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Posts Tagged ‘mastectomy’

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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Chemo week eight wasn’t fun, but the infusion was the least of it. Honestly, I probably shouldn’t be posting right now because I am on painkillers and they say I’m not supposed to ‘drive, operate heavy machinery or make important decisions.’ I think that basically means you’re not in your right mind – and I do know that is true, and figure you probably shouldn’t write things for all the world to see when you’re like that, either. Oh well – I am anyway because I feel guilty not – so many people have been checking in on me because they haven’t seen a post yet and I feel bad having anyone worrying about me… instead you get to read my rambling! That said, I’m going to keep this brief, so I don’t say anything I’ll regret in the morning.

Tuesday (was it really only yesterday?) started at 5:30 in the morning, rousing mom and Nick so we could get to Brigham and Women’s Hospital and I could be the first in for the port. Long story short, I was dozing on the operating room table when I was woken and asked if it was ok for them to put the port in my arm rather than my chest as they were concerned about the placement of the tissue expanders. Since the last thing I want is one of those popped (I have a friend with implants and one has deflated – not fun), I said of course. Whatever they deemed best.

The next time I woke up we were done and I was in recovery with mom and Tina. I don’t remember much except that all was fine with the world (yes, I was heavily medicated), I got dressed and they wheeled me on over to Dana-Farber for the infusion. They used the port for both taking blood to do my labs and the infusion, so it was already paying off – no routing around my poor veins any more. The redness around the port was definitely growing, though, and the nurse drew a circle on the clear bandage, saying if the red spread outside the circle to come back.

Home we went and as the evening went on and the meds wore off, the pain increased… and this morning the red was well beyond the circle and felt much worse than the ‘slight discomfort and tender’ that the discharge papers said I’d feel – I couldn’t even put my arm down at my side! I called and it was back to the hospital for us…

Luckily it isn’t the type of red they’re concerned with: the doctor said, in fact, that most of my upper arm will turn red and then black and blue (note to self: may want a dress with sleeves for CMAs), and that it is only ‘infection red’ (didn’t realize it was its own special shade) and warm to the touch that they worry about. He also said it should be better by next Tuesday for the next infusion, and it’s not so bad for most because they can take Tylenol or ibuprofen. I can’t because of my liver, so he said to stick with the painkiller I was prescribed – but I can’t take that and go to work. So I get the choice of comfort at home or pain at work – great.

So for the rest of today I chose rest, and tomorrow it will be back to work, and I’ll grin and bear it. I hate to say it, but I am getting so used to hurting that I don’t really care. I don’t think there’s been a day since the surgery in April that something on my body hasn’t hurt, and the aches increase every day. I am holding out hope that it all really does subside shortly after the last treatment.

Overall, though, I am just thankful that it hasn’t been worse. That I can still get up and out of bed every day. That I can still work. That for the most part – other than the aches and pains and cringing every time I look in the mirror and see my mostly bald head  and the weight I’ve gained – I’ve been able to maintain relative normalcy in my life throughout all this. And that I will live and, as so many keep reminding me, someday this will just be a chapter in my life rather than the main storyline…

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