Becoming a colorectal cancer patient: Cris Ross’ story, part 2

By Cris Ross

Editor's note: This is the second in a series of four excerpts from "Inside Out: Cris Ross's journey from healthcare exec to patient — and back again," chapter two of the Mayo Clinic Press book "Diagnosed: An Insider's Guide for Your Healthcare Journey," by Cris Ross and Ed Marx. Cris Ross is chief information officer at Mayo Clinic. 100% of all author royalties from the sale of every book benefit important medical research at Mayo Clinic Comprehensive Cancer Center.

Becoming a Cancer Patient

With my work assignments passed to others, and my heart and head as clear as I could make them, I stepped into being a cancer patient. I was ready.

The first step was chemotherapy. It's a powerful treatment that I hope we can someday make obsolete with other therapies. It is unpleasant. But, true to my desire to learn from my cancer, I sought to learn how chemotherapy had been invented. In World War I, when poisonous mustard gas was used in battle, bone marrow and lymph nodes were depleted in men exposed to the gas. Researchers tried to determine if nitrogen mustard gas variants could treat cancers by killing cancer cells but not people. More than two decades later, research carried out prior to World War II led to additional chemotherapies. Just after the war, Babe Ruth was an early chemotherapy patient, though his cancer was too advanced, and his treatment was unsuccessful.

New forms of chemotherapy have emerged since then, but a nitrogen mustard variant is still used as part of a multidrug chemotherapy for Hodgkin lymphoma.

Different chemotherapies have different names. Mine was called FOLFOX, which is a combination of folinic acid (FOL), fluorouracil (F) and oxaliplatin (OX). A different but widely used chemotherapy for adult and childhood cancers, doxorubicin, is nicknamed "Red Devil."

Here's how it worked. Every two weeks I checked into an outpatient infusion center, where one of the amazingly empathetic and capable nurses would insert a special needle into my port, a small rubbery bulb that had earlier been inserted surgically under the skin in my chest. They taped the needle and tubes to my chest, always apologizing for how the tape would rip out hair when it was removed. I was hooked up to bags containing cocktails of chemotherapy and anti-nausea drugs that over the course of about two and a half hours were pumped through the port into a vein leading directly into my heart.

When the bags were empty, they gave me a small green satchel into which they put a new bag of drugs and a little pump, which they connected to my chest tubes. I would drive myself home with the bag over my shoulder and receive an ongoing dose for the next day and a half. Mostly I just felt sick for three to five days. The drugs made food taste weird and awful. I was tired, but sleep was sometimes hard. When the bag was empty, I would don a mask and medical gloves, disconnect the tubes, inject drugs to prevent blood clots into my port tubing, peel off the tape on my chest, and pull the needle out of the port. Anne-Marie did it for me the first time and taught me how to do it for myself. It was always satisfying to wrap up and throw away all the leftovers of chemotherapy and wash away the taste and smell with a long shower. Then I'd get down to the business of recovering from the chemo.

I had two weeks between chemo sessions and could function pretty well in my off weeks. I could exercise, do things that were enjoyable, be optimistic, and envision life beyond cancer. On one particularly mem­orable good weekend, my daughter Emily and I made a pilgrimage to a favorite place — the virgin forest and headwaters of the Mississippi River. We hiked, canoed and read books around the fireplace on a rainy day. It was really easy to forget cancer that weekend. Sometimes joy came easily.

I visited Thor (Thor Halfdanarson, M.D., Mayo Clinic medical oncologist) every other week before my chemotherapy. After four sessions, another MRI showed the tumor was staying the same size or perhaps shrinking. We discussed side effects from chemo and made plans for radiation therapy and surgery.

(A side note: No one wants an oncologist, but if you need one, you want yours to be named Thor. Perhaps he has demigod powers — a guy from Iceland with rugged good looks, a world expert in the treatment of colorectal cancer, but also a very patient listener. I never felt hurried or unheard.)

After eight sessions of chemotherapy over the course of 16 weeks, I graduated to radiation therapy. To ensure that the dose was delivered to the precise location every session, I received two tiny calibration tattoos on my hips that were used to align me with laser guides on the radiation therapy machine. (The two little tats are permanent, but I remain very uncool.) A custom-fitted brace held my legs in place. For the following five weeks, Monday through Friday, I reported to radiation oncology with instructions to drink enough water so that my bladder would be completely full, pressing the small intestine out of the pelvis and away from the field of radiation. I would step into a cubicle, strip to my underwear, put on a gown and wait my turn. I was grateful to be treated with respect, because I felt vulnerable, cold, exposed and sometimes more like a medical object than a person. When I was called, I would hop on a table, where the radiation techs would position me perfectly, and I'd lie as still as I could for about 15 minutes (with a very full bladder) as a photon-spewing arm moved over and around my abdomen. As I lay still, I visualized a stream of photons smashing at the speed of light into the tumor, blasting and killing tumor cells.

At least for me, radiation therapy at first was relatively benign, almost undetectable. Near the end of treatment, the tumor on my colon became scarred and damaged, and that caused problems with the way my colon functioned (an unpleasant harbinger of things to come).

