Monday, July 29, 2013

Summertime, and the livin' is easy....

I love summer. I loved it as a kid, and I love it even more as a mom. The long, lazy days, the ease of going outside to play without bundling up in winter gear, the festivals (especially in Ann Arbor - I think they use anything as an excuse for a festival).

My first chemo went really well. I felt nauseated for the first several days, but the anti-nausea medicine helped quite a bit. As I have told several people, it brought it down to the "pregnant with twins" level, so I was already familiar with that. The fatigue is rough, since I am used to going non-stop all day. So, I guess I am finally learning how to take breaks and slow down a little. 

The second week was my "danger zone" week, since my blood counts (read: immune system) were very low, leaving me susceptible to infections. I stayed home that week, and washed my hands religiously. It reminded me of that month when the girls were in the NICU, and everyone had to be so careful around those tiny babies and their very weak immune systems. Wow, it is like all of that has me very ready to handle this current challenge!

Oh - and I started practicing my Tai Chi every day again. My daily practice used to be one of my favorite things, then I got too busy and stopped. I am very glad to be back at it. It makes me feel more centered and stronger, both physically and mentally.

I am at the tail end of my "recovery week," into which we have tried to distill as much family summer fun as possible. This lovely week has included: bowling, farmer's market, lunch and a movie with Jason (just us!), the Reptile Zoo, coffee with a friend, several park trips, a birthday party for an adorable now 1 year old, bike rides, and the Hands On Museum

I have so many thank yous to give out to all the people who have become our support network during this time. Thanks for gift cards (Bobbi Jo, Jenny, and Decky/Christine? - the kids tore open the care package so I don't know for sure who gave us what!), and all the childcare help from my sister Yvette.

AND all the meal help, organized by the multi-talented Meriah: Susan, Emily, Patricia, Jenny, Prab, Jack, Pam, Callie, Amy, Bridgit, Decky, Marion, Wendy, Sarah, Kathy, Megan, Ariel, Karen, Brian, Dee, Trish, Nan, and Wendy. Woah, amazing. And several have brought food more than once!

I am sure I am forgetting people, so thank you to every one for such incredible support. 

Round #2 begins tomorrow. Keep sending all those good thoughts!

Sunday, July 07, 2013

Why Statistics are Stupid

First, let me clarify. I actually kinda love numbers and find them quite beautiful. And I think research is fascinating and the whole scientific process is just neet-o. 

BUT, when it comes to the medical world, talking to a patient about statistics and probability is kind of stupid. There is a 30% likelihood of this outcome, a 2% probability of this, and 73% chance of that. From a patient's perspective, it is a simple binary; either it works or it doesn't. The person who loses a child when there was only a 3% chance of that happening doesn't feel any better. When there is a 99% chance of a positive outcome, it still sucks really bad for the people in that 1%.

For anyone who has lost a loved one in a bizarre accident, I'm sure that they don't feel any better knowing that massive tornados, school shootings, and plane crashes are actually quite rare. It happened to them, and it sucked.

Sorry for the rant. I'm feeling strangely optimistic about starting treatment tomorrow. I probably shouldn't get my hopes up, but I am looking forward to tackling this thing. 

Thanks for all the support, literally from all over the globe. Amazing. 

Wednesday, July 03, 2013

The Time is Now

I've always had issues with the advice, "live every day as if it were your last." Do you realize how messed up the world would be if everyone did that? If we all knew the world would end tonight at midnight, no one would go to work, people would spend every last cent they had, it would be anarchy - sparklingly beautiful anarchy, with drunken revelry and dancing in the streets . . . maybe that doesn't sound so bad after all. But it would be not be conducive to any sort of modern society.


Sorry I haven't written for a while. I have been going through a lengthy maze of testing, including genetic testing. The odds of someone getting two unrelated cancers by age 37 are so astronomically low that they were certain there must be an underlying genetic predisposition to cancer, namely Li–Fraumeni syndrome. It is a pretty scary disorder that makes a person very prone to developing any number of cancers. And it is inherited.

The good news (the GREAT news) is that I do not have that syndrome, meaning my kids are not at risk. It was a major relief to hear that. 


We got some pretty hard news today. It turns out that the cancer has, in fact, spread to several other sites throughout my body. So, the initial radiation/chemo plan is out, since we are no longer dealing with a single tumor. I will instead begin chemo on Monday. They will do two rounds of that, then do more scans to see if the cancer is responding. 

To all those people who have offered good wishes, prayers, and healing vibes, the time is now. Monday morning the battle begins. Get out those lucky rabbit's feet (not so lucky for the rabbit!), bang your drums, light incense, wish on a star, whatever way you know to try and tilt this fight in my favor. 

I'm an anomaly already, so I can surprise them again, right?