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Posts Tagged ‘radiation’

It’s 2014. No one should die of cancer. It has to stop.

Almost exactly two years ago, in August 2012, a friend from high school messaged me and asked if she could pass my blog on to her cousin, who was also battling breast cancer. Of course, I told her, that’s why I write this – to try to help others through it. “Thank you, Amy,” my friend replied, “She just read your first blog and is crying her eyes out… she can relate and feels like no one understands.”

It wasn’t long before my friend’s cousin (who was always very private, which is why I am not using her name) and I became friends on Facebook, and then exchanged messages. “I can relate to your blogs so much!!” she wrote. “Thank you for sharing your story. I would love to be able to meet you someday. Good luck with everything! We seem to have similar stories. I am currently getting my second round of chemo (the strong stuff!). I started last March w/chemo for 12 straight weeks, had a radical mastectomy (right breast) in June and now I have 4 of these absolutely sucky chemos. After this is over I need to have radiation. Sometime next year I will have reconstruction. Stay strong & positive like you have been!”

Yes, we had similar stories, even a similar timeline. But, for some reason, I am here and she is not. She passed away yesterday. My heart is broken. It’s just not fair!

We exchanged a few more messages after that first one, sometimes she commented on the blog, or a picture, but we never got to meet in person. I naively thought she was, like me, on the road to recovery. I had no idea she had gotten sick again until 10 days ago when my friend messaged me:

“Amy, I just wanted to thank you for being such an inspiration to me and my family… especially my cousin  who has battled cancer. Your blog really helped her on her journey. Unfortunately, her battle is coming to an end but I just felt you should know that many a days you helped her get thru it. My love to you and your family!!”

I was shocked. Horrified. But her story was similar to mine??? How could she be dying??? She’s a mom – what about her kids, and everyone who loves and needs her??? But that’s how this miserable disease is. It doesn’t care if you have kids, are happy, love life. Rich, poor, whatever. And the fact is, you can never be sure you really beat it – it can come back at any time.

So now I’m going to go cry some more. For this life that was taken much too soon, and for all who loved her. And I’m going to be even more thankful now than ever for every minute that I get here on earth. I realize how truly lucky – so blessed – I am to still be here today. We don’t all get happy endings, no matter how much I wish we did…

 

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I don’t know why, but I’m suddenly feeling shy and hesitant to post certain things. I got the best news in a long time this afternoon and wanted to tell every stranger I walked by that (spoiler alert) I can now get nipples, but as soon as I got home and thought about updating this blog, I got nervous. Then I saw on Facebook “Duke Porn Star on What People Don’t Understand About Sex at Work” and I thought, “Jeesh, if she can talk about that, I can talk about nipples!”

I found the first lump on March 14, 2012 and this Thursday will be exactly two years from the day I received the call informing me that I had cancer. This is, and I think will always be, a tough week for me. But Tara and I often talk about rewriting memories and maybe getting this news puts a new, happier anniversary on my calendar.

Today I went for my follow-up with Dr. H, my super fabulous reconstructive surgeon. As Cory pointed out to me today, I’ve been worrying about this visit for weeks. Even though I’d been told that the right one would heal differently due to the radiation, I wasn’t sure that the way it was healing differently was the right differently. I’ve thought over and over about friends who have had trouble with their implants – one who said it was like a baseball, another who just had it replaced for the third time – for a total of five surgeries in the last 11 months!

So as Dr. H inspected it with his normal dead-pan expression – he must be a great poker player – I mentioned nervously some of the things I’d observed, like some of the scarring being hard in places, and an end that just didn’t seem as healed as the rest, and I asked if it was healing normally or if it was worse. His response? “It’s healing abnormally well!” He explained that it’s actually better than he expected and really as good as we could hope for a radiated breast. Phew!

