Magic to do

Today I had my first Xeloda/Avastin side effects, other than the fatigue that I've tried to manage by being active and some nausea that I've managed with meds. My gums are sore and there are a few cracks that are painful when eating/drinking. I've also really lost my voice, which happened last Fall when I was on Avastin.

So I called into Dr. T's office and after a couple brief conversations, the NP is recommending Magic Mouthwash. Magic Mouthwash? Apparently, it's a thing. Although when I go to the pharmacy to pick it up (and it isn't ready), the pharmacist looks a little stressed and tells me that it is a compound that she has to mix and I should come back in an hour.

The lidocaine completely numbs my tongue and I have to say, it's a weird feeling. I think the description below says it all.

Hands in the air like you just don't care

• Bloodwork and treatment at Siteman South County

Raise your hand if you are getting a chemo infusion during your lunch hour! Anybody? Somebody? Just me huh.

Can you hair me now?

I understand that sometimes it is hard to know what to say to somebody that is going through tough times. I understand that completely. I don’t expect that everyone I know has a good knowledge about cancer treatments; mostly because before last June, I definitely didn’t have a good understanding of the subject. But now I’m in it, waist deep in the middle of it.

All cancer patients are not created equally, just as all cancer treatments are not created equally. So when you ask why I haven’t lost my hair, I have compassion for your lack of understanding. But that doesn’t mean that it doesn’t hurt me. If you want to ask me about things I’ve lost, ask me about my loss of innocence, ask me about the loss of my ability to have my own children two months before my wedding, or ask me if I miss the 18 inches of my colon that were removed. How about my fallopian tubes? I kind of miss them too. Or how about the very reason that I’m on chemo, because I was diagnosed with stage IV colon cancer, a disease with 5 year survival rate around 10%? How about the possibility of the loss of my future?

My hair? Yeah it’s still up there, well most of it. I’ve lost about half of it if you’d really like to know. Do you ­­_really_ want to know? Do you want to know about the conversation that I needed to have with my hair stylist about the handful of hair that would come out every time she washed my hair? I didn’t think so. And yes, I’m really self-conscious about it, even if you think “it looks great”. My hair seems like such a silly thing to be so focused on. It didn’t physical hurt when it fell out. Recovering from multiple surgeries and dealing with chemotherapy side effects, those are the things that I’ve been dealing with on a daily basis.

Nobody can predict the future but all likelihood suggests that I’ll find myself on other chemotherapy drugs at some point. Included in those future options are some drugs that could cause me to lose all of my hair, amongst lots of other side effects that you would never discuss at a dinner table. Can you imagine how difficult that will be for me? How it will transform the image in the mirror? Can you understand that it will take away some of my freedom because I will want to stay home where it is safe?

Some people pay a lot of money to be hair-less…

 

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Control

I don't feel control over very many things so this is a good reminder. Amy may be talking about running and training but it still applies.

Jury duty

So I played a little soccer this morning. The jury is still out on how I'll feel tomorrow. My feet are a little sore but I've got them lathered in udderly smooth lotion and covered in moisturizing socks. It seems that determining the exact amount of Xeloda that will be effective yet not cause severe side effects is a little bit of a learning process. I know I'm not starting at the highest possible dosage for my height/weight but is it enough for things to stay quiet and is it an amount that my body can handle and process without major problems. The jury is still out.

I'll be okay

• Appointment with Dr. K at the Siteman Counseling Center

Today was my last appointment with Dr. K, who is leaving Barnes in a couple of weeks. I'm bummed because we had reached a comfort level that was allowing me to say what was on my mind, which isn't always pretty. But I'm going to be okay. I got some information about a free exercise class for cancer survivors that meets twice a week. I spoke to the woman in charge on the phone and I'm going to give it a try next week if I am feeling up to it.

Maintain

• Appointment with Dr. T and treatment

When we checked in for my appointment, the woman at the registration desk told us that Dr. T was about an hour and a half behind schedule. He's a busy dude. It was really no surprise that when we finally did get to a room, the NP came in instead to talk to us. Counts are too low to try for Oxaliplatin again so we're officially switching over to "maintenance". Xeloda (one week on/one week off) + Avastin. And scans in a month. I suppose I should be more excited than I am. Maybe after those scans and some time on "maintenance", if I can see that nothing is growing, maybe then I can be more excited.

All by myself

2 miles at the park this morning before treatment. And the first time going by myself. #swelfie

My own half-marathon

In the last week, I've walked/ran a total of 13.1 miles. A bunch of my friends ran the GO St. Louis half-marathon today. I'm equally proud of my "half-marathon".

A good Saturday morning

I love Saturday mornings when we wake up reallllllly early to watch soccer. In today's case, it was 5:45 a.m. We watch the pre-game, the first game starts around 6:45 and we have breakfast in bed at half-time (cinnamon rolls today). Then comes the best part, Hector falls back asleep as I watch the first game finish and start the next one. This is the best part because he's at peace and resting. This cancer stuff has been so hard on both of us, there are plenty of restless and sleepless nights, like last night for Hector. Sure it might be fun if he was awake and could have just seen that pk for Swansea by our boy JonJo. But I love the sight and sound of my sleeping husband. He'll move around and every once in awhile wake up and ask "what's the score" or "que paso". I'm pretty sure he doesn't even realize that it's already the second or third game of the morning.

Good morning

Who is ready for breakfast?!