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!
Sunday, March 16, 2014
Sunday, February 23, 2014
How it all began...
I have never really been one to post much online aside from the occasional picture of my kids, so I'm not sure why I am surprised to find that it is difficult for me to open up and share this story of mine. It is something I really want to do, so it's crazy how quickly I can come up with all kinds of excuses to put off working on this. But stick with me, I know it will get easier for me and these posts will start coming faster and faster. So, here we go, this is how it all started...
On January 21st, 2014 I heard something I really had hoped I would never hear aimed at me. There are masses... suspiciously like cancer... we'll take biopsies to make 100% sure... going to admit you into the hospital... Oncologist... cancer floor... I'm so sorry to have to tell you this really hard news. Into the hospital I went, then came the biopsies, colonoscopy, endoscopy, blood work galore, and then the bomb finally dropped. I have stage 4 colon cancer, it has metastasized to my liver, and as of now my liver has taken it and ran with it.
I'm not surprised that it took me a couple weeks to realize it was me they were talking about. That this cancer I keep hearing about was actually going on inside MY body. It had to be a dream, or more accurately, a horrible, awful nightmare. There is a tumor in my colon that is so large it has created almost a complete blockage. That tumor gave birth to at least a dozen other tumors in my liver, two of which are roughly the size of baseballs. The nightmare was just beginning and after my diagnosis was confirmed they didn't waste any time.
I had the colonoscopy that confirmed my diagnosis that Friday morning. It seemed that the tumor in my colon was so large they were afraid it would turn into a total blockage and they had to make the decision to either put off chemo and operate to remove the tumor, or put off the operation and hope the chemo started shrinking the tumor quickly. I spent the day waiting to find out if I would be having surgery or chemo and until they made that decision I had to hold off on eating or drinking anything. Let me tell you, there is not much in life more miserable than being thirsty and having an incredibly dry mouth and being rejected every time you ask for even ice chips, let alone a glass of water. I got so lucky when a certain awesome someone, who shall remain nameless, smuggled me 3 ice chips. Nothing in my life ever tasted so good!
Finally, that evening my oncologist came in and let me know they had decided that starting chemo as soon as possible was the best plan. I was lucky they were able to fit me in at the last minute to get a port implanted into my chest for the chemo to go through, which would make life so much easier. (Not to mention I wouldn't have to spend another day not eating or drinking!)
After the port was in they gave me iron and blood transfusions. I was to start chemo the next morning. I'm glad everything went so quickly, it didn't give me much time to really think... "WOW, I'm going to start CHEMOTHERAPY tomorrow." so I didn't get myself all worked up about it. Besides, watching someone else's blood slowly drip into me was enough!
The type of chemo I am on is called FOLFOX. I get to spend about 3-4 hours at the hospital for the first part of the drip, then they hook me up to a sweet fanny pack that has the rest of my chemo and a pump that regulates the drip for the next 48 hours. The best part of my oh-so-fashionable fanny pack is the fact that it enables me to go home, so I don't have to sit in the hospital for days on end, I just have to go back 48 hours later to get it removed. This exciting adventure of chemo, fanny packs, pumps and drips gets to be part of my schedule every other Monday for the next 6 months.
I have been through two chemo treatments so far, and my third is scheduled for tomorrow, the 24th. My first treatment was in the hospital and my second was out-patient with the pump/fanny pack combo. While they were the same actual chemo medicine, I had such different experiences it was crazy! (I'll write more about that another time) I don't know what to expect with round 3 tomorrow, but whatever it decides to throw at me, I know I can handle it.
One last thing, then I will FINALLY post this! My intention with this blog is to give an honest account of my experiences fighting stage 4 cancer. It will probably not be very pretty at times, and will no doubt be flat out sad and depressing at times, but it will also have it's beautiful moments that are full of joy. When it's time for the sad and ugly parts of my journey, please don't feel sorry for me. Just know that they are necessary to be able to fully experience and celebrate the beautiful moments. I know this won't be an easy fight, but I also know without a shadow of a doubt that I am much stronger that this cancer and I have absolutely no intentions of letting it win!