So then I asked the question I’ve been waiting to ask since the April 30, 2012, when I lost my breasts: “Can I make the appointment to get 3D nipple tattoos?” Dr. H smiled, nodded, and replied, “Yes, you certainly can.” Woo hoo!!! I also found out that I don’t need to go all the way to Maryland for them (although Vinnie appears to be the Michelangelo of areola tattoos and amongst the pioneers of 3D nipple tattoos). Dr. H recommended Juli Moon right down the road in Lynn, assured me he’s never heard anything but good things, and showed me her portfolio.

Needless to say, I called as soon as I got in the door, before I even got my coat off. I didn’t make the appointment yet as I need to check some things with my schedule, but it looks like in early May I will feel just that much more normal again…

And for some of my friends who are just in the beginning stages of this journey – recently diagnosed, just finished surgery, in chemo or radiation – it may feel like forever, but that will be over soon! You’ll be through treatment, your hair will grow back, you’ll regain your strength and so much of your life. It will be your new normal. And it will be wonderful, and you will be stronger for all you’ve been through! And this is all for you! I wouldn’t be on here talking about nipples if I didn’t think it would help answer some of your questions and ease your road ahead! xoxoxo

 

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I woke up and heard Cory telling his sister on the phone that it was going to be a rainy day. I reached over and grabbed my phone and saw that not only was it not raining yet (only 60% chance at 9 am – yes, I slept until 9), but it was 46 degrees out – woo hoo! Because today is the first day I’m allowed to start running – again.

I’ve had more starts and stops in this short running career since I was inspired by Tara and the Genzyme Running Team to take it up in the late fall of 2011. Ran my first 5k that December (the Jingle Bell Run – so fun!), then found the lump and got the breast cancer diagnosis in March 2012. Surgery quickly followed. No running for a long time. Start back. Chemo. A little running but not much energy to run – then afraid I’d fall with my numb toes and soles of my feet. Lymphedema set in – so glove and sleeve when running from now on until eternity. Then a bit of running, but winter and radiation and the combo was not my favorite – and still little energy and numbness. I ran my first 5k back, the BAA 5k, the day before the Boston Marathon – it was strange that I got to cross the finish line when so many of my friends and family didn’t get to the next day. I worked my way to my first 10k – the BAA 10k, their first event after the marathon. Since then it’s been some running, walking, a stupid fall – and then surgery again. (Oh and winter – which we know I hate to run in the cold.) But now hopefully the last surgery is done and I’m allowed to start running – again.

So back to realizing it was warm (relatively) out. I know me. If I didn’t roll out of bed and get in my running clothes and out the door right then, before the rain, it wasn’t going to happen. And I have new sneakers to break in!

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So I did. And the second after I got outside and snapped that picture of my new sneakers, it started to pour. Of course it did. I thought about going back inside, but thought “Amy, you just posted a picture saying you’re going for a run – you have to run at least a mile.” (Well, run/walk – remember, I do intervals.) Argh. Fine. I turned up my music, turned on Map My Run, tucked my phone in my sleeve and started to run. (Quick side note and shout out to awesome Matt O’Shea for sending me info on how to make Nike+ show my map while running – I remembered the tip halfway through, tried it and it worked! May switch to that app from now on. I like the cheering. 🙂 Thank you! )

Luckily, after about a mile the rain stopped and it just remained… dreary, and at least not cold. And heck, I’d gone a mile – I might as well go another half before turning around, right? Which brought me to Kenmore Square:

20140111-104108.jpgAll the restaurants made me realize I hadn’t eaten anything, so definitely time to turn around. As I was running by a store window I caught a glimpse of myself and realized: it’s the first time I’ve been able to run with a real pony tail!

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Kind of silly, I know, but a milestone that made me smile… And as I ran I had various aches and pains – first my knee, then my hip, then my ankle, and always slight throbbing on the right side of my chest, but all things I can work through. I think my body is just shocked it’s moving again!

