Sunday, October 23, 2011

Smile & Fake it til You Make it

It's been a while since my last update, which I partially blame on my computer dying and partially blame on the excruciating pain I'm in. Chronic pain makes every single thing harder to do. Ok so here's the latest on me:

Chemo #4 was uneventful. A scan taken after chemo #3 showed no change in my lungs between chemo 2 and 3. Bummer.

My computer straight up died on me. Double bummer. However when Jacob and I took it into Best Buy we were told I still had 5 days left on the warranty! (thanks dad!!) So, I get a new hard drive, a new battery and they're going to fix my mouse pad for free! Wohoo! It also means that I'm blogging from my brother's iPad and the spell check is not the greatest. Just deal with it ok?

My fabulously amazing oncologist is retiring. He is hands down the best doctor I've ever been to (and I've been to a lot of MDs) His compassion and accessibility is incomparable. I really trust him which is so important for someone who's giving you toxics on a regular basis. 

For the first time in my life, I was in too much pain to do the things I wanted to do. I was in Charlottesville 2 weekends ago and we had a beautiful wedding to go to. I could only make it through the ceremony and had to go back to the hotel room. I can't remember the last time I was this upset. All week I had to cancel meetings with friends and couldn't work much. I'm not the type of person who takes pain laying down, but that's exactly what I had to do this week. Furious and tearful don't begin to describe how I spent my week.

I went to my old colorectal doctors in Charlottesville to get scoped out... literally. Don't worry, I'm not awake for it and have no memories of the procedure. The docs said they couldn't see anything wrong in my digestive track so that I should adjust my pain medication regiment. Good news I guess, but I hate feeling over-medicated. I'm back to a balancing act.

I also met with a specialist at John's Hopkins. Driving to Baltimore with a sore bum was not easy at all. Let's just say there is a reason for the expression "pain in the butt"; it hurts every time I move or breathe. It also hurts to sit for longer than 15 minutes, but I digress. At John's Hopkins I saw a specialist in my genetic disorder familial atanometous polyposis. (Don't goggle search FAP though - you'll get something different). I also met with some genetic counselors. These guys were the ones who originally identified the gene mutation that causes FAP, so now we can do genetic testing for it! They have a database going back 25 years that provides statistics on other complications and risk factors with FAP. Every other complication that I could get is relatively low risk (around 5% for other cancers) and there's screening for everything. The doc said that since I currently don't have other FAP complications that I shouldn't worry. Hurray!

Chemo #5 tomorrow; planned to be inpatient at Fairfax Hospital. I was hoping to do this outpatient but it wasn't in the cards. Maybe next time.

My oncologist is going to change around some of my chemo drugs because of what the KRAS testing showed would be most beneficial. I'm not going to get the drug that causes diarrhea. I will however be getting oxylaplatin - which is the drug I talked about before that causes painful numbness when exposed to the cold. I won't be able to eat or drink anything colder than  room temperature. Looks like I have an excuse to wear arm warmers again!!! Overall, I'm not sure which side effect is worse, but I always love change. 

Ok so now that we've played ketchup, onto the real subject of today's blog...

I used to think bravery was the absence of fear. A firefighter fearlessly running into a burning building. The more I think about it though, bravery is the exact opposite. It's not the absence of fear. It means to carry on in spite of your fears, despite of the unknown. Brave are the people who fight against bad odds and unknown outcomes. Bravery is the kid who goes to school knowing he's going to be picked on. It's my mom who fights cancer, takes care of me so well, fights for her family - all not kowing what odds she has. It means keeping a positive attitude and keeping a smile on your face even though you're scared. It's Eric sticking with me despite the fact that even standing in pharmacy lines freaks him out. I know my brother and sister are brave. They listen to all my fears and reassuring me - even though they're probably just as scared as I am. 

Brave is going to chemo tomorrow, hoping that it's working, knowing that I'm going to feel awful, and smiling and laughing with the nurses. It's continually fighting for the life that I want with the help and support of my family and friends. 

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face."
 ~ Eleanor Roosevelt


  1. Aw, Cousin.... I wish I could take some of the pain away from you! You have the sunniest outlook on everything through the tears and the pain. You are the bravest cousin I currently have, and I love you!

  2. More thoughts and love from PA. I'm sorry you had such a rough week... but keep in mind that all of the rough times you have now are so that you have many many more healthy and happy days to come. XOXOXO Love, hugs, positive thoughts and many prayers. XOXOXO

  3. You are so brave and strong. And I totally agree with you about bravery... facing chemo every other week, that takes true bravery. You are amazing!

  4. Stay tough Patti, MoJo (my dog.... who has a slight weight problem) and I are pulling for you!