On January 21st, 2014 I heard something I really had hoped I would never hear aimed at me. There are masses... suspiciously like cancer... we'll take biopsies to make 100% sure... going to admit you into the hospital... Oncologist... cancer floor... I'm so sorry to have to tell you this really hard news. Into the hospital I went, then came the biopsies, colonoscopy, endoscopy, blood work galore, and then the bomb finally dropped. I have stage 4 colon cancer, it has metastasized to my liver, and as of now my liver has taken it and ran with it.
I'm not surprised that it took me a couple weeks to realize it was me they were talking about. That this cancer I keep hearing about was actually going on inside MY body. It had to be a dream, or more accurately, a horrible, awful nightmare. There is a tumor in my colon that is so large it has created almost a complete blockage. That tumor gave birth to at least a dozen other tumors in my liver, two of which are roughly the size of baseballs. The nightmare was just beginning and after my diagnosis was confirmed they didn't waste any time.
I had the colonoscopy that confirmed my diagnosis that Friday morning. It seemed that the tumor in my colon was so large they were afraid it would turn into a total blockage and they had to make the decision to either put off chemo and operate to remove the tumor, or put off the operation and hope the chemo started shrinking the tumor quickly. I spent the day waiting to find out if I would be having surgery or chemo and until they made that decision I had to hold off on eating or drinking anything. Let me tell you, there is not much in life more miserable than being thirsty and having an incredibly dry mouth and being rejected every time you ask for even ice chips, let alone a glass of water. I got so lucky when a certain awesome someone, who shall remain nameless, smuggled me 3 ice chips. Nothing in my life ever tasted so good!
Finally, that evening my oncologist came in and let me know they had decided that starting chemo as soon as possible was the best plan. I was lucky they were able to fit me in at the last minute to get a port implanted into my chest for the chemo to go through, which would make life so much easier. (Not to mention I wouldn't have to spend another day not eating or drinking!)
After the port was in they gave me iron and blood transfusions. I was to start chemo the next morning. I'm glad everything went so quickly, it didn't give me much time to really think... "WOW, I'm going to start CHEMOTHERAPY tomorrow." so I didn't get myself all worked up about it. Besides, watching someone else's blood slowly drip into me was enough!
The type of chemo I am on is called FOLFOX. I get to spend about 3-4 hours at the hospital for the first part of the drip, then they hook me up to a sweet fanny pack that has the rest of my chemo and a pump that regulates the drip for the next 48 hours. The best part of my oh-so-fashionable fanny pack is the fact that it enables me to go home, so I don't have to sit in the hospital for days on end, I just have to go back 48 hours later to get it removed. This exciting adventure of chemo, fanny packs, pumps and drips gets to be part of my schedule every other Monday for the next 6 months.
I have been through two chemo treatments so far, and my third is scheduled for tomorrow, the 24th. My first treatment was in the hospital and my second was out-patient with the pump/fanny pack combo. While they were the same actual chemo medicine, I had such different experiences it was crazy! (I'll write more about that another time) I don't know what to expect with round 3 tomorrow, but whatever it decides to throw at me, I know I can handle it.
One last thing, then I will FINALLY post this! My intention with this blog is to give an honest account of my experiences fighting stage 4 cancer. It will probably not be very pretty at times, and will no doubt be flat out sad and depressing at times, but it will also have it's beautiful moments that are full of joy. When it's time for the sad and ugly parts of my journey, please don't feel sorry for me. Just know that they are necessary to be able to fully experience and celebrate the beautiful moments. I know this won't be an easy fight, but I also know without a shadow of a doubt that I am much stronger that this cancer and I have absolutely no intentions of letting it win!
Tuesday, February 4, 2014
My Motto...
Aim high
Slowly exhale
Loosen your grip
Look at your arrow
See where it is at now
Focus on the target
Visualize where it is going
Relax everything and let it fly
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