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.
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.