Early morning walks around Rice University are perfect before a long day of poking and prodding! Especially when they involve my sister, Monica.

My sister was the first one to mention bowel function and sphincter preservation. The only rational response was to suffer a complete meltdown. What did she mean bowel function and what in the fuck did any of this have to do with sphincter preservation? Obviously, the diagnosis of rectal cancer and its many implications hadn’t quite sunk in.. When I explained to her the tumor was low enough to palpate she immediately made the connection between the surgery to remove the tumor and amount of space needed above the anal sphincter to maintain proper functioning. I did not put these things together. In my head chemo and radiation would shrink the tumor and I wouldn’t need surgery because bad things almost happen to good people and then we magically avoid true discomfort. Ha. Hahahahahaha. Wrong.

That was when it became apparent that my only option was to find the best lower rectal cancer team in the U.S., the world if necessary. I was 43, single, and did NOT under any circumstances want a colostomy bag or messed up bowel function. As a matter of fact I’m relatively certain the term “slit my wrist” slipped once, twice or maybe five times. The long term quality of life outcomes of rectal cancer are kind of a bitch. Why did it have to come with a lengthy abdominal scar, a poop bag, and the potential for diminished bowel function? Wasn’t this a little extreme? But in most cases it does, and this is why colorectal cancer, barring metastasis, doesn’t really kill people anymore.

We scrambled to get the scans and medical records necessary for MD Anderson to review my case. Colonoscopy with endoscopic ultrasound, lab work, follow up with GI doctor, CT scan, PET scan, medical oncologist, MRI and EKG. Between doctors appointments, Pilates training and work, I was frenzied and out of body. I wasn’t doing anything necessarily well, but I kept doing everything I could. Time with friends and family was imperative, and to say they stepped up would be the biggest understatement of my life. Flowers, phone calls, visits, a lifetime supply of tea, love, love and more love. And they fought on my behalf to get my treatment started as quickly as possible under the best care imaginable.

During all this time I was waiting on my staging and treatment protocol. Waiting and waiting and waiting and thinking with each MD appointment or new scan they would stage my cancer and tell me how they would proceed. Hopefully tell me I would never need a colostomy or ileostomy. They didn’t. What we knew for sure was that I had a large lower rectal tumor covering approximately 50% the diameter of my rectum. My tumor had grown itself some lymph nodes, pushed through my rectal wall and was abutting my vagina. “I have a rectal tumor abutting my vagina.” Say that over and over in your head and tell me how sane you are in 20 minutes. In the first week it became apparent that this process wasn’t going anywhere nearly as fast as I needed, so I jumped to action and decided to begin the healing process myself. I named my tumor Keyser Soze (“and like that, poof. He’s gone”), surrounded it with chanting Tibetan monks, and put Jon Snow on the wall between the tumor and my vagina. My plan is still to astound everyone by making my tumor disappear as though it never existed at all.

Picture this: my tumor named Keyser Soze surrounded by chanting Tibetan monks and Jon Snow on the wall protecting my vagina. I believe I’ve got this.

Three weeks after my first colonoscopy I walked into MD Anderson still unstaged and received my medical record number (necessary for all things MDA and permanently etched in my memory) and met Dr. John Skibber, lower rectal surgeon extraordinaire, the following Monday Dr. Cullen Taniguchi, my phenomenally talented and compassionate radiation oncologist, and that Friday Dr. Christopher Garrett, medical oncologist and my chemo guy…crushable in an odd way. And I met the staff of MDA. From the individuals that valet’d my car to the PA’s and nurses who represent the doctors mentioned above, I was treated with nothing but the utmost respect and courtesy. Maybe they spike the water in the employee work stations or maybe they have the worlds most effective sensitivity training, but whatever they’re doing, I am grateful because having cancer blows and they seem to get that.

Stage III rectal cancer with no signs of metastasis. Recommendation 28 treatments of oral chemo and radiation. Follow up 6-8 weeks post chemoradiation with surgery. Follow up with 4-6 months of chemo to make sure that no microscopic cells have migrated to my liver or lungs. They can’t tell you pre-surgery if post-surgery you will wake with a permanent colostomy or temporary ileostomy. They said they had every expectation I would handle treatment well, I would have pain, and that I could receive chemoradiation in Austin or Houston. We stayed in Houston. These were dedicated ass people, and in the end, it matters.

Trancoso, Brazil. My home away from home, and when I knew something was truly wrong. (photo credit, Leah Flippen)

Things don’t always go away if you ignore them.

We came back from Mexico and the celebration didn’t end until New Year’s Eve. An extravaganza was thrown for one of my best friends birthday that included close friends and visitors from all corners of the world, some of who stayed through Thanksgiving. Holiday lights went up, Austin became shiny, the days grew dark and the overwhelming sense of merriment was palpable. I love the holidays, I love lights, I love eggnog and I love the milk of human kindness that flows through holly and garland. For a moment I stopped regarding my symptoms, but in my mind was already beginning to dedicate 2015 as a year of health, well being and rest.

