Over the course of several months, Google had become Carolyn’s best friend. Or not. It started out with sharp stabbing pains while sitting at her desk. Over the course of several weeks, the pains intensified and continued with regularity. She’d look up symptoms and know something was wrong.
When she tried to tell her doctor, she was referred to an OBGYN where she was given Vicodin to make the pain go away. Staying persistent, she kept calling when the pain never subsided. Finally, she was seen by a gastroenterologist who performed a colonoscopy and discovered her colon tumor.
Surgery determined that the cancer was stage II, it had grown through the colon wall but there was no lymph node involvement. Carolyn declined chemo, feeling like it didn’t significantly reduce her odds of recurrence.
If the physical effects of cancer weren’t enough, Carolyn had to face the mental and emotional struggles of cancer, too. Rude comments from nurses and being told she had “simple cancer” made Carolyn face many of the ways cancer invades your life and tries to take over.
I was a chubby kid, a heavy teenager and an obese adult. When I turned 32, I lost 100 lbs. through exercise and a healthy diet. I always figured that would be my story. I would be the woman who lost 100 lbs. That would be “my thing.” I never thought I would be the woman who was diagnosed with colon cancer at 35. That cancer was now “my thing.”
Pains at my desk
I was sitting at my desk in February 2010 when I felt a dull ache in my stomach about two inches to the right of my navel. It suddenly exploded into an intense stabbing from the inside out. Any movement, any breath at all, made the pain a thousand times worse. As ridiculous as it sounds, I tried to swivel my chair (ow, ow, ow) around and lift my hands (ow, ow, ow) to my keyboard to type my symptoms into google. Was my appendix bursting? Was I passing a stone? I was sweating profusely and after about 15 minutes I practically crawled to the restroom praying no one would see me and was able to pee. After a few more minutes I was able to stand up straight (very, very slowly) and the pain began to subside. I figured that bodies are weird and do weird things and I’d worry if it happened again.
Of course it happened again. Over the next few weeks the pain recurred but more low-grade than that first bout. I would have an ache that would last for the whole day. Or I would have a sharp shooting pain that would disappear as quickly as it came. I finally called my doctor and she sent me in for an ultrasound. The test results showed a fibroid on my uterus. At this point my primary care doctor was on maternity leave and her fill-in sent me to see an OBGYN to discuss the results of my ultrasound. Because of new computer software, the office was only booking half the amount of patients (I wish this was a joke) and it took two months to get an appointment. I cried and begged but they wouldn’t budge and it took two months to finally see the doctor.
No big deal … here’s some Vicodin.
When the day finally came…the day I was banking on to explain why I was having mysterious pain and how we were going to solve it, the doctor spent all of five minutes with me. She told me the fibroid was the size of my pinky nail, no big deal and that I probably had a kidney stone. Then she chirped at me, “But you seem to be feeling better, right?” She gave me a prescription for Vicodin and sent me out the door. I cried on the way home because, no, I wasn’t feeling better. My doctor was still on maternity leave so I just self-medicated with the Vicodin during my increasingly frequent pain episodes and wondered what was really wrong with me. It seemed weird that a kidney stone would always hurt in the exact same spot. After a few more months and more pain my doctor was back in the office and I knew that things just weren’t right. I called and she sent me in for a CT scan. At this point things got very scary, very fast.
Lectured from the mean nurse … giving me the IV
I remember sitting in the scan waiting room suddenly doubting my pain, trying to convince myself that it really hadn’t hurt THAT badly lately and all I had was a raging case of hypochondria. I began to worry that I was causing a lot of trouble for a lot of people for no reason. Aside from the stress of having a CT scan to look for “something,” I was really nervous about having to drink the barium and that I was going to poop my pants on the way home (oh the google searches I had been doing the day prior…)
To make life even more uncomfortable, the nurse who administered my IV was terrible. She lectured me for having tattoos (yes, in 2010) and informed me that I was a disappointment to my mother. There are so many terrible moments that stick out in my mind during my cancer experience – moments that could have been filled with kindness and understanding…like when a nurse is puncturing your skin to give you an IV. I was sitting there wondering what’s wrong with me and if they are they going to find something. She COULD have told me a joke or a story about her kids or even said NOTHING which would have been even better. Instead, she made me feel bad about myself. No one should feel bad about themselves for their physical appearance. Ever. And certainly, not when they’re about to go in for what amounts to a life or death test. I remember leaving that appointment wanting to write a letter to her supervisor the next day, but the next day turned into hell.