When radiation therapy is complete, it's traditional to ring a ship's bell in the waiting area outside radiation treatment areas. It gives hope to all of us enduring the journey. On December 21, 2018, I rang the bell with Hannah, Emily and Anne-Marie. I was grateful that, in addition to everything else, Dr. Haddock had helped schedule things so that I could finish up my therapy before Christmas. Though I was seeking to live with joy, and at many points during my journey my treatment care team did everything they could to make that possible, I sometimes felt the joy was thrust upon me — even when it was ultimately gratifying.

With chemo and radiation done, I had a gap in treatment. From January through mid-March 2019, I had a period of relative normalcy. I returned to work on a couple of special projects — more for my sake than Mayo's.

The final stage of my journey was surgery to remove my rectum and the tumor that had invaded it, scheduled for March 13, 2019. Before this diagnosis, I had never had surgery, nor had I spent a night in a hospital except as a support when my children were born. I was anxious, so just before surgery I visited my daughter Hannah in Seattle to take my mind off things. We did normal things we like to do together — see weird theater, try new bars, eat street food and visit historical sites. For me, getting away was the perfect preparation for surgery — more joy and distraction. I think it helped Hannah to see me pretty healthy, laughing and talking about things we both like. I returned to Minnesota and, with Anne-Marie's help, reported for surgery at 5:30 a.m. on March 13, my anxiety much lower because I had distracted myself by visiting Hannah and spending the evening before surgery with Anne-Marie.

Surgical prep, at least at Mayo Clinic, is careful, scripted and remarkably quiet and unhurried. I was gowned, my consent and advance directives were reviewed, and pre-surgical medications were administered. The nurses were calm and empathetic as I sat in a hospital bed in the pre-op area. When my time came, I was rolled through the hallways to operating room 83 in Rochester Methodist Hospital.

My surgeon, Scott Kelley (Scott Kelley, M.D., Mayo Clinic colon and rectal surgeon), inspires immediate confidence. He has a boyish, fighter-pilot demeanor that isn't uncommon among surgeons. As I lay on the table mostly naked in a cooled operating suite, staring up at acoustic tiles, lights and ceiling-mounted surgical equipment, he knew exactly when and how to put his hand on my shoulder and tell me they were going to take good care of me.

I woke up in the perioperative recovery area with no sense of the passage of time, though I had been in surgery for about seven hours. I knew I would have a temporary ostomy to reroute the contents of my intestines through a surgical opening in my abdomen into a removable bag on my belly. I would need that for several weeks while my intestines healed. I reached down to feel the bag. I also became aware of inflatable booties rhythmically squeezing my feet to reduce the risk of blood clots. From the recovery room, I was rolled to an elevator and up to my hospital room. I felt alert pretty quickly, but definitely beat up. I met the nursing team, who told me I needed to stand and go for a short walk.

As I mentioned, this was my first surgery. I had a freshly closed incision from sternum to pubic bone with a bag hanging from my belly. I found it nearly inconceivable that I could be walking a few hours after being wide open on a surgical table. But I was in no position to object. With nursing help, I used a walker-type device to shuffle a hundred feet or so. I was also surprised at how little pain I felt.

The following morning the surgical team made rounds. One of the best practices at Mayo Clinic is that samples of diseased tissues are evaluated by pathologists during surgery so that a surgeon knows whether they have fully removed a tumor with clean margins. With that information, the surgeons can either continue the surgery to remove additional diseased tissue or conclude the surgery with confidence that all the cancerous tissue has been safely removed. This helps avoid the need for additional surgery later if positive pathology results are returned after the first procedure. In my case, Scott reported that my tumor had responded "phenomenally" to the chemo and radiation therapy, with lots of dead tumor tissue. There were wide clean margins around the tumor tissue that was removed. Anne-Marie and Emily were with me to hear the news as I was declared cancer-free on March 14, 2019.

Now my attention turned to healing. I tried to walk the hospital floors as if I were training for a marathon, and I sought to return to a seminormal diet. Unfortunately, my body disagreed with me on day three of recovery, and I developed ileus — a condition in which the intestines stop functioning properly. That morning my bout of Exorcist-class vomiting seemed to surprise even the veteran nurse who was caring for me, who I thought had seen everything. A planned five-day hospital stay extended to 10 as my condition eventually stabilized and normalized.

By the end of my stay, I really wanted to go home. I had been declared cancer-free, and I wanted to rush back to my regular life. I returned to work three weeks after my discharge from surgery. Six weeks after my first surgery, I had a second surgery to remove the temporary ostomy, which Scott referred to as "the friend you don't want but need." After a few days in the hospital recovering from the second surgery, I went home again. The post-surgery period was mostly unremarkable. At one point the incision from my second surgery became infected, and I got pretty sick and spent a night in the ER. The next day the nursing team reopened the incision and taught me how to clean and pack the wound with gauze until it slowly healed and closed up again after a few weeks. But that didn't stop me from traveling a few weeks later to a healthcare conference in Helsinki (where I had a minor incident and got to sample medical care in Finland).

Learn more

Learn more about colon and rectal cancer and find a clinical trial at Mayo Clinic.

Join the Colorectal Cancer Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Also, read these articles:

• Chemotherapy nausea and vomiting: Prevention is best defense
• Answers to 4 questions about colorectal cancer treatment and survivorship
• Cancer and mental health: Coping with the burden of your diagnosis

Read other articles in this series:

• Diagnosed with colorectal cancer: Cris Ross’ story, part 1