January was a hopeful and focused month. I was going to bed early, waking up early, eating at home with lots of easy, healthy, whole foods and beginning a 600hr Pilates apprenticeship that would be the focus of my year. My work was busy and my life was feeling organized and flowing. Into February my personal Pilates practice was stronger than ever and I was beginning to do some teaching. I had scheduled an annual pilgrimage to Brazil to decompress and play in the worlds most beautiful setting. It was a stellar trip full of long beach walks, hours in the ocean, dinner parties, friends, laughter and rest. I was only there for 2 weeks, but I knew I should come back feeling refreshed and ready to conquer the next 6 months.

My Swedish Brazilian family. Helena, Kiko and Theo. She has the most peaceful, warm, and loving home on the planet. If you don’t leave here feeling renewed and completely invigorated, something is wrong.

May we pause for just a moment and raise a glass to my beautiful sister friend and the two supermodels sitting with her. She brought me to Trancoso, Brazil in the first place, and I couldn’t be more grateful.

I came back tired. The bright red blood streaking my stool had increased with the added bonus of frequently passing bloody mucus. There was blood on the toilet paper most every time I wiped. I was going to the bathroom up to 8 times daily, and in my Pilates practice I was becoming weaker despite 5 days a week logged between apparatus and mat work. My private lessons were frustrating. The core strength was there, but I was having trouble keeping up the pace of the 1 hr practice. My body still felt bloated and gassy even with the improved diet and significant increase in movement.

With a growing urgency and underlying, inexplicable sadness, the overwhelming reality that something was wrong became undeniable. I had made every change I could think of to improve my condition: diet, exercise, macrobiotics, probiotics, rest. And nothing was getting better. It was this fear that drove me to call Dr. P’s office, schedule another appointment and request a colonoscopy. Two weeks later I saw the Gastrointestinal doctor (Dr. L) who recommended a colonoscopy. Because of my young age he ordered the colonoscopy without hesitation, but had more concerns regarding colitis and IBS than anything else.

I was nervous and motivated, so when they handed me the info sheet for appointment scheduling and said I should hear from someone by Monday, this was Friday, I was on the phone scheduling for myself within the hour. Because I made this phone call I slid into the Wednesday slot just 5 days later. They had a cancellation right before I called, otherwise my appointment would have been 2-3 weeks later. Word to the wise, and the best thing I did in all of my early days of tests and scans, DO NOT WAIT FOR THEM TO CALL YOU. Call and make your appointments, bug them to get you in faster, and say “please.” There is no way to stress how far graciousness will get you, and if it gets you an appointment two weeks earlier than you might have, “please” might be one of the most important words you ever utter. And it’s just important to be polite. Always.

MoviPrep. How witty! Taste like lake water and goes down much better chilled.

Colonoscopy preps suck. The colon preps taste awful (it’s much better cold), chugging all that fluid down is lousy and you’re attached to a bathroom for 24 hrs. Your stomach will be painful and bloated, and personally, I can never sleep those nights I’m doing a prep. Only clear fluids, broths or yellow jello all day long. Yellow jello is gross. So is green. However, none of this sucks as much as your doctor telling you the following day “it’s not good news.” If they move you into a room with a view before the doctor comes in to give the initial results, chances are they aren’t just being sweet. Chances are someone’s about to tell you that you have cancer.

Caleb, me, Karen and Jeanne. San Miguel de Allende, November 2014.

October 2014

On the rare occasion I needed a doctor it was easy enough to phone up the doc in a box for same day appointments with any one of their nurses or PA’s, but it never seemed necessary to have a doctor of my own. Blood in my stool seemed like an adult malady, so like an adult I went to see my parents doctor. It was convenient and he took my insurance, which unfortunately is often a doctors best qualification.

We discussed my symptoms: bright red blood streaking my stool, occasionally noticing bright red blood when I wiped, always feeling a little bit tired, increased gas and bloating, no constipation, no diarrhea, no weight loss, no pain. He asked questions about my diet: it’s relatively rich, I usually ate out, but ate mainly real, whole foods with very little processed intake. My alcohol intake came up which had previously been more than your average person but about normal for your average Austinite. Did I exercise? Yes, Pilates twice a week cardio 3-5 times a week. We reviewed my family history and my parents history of polyps diagnosed and removed multiple times over the last few years. Dr. P (as he shall be known) was mostly convinced it was internal hemorrhoids, and to be sure he listened to my heart/lungs/bowels, palpated my stomach and did a complete rectal exam both manual and visual. He didn’t feel anything and saw no evidence of hemorrhoids or tearing, but wrote a prescription for a suppository to treat hemorrhoids and gave me a kit to collect a fecal sample. He also ordered an ultrasound due to some minor abdominal tenderness. With a little blood work I was out the door with a script for the ultrasound and an appointment to return in 2 weeks.

