November 3, 2020. I had a long-overdue colonoscopy, expecting everything would be OK. My previous colonoscopy took place 15 years earlier. As I recall, I had two polyps removed during that procedure (polyps being the culprits who turn into a cancerous mass). I remember being instructed to have a colonoscopy in 10 years, although these days, if one has polyps, the procedure is recommended five years later. Although I’ve kept up with an annual mammogram, I slacked off when it came to scheduling a colonoscopy. Even though my paternal grandfather had had colon cancer and my mom’s family is riddled with various types of cancer, I’m one of the majority of people who thought, “It won’t happen to me.”
I woke up in the recovery area, with the friend who drove me standing by my side. The nurse recapped what the procedures (I also had an endoscopy) had uncovered: esophagitis, gastritis and colon cancer. I was still under the influence of the anesthetic, so I took the news calmly, maintaining the attitude, “I’ll be fine.” It hit me a bit later: COLON CANCER.
A few days later, I had my follow-up appointment with Dr. Rhody Fawaz, who had performed the procedures. It was just the two of us in the exam room. He explained the findings and asked if I had a preference for a surgeon. I said, “Well, I have a question about that.” Dr. Fawaz rose from across the room (social distancing was in place), stood in front of me, looked me in the eye and said, “You can ask anything you want. You can cry, you can yell. You are the patient, and this is your time.”
Never had I visited a doctor with such a great ‘bedside manner.’ He put me at ease and answered all my questions. I left feeling absolutely resolute that I was going to be OK.
Surgery to remove portion of colon
On December 11, I had 10 inches of my colon removed at Baptist Integris. I won’t soft-soap this — it’s not an easy recovery. I spent six nights in the hospital and was NPO (“nothing by mouth”) for three days as they had to give me IV nutrition.
I spent the next several weeks recovering at my mother’s house in Oklahoma City, where my sister Gayle Williams and my mom Betty Broadus took great care of me. The first two weeks, there was quite a bit of pain in the incision area (14 staples down the gut is not pleasant). Once the staples were removed, I thought the pain would end, but no, suddenly the nerves around the colon where it was resected came to life, so I had another week or so of pain.
I came home to Apache on Feb. 7. Fortunately, a great friend (Tye Sechrist) stayed at my house and took care of my horses while I was in OKC. He will stay on until I’m finished with chemo, as there are days when it’s hard to function.
My treatment consists of 12 infusions, one every two weeks. Over a four-hour period, the infusion consists of anti-nausea medications, steroids and two chemo drugs. In addition, I wear a pump for 46 hours that infuses another drug.
The drug regimen is FOLFOX, and although it is said to be well-tolerated by most, I’m one of the few who doesn’t handle it well. The side effects that I deal with are diarrhea, fatigue, lack of energy and neuropathy. When I’m exposed to cold, my hands and feet tingle and sting — sort of like a swarm of little black ants biting me. I can’t reach into the refrigerator, peel an orange, or even wash my hands until the water warms up. Note: a lot of retail stores only have cold water, so I carry hand sanitizer with me.
The worst part of the neuropathy is how it affects my nose and throat. Imagine someone shooting jalapeno oil up you nostrils — burning and tingling. Fortunately it doesn’t last long because I sneeze pretty quickly. I’ve learned that a bit of Mentholatum or Vicks prevents the neuropathy.
The throat is another matter. Drinking or eating anything cold causes my throat to freeze up, so that it feels like I can’t swallow or breathe. Even room temperature water can set this off. It’s almost impossible to stay hydrated when you can only drink hot beverages. I’ve had enough hot chocolate and hot tea to last a lifetime. I’m still searching for other options, as this throat issue lasts for more than a week.
The third round of chemo really hit me hard — I was dehydrated and had no energy. At one point, I worried about going into sepsis. The chemo was killing off all the nutrients in my body — I call it chemo poisoning. I don’t know if that is such a thing, but that’s what I call it. We had to postpone treatment four, and instead, I had two infusions of fluids and one of potassium. The drug regimen will be reduced by 20 percent. We’ll see if that mitigates the side effects a bit.
No longer in control
So how has cancer and chemotherapy changed me?
