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Way Back Machine Activate: The scan.


Waiting to get my CT scan.


For my first round of chemotherapy--six sparkly infusions given over twelve weeks--the goal was to shrink the tumors and measure the results in a CT scan. In that time, I had good days and really bad days, but my body showed steady signs of improvement. For example, my bowel dysfunctions grew appreciably less intense than the horror show they had put me through for many months.


Still, though I felt hopeful, I had apprehensions about having the machine peer into me. I looked for meanings in the technicians' and doctors' every word and glance. Nothing immediately alarming...at the hospital. But later, while lounging at home, I got a message on my phone from Providence. They wanted to confirm my appointment with my surgeon.


Umm...appointment?


Why did I need to see my surgeon again? She said my tumors were inoperable.


It turned out someone had let the cat out of the bag regarding my scan results. I called my nurse navigator (the angel who coordinates my health care team) and found out they were actually quite good. My tumors had shrunk by 25-50 percent. BUT the shrinkage led to a perforation in my colon. This meant they wanted me to have surgery to divert my intestines to a new hole that my surgeon would place in my abdomen. In other words, another dreaded C word--a COLOSTOMY.


They said if I didn't get the surgery, my stool could enter my blood stream and I could die of sepsis. Right now, my tumor situation was relatively stable, so we were in good position to stabilize the perforation issue. This was the worst good news/bad news joke ever. Right at the start, I had told my doctors I would not submit to a colostomy.


"Can I wait a month to see if I can heal this?" I asked Dr. Hayman, my surgeon. She took a deep breath. "You could, but you would most likely go septic. You would have to get a colostomy anyway, the surgery would be way worse and you could die." "YOU could die," I shot back. Dr. Hayman clenched her jaw. "Yeeessss, you're right." But she thought I was way more likely to kick it before she did if I refused to get the colostomy.


"It is just a butt on the front," she said. "I think they look like really cute little rosebuds." Yeah, okay, I thought. We'll see.


So we were back in horror show mode. This was my worst nightmare--it shook me even more than my cancer diagnosis. I felt so out of control and angry that my health care team had made plans without consulting me--had demoted me from being the quarterback to the ball. I really wanted a chance to heal this perforation instead of being slammed with major surgery. In the end though, all of my experts, Western-influenced and alternative, encouraged me to do the surgery.


Visual journal. My depiction of the pain in my colon and trying to interpret the message.

I consulted with my surgeon on Friday. I had to confirm the surgery by 8 a.m. the following Monday. If I agreed, I would go in for my little rosebud on Tuesday. It was all happening so fast. My only attempt to control this spiral toward the operating table was to not agree to everything I was told right away and make my health care team wait until I confirmed the procedure.


Spoiler alert...I decided to move forward with it. Note to self: Focus on what you want, NOT on what you don't want.


The next Tuesday, I headed into the unknown.

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