Even now, to say or write down the words “colorectal cancer” seems unreal. On one hand, there is an incredible disconnect between me and those words. On the other hand, those words have completely changed my life.
March is Colorectal Cancer Awareness Month. I was diagnosed with Colorectal Cancer in August 2015, but I had been sick long before that day.
According to what I have read, sometimes symptoms are developing for years before an official diagnosis. I remember having a tooth removed in March of 2012. I could not eat solid foods for about a month, and a remember telling my husband, Pepper, that the tooth problem has made my stomach feel better! At that time, my stomach would burn, and I would have issues with constipation and diarrhea. I would eat something and would have pain that I thought was gas. I knew something was going on, but I chalked a lot of it up to stress and eating on the run.
That November, I had a DVT (deep vein thrombosis) blood clot and spent a week at OCH Regional Medical Center. I asked the doctor, while there, if we could talk about the fact that my stomach was hurting too. He said, “one problem at a time.”
When I was released from the hospital, Dr. Katrina Poe did a blood test to check for H. Pylori. I tested positive and took two weeks of pretty harsh antibiotics that was supposed to knock it out. It may have helped for a time, but it did not solve the issue. I was still recuperating from the blood clot and we had a lot going on personally. It was an interesting time.
In the meantime, I stopped eating anything too spicy. I noticed walking on the treadmill seemed to ease a few symptoms, and I got to the point I was walking up to an hour in the morning and an hour in the evening, just to feel a little better. I would run to the restroom, and usually made it before having an accident. The diarrhea was starting to get out of control, but I quickly learned that if I didn’t eat much, I would not have a problem. If I had to go to Jackson or Tupelo for something, I would not eat breakfast or lunch just to make it home.
I have ALWAYS had a big issue with public restrooms, but during this time, I quickly got over it! I had convinced myself that if I would lose weight and exercise, I would feel better. And I did lose weight. Over the course of five years, I lost 100 pounds. Don’t get me wrong, I needed to lose the weight and was very proud of the accomplishment. It was a result of hard work and monitoring what I ate, but that wasn’t the whole story. My stomach was still bothering me and the diarrhea was out of control.
I can’t exactly remember when I started having pain. I began working as a church secretary at First Baptist Church of Eupora in September 2013. I thought setting at a desk all day contributed to that problem. I didn’t think much of it at first. Eventually, I would be hurting so much that I would go home and immediately lay down on the bed and watch television, laying on a pillow to give a little pressure to my stomachache and with a heating pad on my behind for the pain in my tailbone. I would take two Advil and two Tylenol every four hours to help ease the pain (I am not saying that was a smart move, I am just saying that’s what I did. Please do not try this at home!) I would even wake up in the middle of the night –2 or 3 in the morning – and take Advil and Tylenol and curl up on the couch. There was a particular position I could lay in to help me get back to sleep.
I was exhausted all of the time. The pain was zapping my energy. I remember going with Pepper and my mother-in-law to the Passion Play performance in Kosciusko on Good Friday 2015. I was in a lot of pain and realized that I need to take Advil and Tylenol every four hours – not just when the pain hits—so I can get ahead of the pain.
I did not go to the doctor for this problem until June 2015. A lot of factors went into play at that time, but I had just finished a week of working to get ready for my cousin’s wedding. I had not eaten much the entire weekend. I was exhausted.
Dr. Poe suggested seeing a specialist. It took a month to book an appointment and another month to set up the upper and lower GI exam. It was good, because it took my insurance that long to wrap their heads around a 43-year-old woman getting these exams. Insurance is happy to approve someone 50 and over, but not so much someone in their 40s, even if they are symptomatic!
The test was scheduled for July 31, 2015 at the Digestive Health Center in Tupelo. I was nervous. Pepper was nervous. All I could think about was “KNOCK ME OUT! KNOCK ME OUT! I do not want to be awake for this!”
When I did wake up, I heard the doctor telling Pepper about a tumor and it was his job to “keep my spirits up” – and boy did he take that seriously! They could not do the lower GI due to a large mass. The instrument could not get around it. I was told to go home and eat soft foods and liquids as much as possible. We were told it was most likely malignant, due to the size, but would hear an official word in a day or two. Then I would meet with a cancer doctor to make plans for treatment.
Pepper and I went back to the hotel stunned! I was thinking a broken tailbone and Irritable Bowel Syndrome. It was what I was hoping for. The symptoms are very similar.
We just wanted to sit with the news a little bit. Let it sink in. We had a lot dropped in our lap and it took a little time to process it. I remember that I wasn’t upset, just stunned.
Then the phone started ringing. My parents called. A cancer diagnosis is one of the hardest things in the world to tell people. Especially people you care about. Especially over the phone.
That August was the longest month of my life. After the colonoscopy, we were given the official results and an appointment with Dr. Julian Hill, who has offices in Tupelo and Starkville. Pepper and I saw him in Starkville, which was an incredible blessing for us.
