By Mayo Clinic staff
Editor's note: This is the fourth in a series of four excerpts from Chapter Two: Inside Out, "Cris Ross's journey from healthcare exec to patient — and back again," from 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.
Rehab
After two weeks, I was transferred to the inpatient rehabilitative medicine unit. The program was goal-oriented — intended to get me home and equip me for life as is, and perhaps to improve my function. Emblematic of the whole thing were morning rounds, where the entire team would come to each room. A facilitator would read out the goals for the day and what was needed to move me toward being ready for discharge. Everyone would chime in as appropriate.
The first few days were challenging. On day two, I developed a second ileus in the middle of the night. Images were taken, and the nurse on duty said I needed another nasogastric tube. I liked this nurse and felt he was very competent, but I asked whether he had placed a nasogastric tube recently (since this was a physical rehab unit, not a gastrointestinal unit). He told me he used to do them frequently in a previous healthcare institution but admitted that it had been a couple of years. He suggested I think about it while he went to reread the Mayo protocol to make sure he was doing it the Mayo way. I agreed to have it done. Partway through I had a somewhat painful sensation and felt I couldn't breathe. I was able to choke out "I think it's gone into my lung," and he promptly removed it and apologized. Recalling my earlier patient self-advocacy around nasogastric tubes, I said, "No offense, I think you're a great nurse, but could we possibly find someone from a GI floor who does this all the time?" To his credit, he did exactly what I asked for. A nurse arrived at about 3:30 a.m. from a GI unit elsewhere in the hospital and placed the tube with plenty of gagging and vomiting but without any additional drama.
When I went to my first physical therapy session in a big, sun-filled, gym-like room with all kinds of specialty equipment, I wanted to heal but wasn't sure how I could. I arrived there in a surgical gown with three drains hanging from my belly and clipped to my hospital gown, an IV in my arm, a nasogastric tube taped to my face, and a catheter and bag strapped to the walker I was using. They put me into a leg brace and asked me to take 20, then 30, then 50 steps. How can I do this? I looked around the room and saw some of my fellow patients: people with severe trauma injuries, who'd had strokes, or were recovering from brain and spinal surgeries. All of us were just doing what we could, as hard as we could. Many people were in much worse shape than I was. I just put trust in the process and committed to bring my best to my own healing.
"When I went to my first physical therapy session in a big, sun-filled, gym-like room with all kinds of specialty equipment, I wanted to heal but wasn't sure how I could."
I ordered some running shorts from Amazon and had them delivered to my room, so I could do my work in workout clothes rather than a hospital gown. I went to two classes a day, just putting one foot in front of the other. In between I watched the oddly deserted summer Olympic Games in Tokyo, delayed one year because of the pandemic. Somehow I found it really reassuring to watch world-class athletes even though I was still a paralyzed, limp, catheterized mess.
For the next two weeks I had physical therapy and occupational therapy twice a day. After a few days one drain was removed, then another. Because of a small setback I had another drain placed just above my left buttock, which hurt. In physical therapy I learned to use a leg brace, how to use crutches and a wheelchair, and how to go up and down stairs. But my leg remained paralyzed. In occupational therapy they tried many things to wake up my hand — arm and hand exercises, electric stimulation, vibration. I remember the bizarre, almost nightmarish experience of staring at my hand, trying as hard as I could to get it to move, with nothing happening.
Near the end of my rehabilitation, I still had no muscle function in my left leg and hand. I was fitted for a custom leg brace made of white plastic extending from my butt to my foot — I looked like a half-dressed Star Wars stormtrooper — that locked my leg into a fully extended position. I wore a hand brace to keep my hand from just flopping around. But I now could walk up and down stairs. I could use crutches to go long distances. I could speed around in a wheelchair. We mocked up a little space in the bathroom the dimensions of my shower at home and rehearsed how I was going to get in and out without falling. I learned how to use a computer keyboard with one hand. All my drains, tubes and catheters had been removed. I had begun to emerge as an independent human being after a month in the hospital being dependent on others for even the most basic functions.
"I had begun to emerge as an independent human being after a month in the hospital being dependent on others for even the most basic functions."
On a sunny Saturday morning, Aug. 13, I was discharged from the hospital. Hannah (my older daughter) had flown in from Seattle, and she and Emily (my younger daughter) carried all my bags to the waiting car. The nurse who managed my discharge accepted a hug in appreciation for the care I had received. I had been looking for milestones and incentives to help keep me motivated. As the discharge date became more certain, my goal was to attend a big outdoor Irish fair with my daughters, an event we had loved visiting together before. On Sunday, my daughters and I drove to the fair and parked with my newly issued handicapped parking tag. They pushed me in a wheelchair as we watched Irish dancing, checked out the shops in the tents, and ate Irish food. We toasted to life together as we listened to an Irish punk band. Looking back, I can see that I was barely functional — in a wheelchair, wearing leg and hand braces, experiencing pain, and unable to do much because of my limited stamina. But on that sunny Sunday with my daughters, I finally celebrated being cancer-free, being alive and taking a few steps down the road to health. I could not work on my healing if I could not envision a life with joy. On that day I felt true joy being outside in the sunshine, feeling as though I had escaped from being devoured by cancer, able to imagine a joyful life even as I acknowledged that I might never walk normally again or regain function in my hand.
Continuing to Heal
Over the next nine months, I continued outpatient physical and occupational therapy at a great facility in Minneapolis. After three months, my left hand began to move a tiny bit, then more, and then with some strength. In mid-December, after therapists applied things like electrical stimulation, the leg muscles in the front of my left thigh, the quadriceps, slowly began to function again. By February I had enough leg muscle function that I graduated to a flexible leg brace and walking poles. More muscles in my leg returned to function. By March I could walk without a leg brace or walking poles. What an improvement from the fear that I might be permanently disabled!
At this writing, I still don't have any feeling in my left thumb or forefinger, but my hand works well enough. I have very limited feeling in my leg, though I see some signs of potential further recovery, and I've learned how to walk miles in a day even though I have a limp. My digestive system doesn't always work right with a couple of feet of colon missing and lots of scar tissue. But I'm finding new ways to be increasingly active around my limitations.
"My digestive system doesn't always work right with a couple of feet of colon missing and lots of scar tissue. But I'm finding new ways to be increasingly active around my limitations."
On my one-year anniversary after surgery I received confirmation that I was cancer-free. I had a colonoscopy, a CT scan of my chest and abdomen, and a blood test that detects residual tumor DNA in my bloodstream and can predict whether I might develop cancer again. All were clear. As we are finishing the writing of this book in winter 2024, I have now had seven regularly scheduled exams, and I remain cancer-free.
Writing this chapter wasn't easy, and I imagine it might be uninteresting to some and hard to read for others. I'm not someone who usually shares these kinds of details. But I am sharing them here with the intent of benefiting people who are facing serious illness and helping the people who care for them. Serious illness can be terrifying, messy and dehumanizing. I hope my story is an example of how it is possible to persevere, speak up for yourself, make decisions and find wells of resilience.
The inescapable truth is that you can't decide whether you are going to have a serious illness. You can live a healthy life, but that doesn't prevent you from getting sick. I was a 30-year vegetarian with no lifestyle or genetic risks for rectal cancer, and I got it twice.
When everything else seems out of control, the only thing you can control is how you respond to your situation.
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:
- Cancer rehabilitation: Helping people with cancer maintain and restore well-being
- Regaining sexual health after cancer treatment
Read other articles in this series:
The post Rehab and continuing to heal: Cris Ross’ story, part 4 appeared first on Mayo Clinic Comprehensive Cancer Center Blog.