor who saw the urgency in my story ― who saw that I couldn’t continue living with such a high level of pain. Exploratory surgery is the only way to diagnose endometriosis. I consented.
My pain significantly subsided after a laparoscopic operation by one of Nashville’s most experienced surgeons. However, due to the length of time I’d suffered with no answers and, therefore, without managing the condition, it had wreaked havoc on my organs. Although the beyond-painful endometriosis had been removed, I was left with scarring, scar tissue and a diagnosis of fibromyalgia, which isn’t uncommon for chronic pain sufferers.
Physical therapy was something I tried out, and I have continued it four years later. It was a blessing. Despite the fact that it was a long process, I determined to keep going with my sessions. I finally reached the point that I knew I could recover. I was able to move on. I would succeed in my job. I would find someone to love me and live a fulfilled life.
While my misdiagnoses led me down a path to antidepressants, ineffective bladder treatments, therapy sessions, wasted money, emotional trauma and possible infertility, Tori’s had far more severe consequences.
Tori was taken from us in June 2017. She was 27. I had seen her two months prior. She seemed to be doing well ― she looked great, albeit a little thin, but her cheeks were rosy and her attitude was upbeat, optimistic and cheery. She was genuinely very happy and didn’t complain one time throughout her battle with cancer. That is the majority of our friendship.
It was one of my greatest regrets in life that I never got to say goodbye. At the time, my boss refused to allow me to travel four hours for her funeral. The next week, when I informed him ― not asked ― that I would be going to her funeral because she had died over the weekend, he looked down and said nothing. While I still harbor some anger at him about that, much more of my focus is directed at those who didn’t take Tori seriously when she was in pain.
Many health problems can be a problem. women are much more likely to be misdiagnosed than men. Why?
Many doctors, both male and female, brush women’s health issues off as “complaining” or “being dramatic.”
Women’s health symptoms may present differently than men’s ― for example, classic heart attack symptoms may be absent from a woman suffering from heart disease.
Sex-specific disorders are even more complex: Many gynecologists tell women to lose weight, to reduce stress or just to go on birth control instead of really taking a deeper look at what’s going on.
Doctors believe pain in women’s menstrual cycles is an expected part of life. Although this is true at a very low level, it’s still worth looking into the symptoms. The symptoms of ovarian cancer ― which is what Tori died of and can include bloating, fatigue, trouble urinating and loss of appetite ― can be shockingly silent or hard to differentiate from symptoms of other, less fatal conditions.
Ovarian CancerOctober is awareness month, however I would like women (and men) and all ages to know that September is also Awareness Month. to be vigilant all year long about their health and their bodies ― not just looking for potential cancers, but for any symptoms that arise and concern them. There are great doctors out there who will hear you, listen to what you’re going through and take you seriously. If you aren’t happy with the way your symptoms are being regarded or treated, seek a second opinion. Seriously! You could be saved!
Tori would have loved to be able to experience her life, regardless of how it turned out. She was smart and driven. And she always had high hopes. It was her first time graduating college. On that hot, humid day, she knew something more than many other graduates.
After Tori died, the urge to text her didn’t subside. Her ex-husband, who looked gaunt at her funeral, sobbed behind the church. It wasn’t until I had yanked out my phone and opened Facebook Messenger to tell her about it that I remembered she wouldn’t read it. She wasn’t there.
The message was sent anyway.
Sophia Harris is an author and content creator from the Midwest. She’s passionate about healthy living, environmental and agricultural issues, storytelling, and greyhound rescue. In the Indianapolis region, she supports Billie her greyhound Billie emotionally. Her passion is leaving parties before 9 p.m., and her worst fear is Trader Joe’s on a Sunday. She can be found on LinkedInOr InstagramOr down another YouTube rabbit hole to see where she is currently.