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I had my follow-up appointment with Dr. H on Friday. I was relieved to hear that he thought everything looked good, that it’s healing and surgery went as well as could be hoped. Phew. I’ve heard real-life nightmares from friends who ended up with one breast up near their throat, and another who had a large extra round bump, like she had three breasts. I couldn’t be more thankful to be getting more and more back to as close to normal as possible, for the first time in now close to two years. (Has it really been less than two years??? It’s amazing how much can happen in that span of time…)

The other thing Dr. H told me was that just because things are good so far, doesn’t mean I get to resume my regular pace and activities. He explained that we barely escaped without a drain in my right breast (the one that was radiated, hence not as straight forward as the left) and that if I don’t take it easy and limit use of my right arm, fluid could build up and that would not be good. So while I no longer need to lie still (which I really did as much as I could but probably not as much as I should), I do need to be cautious. No lifting anything heavy, running, exercising, etc. for three weeks. Then, so long as all still seems good, I can start running, lifting, etc.

To be honest, right now I am just so thankful to be able to stretch! My arms were supposed to stay down at my side at first and I would literally wake in the middle of the night trying to stretch because my body was so longing for a good stretch! Now I can, but do it gingerly and stop when it starts to hurt. I also feel better because I’m able to massage my right arm again: I had visions of the lymphedema kicking in and my arm swelling beyond recognition. Luckily, that didn’t happen. And I can do pretty much anything with my left side and arm, so that helps.

And everyone has been wonderful as usual: Mom stayed with me for the first few days, then Cory, and then Nick watched over me. (Nick and I ate better than we have in a long time, between mom, Cory and Tara cooking for us!) And I don’t return to work until Jan. 2 so, other than the holidays, spending time with family and friends, and general home stuff, there’s not much I need to do anyway. So I will do my best to continue to take it easy, and simply enjoy the holidays…

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This morning I ran the BAA 5K. For those not familiar with it, it is 3.1 miles along Newbury St., Commonwealth Ave., and starts and finishes on Boylston St., by the Boston Public Library. In fact, it ends at the finish line for the Boston Marathon, which happens to be tomorrow. While the Marathon has been consuming much of my time – helping our Genzyme Boston Marathon Team with events and fundraising for NORD – the 5K has been looming in my mind.

As many of you know, I only started running in October 2011. I always swore I’d never run. I was the non-athlete who thought she was going to die when they demanded we all run a mile in school. But inspired by both our Genzyme Running Team and my cousin Tara, I ran my first 5K in December 2011 – the very fun but very cold Jingle Bell Run – and participated in Genzyme’s first Rare Disease Day Relay (last three miles) on February 29, 2012. Then, of course, I was diagnosed with Breast Cancer in March 2012 and with the ensuing surgery, treatments and side effects, the running pretty much stopped.

I tried numerous times to get started again – and each time I did, something happened like:

  • I was signed up for the Newport Half Marathon in October, then found out I needed more chemo, so that was out.
  • I signed up for the Jingle Bell Run in December, thinking that was a good way to start over (repeating my first race), then found out I needed radiation.
  • I signed up for the second Rare Disease Day in February, and then got sick just before.

So it was declared that it must be the lingering effects of the 2011/2012 hell year combo and I was cursed. I simply couldn’t sign up for any more races until I successfully ran one again – and luckily I had signed up for the BAA 5K before that third bullet, so we were just holding our breath that nothing would happen before it…

Th BAA 5K is significant to me for multiple reasons:

  • This was the first race I saw Tara run, in April 2011. I took her kids to cheer her on and watch her cross the finish line. I was so proud of her, and it never even occurred to me that I could do the same thing – 3.1 miles seemed like forever! And at that point I hadn’t quite made the connection yet that if I ran, I could eat and still lose weight, so I was still swearing off running.
  • I’ve been supporting our Boston Marathon Team since I joined Genzyme and they are such a fabulous group of compassionate, committed people. While I have no desire to ever run the Marathon (sorry Phil), I love the idea of doing something that ties so closely to the team.
  • It’s one of my favorite courses – it’s basically home. Since it’s right between my last apartment in Beacon Hill and my current apartment in Brookline, it’s one of my main running paths, especially at night. When I first started out, I mainly ran along the Charles River, along the esplanade, but then some runners were attacked there, so I started running up and down Boylston, Newbury and Commonwealth – all busy streets with wide sidewalks – if I was going out after dark. And there’s nothing like window shopping and people watching to make a run fly by!

It’s been harder getting back into running than I thought it would be. I think that’s in part due to the season and the cold – I am always so much more motivated to run when it’s nice out. Lucky for me, spring is now here: the Swan Boats returned to the Public Garden on Saturday, so now it has to be nice!

And the last few weeks I’ve been having shin pain, which I’ve never had before, and have really just been slugging along- much more walking than running… but I was determined, no matter what my pace or if it hurt a bit, to do this race.

And I did (even remembered to wear my compression sleeve), with such an incredible group of supporters: Tara (who in just three years has graduated to running her first Boston Marathon tomorrow!), and some of my Genzyme Marathon Team family: Jessi, Colleen, Kyle, Andrew, Sean and James – and Cian and David from Ireland not only cheered me on, but ran, too! I look forward to cheering you all on at the Marathon tomorrow!  And Nick and Shay even joined us for a celebratory brunch (complete with mimosas for a few of us…) after the race. Thank you all so much for being there for me – it meant more than you know!!!