My inner reporter had tons of questions for him and, of course, I brought a notebook to write everything down. I am a big believer in having someone go to the doctor with you, especially when you may be receiving bad news. Sometimes, it takes two people to hear everything. This was one of those appointments. The mass was five centimeters and was very low. Dr. Hill explained the course of treatment designed to shrink the tumor and set up an appointment to have a port placed in my chest to aid in chemotherapy.
We meet with Dr. Raymond Orgler in Tupelo and a few days later, had the port put in as outpatient surgery.
Insurance dictated a lot of what we would do and where we would go. At this point, there was a possibility of surgery after this round of chemo and radiation. I want to use St. Dominic’s Hospital in Jackson and a particular surgeon there. My insurance would not cover it. One of many battles we would have over treatment.
In September, 25 rounds of daily radiation (except weekends) began as well as carrying “the bag.” I carried the 5FU medicine for continuous flow chemo in a bag around my neck every day for five days. I had the weekends off. That continued for five weeks.
While actually having radiation wasn’t that bad, prepping for it and those final few weeks were really rough. For a woman who hasn’t had children, this was a total assault to my sense of modesty and decorum. I literally had to “go somewhere else” in my mind. I sang praise songs. I prayed and thanked God for the medicine and the people who had to do this type of work. I kept telling myself “this is just something I have to do.” And I sang some more.
And Pepper Sisson did some singing and dancing. His way of “keeping my spirits up” would drive any normal person insane! He sang Hee Haw songs at the top of his lungs all day and night. He knows I am not a big fan, but thought he was being funny. Don’t get me wrong, he was funny. But the music! UGH!
After round one of chemo, I had to wait six weeks to let the medicine work in my system. Nothing tasted good. Smells would throw me into being nauseated. I was tired, but during the first part of it, I just kept going. I went to work as much as I could. I went to Walmart if I needed something. I can’t say that I felt great, but I kept thinking I needed to do things while I could. It could get worse.
I flipped “smooth out” for a few minutes when I was told the treatment didn’t shrink the tumor enough and I would have to have surgery to not only remove the tumor, but two lymph nodes, and re-route my intestines to be able to eliminate from a stoma. I would wear a bag for the rest of my life.
The flip out at Dr. Orgler’s office didn’t last too long. It also signified that I was at a different stage of cancer than we first thought. Having lymph node involvement meant that it could travel. I was no longer “possibly a Stage 1 or 2, but at least a Stage 3.” They said they would not know for sure until the tumor was removed and analyzed at a lab.
The day before surgery, I was in the hotel room, drinking that HORRIBLE stuff given to patients before a colonoscopy, and I was receiving sweet messages from friends and family by text and Facebook.
One of the things I learned early on, was that Pepper would go to great lengths to keep my “spirits up,” but also that this was all part of my journey. I didn’t like it, but that didn’t mean I would not have to go through it. God “had this” and He knew what would happen next. And just like during radiation, I had to learn to put the emotion and the “freak out” factor aside and keep moving forward. Having an emotional meltdown was not going to help anything and only make the people who were helping me upset. That’s not to say I didn’t do my share of crying over it, but focusing on getting better every day and being fully convinced that God was going to work it out, helped me deal with it.
A friend of mine sent a Facebook message saying she would be praying for me, and she was so sorry about the bag. I messaged her back to say the bag is a blessing. It was saving my life. I told her I was happy to do whatever it takes to live a long life with Pepper Sisson.
During surgery, Dr. Orgler felt a “golf-ball sized” tumor in my liver. This was Stage 4. Apparently, livers are difficult organs and only surgeons specializing in livers can operate on them. Surgery was on November 11, 2015. I started round two of chemotherapy in late January 2016. This chemo was designed to shrink the tumor in my liver. This one was much different. I sat in “the chemo chair” all day on a Monday and carried my “bag” of 5FU continuous flow chemo for two days. Then I was off for two weeks. I did that for six months.
My dad, J.B. Woods, usually went with me for my chemo appointments and drove me every day to chemo and radiation during the first round. We tried a few breakfast places in Starkville, before settling on Denny’s as our favorite. We had breakfast every morning before going to sit for chemo all day. At first, he would sit in the truck and read or run errands. As it got hotter, he would come back to the chemo room with me. Dad stayed with me on the long days and Pepper would go with me on the short days.
It is amazing how many people we met during this experience. There were people dad knew from his career with Kansas City Southern Railroad. There were people who were on the same appointment schedule as me, so we became friends while waiting in the lobby.
The second round of chemo had “pre-treats” and I do not know what was in that shot other than Benadryl, but I spent most of that long day sleeping. I am sure my snoring was discussed at length when I left. When I would wake up, the people I met earlier in the day had already had their treatments, and a new group of people were in the recliners around me. You make a lot of friends that way, and everyone had a different story. Everyone had a different experience and a different reaction to chemo. My hair was thinner, but I didn’t lose all of it. I gained five to ten pounds every time I went to round two of chemo, instead of losing weight, like many people assume. “Pre-treats” are steroid shots to prevent a person from having a reaction to the chemo. I didn’t do a lot of vomiting thanks to the “pre-treats,” but was nauseated. It was an unsettled feeling.
