I was diagnosed in February 2012, my last chemotherapy treatment was August 31st, which surprisingly is the same date, but different year that my dad was diagnosed with Lung Cancer. I have no family history of colon cancer, however I have a history of breast cancer on my dads side as well as my father passing away in 2001 from complications from lung cancer.
In December 2011 I had been treated for severe anemia, to the point I had to have a blood transfusion and iron infusions over the next few months. It’s amazing, I had my infusions in an oncology office and I kept thinking I’m so grateful that I’m here for iron and not chemotherapy like some of the other patients I saw every time I was there. Little did I know that anemia is a sign of colon cancer, but we thought the blood loss was from severe periods and I had an ablation of my uterus in February 2011 and my levels went back up after that. I thought I was cured. We’re now sure I had the cancer then, but just missed the diagnosis.
I remember vividly when I knew something was seriously wrong. It was the day before a trip I had planned with my son. We were flying out for Florida the next day for about 48 hours when the pain hit. Lower left abdominal pain (near my ovary–or so I thought). I was used to having lower abdominal pain in that area as I have a cyst on my left ovary and I’ve dealt with it for years, however it had never been that bad before. I just thought it was time to have it removed, so I ate pain pills our entire trip and made it through. By the time I got home the pain had subsided to a bearable level and I once again put off making a doctor’s appointment as I knew what the pain was and I didn’t want surgery right now.
That weekend the pain hit me so hard I was doubled over and could not function. Still refusing to acknowledge I needed to go to the doctor, Tony, my boyfriend (now fiancée) tricked me. He got me in the car on a ruse of something else and took me to my family doctor. While we were there she felt a mass in my lower left abdomen as did I. She sent me immediately for a CAT scan. Before I even left the hospital, she called me at the hospital to tell me they had found a 2.5 cm mass in my descending colon it appeared and she was referring me to a surgeon asap. She didn’t pull any punches with me that day, she told me things that it could be but the one thing that she did say that I remember was that we couldn’t rule out the possibility of it being cancer! Wow, I had just turned 39 years old, and although my boys are almost grown, I couldn’t help but to think about them and how this was going to impact them and my boyfriend.
Off to the first surgeon, I’m in his office and he’s gone over my scan results etc. All he is concerned about is cutting it out. He could have cared less about my scar, possibly having a stoma, or recovery time. He was just very crass and I felt not a good fit for me. I left his office and got in the car with Tony and just felt lost. Tony said, if your not happy with him we’re not using him, I didn’t like him either. I went straight back into his office and told him I would not be using his services and informed his office staff not to go through any more work on my behalf. He absolutely was not touching me. I called my family doctor right away and told her you have to find me another surgeon and while we’re at it, lets go with a different hospital too. They called me back almost immediately with Dr. Shedd out of Columbus Regional Hospital. I saw him the very next day. My doctor had called him personally and asked for a personal favor to work me in, as she thought my case was urgent and needed immediate attention.
I saw Dr. Shedd and immediately felt right at home. He answered my endless questions and was concerned about everything that I was. He said the first step was the colonoscopy, then we would have a better idea of what we were dealing with, until then he would say with no family history or high risk factors if he was a betting man his money would be on it NOT being cancer. Man I should have bet that man some money! Did the colonoscopy (no one should EVER have to do prep like that) and waited for the results. I got the call while I was shopping in Wal-Mart from Dr. Shedd himself. It was cancer! He wanted to do surgery immediately.
From the day of the pain to my surgery day was a little over two weeks. A whirlwind of time that went by all too fast and slow at the same time. The surgery comes and goes. What should have been a three to four hour surgery turned into a seven hour marathon by two doctors. They worked diligently to ensure I didn’t have a stoma. I was able to be re-sectioned (good news) As the mass had pushed against my ureter and killed my left kidney, they wanted to remove everything as one unit and my initial four inch incision just kept getting larger, to what I have today, an eight inch or so scar, mid line on my abdomen. They also removed 31 lymph nodes and some tissue on my back muscle wall that looked weird. Next hurdle to cross was the staging. I had done my research and remember distinctly thinking as long as its not stage IV, I’m good. I can beat this. I get to Dr. Shedds office a week later and he gives me the staging. The mass had grown outward from my colon and had pushed against my ureter and killed my left kidney, 3 of 31 lymph nodes had cancer cells, the tissue removed from the back wall of my abdomen had cancer cells as well as my ureter. I was a stage IV. It was said…I knew what I was dealing with now, a 10-15% survival rate, not great odds for a girl whose never really been lucky. Since surgery I have had numerous tests, each of which I stress over for days ahead of time. Every test since surgery I’ve passed with the all clear, hopefully it’ll continue to stay that way.