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So now the curse has been lifted, and I am mulling a new goal: Disney Princess Half Marathon in Walt Disney World in February. (If it wasn’t the end of kid’s February vacation, I would definitely do it – but must weigh pros and cons before committing.) In the meantime, I’m going to sign up for a few more 5Ks…

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Last night I went to my (gulp) 20 year high school reunion. And I had an absolute blast. The only bad thing was that it wasn’t long enough and many of us couldn’t believe it when the bar was kicking us out because they wanted to close. Of course, Nicole (one of my closest school friends) and I ended up talking even longer in my car until we realized that we better both get on the road before we were too tired to drive. The whole thing wiped me out so much that I slept until 1:30 this afternoon and never got out of my pjs!

I spent much of the day (once I finally woke up) replaying some of last night’s conversations in my head. It was a lot like speed dating, in that there were so many people to talk to with that you mainly had fairly short, but hopefully meaningful, spurts of dialogue. Then something would happen to push you apart, and although you said you’d be back, the time flew by so fast, inevitably that was the end of the discussion. 10 years – which is when most of us were last together, at our last reunion – is just too long. Even with Facebook.

And then there were many that you never even got to connect with – again, because time ran out – and several more that weren’t able to be there at all. So many missed!

But then there were the gems of the night – the real food for thought…

  • about love – that if it’s right, it can last, even if you met in school. And if you haven’t found your love yet, make sure that you hold out for the right person, that he or she is out there, and until then, enjoy dating and ‘companionship.’
  • about life – know that you can start over whenever and wherever you want. It’s all up to you and only you can stop you.
  • about friendship – that it doesn’t matter how many years go by, there are some people you will always instantly click and feel comfortable with. And often they are the ones to introduce you to new people who are destined to become your new friends.
  • about people – that everyone has a story, if you’ll only listen.
  • about acceptance – that if you are honest, open and comfortable with yourself, they will appreciate and accept you for who you are.

Many people asked how I was doing, and others simply offered words of support – my favorite was the big, long bear hug and the whispered words of “you know what I’m saying, right?” I know – and thank you!

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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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I told Amy I’d fill in (comparatively poorly, I’m sure) for her here until she’s feeling well enough to update you all herself, in her own amazing words.

I do want to take the opportunity (while she’s still in surgery and can’t give me a hard time) to just take a minute to reflect on how amazing, strong, determined, and loved she is.  She knows she is surrounded by loving, compassionate friends, family, coworkers, etc.  And just as she has helped us all through one drama, crisis, challenge, and joy at one time or another, we’re all here for her, too.  I’m not even going through what she is, the choices she’s had to make, and the ones she hasn’t been able to make (like running away and ignoring all this 🙂 and I am so moved by people that have reached out to me to check in on her, offer a hug, kind and encouraging words, even cupcakes.

You’re one in a million Amy Lee, we love you like crazy.  I hope that all these good wishes, good vibes, hugs, kind words and gestures, are keeping you company while you’re in surgery today. 

And I can’t wait to update everyone that you’re smiling and ready to tackle the next challenge.

 

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I should be happy. I should be elated. I should feel better. I got the results of the BRCA genetic test today and it’s negative – no mutations were detected. So I won’t be passing it on to my future granddaughter or nieces, which is the one part I AM overjoyed and infinitely thankful for. And of course I’m glad there’s not the likelihood of ovarian cancer, so I can keep my ovaries. So why am I not jumping for joy?

Because it means I have another damn decision to make. If the genetic test was positive, it would’ve been a double, plain and simple. The decision would be made. And early on I thought it was clear that if it was negative it would be a single. But then I went and spoke to people and read a ton, both discussion boards and other research, and so many people (including doctors and those who’ve been through it) recommend doing both anyway.

Their reasoning? Those who do just one have to be tested every six months. And they go through the worry all over again each time. And put their loved ones through it all over again. And then when there is something detected, it’s more biopsies and pain and stress. And God forbid it does appear in the other breast – it’s everything you’ve just been through repeated. This is not fun and not something I want to do again. And there are the cosmetic reasons too: doing both at once is easier to match and feel better about yourself in that way.

Why do some only do one? Less invasive – avoiding doing a possibly unnecessary surgery. Less pain and recovery time. To keep one natural breast, so you retain the feeling and the opportunity to breast feed if a baby is in your future.

So I don’t know. I’m so sick of options when there isn’t a clear one and none are good. Again, I hate all the options, and again, doing nothing isn’t one of them. Tomorrow is my pre-op so I will talk to my surgeon and see what he thinks. And I’ll also look into things more with my insurance. And I will make a decision. Because I have to.

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Thank you

Thank you – two little words that will never really describe how grateful I am for all the incredible people in my life. My family, friends, co-workers, past and present – I don’t know how I’ve gotten so lucky to always be surrounded by such caring, supportive, thoughtful, intelligent people! (Yes I’m talking about YOU! And ok, you are funny and gorgeous, too! 🙂 )

The outpouring of love and support over the last two weeks has been completely overwhelming. From the notes on facebook, texts, letters in the mail, e-mails, tweets, phone calls, office chats, lunches, dinners and long walks – I am so grateful to know how much you care. Seriously, if cancer can be beaten by prayers, positive thoughts, good vibes and general well-wishes, we’ve got this won hands-down. And I believe it can be.

So while sometimes I will get  bitchy, bossy (as normal, right?), depressed, weepy and weary, know that deep down I know this is not the end of the world (I won’t let it be) and that I am endlessly thankful every minute of every day for every single one of you…

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