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Archive for the ‘chemotherapy’ Category

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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I’m actually not sure what ‘the home stretch’ literally means, but I feel like with 21 weeks of chemo down, and only three weeks left, that it should constitute the home stretch for me. Somehow four weeks to go seemed like forever, whereas three weeks seems like nothing! Well, maybe not nothing when it’s still cumulative, but doable. And a real end in sight.

Today was not bad at all. It went by really fast and was my first day without steroids or Benadryl before the pepcid and taxol. And no big reaction. I think all of the rest since Friday, including working from home in my pjs on Monday, really helped. I feel so much better. Sure there are aches and pains, but now that I know basically that it’s the taxol, and I’m starting to pace myself more, I think I can handle it. I know I can.

 

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Why does it constantly surprise me that I am fighting cancer? Why does it take getting sick to slow me down? Why do I insist on trying to be normal and keep up with everyone else and pretend nothing is wrong? Why can’t I remember that I am bald? Yes, those are all rhetorical questions – I don’t expect anyone to answer them. I just get mad at myself and mad at the whole situation. I am mad.

When I returned to work Thursday following the port, I was asked “does it hurt?” Yes, I replied, but it’s not much different from every day – something always hurts. I’m used to something constantly hurting, whether it’s my arm, my boobs, my fingernails, my feet, my mouth, whatever – at least they usually take turns and don’t all hurt at once. I ignore it and plow through.

But yesterday I started feeling… different. It was really strange how it washed over me and suddenly I was concerned. I’ve been congested and blowing my slightly bloody nose day and night that I’ve gotten used to the constant sight of blood (sorry for those that this grosses out – but it’s reality). When I mentioned it a couple of weeks ago, my doctor told me not to worry about it, but I wondered if it was at all connected to how I am now feeling. Each time I take a deep breath, my chest, back and back of my neck get really tight, and my head feels… full, I guess, too. And if I bend down, my head feels like it might explode. Add that to how tired I am and how just walking to my car makes me winded, I figured something could be wrong.

So I spent much of today back at Dana-Farber. Blood clot? Pneumonia? An EKG, CT Scan and a bunch of blood work later and the prognosis is basically that I have a viral infection and that the build up of the taxol is catching up to me, and that I need to slow down. Basically, a reality slap of I’m not invincible. That I am being poisoned each week and it is a cumulative drug and it’s going to keep getting worse for four more weeks and I better slow down or I’ll only make it worse. I better wake up and realize that I can’t just ignore the fact that I am fighting cancer.

So I canceled all my weekend plans. Rest and Robituson. Those are the doctor’s orders. And even though I’m mad at the whole situation (being sick, cancer in general, and missing dinner with a friend tonight, my eldest Goddaughter’s birthday party tomorrow, book club Sat night, etc. ), I will follow them. Both because I feel horrible and don’t want to move from my couch anyway, but also because I am not ready to sacrifice work or the CMAs and I want to be ready for both next week. So I will sleep the weekend away and hopefully build up enough energy to pick the pace back up again on Monday…

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