I had to endure six months of chemotherapy treatments, after I was healed from my surgery. What most people don’t know is that with colon cancer chemotherapy you don’t just go in and get your chemo and leave, you get to set in a chair all day while you get a combination of chemotherapy treatments, then you get to go home for 46 hours with a pack of chemotherapy drugs attached to you through your central port, then return and have the pack removed. Two weeks later you get to do it all over again. The first few treatments I had someone take me (like they recommend). I also had done so much research and read everything that was given to me. If I was going to die, I was going out informed!!! It took me three treatments or so to finally stop feeling sorry for myself.
I had every possible symptom I had read about and basically had confined myself to home and bed. The boys and Tony were great and supported me completely as they didn’t know I was fighting a mental demon more than a physical one. Finally after the third treatment I had had enough. I was home alone (very rare since the surgery) and my foster dog had to go outside. I had not walked him since surgery and since chemo started I had so much joint pain I could barely move. I got up and walked the dog and fell promptly on my ass when I got outside on our driveway. Thunder (my foster malamute) licked my face and was like, come on get up. He helped me up and we proceeded with our walk. I realized after walking him that I actually felt like going further and my joints weren’t hurting so bad. I told Tony when he got home and he was like “you know your killing yourself, which is a shame, your a young vibrant woman who still has so much to offer, it was killing him and the boys to see me withdraw and basically give up before I had even fought.” I decided then and there he was right (shhhhh.. don’t tell him I said that).
I took myself to my next chemotherapy appointment and actually enjoyed myself with the nurses and the pharmacist. I was still able to drive (one of my favorite things to do actually as its me time, I can scream and sing as loud as I want) and I didn’t feel guilty that someone had to entertain themselves for six hours while I was getting treatments or that they had to adjust work schedules so they could take me. Not once did my sons or Tony complain about all the hours spent with me during surgery, or while I was laid up in bed or treatments or doctors appointments, but you can’t go from being a single strong woman to having to depend on other people so easily. I had allowed myself to fall quickly into a dependent spot and I didn’t like what I was allowing this disease to make me. I’m a fighter, I always have been, its time to fight this disease for all I’m worth.
I had a great support system that basically supported me, but allowed me to work it out for myself. My loving boyfriend Tony, who asked me to become his wife toward the end of my treatment. It was so hard on him watching me struggle with this. There were many times that I pushed him away, but he hung right in there every step of the way. Working countless hours to hold the fort up while I was unable to work. It was his way of taking the money pressure off of me and then being there whenever I even hinted I may need someone. He went through a near death accident many years ago, he should not have survived and I seriously think he was kept here to help me get through this. I don’t think I would have the same outcome without all his support.
My two boys who waited on me anytime I was not well or even thought I wasn’t well during my treatment. They also constantly were trying to lighten my mood anytime I let the cancer beast get a hold of me. My personal trainer Lydia, who never gave up on me and adjusted my workouts according to my energy levels. Who called me constantly making sure I was coming in to get my workouts in to increase my chances or surviving. She’s the same person who has talked me into running a mini marathon this May and continues to push me physically.
The challenges I faced early on were mainly mental. I had to decide for myself that this diagnosis was NOT going to define me or rule my life; it was just something else that had to be dealt with, like grocery shopping or bills. I was very, very, fortunate to have kept my hair during my chemotherapy, however I did get a cold sensitivity and could not drink cold drinks or foods. Yes, during summer, yuck…ever had warm water when it’s hot? I also developed neuropathy in my hands and feet so it’s very difficult to do fine motor tasks. I’m still coping with that as it hasn’t gotten any better. I’ve quit going to the grocery store as I just cant get things out of the buggy onto the belt without using both hands, it frustrates me, so Tony takes that on for me.
I also stress obsessively over every test or scan, its getting better with each one but thank goodness my family just works through it, as they already know. I’m still not able to work, as most of my work involves typing and lots of reading. My fine motor skills aren’t where they need to be yet to be proficient like I was and the chemotherapy has damaged my eyes so now my vision requires glasses, we’re hoping that’s temporary. The added expenses are still being dealt with slowly but surely, while trying to get two sons raised, but I’m alive!
I have some words of wisdom for others fighting this fight. Don’t let everything that you read and learn get you down. Take yourself as you are. Your own individual case and don’t put off going to the doctor early if you think there is a problem, or even if you think you know what the problem is. Colon cancer is something that can be caught early and treated easily if caught in the beginning stages. Don’t let yourself kill you before you’ve started your fight.
To me, “Get Your Rear in Gear” means exactly what it says…if I hadn’t decided to get my rear in gear and move and be my own advocate, I would have never gotten as far with this beast as I have. You have to keep moving either medically or physically. Everything you can do to increase your chances of winning you need to be doing it. Stop letting yourself hold back your healing and recovery. Stage IV Colon cancer is NOT a death sentence, 10-15% survival rate means people HAVE survived this stage and continue to do so, don’t you want to do everything in your power to be that 10-15%? I know I do.