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Archive for the ‘family’ Category

Week 10 and Distraction in Nashville

Posted in Boston, Cancer, chemotherapy, Decisions, family, Road trip, tagged , , , , , , , , , , , , , , on November 7, 2012| Leave a Comment »

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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Just Call Me Pincushion

Posted in Cancer, chemotherapy, family, lymphedema, Uncategorized, tagged , , , , , , , , , , on October 16, 2012| Leave a Comment »

Today we set the record for the number of times it took to find a vein in my left arm to work: four. And that was four times of repeatedly trying and routing around in each of the locations. Not fun. The photo above shows the vein locator that was finally broken out, but didn’t end up being a ton of help, as the good vein that was found was below one that was already tried, so couldn’t be used. Ultimately what was decided, as this has become a growing problem, is that next week I will have a port put in that will be used for the five remaining infusions. The procedure to insert it under my skin will take place just before chemo so it will just make for a longer day. While it also has its pros and cons, at least we won’t have to go through the time and pain of searching for a vein to work any more – it’s just too bad that we didn’t do it in the beginning. But hindsight is always 50/50, right? (So if you’re just starting out and know, as I did, that your veins aren’t great, ask about a port!)

Overall, once we got the IV in, all was pretty good. I was able to dial back the steroids another dose, although that made the Benadryl hit me more so I dozed off a few times while talking to mom and Tina. As usual, they just laughed at me – most lovingly, of course!

Before the infusion, I had a great consultation with my oncologist. My blood work was all good, although it was interesting that there was a small blip in my liver that must’ve been the one time I took ibuprofen this week. I will continue to try to stay away from it… She answered all my questions about the increasing side effects I’m encountering and it was very reassuring. I can do this – only five more to go!!!

Because of my upcoming trip (check out my next entry for the exciting news), I was given a prescription for a compression sleeve. I visited the Friends Place boutique at Dana-Farber where Rosemary not only fitted me for the sleeve so that I can fly (helps prevent lymphedema), but also for a compression glove and found me a bra that instantly helped with some of the pains I’ve been having lately. Everyone there is so nice and helpful, I highly recommend it for everything from cancer-related gifts, jewelry and such, to the basics live compression items, wig fittings and other specialty services and products.

Then it was home to nap, and so far so good, since. I am glad to be counting down and to be done being a pincushion!

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The Gift: A Day with Others in The Breast Cancer Club

Posted in Alone, Boston, Cancer, chemotherapy, connections, Decisions, Denial, Discovery, family, hair, radiation, work, tagged , , , , , , , , , , , , , , , , , , , , , , , , on October 13, 2012| 4 Comments »

I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

  • Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
  • Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
  • Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
  • One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
  • Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
  • Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
  • Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
  • So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
  • Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
  • So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
  • Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
  • And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.

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