To be fair to myself, I thought the suppositories were a suggestion. Seriously, he didn’t seem too sold on the idea either. With no evidence of hemorrhoids it seemed like an inconvenient waste of time to use the suppositories, and I didn’t like sticking things up my bottom (jokes on me). I turned in the stool sample, continued to clean up my diet, proceeded with the ultrasound and returned to see him 2 weeks later. Because there was blood in my stool the sample was contaminated and “unusable”, my blood work came back normal, and come to find out the suppositories had been more than a suggestion. The ultrasound was normal and he seemed decided it was internal hemorrhoids. Dr. P instructed me to try the suppositories, reissue the stool sample and make a follow up appointment for 2 weeks.

The suppositories did nothing, I turned in the fecal sample and when my appointment came up in 2 1/2 weeks I had just returned from a trip to Mexico with friends and completely forgot about it. Then came Thanksgiving, the holidays and the new year. My doctor hadn’t seemed very concerned about my symptoms therefore neither was I.

Helen Mexico Bowers and I, circa 1973. Watermelon is everything

This is a story about rectal cancer. My rectal cancer, and how I got comfortable talking about my rectum. A lot. To be clear I am not dying. The prognosis for rectal cancer is excellent, and all around me people are relieved to hear that this will not be the thing that kills me. I am, too, but since I’m not worried about death (immediately) the conversation that swirls in my head regards ostomies, bowel function, and a tumor that is “abutting my vagina.” 43 year old women have enough on their plate as hormones levels plummet and crows feet sink in. It seems a little much to top it all off with the possibility of a permanent colostomy bag. But we do what we got to do, and this will follow how I do it.

July 2014 – Oct. 2014

In July of 2014 I discovered my fruit monger. He was a middle aged Hispanic man who I’d noticed on Riverside Dr. for years. His long trailer with the striped awning was always filled with watermelon, mango, papaya and other good stuff, and finally one day I stopped. In this moment I discovered the perfect seedless watermelon and an addict was born. I was going through 1 medium watermelon every two days: watermelon chunks, watermelon juice, watermelon salad, watermelon gazpacho. I was a watermelon addicted sailor. Around this same time I started to notice some bloody streaks in my stool. Of course, with the amount of watermelon I was eating it was probably the beet affect. Most probably the massive amounts of fiber had inflamed the lining of my stomach and it was irritated. Along with the bloody streaks I had also noticed I was going to the bathroom multiple times a day, with a little looser stool that, in retrospect, was narrowed. I googled watermelon. Watermelon is almost 100% water and fiber. So, of course, once again, it made perfect sense that my symptoms were a result of heavy watermelon consumption. As a Physical Therapist who had dealt with many diagnosis this made the most sense to me. 6 weeks in I cut back on my watermelon consumption and decided to give my stomach a break.

Nothing changed. Except for my stool was firmer from having less fiber (for some this might seem an unnecessary detail, but if you’re reading for information it matters). The blood was bright red and seemed fresh when I saw it on toilet paper. And this brings us to what I thought I knew about cancers of the stomach or colon. Symptoms include:

—dark, tarry blood in stool
—a change in bowel movements (narrowing of stool, severe constipation)
—abdominal pain or pain voiding
—weight loss
—extreme fatigue

None of these things pertained to me really, as I saw it. In July I also decided to take a month to really clean up my diet and lifestyle; at 42 it seemed time to reign it in. I had split with my husband in 2010 and spent the next few years thoroughly enjoying life. July 2014 was a season of change. Pilates twice a week, daily cardio, smoothies, macrobiotic meals, organic foods, and plenty of rest was “in” while heavy meals, wine, liquor, sleeping in and dinner at restaurants 7 nights a week was “out”. Although things eventually evened out in August due to being extremely bored with my newer, healthier self, I did maintain more moderate habits. I should have felt like running a marathon, climbing a cliff face or dancing into the wee hours of the morning.

But I was still tired. Not fatigued, not completely lethargic, just generally tired. The bleeding continued, but I had no pain, zero weight loss and no dark tarry blood. In my mind one of the perks of cancer was extreme weight loss. No such luck. My stomach felt gassy and bloated, but everyone knows those are symptoms of too much gluten. I was fine working and exercising, but I stayed home more and stared blankly at the tv more. A quick google search indicated possible internal hemorrhoids, possibly a bleeding ulcer, maybe an anal fissure. My mother and Pilates teacher urged me to see my PCP, but I was busy and kept putting it off.

In October it finally sunk in that the bleeding wasn’t going away, I was a little tired ALL the time and I had been ignoring this about as long as I could without being completely ridiculous. I made an appointment with my parents PCP and decided to get this checked out and go on with my life.