Putting a Personal Face on Cancer, Part 2

by on July 16th, 2011
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Deuteronomy 31:8 The Lord will go before you. He will be with you. He will not leave you or forsake you. Do not fear or be dismayed.

In the winter months of 2008-2009, I began having flu-like symptoms once a month. I would take over the counter medications, and was seemingly good to go until it would happen again a month later. By December of 2008, I was beginning to wonder if something was seriously wrong with me. I had no health insurance. Mike had torn the sciatic nerve in an accident at work, and had a permanent disability. Mike was never going back to work. I was a substitute teacher for the Ottumwa Community School District, but substitutes have no insurance benefits because it’s considered part time work.

My mother went to Hospice in February of 2009, and while she was there, my cousin, Darryl, told me there was something called Iowa Care, and that I should go to DHS and apply for it. By now, both Darryl and I were concerned I had colon cancer. We had lost a cousin, Sue Ann Wagner, to colon cancer in October.

I was so sick by this time, I could barely put one foot in front of the other most days, but I felt like my place was with my mother. In March I asked Dr. Ellison to keep me going with prescription medicines even though he said I should probably be admitted to a hospital. He was also my mother’s physician, and he knew the personal struggles my family was going through too.

Meanwhile, I received confirmation that I was eligible for Iowa Care. It went into effect the first of April, thank heavens, because on April 26th, when I tried to get up out of bed, I was doubled over with cramps. Nothing relieved it. By 2:00 P.M. that afternoon I was being transported to University of Iowa Hospitals from Ottumwa Regional Health Care in an ambulance.

Sue Ann may have saved my life, because, when Dr. Hoshi, at Univ. of Iowa Hospitals came in to see me later that day, he was already positive I had colon cancer from looking at a copy of my cat scan Ottumwa Regional had forwarded to him. I told Dr. Hoshi, “My first cousin, Sue Ann, passed away in October from stage 3 colon cancer. I have a seven year old son I have hopes I’ll finish raising. Do what you think you have to do to save my life.” Thirteen days later I had major reconstructive surgery. Half of my colon was removed, more than half of the rest of my intestinal tract on the right side, and an important little flap between the colon and the large bowel where the tumor was located that helps all of us control our bowels. The cancer had eaten through the colon wall and was found in four lymph nodes adjacent to the tumor.

I struggled with the decision to let Hunter come to Iowa City to see me. While I talked to him daily on the phone, hearing me and seeing my flat on my back in a hospital bed were a far cry from each other. He had to have a few bad memories about the hospital, and what he had gone through. He was also the one child in a hundred-thousand, who, when he was told his mother had cancer, had a serious handle on what that meant. I began to wonder if it might not be better for him to see that I was still the same mother he knew and loved, and that I was ready to do what it took to survive this.

Mike had to take him out of school for a day, but almost immediately, I knew it was a good choice for both of us. For Hunter, I crawled out of bed, and walked the halls. For Hunter, I drank the chicken broth, the liquid Jello water, the 7-up.

Hunter felt important, pushing buttons on my bed, guiding my IV pole down the hallway, fluffing my pillow up. People from our church stepped up and made arrangements to get him back and forth to school, kept him over-night. There were probably times he wondered if he had been abandoned, because I was in Iowa City 17 days, but he never whined or complained.

After the surgery, Dr. Hoshi came in and said, “I did a radical surgery. I took more maybe than was necessary but there were a lot of polyps, and after our talk, I removed what I felt was going to give you the best chance to survive this. It’s stage 3 colon cancer.”

Stage 3! That really knocked the air out of me. Stage 3 colon cancer was what Sue Ann had just died from. I nodded my head. I said, “Okay, it sounds like you did what we talked about. I told you I trusted your judgment! I’m okay with the decision you made.” And I was.

I felt around my stomach. “No colostomy bag?” I asked.

“No bag,” he said and smiled. Little did either of us know how hard it was going to be, though. The colon removes the majority of water from your body waste. Dr. Hoshi believed my remaining body parts would learn to make up the difference for the pieces that were missing. That didn’t go as well as we would have liked.

However, I had my life. I had a fighting chance to survive. By the end of the month, I was scheduled with an oncology doctor to discuss chemo. I was told I needed 12 treatments with a chemo cocktail of three drugs. That’s when I learned there are as many chemo drugs as there are types of cancer.

