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Posts Tagged ‘reconstruction’

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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The last couple of nights I’ve woken up in the middle of the night with nightmares. They were very different, but both had loose ties (very loose) with my old life when I lived in Blackstone and got married. I know it’s probably because I’m at that place again – major changes are happening in my life.

Today is two years from the day I had my double mastectomy. I felt like I was one person when I went under the anesthesia and another when I woke up. I mourned the old me for a long time and found that the only way I could cope with being cancer girl was to share my journey and hopefully help others who were struggling through the same shock.

Well, I can’t say I’ve come full circle as I will never be that girl again. Cancer will always be a part of me (hopefully more figuratively than literally). But I am done thinking about it every single day. I’m ready for it to be just a small part of me rather than the main focus. And that’s why I’m “ending” this blog.

I discussed this with fellow blogger Jypsy J. Book last night and she convinced me not to actually end it completely, but to evolve it once again. “Why start over with a whole new blog,” she asked. “You’ve built this one up so much and you’ve already shifted it once from your original travel blog to your cancer blog – just evolve it again.”

So this morning I texted Cory and told him that today, on the two year anniversary of my surgery, I was going to put my blog on hiatus. My phone immediately rang. “This doesn’t mean you’re going to stop writing, does it?” he asked. And that is one of the many reasons I love him.

No, I will not stop writing. I just need to figure out what I really want to write about.  I’ve felt guilty letting so much time go by between these entries – like I’ve let my readers down – but I haven’t wanted to dwell on or analyze every single cancer experience and thought that I’ve had lately. So I know it’s time to move on.

I am going to change the “About” section in the header of this blog to direct people looking for my breast cancer experience to those dates, and the travel readers to the earliest entries. And – probably in a few weeks or months – I will be back with a new focus. Of course, I completely understand if you want to unsubscribe if it’s only cancer-related stories that you’re interested in. (This is starting to sound like a break-up letter…) Otherwise, I hope you’ll stick with me for my next adventure… Thank you ALL for ALL of your love, support, positive thoughts, prayers, kind words and friendship – I never would’ve made it through the cancer journey without every one of you by my side!!!

xo

Amy

p.s. Some have asked why I’m ending this today and not after next Thursday. To be honest, this simply felt right: the day they cut the cancer from me. Everything won’t be done next week – I still suffer from lymphedema; I am on Tamoxifen for another nine or so years. But I leave an open invitation for any breast cancer sisters who want to know about the 3-D nipple tattoos to e-mail me and I will be happy to give them a play-by-play on the entire experience! I am always here to answer ANY questions – big or small – for anyone dealing with breast cancer. The silver lining from this is that I can help others through it, and that will never change.

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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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At least once every couple of weeks, another person tells me a friend or family member was just diagnosed with cancer. And it’s often breast cancer. I honestly had no idea how common it was until I entered the cancer world nearly two years ago. I now know so many (mostly) women who are all at different stages of their cancer journey. I have one message for every single one of you, no matter what stage of treatment you’re at now: you will get through this!

Treatment will end – and, honestly, that will be one of the hardest parts. But you will move on. You will get your hair back – on your head, your eyelashes, your eyebrows, all of it. You will get (if applicable and you choose) new boobs. You will stop feeling so tired. You will start remembering things again. Your head will clear. The tingling will go away. Your visits to the hospital – your home away from home for so long – will grow further and further apart.

People will no longer be able to tell by looking at you that you had cancer. In fact, many will forget you had cancer. You will never be able to forget, but you will stop thinking about cancer constantly. You will go a full hour without thinking about it, then a few hours, and then even a full day! (I haven’t gone longer than that yet, but expect eventually I’ll even go a week or more without thinking about it – at least I hope!) Your life will resume a new type of normal, which, if you want it to, can at least resemble your old normal.

For my friends just starting their journey, considering their options and deciding their route: it may seem like forever, but honestly, one day (maybe about two years from now) you will be looking back, amazed at how much has happened in such a short amount of time – and happily moving on with your life…

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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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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 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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