8/13/2016 Round 3: Scary Mom!!!

Hello, My Amazing Family & Friends!

 Hope you’re having a most excellent summer. Sun and heat are my friends! Love them! 

Just wanted to let you know that the cancer is growing again. My tumor marker is up pretty high. So, I had to restart chemo. Bummer!

The FolFOX and FolFIRI worked to keep the cancer under control but not enough to give me a long break. Even though I got 6 months of rest from the FolFOX, the cancer started re-growing in less than 3 months. With the FolFIRI, I only got a break of 1 month, 3 weeks and 4 days—not that I’m counting or anything.

Anyway, I’ve been accepted into a Stage II Clinical Trial using Regorafenib. It’s approved by the FDA (because it’s worked) but the clinical trial is for fine tuning and trying to lessen the side effects, the main one being burning/sore palms and feet. I’m in the group that gets the full dose right from the start (4 pills every day—yay! no long infusions!) and steroid cream on the hands and feet twice a day, every day. Not exactly fun but I’m glad there is AN option, as opposed to none. It’s on a cycle of 3 weeks on, 1 week off. And it lasts until it stops working, the side-effects are too bad, or I choose to stop. Nausea is NOT a side-effect so that is FABULOUS!

I started the first cycle July 14th. It started well enough. But by Day 5 my feet started getting really sore. Probably because I was at Preteen Camp and was on my feet from 6am to 11pm each day—looking back, it probably wasn’t not the smartest thing I’ve ever done. But it was fun. And I didn’t know what to expect from the chemo anyway. Carpe Diem!) By Day 6, I was waking up in the middle of the night with horrific pain all over my body. However, I just attributed it to not getting enough rest and/or water and trying to keep up with the Teens in Dodge Ball (no longer possible!). Ibuprofen helped. So I just pushed through. By the next week, I could barely walk and I couldn’t sleep well because of all the pain. I would just rock back and forth on my knees on the floor until the ibuprofen kicked in—usually 45 minutes. I felt like I was in labor. No position was comfortable.
When I started having to take mega doses of ibuprofen every 3 hours, I finally realized it wasn’t getting better and that I was going to ruin my kidneys. (I’m slow that way, I guess.) I finally called the doctor. He was on vacation, so I got a back-up, who stopped the chemo immediately and had me try Oxycodone for the pain. (All pain drugs just make me nauseous but I gave in because I had no choice) Took it one night and I was nauseous for the next 24 hours. Lovely. They thought I may be dehydrated so I had to do saline infusions and blood tests for 3 days before they’d let me go on my family vacation. Thankfully, things stabilized a bit so they let me go. Could barely walk because my feet were so blistered and sore for the first two days, but the pain finally passed. Vacation ended up being a much-needed and wonderful time with my family and friends.

Learned a lot from all the pain. Mostly: that I’m a Jerk. Yep. You want to see how you REALLY are. That part of you that you (hopefully) rarely see. Add some pain. The more the merrier. Also, make sure that you have to ride around in those little carts at Costco. The ones that jump start every time you push Go and beep like a fire alarm on steroids every time you back up. Be sure to make it a Friday afternoon at Costco. And after running into a bunch of displays and almost taking out a few small children, have the whole store jump and stare as you (for some insane reason while traveling at a max of 1 mph manage to miss the item you want) and try to back-up That’s when the “real you” surfaces. I was a nightmare to be around. Just ask my kids…and Scott. I was truly horrific. There’s a picture of us above with me in the cart—BEFORE I lost it. (Amazing how much a fake smile can hide. You can even see the fear in Dylani’s eyes. I think she knew what was coming. Rylee, on the other hand, was in complete denial.) We all get crabby when we’re sick or in pain. But I went waaaay past that. I had to apologize to them all. It was very bad. Another thing for me to work on. Sigh. It’s going to take A LOT of work. In fact, after going to the lab so many times for blood draws, I kept passing the little box of stickers they hand out to the kids for being such good patients. I thought, “I’ve been here so much, I’m getting a sticker.” So I picked out one that expressed how I most likely appeared to them. It’s an emoji sticker. You can see it in the pictures above.
Add some fangs and you’re even closer.

Imagine having to live with THAT. Shudder! Exactly. I stuck it on my computer monitor so I can be reminded of how scary I can be—and to remind the kids of what I can be like if they leave my desk a mess. Grrrr! Scary Mom!!!
Anyway, I got back to town and was able to meet with my regular Oncologist (yay!). After discussing all the options (which aren’t many), we agreed to try the chemo again but at a lower dose. Plus, no walking/running exercise. (I now must swim. And possibly bike) Also, if the side effects get horrid again, I’ll stop. They still are not clear on why I had all the pain. Possibly because of the dehydration. Or it just may be how my body responds to this chemo. Guess we’ll see what happens. Hopefully, it works this time. Won’t know the results until after this second cycle.
Today is Day 4. Feet are a little sore but I’m keeping them covered and lotioned. My voice has started changing. Oh yeah, this chemo affects my voice. Right now it makes me sound like I have a cold. It’s supposed to also make it deeper and raspier. Great. My hair is super short. My voice is getting deeper. All I need now is to sprout some chest hair and I may be able to pass as my kids’ Dad. Sigh. Poor, Scott.
So, there it is. Back to chemo. This one shouldn’t make me nauseous (unless I have to take pain drugs) nor lose all my hair. Thank you sooooo much for your prayers regarding the nausea. I was so scared to experience that again! And my hair is growing back. I bleached it platinum blonde based on a request from my Oncologists’ receptionist. Why not. Another “new” thing to try.

As always, thank you SO VERY MUCH all for your notes and cards and prayers and support and encouragement. It hasn’t been an exactly fun adventure but God’s been AMAZINGLY merciful. Sometimes, it’s easy to lose focus. But there have been a lot of blessings along the way. I won’t bore you with all the details, but they’re there. And it helps. It keeps me hopeful. When I’m away from the chemo I get to feel quite “normal” – which is huge. I even got to try wake surfing on vacation. SUPER FUN! And I don’t look like I have Stage IV cancer—except for the hair. It still scares young children (and some elderly women). Smile. Oh well.
Have an AMAZING, family-filled rest of the summer!