I made it back, slowly, but having put the first 3.1 miles on my new sneakers – so basically a 5k. Not bad for the first venture out. It will be a long road to my goal of a half marathon this year, but I know I can do it. And hopefully no more start/stops in the foreseeable future…

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My friend Lisa had her first chemo session at Dana-Farber yesterday. I think I was more nervous for her than I was when I went through it! There was no need, though, as she is one of the bravest, most positive people I know. There is no way she’s going to let this stupid cancer mess with her and her fabulous family. Frankly, cancer chose the wrong woman when it entered her cells.

But because I was nervous, I wanted to make sure I passed all I learned through my experience on to Lisa. Not wanting to forget anything, I made a list (on a bright pink post-it note, of course):

Lisa

  • All different
  • Tired
  • Food tastes
  • Eating/weight
  • Eyelashes
  • American Cancer Society (Wig website/Look Good, Feel Better)
  • Wig fitting
  • Lymphedema (sleeve/massage)
  • Insurance
  • Nails
  • Super B vitamins
  • YOU

Pretty random, huh? That’s the thing – so many of the things that are a big deal in your cancer life, you’d never expect. And there is so much happening, so fast, so much to read and absorb, it’s hard to distill what you really need to know. So during lunch, I ran over to Dana-Farber to sit with Lisa and download what I found to be the most important, like…

  • The all important disclaimer that every single person is different. Everyone’s body reacts differently to things – while my arm would get cold while the poison traveled through the IV into my veins, it didn’t bother Lisa. While I loved having my girlfriends at every chemo session (kind of like Sex and the City / Hospital Episode), she may prefer to be alone or just with her family. I was really lucky and didn’t get as sick as I expected from the chemo, and hopefully Lisa will be the same, although I have friends who didn’t want to do anything but sleep through it.
  • You can’t anticipate if you’ll lose or gain weight. Right after my first chemo, my mouth got the metallic taste and I thought for sure I’d hate food and lose weight (yay!)… but of course that only lasted a couple of days, my taste buds returned and food was what made my nausea go away. So of course I gained more than 20 pounds. But you know what? It didn’t matter! My mantra was “whatever makes me feel better” – which included food and retail therapy. And yes, I’m still losing those last couple pounds and trying to pay the credit card bills, but heck it was worth it, because those things made me feel better.
  • Part of that retail therapy were my many wigs, which I passed on to Lisa yesterday – and encouraged her to let her children play with, to help them get used to the idea. She texted me last night that her youngest put on her Little Mermaid dress with the red wig – love it!!!
  • Along with the bald head, I reminded her that EVERY hair on her body will fall out – not just those on her head. I encouraged her to relish the time that she doesn’t have to shave, as it will be back before she knows it. And I also warned her of what was most traumatic for me: losing not my eyebrows but my eyelashes… I was so happy the day they started growing back!
  • Yes, the stupid cancer can do a number on your self-esteem, but it’s so great that there are programs out there like the American Cancer Society’s Look Good, Feel Better program that not only teaches you how to apply your makeup (including creating eyebrows after yours disappear), but gives you a fabulous bag of goodies! A must to take advantage of.

I could’ve gone on and on, but knew I could never tell her everything, and didn’t want to overwhelm her, especially during that first chemo session. (Luckily, Lisa is happily married, or I’d have had to give all my “single cancer girl” tips, too! 😉 ) Really, everyone who goes through it has a different experience, and all we can do is pass on our experiences, hope the tips help you not feel like you’re the only one going through this and reduce the surprise of things people didn’t warn you about. And that’s the number one thingto remember: it’s all about you.

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I love lists. Nothing helps me feel more organized and in control than making a thorough list. I make lists for everything: to-do lists, topics I want to cover in this blog, places to visit, lists for Nick. And I write the lists on everything from napkins to the back of receipts (and sometimes even in my iPhone) and hopefully they eventually get transferred into my Arc notebook (best invention ever: moveable pages, so I no longer agonize over what to write on the first page). And it’s the time of year for the list of all lists: New Year’s resolutions.

