Cancer 2.0: Cris Ross’ story, part 3

By Cris Ross

Editor's note: This is the third 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.

Cancer 2.0

In January 2021, I had some odd pelvic pain. Something seemed wrong. I contacted Thor to see if we could accelerate my next colonoscopy and CT scan. In late January my colonoscopy was clear, but there was a suspicious spot in my pelvis that needed to be checked out. I had a full-body PET (positron emission tomography) scan, which is incredibly sensitive at detecting cancerous tissue. A few days later I had a needle biopsy of the small, suspicious mass in my pelvis.

On February 10, 2021, 699 days after I'd been declared cancer-free, Thor (Thor Halfdanarson, M.D., Mayo Clinic medical oncologist) told me I had cancer again.

Damn.

Scans showed a tumor, a little smaller than a ping-pong ball, growing on the outer wall of my colon, tucked into my left pelvis. I was going to have to do it all over again.

Ed (Ed Marx, coauthor of "Diagnosed") and I had set the intention to write this book in late 2020. I remember calling him to say our book just got more interesting because I had cancer again.

Among other things, it was time to set new goals for this journey. The goals I had established and the gifts I'd sought during my first cancer journey were very inward-focused — how to be better at my job, and how to use this experience to remind me of the importance of living with joy. I really don't have regrets about looking for those gifts, and they were still resonant for me as I began my second journey. Maybe it's because now I had creeping doubts about my mortality, or maybe it's because I gained an ability to live outside myself a little bit more, but through my second cancer journey I really felt called to use my experience to make other people's serious health journeys a little easier.

I was thinking about these intentions as my second journey through cancer began. First, I learned pretty quickly that if it was a privilege to be treated for cancer at Mayo Clinic once, the second time was an even greater privilege. Recurrent rectal cancers are really challenging. In many places, chemotherapy and radiation therapy are provided to slow the growth of the cancer but do not offer great hopes of cure. But a second surgery is complicated, mainly because the patient's anatomy is pretty messed up from the first surgery, making the subsequent surgery complex to plan and execute. Mayo was willing to take it on. So the band got back together for a do-over. I had appointments with all of the same physicians who had treated me earlier — Thor, Michael (Michael Haddock, M.D., Mayo Clinic radiation oncologist), Scott (Scott Kelley, M.D., Mayo Clinic colon and rectal surgeon) — and by the time I arrived they had already discussed my case at a tumor board.

A second thing that became clear this time was that I was better equipped to be more actively engaged in my care. For example, during Cancer 1.0, I had learned that a temporary ostomy wasn't fun, so I definitely wanted to avoid having a permanent one. Somehow I convinced myself that the second surgery might not involve removal of more of my colon. However, at a joint appointment with Thor and Scott I received the bad news that because the tumor was attached to the outside of my colon, I would need to have more of that organ removed. Thor, Scott, and both of their nurses sat quietly with me for a very long time while I processed my disappointment, waiting for me to ask questions but not making me move on until I was ready. Their silent witnessing was a remarkable gift.

I remember zeroing in on that issue: If I had to have more of my gut removed, I really didn't want an ostomy. I was balancing quality of life versus length of life. Scott heard me and made no promises, but I was clear in my mind — if I could avoid having an ostomy, that's what I wanted, even if it marginally increased my chances of another cancer recurrence.

I talked about my ostomy aversion with Ed and one or two very close friends who didn't like my decision and tried to talk me out of it. They wanted me to take the most aggressive pathway I could toward beating cancer. Those conversations helped me understand, viscerally, why people want to take control of their medical situation, and how, why and when people with more advanced cancers may conclude that they are done fighting the disease.

My chemotherapy started in February 2021. It was a different formula this time, something called FOLFIRI, but the duration was the same — another eight rounds over 16 weeks. Midway through chemotherapy, I had another PET scan and an MRI to determine whether the tumor was shrinking or growing and to get specific imaging requested by different members of the surgical team.

After chemo, I had radiation therapy in June and July 2021. For Cancer 2.0, I asked if I was a candidate for proton therapy, rather than photon therapy. A proton beam is more targeted and does less damage to adjacent areas of the body. Michael agreed, and I had 15 rounds of therapy — a session every weekday for three weeks.