Dr. Halfdanarsan asked me if I would consider participating in a clinical trial for a fourth drug called ‘cetuximab’ and after some careful deliberation, I said yes. I authorized a test to see if my tumor type would respond to the drug. It did. The next step was a random selection by a computer, and I also made it through that. I was chosen. I decided all systems were saying go, and I was meant to do the clinical trial so I signed on to do it.

The cetuximab caused a terrible skin reaction like the worst case of acne any 16 year old ever had. One of the other three chemo drugs made the insides of my mouth sore, made the soles of my hands and feet react to anything cold. Every time I shampooed my hair it came out in long chunks about as big around as a pencil. This felt like an endurance test and I didn’t know if I was up to it.

First a lady at church, Mary Glosser, approached me about an herbal formula called Ecciac Tea. I appreciated her concern, but I didn’t act on it. Then the manager of U.S. Cellular talked to Mike about Ecciac tea. He told Mike, “If she uses it, I’ll guarantee she won’t lose her hair.” Again, I put his business card under my mouse-pad, and thought, ‘how sweet’ but I went no further with it. Finally, when everything I had eaten or tried to drink for the last couple of weeks felt like drinking or eating broken glass, Cindy Ellis, a friend whose son has also had cancer, Cindy sent Mike home with a quart jar of the tea in a brown paper bag and told Mike to have me try it. The next day, I finally thought, why not?

This was on a Wednesday morning. Within eleven hours of that first dose, I could eat and drink again. By the weekend, when my girlfriend, Sandy Archer, dropped by the house with a bag full of scarves and wigs, my hair had stopped falling out. She said, “I thought by now you would need these, but I see that you don’t.” I thought I would too, but I didn’t. She took them back home.

Nothing helped the diarrhea though. It would start the third day after my chemo and it would last until a day or two before it was time to do it all over again. My oncology team thought I was probably allergic to one of the drugs in the chemo cocktail.

I remember telling my family they had no idea what I was going through, how hard it was to try to eat or drink things I was too sick to want. My nine year old son,Hunter, a cancer survivor himself, walked over to me, put a hand on mine, and said, “You’re right, they don’t know, Mom, but I do! You have to try to eat to keep your strength up.” There stood this little miracle before me, a living testimony to the fact that some people do survive cancer, and a major reason why I needed to give it my best effort to survive. I ate the hated supper.

It was a tough decision to quit chemo by this time. I had signed on for 12 treatments, and in my head, I had to make it across the finish line. However, I was told by my oncology team that in Europe, 6 doses are considered to be enough. I had made it through 8 doses of the twelve. By then I was beginning to wonder if the chemo was going to kill me, the diarrhea was so bad. Suddenly, out of the clear blue, the organizers of the clinical trial, cetuximab, decided they had all the data they needed for the clinical trial I was on. I would be having no more of those treatments. It seemed as if a lot of things were conspiring to tell me something. Finally, I said, “Enough is enough. I’m done!”

This was right before Thanksgiving of 2009. Truthfully, by the time I made the decision to quit chemo, I was so sick and defeated, I didn’t really know if I was going to survive it. Then, one Tuesday afternoon around the middle of February I realized I was hungry. I actually wanted to eat supper. Food hadn’t tasted that good for a very long time, almost eighteen months. I had simply been going through the motions of eating because I knew I couldn’t pull through if I didn’t. The next day, and the next, I was hungry again. I began to believe I was going to survive. It was in February, the afternoon tea parties began to be a treat to me again. Hunter and I had never stopped them, and even when I was most sick, it was usually the best meal I could handle all day. Now, they were really a pleasure again.

While I was going through the chemo, ladies from our church asked us what they could do to help. When I didn’t come up with anything specific enough, they offered to bring meals. I said okay to one meal every two weeks, and Joanna Smith decided that wasn’t enough. For weeks, on Thursday evenings after I had my Wednesday chemo, somebody from our church would show up at our front door with a complete meal in a box, and the next evening and the next, sometimes 5 or 6 evenings in a row. It was a humbling and beautiful gift. I knew our family was on a prayer list at church, and there were prayer warriors praying for us.

I believe surviving cancer is a culmination of many things, beginning with a fantastic oncology team, continuing with the love and support of family and friends. Blend this with a positive and ‘I can do this’ attitude, which I didn’t always have, but which my son, Marcus told me I’d better develop, and sprinkle it with the liberal uplifting prayers from the ‘family of God’ and you may just have a winning recipe for surviving cancer.

I’m twenty-seven months cancer free, and my oncology team tells me most cancers usually reoccur in the first twenty-four months if they are going to, so I’m optimistic about our future, Hunter’s and mine.

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