I feel like I no longer have control of my life, which is a difficult pill to swallow for someone who is self-sufficient and always in charge of what she does on a daily basis. Now, I’d say my oncologist and the chemo drugs are in control of my life. It’s hard to plan ahead for anything, since I don’t know how I’ll respond to the latest round of chemo.
In addition to my cancer diagnosis, the year 2020 brought other heart-rending situations. My mother had a life-changing stroke, and my father passed away. Add my cancer diagnosis to the life experiences of 2020, and you’ll see that stress played a big role in my life.
Previously, I would say my mindset was that of a dreamer, always hoping for the best and trying to be a positive force. I would push my own feelings to the side in order to make others feel comfortable. I was the peacemaker, the diplomat.
Today, I am a realist. I express my feelings and think I am communicating more effectively because of that. It’s OK if someone doesn’t’ agree with what I’m saying — I still have the right to be expressive.
I’ve gained a real sense of perspective — what’s important and what isn’t. I’m living more day-to-day, working four or six hours a day to get back into a routine. I tire easily, so I pace myself. I’m now one of the “little old ladies” who zip around the store in an electric cart when shopping. My balance is a bit off, so I might have to resort to a cane for a while.
I also have been able to separate those who are true friends versus those who are merely people I know. It’s an eye-opening experience to see how people treat you once you have a cancer diagnosis. In a way, it’s very isolating. The impact of social media has replaced sending a get well card or making a phone call to check in. Now, people seem to express their concern/compassion by “liking” and “commenting” on Facebook posts. I admit I’m guilty of it. For me, it’s time to start sending cards again.
Don’t sweat the small stuff
I don’t sweat the small stuff anymore. It’s not the end of the world if I step in horse manure while I’m wearing good shoes. So what if I drop a jar of jelly on the floor, creating a messy conglomeration of glass and jelly? It can be cleaned up.
One reality I faced during the third round of chemo, when I was so weak and dehydrated, was particularly gut-wrenching. I laid in bed and for the first time since my diagnosis, thought, “I could die from this.” That’s a hard statement to write, to think about and to accept. But it is a reality.
Another reality: I have a pulmonary embolism (PE in medical lingo, blood clot to the general population) in my left lung. This was discovered when I had my second set of CT scans prior to having a chemo port surgically implanted in my chest. I knew something was wrong — I felt an odd pain in my lower back during the CT scan. I’m now on a blood thinner to prevent other blood clots from forming, and I’m told that my body will absorb the existing one. I’ve actually been more concerned about the PE than the cancer diagnosis.
Overall, I’ve maintained a positive attitude throughout this journey (which will last until my final chemo infusion at the end of June, with some side effects lingering for a while). I’m grateful for the friends and family who continue to show such compassion. I’m grateful for the prayers on my behalf.
Speaking of prayers, I’m asking everyone to pray for any child that is going through chemotherapy. I realize that all chemo regimens are different, but still, I’d hate to think that a child is experiencing the side effects that I’ve had. It’s not pleasant. Keep the kids in your prayers.
Colonoscopy would have caught cancer early
The reality is that if I had scheduled a colonoscopy when I was due for one, I wouldn’t be undergoing chemotherapy now. So please, if you are due for a colonoscopy and keep putting it off, get is scheduled ASAP. For those under 50 who have a history of cancer in the family, talk to your healthcare provider about getting a colonoscopy. I know four men under 40 who battled colon cancer. It’s not necessarily an “old folks” condition.
Colon cancer doesn’t generally show any symptoms until it is the late stages, so catching it early is critical.
One thing I didn’t know: colon cancer isn’t staged until after surgery, when the tumor has been removed. My tumor was rated T4aN1M0, putting it in the Stage 3 category. The T4a refers to the extent of the tumor — it has grown through the visceral peritoneum but has not reached other organs. N1 means the cancer had spread to one to three nearby lymph nodes (in my case, only one). M0 means the cancer had not spread to distant sites.
Another couple of months delay and I would no doubt have entered Stage 4, meaning the cancer would have metastasized to other organs.
Again, schedule your colonoscopy ASAP. As great as the staff at Lawton’s Cancer Center are, I don’t want to see my friends in the chemo room!
- Janet E. Williams is the director of media relations at Cameron University. She is currently undergoing chemotherapy for colon cancer at the Cancer Centers of Southwest Oklahoma in Lawton.