Before I jump into my latest list focused on 2014, I want to take a minute to look back on 2013. I can hardly believe it’s over! It definitely beat the 2011/12 combo hell year by eons – especially the last few months – but wasn’t exactly a cake walk:

With Nick and Tara, ringing in 2013.

With Nick and Tara, ringing in 2013.

  • It began with me nearly bald, with just some wisps making their way back, and still going through radiation, with one deflated boob.
  • One of my dear friends became a US citizen, at an incredibly moving ceremony at Faneuil Hall, which I was so honored to witness.
Boston, February 9. 2013

Boston, February 9. 2013

  • My birthday was marked by one of the year’s biggest blizzards – an appropriate end to my hellish 38th year – and getting to reinflate my right boob.
Disney March 2013

Disney March 2013

  • Celebrated new beginnings (and the end of treatment other than Tamoxifen) with Kevin, Tara, Nick, Mike, Shannon, Julian, Janie, Monique, Steve and Kelli, and many other family and friends in fabulous Walt Disney World.
Pre-marathon breakfast in Ashland with our Warrior paint on!

Pre-marathon breakfast in Ashland with our Warrior paint on!

  • April brought incredible highs and lows with our Genzyme Boston Marathon Team fundraisers and celebrations, and then the shocking tragic end when the marathon was viciously cut short for the team, Tara and thousands of others. It was the scariest day of my life, as I know it was for so many others.
One Fund fundraiser at Towne, April, 2013

One Fund fundraiser at Towne, April, 2013

  • And less than two weeks after the marathon, Andrew and I threw together a fundraiser for the One Fund that brought in more than $3,000 for the victims.
BAA 10k, June 2013

BAA 10k, June 2013

  • I ran my first 10k (Thanks Lisa!), and learned to deal with lymphedema. (Note to self: Don’t forget sleeve when running!) I also learned to love headbands – anything to control the uncontrollable curls (but ever thankful for any hair!).

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  • It was a summer – a year, really – of incredible concerts with my best friends and family.

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  • Fall brought the Jimmy Fund Boston Marathon Walk (thank you so much to all who sponsored us!!!) and Paris.
  • Of course, it also brought the month of Pink – and I was so thankful so many family and friends joined me for many of the walks, runs, fundraisers – and to cheer me on while I got my first tattoo!
  • Both sets of my parents celebrated 30 years of marriage – and I couldn’t be more thankful for all four of them, and that they each found each other. I know I wouldn’t be me without all of them (or have my two awesome, unique brothers).
  • The Red Sox won the World Series!
  • Several of my friends and family celebrated milestone birthdays and either met, got engaged or married the love of their lives… in fact, I have  (I can’t believe I’m admitting this publicly) Tinder to thank for getting Cory and me together, which really has made my whole life happier…
Best second date EVER!

Best second date EVER!

  • And in December I finally had what was hopefully my final cancer-related surgery: the implants. And I can finally pull my hair back into a baby pony tail. A pretty great way to end 2013…

Now, I’m not one who subscribes to the idea that resolutions are only for January 1. I make them – and evolve them – throughout the year. In fact, I just stumbled upon the list I made on the plane ride home from LA in March 2012, the night before I found the first lump and life changed forever. It’s actually a little painful to glimpse the person I was that day, so innocent of  what was growing inside me. I was thinking about cleaning out my wardrobe, getting my finances in order, running more, getting a healthier love life, career development opportunities. So… typical. Most of the list was simply forgotten, as all of my focus shifted to ridding my body of the cancer. Some of the things on that list – like go to France and join a community board – happened in 2013. Some are just making it back to my list now for 2014 – like get more involved in a communications industry organization and run a half marathon. (Half, Phil, half. Not whole. That’s not on any of my lists!) And others will probably be recurring themes on my lists forever: be healthier (run more, eat better), get organized, spend less.