Receiving proton beam therapy was even more sci-fi than getting photon therapy. Four large, darkened treatment rooms in the proton beam facility are connected to a single shared giant cyclotron in the bowels of the building that produces a constant stream of protons. I was placed on a tall, movable table, positioned precisely using X-rays, the machinery making Star Wars–appropriate sounds. While I'd been partially clothed during my previous cancer treatment, this time I was naked from the chest down except for a small towel over my loins. When it was my turn for the beam, I got zapped for a few seconds. During the 30 seconds that it took to reposition me for a second blast from another angle, the beam was switched to one of the adjacent treatment rooms — the cyclotron never rests. Then it came back to me for a second stream of billions of protons smashing into the tumor.

In early July, I began to meet the extended surgical team. In addi­tion to Scott from colorectal surgery, the surgical team also included members from urology, vascular surgery, orthopedics, plastic surgery and radiation oncology. Each described their roles and the risks to me.

On July 14, I had my last radiation treatment. That brought me to my lifetime limit for exposure to radiation therapy. Any more radiation treatments would put me at risk of developing leukemia or another form of cancer due to excess exposure to radiation.

I checked into the hospital for a preliminary vascular surgery to block the left internal iliac artery and vein to avoid excessive bleeding during surgery. That same day I checked directly into Mayo Methodist Hospital and began a colonoscopy prep. The next morning at 7 a.m., the medical transport team collected me and rolled me to the pre-surgical area. All my surgeons came by to visit as I got final prep for surgery. At 8 a.m. I was wheeled into the same operating room where I had been 28 months earlier. A mask was placed over my mouth and nose, and I lost consciousness.

When I emerged from anesthesia after 16 hours of surgery, I had the alarming, dreamy illusion that my arms and legs were being sutured into a large machine and I was being made part of some awful Borg. My eyes were still shut. I felt my abdomen with my hands. I knew that if there was a bag on the right, it was a temporary ostomy; if it was on the left, I would have an ostomy for the rest of my life. I couldn't find the bag, so I asked the nurses where it was. They said I didn't have one because Dr. Kelley had hand-sewn my large intestine back together. I was coherent enough to think, Thank you, Scott. But something was still wrong, because I couldn't feel or move my left leg or left hand. I kept trying to explain this to the nurses with the drunken incoherence of someone just emerging from anesthesia. Eventually I was transported to a hospital room. I had two surgical drains protruding from my abdomen, an IV in my arm, a catheter, an oxygen tube in my nose, the familiar inflatable booties squeezing my legs, and a bed that inflated and deflated to keep me from getting bed sores. The surgical teams came to check on me and explain what had happened during surgery. The urologist explained that the tumor was located very close to the ureter connecting my left kidney to my bladder, and the ureter had been badly damaged from radiation. So they'd constructed a new ureter using tissue from my bladder and rebuilt my bladder.

Orthopedics had responsibility for managing surgery near certain nerves. With the anesthesia having mostly worn off, I finally was able to convey coherently that I couldn't move my left hand or leg. The orthopedic surgeons examined me to check the extent of paralysis in my left leg (I could move my foot just a little) and determine why my left hand could squeeze weakly but otherwise was numb and motionless. The conclusion was that nerves to my leg through my pelvis had been impaired by being moved and compressed during surgery, and then further damaged by radiation therapy delivered to the area of my tumor during the surgery itself. My hand was probably paralyzed because of the way I had been strapped to the table during my 16-hour surgery. Would I recover the use of my leg and arm? Everyone said they hoped so, but it was uncertain.

For the next two weeks I was visited daily by Dr. Kelley or a member of his team. I was really grateful for their visits, even when they occurred at 6 or 7 a.m., because my recovery was much more difficult than the first time. I developed a blood clot in my left arm, which swelled mightily, so I needed to have it tightly wrapped most of the time. And just like after my first surgery, I developed an ileus, when my intestines stopped moving food through them. This time I needed a nasogastric (NG) tube inserted to continually empty my stomach. (It's necessary but extremely unpleasant.) I couldn't eat or drink for 12 days. To be certain I didn't have blood clots in my leg or fluid in my abdomen, I was imaged repeatedly. A third drain was inserted into my abdomen to remove fluid. I was visited frequently by orthopedics and neurology, who checked every day for any reduction in paralysis. Physical therapists helped me stand and walk a few steps with the support of a leg brace — a brave undertaking on their part, as I am 6'5" and towered over them unsteadily. Occupational therapy tried to help me regain motion in my hand.

