“My Voice” by Michelle O’Rourke

Michelle O'Rourke - 'Survivor'

Let me start by saying that I am a 35 year old mother, wife, daughter, niece, cousin and friend to some of the most amazing people you will ever meet. After that I am a “survivor” and cancer patient. When I was asked to write this I was given the instructions to be honest and not sugar coat anything and I thought great I am at times brutally honest about what this disease is doing to me to the point that people probably know way more about me than they want to but hey I’m spreading the word, right.

So where to begin, I was diagnosed on May 29th, 2009 with stage 3B Colorectal cancer. Yes that’s right I added in the “rectal”. So many people just say Colon cancer and I understand people don’t like to talk about bowel movements or poop problems so I will warn you if you are one of those people you may not want to read this, but you should. It started a few months before May probably about February. I just wasn’t feeling well and it literally felt like something was blocking me. My stomach hurt. When I was able to go to the bathroom it was thin like a pencil but being a mom to two young boys I ignored my own health like so many of us do and just wrote it off as stress.  Then I started having blood in my stool, so that’s when I decided ok Michelle time to go to the doctor.

I broke the news to my family and friends in the 21st century way. I did it on facebook. I didn’t want to make that phone call over and over again so I blogged it. Were some people upset, yes. I just didn’t want to hear any ones pity. From the start I wanted to stay as positive as possible and to this day I hate when someone says “I’m so sorry”. My answer to them is why you didn’t give me cancer. The hardest person to tell was my 5 year old Aidan. He understands a lot so I knew I could just be honest with him. I told him I had cancer not thinking he had ever heard that word before, boy was I wrong. When I saw how scared he was I asked if he knew what that meant and he said “oh mommy you mean like those people in the commercials that are dying”. I wasn’t ready for that. So I explained that yes but mine was different because it was in my butt. He thought that was hysterical and said “ya theirs is in their lungs because they smoked”. So I thought ok he really pays attention during those commercials. He took it pretty well and he always asks a lot of questions about everything that is going on and I am always honest with him and he respects that. My 2 year old Declan on the other hand is too young to understand this and it hurt me that after surgery I couldn’t pick him up, carry him or even tuck him in at night. The look of disappointment on his face was enough to bring me to tears, and it did many times.

I spent most of the summer doing chemo (Xeloda) and radiation. That was the worst experience I have ever had. The radiation burned me very bad in my southern regions (I will try to keep this pg). I couldn’t walk or go the bathroom without being brought to tears. I asked the nurse if I could have a note to be out of work for the last week of radiation so I could recuperate. She laughed at me and said “Michelle people don’t take off of work for a week because they have cancer, we have been telling you for weeks to slow down and you kept telling us no you could do it”. Then I realized I was doing the same thing I always did I was putting myself second to everyone and everything else even my job. If I wanted to get better I needed to worry about me and not the world around me. So I stopped working and spent some much needed time resting and being with my family.

It was around this time they started explaining the surgery to me and I found out about the “bag”. Because of where the tumor was and also because it was in my lymph nodes they would have to remove everything from my sigmoid colon down including my sphincter. I still remember when my doctor said that word I almost started laughing, in my mind I was saying ha-ha he said sphincter. Then I reminded myself Michelle you are 34 please restrain yourself, he is talking about something very serious. Then I heard him say colostomy and then it wasn’t funny anymore. It was as if someone punched me in the face. It was harder to hear that I was going to have a permanent colostomy then when they told me I had cancer. Why do you ask? I really don’t know the answer to that, is it a vanity thing, maybe, is it because once the cancer is gone I will always have this as a reminder, probably.

Six weeks after chemo and radiation ended, on my 4th wedding anniversary I had my surgery. Along with removing from the sigmoid colon down they also removed both ovaries because of a lesion found on the right one during a ct scan. They both turned out to be benign but better safe than sorry right. I asked the doctor if I could have a refund from having my tubes tied but he didn’t laugh. I guess doctors don’t get my humor. Oh well.  Then 7 days later I was sent home with my new body.

Four weeks after surgery I went for one of my weekly checkups. I told the doctor about the constant drainage from my wound where my butt was sewn up (yes they sew it up never to be seen or heard from again). Also when I had changed my colostomy bag that morning I noticed that stool was coming out of the top of it. She looked and confirmed my worst fear I had somehow lacerated my stoma. How I have no idea. I had it for a month and I broke it! So back in the hospital I went with my broken stoma and weeping butt that turned out to be an infection. Once the infection was gone and they were sure that no stool was leaking into my body they sent me home again with my broken stoma that was now shrunken and just hanging there doing nothing. They also sent me home with a new open wound, they opened up where the drainage was coming from to treat the infection and decided to leave it open and treat it that way.

So once I was home my mom and husband became my nurses changing my dressing on my open wound 3 times a day until they decided to treat me with a wound vac. For those of you that don’t know what that is it is a vacuum that constantly sucks out the bad stuff from my wound (that’s how my 5 year old explains it). It helps to generate and grow good tissue (that’s how my doctor explains it). They also have me doing hyperbaric treatment 2 hours a day, 5 days a week. Yes I lay in a chamber while they pump in pure oxygen, it’s so much fun. This is to help the bad tissue heal. The reason this happened to me is because the radiation broke down my tissue so badly that it was not healthy enough to heal itself when they did the operation.

Shortly after these treatments started I also started chemo, every other week for 3 days at a time. They send me home with a pump that connects to the port in my chest that pumps the good stuff in (again this is how my 5 year old explains it). He tells people that I have cancer but he says it’s ok she’s getting better. Some days I believe him but some days I don’t. Chemo makes me exhausted all the time. It hurts my bones and I can’t touch or drink anything cold it hurts too much. I use gloves to reach into the fridge and freezer. This is from type of chemo I am on. Another side effect is the ringing in my ears. According to the ear nose and throat doctor they sent me to the chemo has caused nerve damage in my ears. Great now I’m going deaf and I poop out of my stomach, thanks cancer you rock!!! I am half way through my 12 cycles of chemo I can’t wait to see what else it has in store for me.

On a more serious note, mentally and physically this is tearing me down. I hear about people all the time that lost their battle with cancer and it is a battle every single day. This scares me because what if I do all of these treatments and it doesn’t work? What if it comes back in two years? What if in 6 months it shows up on a scan somewhere else in my body? This happens to people every day. What makes me any different than these brave people. I am getting the same great treatment they were, I have wonderful doctors that take care of me as I’m sure many of them had. We all have families that love us and take care of us why do I deserve to win a fight that so many others lose? I don’t know the answer to this all I know is that this is the hand that God dealt me. Will I win this fight, I hope so. I need more birthdays, more hugs from my husband and more nights of tucking my sons into bed. Every day to me right now is precious because I know how close I came to not having them but what I want more than anything are just average everyday moments where cancer isn’t always in the back of my mind making me wonder if this is the last time doing whatever it is I am doing at that moment.

Well this is my story, most of it anyway, thank you for letting me share it with you and making me cry…lol!

Remember to listen to your bodies, now go get a colonoscopy!!!!

This entry was posted on Thursday, February 25th, 2010 at 10:59 am and is filed under written word and tagged with Colon Cancer, colorectal cancer, Michelle O'Rourke, Rectal Cancer.