But this year’s list is different. Yes, I am sure I will have sub-lists with many of those same things on it, but I want to prioritize and simplify my 2014 list.

  1. Live in the present. Cory, his mom and I debated the wording of this one, as he insisted on pointing out that you really can’t live in any other time unless you have a DeLorean and are friends with Doc Brown. But you know what I mean! Don’t dwell on the past and don’t agonize over the future. And don’t live on my phone/computer. I don’t need to see every Facebook, Twitter or Instagram update – constantly looking at my phone takes away from the real life I’m living, and the time I’m spending with the ones I love. Let yourself be in the moment, right now, right here, and enjoy it. Which really leads to…
  2. Slow down. I’m always running around, crazy busy. And it’s not always necessary, or for things that matter.
  3. Spend time with the people I love. That’s what does matter. The people in your life. And I am so blessed to have many incredible people in my life and I want them to know how much they mean to me. And nothing says that more than the gift of your time. I know I am happiest when I’m just hanging out with my friends and family…
  4. Be healthier. Ok, yes, this is on the list above, and is ‘typical’ but I can’t help it. I texted Tara the other day that as much as I hate running, I need it. I’ve been in a bit of a funk lately, grouchy more than normal and it hit me: I am simply happier when I’m running and eating better. So I’m actually anxious for this mandated rest period while my chest heals to end. Of course, I hate the cold, so the real running may not completely ramp up until spring, but I can start eating better and running on the treadmill. It will help make me…
  5. Be a better person. I stole this one from Cory. I love it. It’s exactly what I want to do this year. I want to be a better person for me, and for everyone around me – and ultimately to help make the world a better place. I want to pay it forward for all the love and kindness you all bestow upon me all the time. I’m going to think more positively and mute the negative. I want to learn – both to enhance my knowledge for my career and for enjoyment. I want people to know they can count on me, I want to realize that I don’t need to do everything myself and I want to learn to trust. I want to help people through their tough times, as so many have helped me these last couple of years. Above all else, I want to say “thank you” more, to pray more, and to make sure that everyone I love knows how much they mean to me. Kind of like Live Like You Were Dying, huh?

I know many others are thinking along the same lines as me on their lists this year. In fact, Tara posted a link to this great list on my Facebook page, and she really is right on: Resolving to Care More and Slow Down in 2014 by Doree Shafrir for BuzzFeed. Can you imagine how much happier we would all be if we all had lists like this – and actually followed through with them? I’m going to do my best to live this list in 2014. Please help me – call me out if I’m not living it!

Wishing you all your happiest, healthiest year yet! And I want to hear what’s on YOUR list!

xo

Amy

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I wasn’t going to post about #GivingTuesday. To be honest, I was a little annoyed with all the e-mails that flooded my e-mailbox and solicitations that filled my actual mailbox the last couple days, all begging for my donation. It’s not because I’m a scrooge (although that could be debated) or anti-giving (you KNOW that’s not true), rather because I think giving should be done all year long, not just one day in December. But that’s not what I’m writing to say.

Today one of my friends from high school repeated what I went through just over a year and a half ago: she went to Brigham and Women’s for a double mastectomy because just a few weeks ago, the day before her 40th birthday, she was diagnosed with breast cancer. Not what you plan for 40. Since that day, I have been trying to help her the best I can, answer all her questions, explain to her the reality of what to expect, fill in the details that no nurse or doctor can tell her.

