It was a busy summer at work in 2009. I was extremely busy and traveling a lot for my job. It was no surprise to me that I was feeling very fatigued and run down. I was having a great deal of low back pain, which had been dismissed as muscle pull or stress. I had decided to see a doctor for my fatigue and stress in the hopes of being advised to take a few days and catch up on much needed rest. Blood samples were taken and then taken again. It seems I was anemic. My hemoglobin was very low. That explained the fatigue. I was admitted to the hospital because my hemoglobin continued to drop and they wanted to determine where I was bleeding from. That night I prepped for my first colonoscopy at age 35. Never once, even with the extensive history of Colorectal Cancer in my family, did I expect this would be the cause. My grandfather and at least 3 of his siblings were all diagnosed with and passed away from Colon Cancer.
I woke up and as soon as I saw the doctor I knew it was bad. He had such a look of despair and heartbreak in his eyes. It was rectal cancer. My first thoughts were how would I survive? Is surviving even possible? There is really no words to describe what it feels like to hear you have cancer. I think back on it now and it reminds me of a game of jacks. Remember how you would toss the ball so high and try to scoop up all the jacks before the ball dropped? Cancer was the ball and all the little pieces of my life, of me as a young woman, were the jacks. I wanted to have all of those little pieces of my life before cancer ruined it.
I started treatment right away, I had tumor shrinking that needed to be done. I opted to do 6 weeks of chemo and radiation first. My tumor was very low and very large, at the time of diagnosis all my physicians thought I would ultimately end up with a permanent colostomy bag. There was no way that could happen. I could not imagine my life with that stupid bag! Treatment wasn’t easy. The chemo made me sick. I went to the oncologist office Monday and was infused for 5 hours with Oxalyplatin. When that was done, they hooked me up with an extremely fashionable fanny back that contained the 5-FU that would be constantly pushed through my veins 24 hours a day until I was disconnected Friday! 5-FU? Are you kidding, so I figured it meant 5 days of feeling really f***ed up! I couldn’t eat, I couldn’t touch anything cold, and I lost the feeling in my hands and feet. I just kept trying to tell myself I needed to do this so I wouldn’t need the bag. I also found out that I tested positive for a mismatched mutated gene, I had Lynch Syndrome. That explains why I was diagnosed at such a young age. Radiation, for me, was harder then chemo. My skin was so irritated and raw. The pain was intense. I learned that sitting in a warm bath every night would help.
I had a great response to my treatment. My surgeon at Sloan Kettering was very impressed. I chose Sloan because I heard they did surgical procedures that prevented a colostomy bag. My surgeon advised that he believed he could put me back together again, but he couldn’t guarantee that my quality of life would be what it should. He was afraid this procedure, a j-pouch, would leave me with urgency,frequency and incontinence issues. He thought I would end up wasting my life sitting at home so I could be close to the bathroom. I needed to choose, to bag or not to bag, that was the question. Guess what? I bagged! 6 hours later, I left the operating room a completely different woman, minus several items I went in with. Due to the Lynch, it was decided I should also have a total hysterectomy, since my risk of uterine and ovarian cancer were greater higher than the normal average.
So here I am almost three years post diagnosis and going into my second year of being cancer free. I don’t always agree with that term, because even when it is gone, I personally don’t ever think I will be free. Having cancer is a life altering event. My advice to anyone going through their own cancer journey, is easy. A cancer diagnosis takes hold of everything in your life. People are telling you where to go, when to be there, what to eat and what to think. Own your feelings, they are the only thing that truly belongs to you! If you are mad, be mad! If you want to cry, then cry! Scream if it makes you feel better! The bag has left me with a permanent reminder of my cancer. There is not one day that I can forget. So, I got tired of their only being scars or the bag to remind me. I took control again and on Saturday February 4, 2012, World Cancer day, I got a survivor blue ribbon tattoo! My terms cancer…..my terms! This reminder was made permanent by me!
Get your Rear in Gear is an amazing way to spread awareness for this treatable disease. Get screened. For me in means get moving folks! Do what needs to be done to save your life. Don’t be ashamed, talk about your body and all the things it tries to tell you at the first sign of not feeling well. Also know your family history and discuss it with your doctors. The ass you save may be your own.
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