On July 31, 2016, my PET scan was negative. No cancer no where! Dr. Hill said it was great to give good news now and then! The next month, I started round three of chemo. This time is was preventative chemotherapy. I was GLAD to do it! It was one of the medicines from the previous chemo treatment once a month for another six months. That ended in January 2017. A second PET scan was also negative.
Now I am on an every three months schedule with my oncologist. After six months, we will do a CT scan and if that is good, another PET scan next January. It takes five years of negative PET scans to be considered totally clear, but I am off to a good start.
During chemo, you eat what you can, when you can. It is hard to eat totally healthy. But now I can eat solid foods, but I am supposed to reduce the amount of red meat and deli meat I consume. I am supposed to reduce stress and increase the amount of fruits and vegetables I eat. Exercise will be a great thing when I can.
One of my chemo side effects has been a DVT blood clot. It has also made the arthritis in my knee much worse, so I am trying to figure out how to get that exercise in without hurting my leg.
There are a lot of side effects that anyone going through chemo and radiation may have to deal with. I call it “getting over the cure!” Some days are easier than others.
According to the research, “Colorectal cancer is the fourth most commonly occurring cancer in the United States and nearly five percent of Americans will develop colorectal cancer in their lifetime.” But it is a very preventable and curable disease if caught early.
If you are having symptoms, no matter what your age, but especially if you are 50+, get a colonoscopy. Don’t self-diagnose like I did.
They say to be particularly diligent in getting screened if you have a family history of colon or colorectal cancer, but I can tell you, no one in my family has had cancer. Pepper’s family has had a good bit, but no one has had colon or colorectal. Dr. Hill said that was the case with most of his patients. It can be completely random. Don’t think that because you have no family history of colon or colorectal cancer that you will not get it. If you have symptoms, GO TO THE DOCTOR!
A few other preventable tips:
- Avoid foods that are high in fat.
- Eat plenty of vegetables and fruit. Eat other high fiber foods.
- Exercise regularly and maintain a normal body weight.
- Smoke and drink only in moderation, but I would advise to cut that out completely for a healthy lifestyle.
Pepper and I have been incredibly blessed. During this whole year and a half ordeal, we have been surrounded by friends and family who have been so supportive. The Stewart Community and the Bellefontaine Community each held benefit fundraisers for us last year that have been a big help in getting life back to normal (whatever that is!). And my church families –my work church, my personal church and friends and family in many surrounding churches – have been amazing. I do not know how people go through something this life-altering without a church family. I am blessed to have several.
May and her family were one of many people to visit me in the hospital after surgery. She asked me what God was teaching me through this experience. I have had a little time to think about it, and here’s what I think.
- No laughing or crying right after surgery, especially an abdomen surgery! Everything hurts too much!
- This journey is not just about me. I am just the one walking it. There are many, many others who are affected by my actions, my attitude and how I handle myself in difficult situations. A lot more people are watching than you realize.
- This experience has challenged my personal “ICKY” level and I am still working on not being too easily “grossed out.”
- For those of use who would never survive in the medical field, I firmly appreciate those who can handle other people’s “ICK” levels.
- Be as kind to medical staff as possible. They deal with a LOT of cranky people.
- “God’s got this” is not just a mindset for my cancer journey, but my life’s journey. He cares about the small stuff and the big stuff.
- Cancer –all types—is difficult and expensive. Just the daily drive to Starkville and the extra stuff you have to buy at Walmart in isles you never dreamed you would walk down, is pricey and not covered by insurance. When someone says they are taking treatments for cancer, it is an emotional and financial burden.
- There are more people going through cancer treatments than I realized. There is a lot of suffering. There is a great need for volunteers in every community to help families in your church and in your community with cancer. Even just committing to prepare a healthy meal once a month can be a big deal for a family. I had so much help, but it is a long road. A little help goes a long way.
- And even when you are sick and so weak you can’t do anything physically, pray. Praying for all of the people who are much sicker than you in the chemo room or for those taking care of you at home, gives you that opportunity to do something for others that is personal and special. Prayer is the most important thing you can do for someone. It is the truest expression of love.
- Do NOT self-diagnose on the internet. See a doctor! You are not a doctor! The internet does not replace a doctor!
- Family is EVERYTHING! God put these people in your life for a reason! My mom made soup day after day week after week. Who else is going to do that kind of thing for you? Just your family.
- Marry the right person! You want someone who will take care of you, help you put saran wrap on your port site so you can get a shower and sing and dance to cheer you up, even if it gets on your last nerve! What an incredible blessing to have a spouse that prays for you, helps and entertains you. One that is brave enough to walk through a cancer journey with you as opposed to running the other way in fear. Maybe that should be lesson one!
This story was featured in the March 9, 2017 edition of The Winona Times.