Butt and Gutt Docs
I didn’t think I’d get results back so soon but they found “something” on my CT scan. Because of my age and no family history of cancer, they figured it was probably a weird infection and that a hardcore round of antibiotics would kick it out. Still, my primary care physician wanted to get me to see a gastroenterologist as soon as possible and to have a colonoscopy because, well, because it COULD be cancer. Sitting at work being told you could have cancer is not an experience for the faint of heart. I wish it on no one. This really WAS the last possibility I had considered because in all my internet searching freak outs (and there were many). I had always taken cold comfort in the fact that “cancer doesn’t hurt.” Well, what I was experiencing certainly hurt so at least I could strike cancer off the list. Apparently not.
I saw the gastroenterologist the next day. You know you’re in trouble when a doctor’s office is calling YOU and making an appointment with YOU and asking YOU to come in as soon as possible. Usually you are the one begging to be seen. He was a nice man who was a little difficult to talk to, though I suppose butt and gut doctors may not be the warmest guys around. He performed my colonoscopy a few days later and found a mass that was so large he couldn’t get the scope past it. In the recovery room where everyone was sitting in chairs waiting to go home, they had me wait in a separate private section where they could tell me my news away from curious and pitying stares. At this point we still only knew I had a mass, but not that it was malignant. I had really, really been hoping for an infection. It’s weird typing those words.
It’s officially cancer
That official news that my tumor was malignant came four days later when my gastroenterologist called me at home on a Sunday. I was alone when I got the call. When I hadn’t received the results by Friday night I figured I wouldn’t hear anything at all over the weekend so I could at least try to enjoy a few days and put it out of my mind but a call came in on Sunday afternoon from an “unknown” number. Though I usually don’t, I answered it. It was August 22, 2010 at 1:01 p.m. I had taken a long hike in the Santa Monica Mountains earlier that morning and found a blue jay’s feather. I thought to myself “A lucky feather! I bet everything will be fine.” And tucked it into my pack to bring home with me but oddly (or not) I had lost it by the time I reached my car. My doctor said he had the news. “It’s not good. Carolyn, it’s cancer.” I went into complete shock. He made me repeat back all the words he said to me, which I did. All I wanted to do was hang up and call my mom.
My surgery was scheduled for September 17. I had to stay on a liquid diet for that month because my tumor was so large that I couldn’t risk any blockage and going into septic shock. In fact I did get a pretty bad infection after my colonoscopy which just added insult to injury. In that month I had many, many doctor’s appointments and had to make the agonizing decision of whether I wanted to lose all of my colon or (just?) half. I chose half though there were pros and cons to each decision, if you can call losing ANY part of your colon a “pro.” I met with a geneticist to see if I had the HNPCC gene. Because of my age and placement of my tumor (on the right side/ascending) it made sense to do genetic testing. If I did have the gene I was also going to have a hysterectomy. Thankfully the test was negative and my cancer still remains a mystery.
The surgery was far more painful than I anticipated – I felt like I was carrying around a sackful of knives in my stomach. But physical recovery was also much quicker than I had expected. Immediately upon hearing the news from my surgeon that my cancer had not spread to my lymph nodes, blood stream or other organs I began feeling survivor’s guilt. I felt a wave of immeasurable happiness, which was then overtaken by a tsunami of guilt and I suddenly couldn’t breathe. Overwhelmed. Why was I spared? Why do I have it “better” than any other unlucky jerk who grew an out-of-control polyp?
The mental recovery of cancer
The mental recovery is ongoing and it may take a lifetime to get there, if ever. I am definitely changed for the better and for the worse. There have been beautiful and ugly moments through this whole ordeal. The sad truth is that people will abandon you when you need them most. You could fall into a pit of depression. You may need pharmaceuticals to find your way out. You may need them for a long time. Or forever. When I go to sleep at night I get to stress out over a 20% chance of recurrence and metastasis. I’m always looking over my shoulder. There has literally not been a day to go by in a year and a half that I haven’t wondered if and when I will get it again. And will it kill it me this time? Statistics don’t mean anything to me when I’m already part of the .0000000023842379379 percent who got colon cancer under 50.
The moments of genuine heartfelt kindness and love and prayers have moved me to tears (so many tears!) more times than I can count. I’ve been commended for my bravery, which is odd to me. Like, what else can I do? I have a doctor’s appointment; I go or I die. Bravery never entered my mind. I do it because I have no choice. I just hope I do it with some dignity (an area where I have definitely faltered more than a few times).
I can sometimes find some dark humor in my new upside-down life, but I don’t consider myself at all a warrior or a victim or that I’ve won some sort of “battle” against cancer (or whatever tired euphemism people tend to post about on Facebook – i.e. “If you’ve ever lost a loved one to cancer please dedicate your status blah blah blah.”) Thank you, but no. I don’t need your pity status that you’ll just overwrite with a funny eCard in three hours.
Mostly, I think I just got lucky. Plain and simple lucky (in the unluckiest way possible). And I hope and pray that science will catch up and more and more young people who are getting this “old people’s disease” will get lucky just like me.