**Click here to start reading from the beginning of my cancer journey.**
**Click here to read about my experience with chemotherapy.**
If you’re like me, that you probably think that once a cancer patient has been diagnosed, has had surgery to remove the cancer, has undergone the appropriate amount of chemotherapy, and has been declared “cancer free”, their “cancer” is over. That’s what I used to think.
But that’s not the case. For colon cancer, you have to be “disease free” for 5 years to be declared “cured”. A lot can happen in that five years…it did for me.
Timeline reference: I had been diagnosed with cancer in March 2012. I finished chemo and had my post-chemo PET scan and colonoscopy in October 2012.
I had a CT scan in January 2013. Everything looked fine in my colon. No masses found. Hallelujah! First hurdle cleared!
During the spring of 2013, I started to get another stomachache that wouldn’t go away. It was similar to the one I had experienced in the winter of 2012, so I was definitely worried. But I didn’t want to bother anyone or make a big deal about it, so I didn’t tell anyone…not even my husband. After “dealing” with it for about 6 weeks, I finally told Hubby, who made me call the oncologist immediately. It was about time for another CT scan anyways, so we went ahead and did it a month early.
That was July of 2013. Everything looked fine in my colon. No masses found according to the CT scan. But they did see a mass of “something” in my right hip, about the size of my husband’s index finger. The oncologist told me not to worry about it, but it may have been easier to tell a kangaroo not to hop. But, I did my best to live life like it was “nothing”. Since we hadn’t found what was causing the pain in my abdomen, we decided I needed to have a a small bowel study and a colonoscopy, as well as an MRI.
At this point, colonoscopies are old hat for me so it was no big deal…and it really was no big deal because it came back “clean” – they didn’t find anything in my colon, although the scope caused my intense pain.
So, in August 2013, we did an exploratory laparoscopic surgery in my abdomen, hoping to be able to identify my pain. We got good news and bad news from that surgery. The good news was that when they looked for the mass in my hip, it was gone! That bad news was that we didn’t find anything…nothing that would be causing me pain.
I don’t know what the surgeon did, but whatever it was, it made me feel better. Stomach pain GONE!! Praise God!
So, we went through our “normal” checkups. CT scan in November 2013 and October 2014. Colonoscopy in November 2014. Everything seemed to be going well. We were going to coast to 5 years cancer free and be cured…NO PROBLEMS!!!
In December 2015, I realized that I was starting to gain weight and be very constipated. Well, not constipated because I pooped every day, sometimes multiple times a day. But I was getting very bloated and distended. Of course, I’m stubborn and didn’t tell anyone for about 6 weeks. Finally in February 2016, when my stomach REALLY started to hurt, I told Hubby, who sent me to my primary care doctor (I had just switched to a new doctor).
We tried some “natural” remedies (warm prune juice with fiber mixed in, miralax, high fiber diet, etc), but nothing seemed to eliminate the constipation or the pain. But, he could feel something right where I told him it was hurting. So, he sent me for a colonoscopy.
Like I said before, colonoscopies are no big deal to me. The cleanse isn’t too bad…except this one. I followed the same routine I had followed for the previous 4 scopes. But this time, the cleanse didn’t work! I drank 14 days worth of miralax in 64 ounces of gaterade and took the ducolax…and nothing happened! Well, my stomach got HUGE! I looked like I did when I was about 7 months pregnant with Bubba! My belly button actually “popped” out. I hurt. But I couldn’t poop. It was about 7pm, so I called the on-call surgeon, who happened to be the one who was doing my scope the next morning. His remedy – DRINK MORE! Drink water with miralax. “It has to work eventually.” Ugh.
Well, it did eventually work…and it worked all night! But the scope the next morning came back “clean”. We didn’t find anything. But when I woke up from that scope – worse pain than labor! (And I had a natural labor with no medications.) THIS WAS AWFUL! The surgeon was convinced my pain was caused by scar tissue from previous surgeries which wouldn’t show up with a scope or any imaging. The only was to diagnose scar tissue is through another laparoscopic surgery in my abdomen, which he didn’t recommend as it could cause more scar tissue.
