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Archive for November, 2012

As mom, Tina and I walked out of Dana-Farber today, we were all unusually quiet. “I feel … beat up,” I finally said. We all looked up at each other and got small, weary smiles on our faces; looking at them, I could see they felt just as drained as I did.

I know this hasn’t been easy on any of my family and friends. It’s been a nightmare for us all. And just the thought of it being extended is wearing on us all…

Today was week 11 of Taxol, week 23 of chemo. Next week will be my last chemo session. I should be excited. But I’m not. I can’t be. Not yet. Not until after tomorrow’s discussion with the radiation oncologist. Because we may not be done yet.

Mom and Tina debated this with me at chemo today. “We have to celebrate,” mom said. No, it may not be the end. “But even if you have radiation, you’ll be done with chemo and we should celebrate that,” tried Tina. Tara and Kristen brought up the same thing this weekend. “We need to have a post-chemo party!” But no. If I have radiation Monday through Friday for six weeks, in my mind, there is nothing to celebrate. At least not until that is over.

So we’ll see what tomorrow brings.

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Today was week 10 of Taxol. And it went very smoothly. Only two infusions: pepcid and Taxol, since I did well last week without any Benedryl or steroids. It makes it a quicker visit and I’m able to stay completely alert for the infusion. The port is working out well, although I was hoping it could come out right after the last infusion but it’s recommended I keep it in until after surgery in January. At least it’s not as tender any more so I can handle it bumping up against my boobs of steel until then…

There was another recommendation today, too: talk to the radiation team. I had decided not to do radiation for a number of reasons, but I never did meet with them after surgery. They never called and I didn’t call them. I know that’s pretty weak, and now that my doctor has pushed it, I will call and listen. It doesn’t mean I will definitely do it – I really, really don’t want to – but I will consider it. So while there are only two weeks to go with the Taxol, it may not be the end of treatment.

Nashville was a fabulous distraction. Tina has made it her mission to keep me distracted throughout this entire process and she certainly pulled off the ultimate distraction by winning this fabulous trip! We had such a good time, with so much packed into just a few days. It really was a once in a lifetime experience, thanks to Tina sharing our story, Give the Gift of Music and the Country Music Association.

Music has always been healing for me. Certain songs are like therapy. And for a country music fan, being back in Music City brought a rush of emotions. In part it felt kind of like I was back on the road trip, and brought me back to where I was in my life two years ago, thinking about the road I’ve taken (literally and figuratively) and how much things have changed, for better or worse. If I’d chosen to settle in xxxx, how would this story have gone? One thing I know for sure, I am so thankful I’m in Boston, for the incredible support network of friends and family, to be working at Genzyme and because of Dana-Farber. I know that some of the other parts of the country I considered moving to do not have anything that (at least in my mind) compares to the support and the care I am so lucky to have here.

Tina was a great balance of watching over me (reminding me to wear a mask on the plane so I didn’t get sick and going with a slower pace, including daily naps) and finding us fun things to do.  I was excited to go to a few places I didn’t get to see on my road trip, like the Loveless Cafe, The Country Music Hall of Fame and the inside of The Ryman. And then there were the shows…

The CMAs were simply awesome. We had great seats and you could feel the excitement vibrating throughout the arena. From the moment the lights dimmed and the live show began, it was more like a concert with a few awards sprinkled in than a typical awards show. We couldn’t have asked for a better show to see in person!

We returned to the arena two nights later to see another show: the taping of the CMA Country Christmas show, which will air on TV in late December. Many of the same artists performed, with a few new ones sprinkled in like John Legend and Colbie Caillett. What was really interesting was because this isn’t live, there was a ton of stop and starts, and some retakes, even of songs. So what will be a one hour show took about three hours to tape. We enjoyed every second!

And while this was a great distraction, there was no completely getting away from things. Nearly every place we went, someone would ask me if I was still in treatment or what it is that I have. You guessed it – I went bald (well, I have a bit of baby hair now, but basically bald) the whole time, so was a little hard to miss. Had I worn a wig, I highly doubt I would’ve had any of those interactions. And I would have missed out on talking to so many kind, caring people who have had cancer or a close loved one with it. Honestly, making those connections are the best part of this nightmare experience.

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