With my next scan only four weeks away, my anxiety is growing with each passing day. Thankfully, I can’t remember the last time I cried all day, so that’s a positive. I am trying to stay in the mind set that there is nothing I can really do to have the results I wish. The holidays were hard on my body. More alcohol than I have drank in the past three years combined, and enough sweets and salts to go along with it. But that was to be expected and I do not feel like I over indulged. I have to constantly remind myself that I have to quit the “blame game”. If my scan results are bad, that is not because I had a larger piece of pie for Christmas, or because I had two glasses of wine with dinner – there was nothing I could do to prevent it. I am starting to truly believe that. I am cleaning up my eating again because I was to stay consistently healthy for a longer period of time than just three month periods.
I’ve decided after this next scan to change up my follow up schedule. When most cancer patients enter the NED (no existing disease) stage, they all have roughly the same schedule. Two to three years having a CT scan and blood test every three months, the following two years it drops to every six, and at that beautiful five year mark it goes to once a year. This is because with each passing year, your chances of reoccurence technically lowers. Of course, every body is different, but overall this seems to be the case. I however would like to do things differently, as I always seem to do. With colon cancer a good indicator that something is changing is when your CEA (carcinoembryonic antigen) levels in your blood are increasing. This isn’t a perfect way to tell if your cancer is back, but it is usually pretty accurate.
Just in case you have no idea what I am talking about – the CEA test measures the amount of a certain protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). A healthy person should have CEA level under 4. A smoker is typically under 6. In the late summer of 2015, after my lung surgery, my CEA level was 4. Fast forward to Spring of 2016, when my cancer was back in my liver and lungs, my CEA level was 44.
At my last check up in October my CEA level was 0.3. Yep – that was a shocker. So this month if my levels have increased a significant amount, then something very well could be going on inside. However if they remain very low, I will feel confident that I am on the right track. So I will switch things up and only get my blood taken in May. If that level is also low then my new CT scan and CEA test will be in July – at the six month mark. If my levels are raised in April then we will scan away. I figure I will save myself the stress, and the radiation, if I push it to the six month mark. I haven’t really been able to unwind and enjoy my life in the NED world because my scan is always looming in the back of my mind. So maybe having it every six months will help with that. I guess we will find out.
Fingers and toes crossed that this scan and blood test is clear!
Last night I walked in the door after being in Vegas for 4 days, and it took me 5 minutes to realize I was in a mood. I felt like I would snap at any minute, and then did on Chris. I was frustrated and annoyed and just put myself to bed. Today I woke up feeling the exact same. Tried to take the dog for a walk, but still couldn’t shake this feeling. After showering Chris asked me to come sit down and talk to him so he could try and figure out what’s wrong. One minute later I was crying, and wasn’t sure why. After a few minutes of tears and trying to assess what was going on in my head I figured it out – In Vegas I was the closest thing to my old self. I haven’t felt that way in almost 3 years.
I laughed and laughed, I got drunk and had a hallway dance party to Mariah Carey – I felt free. People would be looking at me for reasons of their own – maybe I was laughing too loud, or dancing like a fool, or for the first time in a long while, because I actually looked pretty and was walking with confidence. All of these feelings in me I have not felt in the longest time. I blended in as just another girl who is having an amazing time in Vegas. I went to bed at night and only thought about how I can’t believe I didn’t hit on roulette, and what tables I would play in the morning. That was it.
Today all of that is gone and I am back to reality.
I broke. Chris sat there and just watched as I went from tears rolling down my face to a full sobbing mess. He tried to make me feel better and say that everyone feels that way when they get home, that’s why it’s called a vacation. But I hated that response and started yelling through my tears, “It’s not the same, it’s not the same, it’s not the same!” I threw my face in my hands and sat there balling my eyes out and trying to catch my breath. I never realized how much I missed my old self until I saw a glimpse of her again. She was fun, confident, independent, smart, care free and beautiful. This new person I am still trying to wrap my brain around. I am better in many ways but worse in others. I feel like a solider who has gone to war. They have seen so much death and despair. They had to wake up everyday and fight for their life, and may have scars to prove it. Then they come home and just have to try and forget everything that their memory won’t let them. They are forever changed.
My break down was interrupted by Chris’s phone ringing, which was perfect. I told him to take it and went back to blow drying my hair. I’ve become really good at putting the cork back in the bottle and just continuing on with my day.
I have played out this day over and over in my head before. Many nights I would lay in bed trying to fall asleep and fantasize about my doctors saying to me, “Your scan is clear.” I thought last year it was going to happen, and then was crippled by the news that all of my cancer was back. This year I was hesitant. I felt good and I know that I have changed so many things in my diet that are positive, but there was always the chance. Saying I was nervous would be an understatement. I was an emotional wreck in the days leading up to my results appointment. When the day finally arrived I walked into the office as he said walking behind me, “So your scan looks good.” Get out. I was shocked. Even my CEA blood levels were only 0.3! Chris cried, and I sat there taking it all in. In my fantasy I jumped out of my seat and hugged Dr. Jay. I cried and wanted to film it so I could share the “reveal” video with all of my friends. In reality, I just sat there almost faking happiness.
I am happy. I am beyond happy. I need a clear scan to then have another, and another, and eventually stop worrying every day about this damn disease. I know I will never be “cured”. Stage four cancer patients always live in fear. But I would love to have one day in the future where I wake up and think, “Holy shit I didn’t think of cancer once yesterday.”
For now, I’m going to try and forget that January is just three months away, and this blissful life could come crashing down.
Sitting at home everyday is no where close to fun. I have no idea how other people do it. Mothers I get – you have kids that you are looking after. But the people who scam the system – living on welfare or abusing their disability because they don’t feel like working – these are the people I do not understand. Until July 9th I have to rest and relax. I cannot do anything that would take my breathing up to a “pant” level. Running up the stairs after my cat could cause me to pop my lung. So I just walk around dragging my feet. So boring. I would have taken another course from school but there wasn’t one being offered that would go towards my certificate. So here I sit. Watching endless hours of Netflix in bed while drinking coffee. It is what a lot of people who wake up early to go to work dream about. Just staying in bed all day and only getting up to eat. Yes sure, maybe once in a while it would be nice. But nothing is fun when it is forced upon you. Like sex. (Did I just make a rape joke?)
Try as you must, no one will ever truly understand what I went through and am continuing to go through. You can try to relate to me, and some lines may cross, but at the end of it all it is not the same. Even for myself, my particular experience is not the same as another’s with the same type of cancer.
When people say to me, “I can’t imagine what you have been through.” – my initial response in my head is you are right, you can’t imagine. If you think you can try, you will still not even be close. As hard as you think it has been for me, trust me when I say it has been harder than that.
It is ok though. I do not expect any one to fully understand my struggle. They are not me. Even if you were with me 24 hours a day, you would still not feel the pain of it all.
I also cannot begin to understand what it feels like to lose a parent or a sibling. I do not know how it feels when your child is sick. I cannot grasp the heartache of your spouse of many years leaving you.
This is how we can learn from each other.
Being open and honest about it all. Sharing and leaning on those around you. A small glimpse into my life my help you in some way, and a glimpse into yours may help me.