Through all this I couldn't walk at all, and until I was taught how to stand on my good leg and pivot myself from bed to chair, I had to be moved from place to place with a ceiling crane and a harness. A shower was a 90-minute odyssey managed only with the calm and kind support of medical assistants. To distract and amuse myself, I started to count how many people had seen me naked during this ordeal; I stopped counting when I got to 20. Through all of this, the calmness, empathy and professionalism of the nurses, phlebotomists, medical assistants, techs, physical therapists, occupational therapists and physicians was truly amazing. I felt understood and supported. I was intensely grateful and thanked people constantly.

I was also very grateful for visitors — Ed came to see me on day three, and it was truly joyful to be distracted and to have a chance to talk about this book. Emily came to visit about every other day, driving 160 miles round-trip from St. Paul. Other visitors came as well, and everyone seemed able to ignore the tube up my nose, the IV in my arm, the catheter draining my bladder and the surgical drains taking fluid from my belly.

Near the end of my two-week stay in the colorectal unit, I had a learning experience about advocating for oneself. The nasogastric tube into my stomach had been in place for a few days, but my intestines showed no sign of returning to normal function. Scott had told me that it was very difficult to predict when an ileus would occur and when it would end. He told me of one patient who spent a month in the hospital, going for long walks every day with his wife, waiting for his ileus to end. The nurse who had placed my NG tube was amazingly competent, but it was a bit of an ordeal, and I didn't want to do it a second time. For that reason, I didn't want the tube to come out until it was clear that my intestines had restarted.

On a Sunday morning, a colorectal surgery resident came to tell me it was time to take out the nasogastric tube. Residents have completed medical school and are doctors, but they are still early in their training and are rotating through various specialties learning different fields of medicine. This resident explained to me what a nasogastric tube was (I wanted to say, "Hello — the tube and I have become close friends, since it's been down my throat for about 10 days!") and that it was time to take it out. I asked how they knew I didn't still need it. I expected an answer describing evidence that my ileus had ended, but instead the resident repeated — in the same eighth-grade language — that it was time to take it out. The resident was asking me to suspend judgment, ask no questions and follow orders. But I was having none of it. I said I wanted evidence the ileus had ended before agreeing to have the tube come out. The resident again said only that the tube needed to come out. We repeated that cycle two or three times before I finally said, "OK, we've reached a deadlock here. I want evidence before I agree to have it taken out, and I will decide. I hear you say it's time for it to be removed, but I don't think you're hearing me." The resident seemed flustered and probably felt like a failure for not getting the result that Dr. Kelley, the supervising physician, had asked them to accomplish. I said I would be willing to talk more if the resident could answer my questions, but without answers I felt done discussing it. The tube stayed in place.

The next day, Monday, Dr. Kelley came by on rounds. "I heard you and my resident had a conversation about removing your NG tube."

"Yup."

He chuckled. "We’ll take it out when you're ready,” he said. “But here's what I think would show you don't need it anymore." We could test it by periodically stopping the tube and letting me drink some water, then measuring how much came out of the tube. It all made perfect sense to me. A few days later, I said I thought the tube could come out.

There's never anything wrong about speaking up for yourself and making sure your questions are answered. Sometimes it might not feel good, though. Even though this resident was about the age of my daughters and did not seem terribly experienced with the issue at hand or fully confident in patient communications, I still felt powerless as I lay in bed, barely able to manage my own body. But I felt I needed to advocate for myself and trust my ability to understand the logic and the data in the situation and express my own judgment about the conclusions.

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:

• When cancer returns: How to cope with cancer recurrence
• Emotional recovery after cancer treatment

Read other articles in this series:

• Diagnosed with colorectal cancer: Cris Ross' story, part 1
• Becoming a colorectal cancer patient: Cris Ross' story, part 2