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Hurry Up, Hurry Up, Hurry Up!! Wait.

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

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.

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.

This was how I felt inside in the days following my diagnosis.

This was how I felt on the inside the days following my diagnosis.

May 20, 2015: The World Spins Madly On

Coming out of the twilight sedation was dreamy. The world was fuzzy and light and I opened my eyes to see Dr. L walking into the room. In retrospect he was sad, and later my mother told me they had moved us from the normal recovery room to one with a beautiful wooded view. It wasn’t good news. “There’s a malignancy.” Before and after. Before he uttered this phrase I was normal. After he uttered this phrase I looked over at my mother sitting in a chair in the corner with the tears in her eyes, and all of a sudden I had cancer.

And then the comforting began. Me comforting myself and me comforting everyone else. People talk about this a lot with these diagnoses. The urge to make it normal is astonishing. To make small talk with the nurses and doctors looking at you with such pity in their eyes. Don’t you dare pity me. Be normal. Tell mom it will be okay. Call dad. Call Monica. Call best friends. Pick up a smoothie go home and field phone calls telling everyone it will be fine. Do some googling. No no no no no no. Do NOT google. Do not cry. Laugh and help everyone else to laugh with you because the crying makes it seem real. Go to sleep and wake up in the morning. It is now After and I have cancer. Once again, don’t you dare pity me.

My mother filled out the online application for MD Anderson that afternoon after we returned from the outpatient clinic. While I still tried to pretend that I was Before, she began moving forward. In my haze I gave permission to the woman on the phone to speak with her and my earth began spinning on a different axis. Information needed to be gathered, scans needed to be done, and if I was lucky, my case would be picked up at MD Anderson, the number one cancer treatment center in the United States and leading researcher in colorectal cancers. The following day I returned to work and called Dr. L for more details after realizing I hadn’t absorbed anything the day before and hadn’t asked questions.

The initial dictate to my family was firm: “under no circumstances are you to call this rectal cancer. I refuse to spend the next year talking about my rectum with my friends. It’s embarrassing. We will call it colorectal cancer. No one needs the details.” Dreamer. Within 2 weeks it became rectal cancer. It’s surprising the things we get used to after saying them enough. Rectal. Rectum. Bowel function. Sphincter saving. Abutting my vagina. Fuck me.

They don’t know much in the beginning. Lower rectal cancer. He believed it to be an adenocarcinoma and told me it was so obvious that if I wanted, I could reach in and feel it myself. Thank you, but no. Radiation, he said, maybe chemo, maybe surgery. So it began. The test, the doctors appointments, the lab work, MRI’s, PTscans, CTscans, colonoscopy with an EUS (endoscopic ultrasound). In those days between diagnosis and treatment time dragged so slowly that it felt like the cancer would kill me before the treatment began. I smiled, reassured my friends, spent time with family, continued to go to Pilates, continued to work, and once or twice cried loudly in my car while I beat the steering wheel. Super cliche.

The days after my diagnosis were a frenzy and here are some of the most important lessons I learned.

Call to Schedule Your Appointments Immediately: The doctor or his representative will always tell you that their diagnostic clinic will call you to schedule an appointment for lab work, scans or any other follow up testing needed, and will provide you with a phone number in case you don’t here from them in 1-2 business days. Don’t wait for them to call. Wait about 1 hour for the medical staff to enter the order into the computer, then call to schedule your appointment. I can’t tell you how many appointments I was able to schedule 1-2 weeks earlier than I would have waiting for the office to call. Often I was able to slide into someone’s cancelled appointment or stress my fear and have my name put on a cancellation list. Like I said above, it feels like a lifetime between diagnosis and treatment, so take as much control as you can in driving the process forward.

Do Not Google: There is an abundance of information online. This blog is part of that abundance. In the beginning it is overwhelming, and there are some things you might not want to know immediately. This is your cancer experience and each one of us is different. The mind is a powerful tool, and it is important that you feel optimistic and strong going into this. Everyone handles treatment differently, and a lot of the information you will find out there doesn’t pertain to you or is outdated. If you need information go to the National Institutes of Health website ( Otherwise you will make yourself insane trying to piece it all together. Also, everyone has a friend, family member or acquaintance who has been through the same thing and wants to talk to you. Your call. I spoke with one 63 y/o woman who had rectal cancer and had me so freaked out by the end of the conversation that I couldn’t talk for 2 hours. I stopped listening to other peoples stories and decided to have my own cancer experience.

Get Organized: You will need a calendar, pens, a notebook and an escort to all medical appointments. In the first weeks following your diagnosis, your medical team is rushing to gather information while all you really want to know is what stage, prognosis, and when they will finally pull themselves together and start treatment. Seriously, I remember the moment where I told one of my doctors that as no one else seemed necessarily concerned about beginning my treatment, I would heal it myself with visualization and diet. I meant it. The waiting was making me crazy. The more organized you are the more control you have in pushing your treatment forward. In your notebook you will need:

—copy of medical records
—disc of CTscans, PTscans, MRI’s, etc
—phone numbers for MD’s, nurses
—insurance information
—dates of test, lab work, appointment

Take a second brain to your appointments. You will be receiving a lot of information and it’s very difficult to remember everything that’s being thrown at you. It’s always hard to remember to ask questions when all you want to do is crawl up in a ball and make it go away. Compile a list of questions and write down the answers. Keep this list of questions and answers in your notebook. Trust me when I tell you that you will refer back to this list. You can find a phenomenal list of general questions and organizational tools from the Livestrong Foundation ( I’m a huge fan of their notebook!

The Squeaky Wheel Gets the Grease: To all my much loved medical professionals, please forgive this statement, but it’s true. Send emails, make phone calls, and follow up. You might have to push office staff to get medical records, you will always need to ask for disc of your scans, and getting information shared between offices can be incredibly frustrating. We were incredibly squeaky about getting all of my information to MD Anderson as quickly as possible, and there were times I felt painfully obnoxious. Who cares? My first day of chemo and radiation began one day short of 5 weeks from my diagnosis, and people were surprised we got in so quickly. It felt like forever, but there’s no treatment that begins fast enough when it comes to the “C” word.

And after all of this, and it feels like a lot, treatment begins, and you realize you’ve barely scratched the surface. The human capacity to endure is simply stunning.

Houston, I think we have a problem.

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

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.

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.

Ok, fine. I’ll go to the doctor.

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

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.

In the beginning…

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

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.