Dealing with my cancer: Surgery, a tough recovery, and the magic words

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The light snapped on at 4 a.m. sharp in my room at Community Hospital North, waking me from a groggy sleep. A medical technician wheeled a cart over to my bed and reached for my arm.

It was that time again: the doctor wanted another blood sample.

I forced a smile, but I was feeling sore, cranky and disoriented. Five days earlier, a surgeon cut me open to remove my cancerous bladder and to build a new, interior bladder (an “orthotopic neobladder”) out of my intestines.

It was a major operation lasting six hours that rearranged my plumbing and made me feel scrambled. Now, five tubes protruded from my body. I was covered with gauze and tape. My mind was loopy from pain pills, which also caused me to take three or four naps a day.

Both of my arms were bruised from all the needle jabs. But it was time for yet another stick. “Do we really need to do this now?” I said, as the technician began inspecting my veins.

“The doctor wants to see the lab results first thing in the morning,” she said, pulling a tourniquet tight around my upper arm.

The past few months have given me a new perspective on health care. Normally, I’m a journalist, interviewing surgeons, hospital presidents and policymakers.

But now, I was a vulnerable, confused, sick patient. Last fall, I was diagnosed with Stage 2 bladder cancer after I noticed blood in my urine. My doctor ordered me to the hospital, where a CT scan and blood tests revealed a large, bloody tumor in my bladder.

I was referred to an oncology urologist, Dr. Michael Large, who removed the tumor during an outpatient procedure in October. A week later, he told me the cancer had probably invaded nearby muscles. I would need chemotherapy and surgery, he said, if I wanted to survive more than a couple of years.

I was a good patient and did what he said, after doing some outside research and talking it over with my wife. I went through four aggressive rounds of chemo last fall, which caused nausea, fatigue and hair loss.

Now I was facing the toughest test: getting cut open, stitched back together and trying to heal.

“Just keep fighting,” my friends kept telling me. “Kick cancer’s butt.”

Dr. Large told me that beating cancer would be a full-time job for a while. “Just focus on getting through this period,” he said.

Silently, I told myself I would be back at work within two weeks.

I was wrong. I spent six days in the hospital, trying to regain my strength, get back on my feet and eat solid foods again. The doctors and nurses seemed oddly focused on my basic bodily functions.

“You can’t go home until you pass gas,” a nurse said.

“Hey, no problem,” I said. “Don’t go anywhere for the next two minutes.”

Finally, I was discharged with a thick list of instructions. Nurses visited me twice a week at home to help me deal with all the tubes and medicines, and to change my dressings. I said a silent prayer of thanks every time they rang the doorbell, because no matter how many times I read the discharge instructions, I felt overwhelmed. The nurses at the hospital and the home health care service were unfailingly patient, helpful and kind.
I comforted myself with the knowledge that untold thousands of people had survived this type of surgery.

For nearly three weeks, my body was in an uproar. I had trouble walking, eating, sleeping and thinking. On one particularly bad morning, I vomited, wet my pants and tripped on a living-room rug—all within an hour.

And my surgeon kept my spirits up. “The surgery could not have gone better,” he told me the morning after the operation. I nodded groggily and thanked him. “The rest is up to you,” he said. “Keep active. Keep positive. Follow the instructions.”

In a series of visits to his office over the next few weeks, he removed my tubes, allowing me to walk around without discomfort. The recovery was going well, he said, even if it felt rough sometimes, he said. All my functions were within the normal range.

Finally, earlier this week, his office said the words I had been longing to hear: “cancer free.” I let out a sigh of relief, then texted my family and my editors, sharing the good news. On Wednesday, I returned to work, exactly a month after taking a leave.

My hair is slowly growing back. My energy level is improving by the day. My appetite is fine.

Over the weeks, I learned a few lessons as a patient that I hope will make me a better health care reporter:

— Always try to get a patient's perspective into a story. That's where so much of the human drama takes place. It's not a brand-new insight; I've interviewed patients with maladies from diabetes to Alzheimer's disease. It's never easy, but they are usually willing to share their story.

— Never downplay a disease or medical condition. For the patient, it's the most important thing going on in his or her life right now.

— No matter how much you think you know about a health issue, be open to more points of view. Medicine is ever-changing and ever-complicated.

But the most important lesson I learned as a patient: the healing process takes time. It will probably be a few more months before I feel like my old self, taking morning runs and looking forward to long weekend hikes.

For now, I promise not to complain about small inconveniences and setbacks in life. I’ll say a word of thanks for the surgeons and nurses—and even the technicians who wake up patients to jab them with a needle.

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