One of the hardest parts of this journey so far has been explaining what is going on to my two little boys. They are at a tricky age, too young to just flat out tell them exactly what is happening, but old enough to know that something pretty major is going on. They have known about my Crohn's Disease forever and have seen me really sick quite a few times (which may have helped prepare them for this battle) but I knew there was no passing this off as a Crohn's flare up. So, how exactly does a mother go about telling her 7 and 9 year old boys she has stage four colon cancer?
Star Wars, that's how!! They knew how sick I was and had witnessed how quickly my health had declined that last month before I went to the hospital. Once my diagnosis was confirmed and we had a pretty good idea of what my treatment plan would be we started writing this story...
"Storm Troopers have been attacking mom. The Rebel Alliance Hospital has found them and are sending their own Jedi army to fight them. But the Jedi methods they have to use will make mom sick for a while too. It's ok though, because they are the awesome Jedi's of the Rebel Alliance that have been specially trained and were sent in to save mom and make her better, and we love them!
This may take a long time and we need to be diligent and brave and have faith. Things will taste icky and sweet food might taste spicy to her. Her appearance may change and her buns may fall off, but she will still be your mom.
We want to recruit you to help with her battle through the changes and trials that are ahead. Fly your X-wings with confidence and use the force to know what will guide you to the right. Mom will be there, be her Jedi's to fight. Equipped with Light Sabers and faith as your guide the battle we are winning with your mom and your family at your side!"
Now, I know they don't believe there are actually tiny Jedi's and Storm Troopers waging war inside me, but it has sure made it easier to explain things that have happened along the way. There have still been some rough times as they adjust to this new circumstance. Kyle was blaming himself for my being sick for a while, he thought he had brought home a germ that caused me to catch cancer. And it took a few days for him to believe me that there was no way he could have done that.
He also told me one day that he was afraid I was going to die. That was, by far, the hardest thing to talk to him about. I didn't want to cry or show him any fear and I also didn't want to just say, don't worry, I'm not going to die, I didn't want him thinking I was just dismissing his fears. We talked about it for a while and we both asked questions of one another and I finally told him I still have too much to do before I can die. I still have to show his first girlfriend pictures from his first bath when he was a baby, and watch him graduate high school and college. I still have to watch him get married and have babies, and then, most importantly I told him, watch him raise my grandchildren while I sit in a rocking chair laughing when his kids do all the things to drive him nuts that he has done to me. Our conversation ended in tears of laughter instead of sadness as we talked about all the wacky things he and his brother have done and what kinds of wacky things he will be hollering at his kids, "No hover-boarding in the house!!!"
Kian has taken things differently than Kyle. He is more lovey and more sentimental than normal, but has not expressed a lot of sadness or worry. I don't know if it is because of the 17 month age difference, or the difference in personalities, or that he just hasn't had those thoughts yet, but regardless of the why, I'm glad that he is still my happy, silly baby boy, and I hope he will come to me if and/or when he does have those thoughts or feelings.
While the Star Wars story has helped tremendously, they still have a hard time with what parts of my being sick are chemo's fault and what parts are not. I'm still not 100% sure on that one myself. My first three treatments were all the same, FOLFOX, and each was a completely different experience. I wasn't sure if it was the chemo compounding on itself or if it was because my tumors were either dying off or getting worse. My doctor seemed somewhat puzzled as well. In theory, I should have been feeling the same, or even better, but my side effects, and especially my pains were lasting longer each round and were getting more intense, so they decided to go ahead and give me a CT scan early, which turns out was a great idea.
The CT showed that all my tumors had grown, not a ton, but a few centimeters, which is obviously not what we want. So they have switched my chemo to a cocktail called FOLFIRI (pronounced full fury). My first treatment with FOLFIRI was this last Monday, the 10th of March, and while my infusion time is basically the same, the side effects are much different. I have a really good feeling about FOLFIRI, and they are planning on doing another scan after the third round, so hopefully my intuition is right and the FOLFIRI is what the Jedi's were needing all along!