And my heart breaks for her, and her family. I know she is strong, and not only is she going to beat this, but kick its ass, just like another friend from high school is doing right now, busting her way through radiation. (Yay Bonnie!!!!) It’s because her life is now changed forever, and change is never easy. And because this is a never-ending journey that’s going to have a lot more downs than ups for a little while. And that little while will seem like forever…

But she is very similar to me in many ways. She is an incredibly strong and determined woman. She told me from that first day that she was going to kick this and was already ready to have the double mastectomy. She is naturally positive – which is so great not only for her, but her kids and husband. The more she can remain positive, so will they. And, I think tied with the optimism for most important,  she has an incredibly large and loving support system. They will get her through this. I know I never could have gotten through this without all of you…

And I also don’t believe things would’ve been nearly as easy for me if I’d been anywhere else but Dana-Farber and the Brigham. I’m confident we’ve both been in the best hands there. So that is what is compelling me to write on this Giving Tuesday. Maybe you don’t spread your giving throughout the year. Maybe today is your day. If it is, please consider giving to Dana-Farber and The Jimmy Fund – you can even support them by holiday shopping in their giving catalogue. Or, another great related organization that could really use your support is Bright Pink, which is focused on educating and empowering young women about breast and ovarian cancer.

Honestly, there is no shortage of needy and deserving organizations to give to today, or any day. Put your money where your heart is. Think about what really matters. Happy #GivingTuesday.

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“Why, why, whhhhhyyyyy???” I woke up whining. And I hate whining. But it’s also very cold and I hate the cold. And while I love that running lets me eat and helps me not get huge, I don’t love running. (Sorry Phil.) And have I mentioned that I am not a morning person? I thought so. Yet here it is, Thanksgiving morning, when really I don’t need to be anywhere before noon, and what am I doing? Getting up. Early. To run. In the cold. Why? Because this year I can.

I never think of the weather when I sign up for these 5ks. I think of the cause (in this case Multiple Sclerosis – it’s the Boston Volvo Village 5k Road Race for MS) or the other people running (some of my Genzyme Running Team peeps) or the great people watching (people dressed up like turkeys, pilgrims, Indians and I’m sure there will be at least a few Santas).

I did, however, start to think about the weather yesterday, when I heard how incredibly cold today was predicted to be. Andrew asked where and when to meet, and I told him I’d be there if it was above 30 and not raining or wicked windy – I can’t afford to get sick with surgery less than two weeks away. Then, last night when I was snuggled warm in bed, and was thinking how crazy it is to be out in the cold period, I texted Tara.

Me: Remind me there’s no excuse not to run in the morning. I won’t get sick and it doesn’t matter that I haven’t run in two weeks or how slow I am.

Tara: Slow and steady! Something is not just better than nothing, it’s an investment in you. I’m running/walking a turkey trot in the morning. You’ll feel better for doing it.

And I know, as usual, she’s right.

So I woke up and rolled over to check the weather, figuring above 30 and I’m good, since the beams of light shining into my room already told me it’s not raining. And what does the weather say? 30 – and then “feels like 19” – ugh! I could’ve texted Andrew, told him I didn’t want to risk getting sick (which is seriously the big fear in the back of my mind, but also an excuse), but I didn’t. Because then I started thinking about last Thanksgiving.

Last Thanksgiving I couldn’t run, regardless of the weather. Thanksgiving week 2012 I finished my 24th week of chemo. It was the last, but my body ached more than ever, I had tons of numbness and tingling in my fingers and feet, and the lymphedema had just started. And I had radiation still ahead of me. Oh, and I was bald. No eyebrows, no eyelashes and no hair on my head. Running was the last thing on my mind – I was just thankful I could get up in the morning!

So today I am running. Because I can. Because God is good and has given me a great life, and a second chance, and I don’t want to waste it. 2013 may not have been the easiest or best year, but it’s been a hell of a lot better than 2012. I am so thankful for all my family, friends, and work buddies who have stuck by me, encouraged me and even pushed me when needed. And I am thankful for the new people in my life, including someone who makes me smile every day, even when he’s not in the same state! I have incredible hope and confidence that as great as things are now, they are going to keep getting better. And for all that I am beyond thankful.

Andrew just texted.

Andrew: Running?

Me: Yup. Will be there shortly.

So I better stop typing and go freeze, I mean run. 😉 Happy Thanksgiving all! Xo

Post run update: Yup. I ran. And froze. But it was worth it!

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