So, I went to the oncologist who ordered a CT scan. Clean. Nothing, just an “remarkable amount” of stool in my colon. So we did a small bowel study…clean. We ordered a PET scan (ugh)…it came back clean (yay!). Thankfully, my oncologist was not satisfied with these results. While he thought the pain could be caused by scar tissue, he wanted to rule out all other possibilities. If it was scar tissue, then we may have to remove my colon. Say WHAT!?!
So, he sent me to a specialist. This guy does clinical trials and develops new medications. He is up on the latest research and is a good buddy of my oncologist. So, we went…THAT DAY! He looked at my records, listened to me talk, looked at and felt my stomach, and sent me away with medicine to try.
So, in March 2016, I tried this medicine. I went to the specialist just about every week. I had an MRI of my abdomen and pelvis…”remarkable amount” of stool, even though I should have been “cleaned out”. So they put me on a “white” diet – no whole grains, lots of junk, limited vegetables, lots of processed food…YUCK! My stomach (not abdomen) hurt so bad it was “remarkable”, but the white diet didn’t help. I had an abdominal x-ray after that “white diet” and mini cleanse to see if it would clear my colon – it didn’t!
So, as the specialist said, I “earned” another colonoscopy; this time the specialist wanted to do it himself. Since my last colonoscopy cleanse didn’t go well, we decided to do a “double cleanse with a split prep”. Yep…it was just as awful as it sounds, but it worked! I was “cleansed” for the scope.
This scope, in April 2016, showed that I had a “torturous” colon…very twisted and kinked. The kinks were RIGHT WHERE I WAS HURTING! The bad news was that there was nothing to do to solve this problem. We could manage it with medication and diet. The good news was that I got to keep my colon! We wouldn’t need to remove it (at least not right now)!
So, in May 2016, I really started watching what I ate. We eliminated processed food from my diet. But my pain didn’t go away. I took the medication(s) religiously, but my pain was still there. We tried different medications and different dosages, but no success.
In July of 2016, the specialist ordered a stomach emptying test. Came back normal. So it seemed that I would need to try a more liquid diet to be able to get the food to go through my colon easier.
Thankfully, God’s timing is ALWAYS perfect. In August 2016, my friend introduced me to Shakeology and portion control through the 21 Day Fix portion container system. This has been a life saver for me…or rather a colon saver. I have been able to get good nutrition, variety in my diet, and proper portion control by following this system. I also have yummy options that actually make my stomach/colon feel GOOD and have other positive effects in my life (better sleep, more energy, etc).
In January 2017, I knew I need to start seeing a new GI specialist. My surgeon had moved away so he couldn’t do my colonoscopies anymore. I felt like the research specialist was just that…a research specialist. He had helped me, but I needed a doctor that I could call and see when I was having digestive issues. I knew I was coming up on my 5 year cancer free mark so I would be “released” from my oncologist…plus, he’s just that. He’s an oncologist…cancer doctor…not a GI doctor.
So, my oncologist referred me to at GI he had worked with previously. I went to this appointment with the intentions of establishing a relationship with a new doctor. I left completely discouraged. I realized I will always have this label of “cancer patient” even after I hit 5 years. (Read about my thoughts on this appointment here.) I will always be an anomaly. Doctors will never really know how to treat me. My next appointment with this GI doctor went better. Thankfully, she didn’t schedule any other tests and is willing to see me “as needed” and for routine colonoscopies.
So, on March 27, 2017, I was officially declared CURED!!! I AM A CANCER SURVIVOR!!!
I will always have to deal with the neuropathy in my hands/arms and feet/legs, but it’s not as often now so it’s definitely manageable. I will always have digestive issues. I will never be able to go more than 5 years between colonoscopies. But, I’m alive. I got to see my son go to Kindergarten and in May 2017, I will see him graduate from Kindergarten. I have learned a lot through these past 5 years, but I’ll save that for another post. 😉
**Click here read about what I learned as a cancer patient and SURVIVOR!**