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Posts Tagged ‘chemo’

I know I don’t really blog about my cancer experience anymore, but it doesn’t mean that I don’t think about it every day. Once you have had cancer, it will never not be part of your every day life. Today was a prime example.

I am starting a new job soon and decided it is time to bite the bullet and cut my hair. Nothing dramatic, just a trim to get rid of the dead-ends, but even that activates the butterflies in my stomach. You see, it has been nearly three years since my last haircut. And that really wasn’t by choice.

As most of you know because you’ve been following this blog for most of my journey (thank you!), in May 2012, when I heard after surgery that I would need chemo and would lose all my hair, I decided to have a little fun with it. First, I asked my friend Leane to give me a cute cut, just above my shoulders, so I could donate the hair to Locks of Love. That wasn’t too bad – it was really a cute cut and I knew the hair went to something good.

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Then a couple of weeks later, right before I started chemo, I had her chop it really short. That was more difficult to swallow. I never wanted hair that short… But I knew that I couldn’t handle having long strands falling out.

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And then came chemo. The morning I woke up to hair all over my pillow, I knew it was time. I went to a barber and asked him to shave it bald. He cut as close as possible, but then I had Nick shave it for me.

IMG_0860And that was my last hair cut. Through the bald months, I remember gazing longingly at my friend and sister breast cancer survivor Janie’s very long, beautiful hair on Facebook, and asking her how long before my hair would grow back. She reassured me it would be back before I knew it, but I didn’t really believe her – it seemed like forever…

It’s been two years since my hair started growing back. I was so proud of the little tufts – baby bird hair, as my friend Kim and her daughter Maddie called it.

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As my hair has grown back, I have loved every minute of it. I am so thankful to have hair, I will never complain about it: A bad hair day is still better than a no hair day!

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But I can’t let it just keep growing forever – for it to remain healthy, I knew it was time for a cut. I’ve been preparing myself for this, so thought it would be easy. Nope.

After finishing my last pre-marathon long run (yay! 9 days until I am Running for Rare Diseases in the Boston Marathon!), I took a quick shower and ran down the street to Sanela Salon. I sat down in the chair, looked at Jordan, my stylist, and started to explain to her that this was my first haircut in nearly three years and that it was all new hair. And my eyes started to fill. I promised her I wouldn’t cry through the whole cut! She smiled, said it was fine and we quickly agreed that an inch and some long layers were a good start.

IMG_0852As Jordan started to cut, I actually exhaled. I realized that just because someone cuts your hair, it doesn’t mean it’s all going to fall out. I didn’t even know that’s what I was scared of, it is so silly and unrealistic. But that was the chain of events before, so I guess it was just ingrained¬†in the back of my mind.

Now the first cut is done – and no more tears! I am so thankful to have hair and I love every strand! (And yes, Janie, you were right! ūüėČ )

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p.s. I’d love it if you would add a song to my marathon playlist!¬†Just¬†go to my fundraising page, donate $5 per song, and put the song titles and artists in the comments section. I will add them to my marathon playlist and think of you when they come on while I’m running the marathon! Thank you! (Can’t wait to hear your song choices!)

If you’re going to be at the Boston Marathon, please let me know where you will be along the route so I can watch for you! ūüôā

Can’t make it but still want to track me? (I will start about 11:15 a.m. on Marathon Monday, April 20). All you need is my bib number (My bib # is 28153) and you can either text or email:

    • TEXT – Simply text my Bib Number (28153) to 234567 using your cell phone. You will then receive an sms text response confirmation. You will receive up to 6 texts per bib number. Message & data rates may apply. Text STOP to cancel. Text HELP for help.
    • EMAIL – Go to¬†http://www.baa.org/‚Ķ/participant-inf‚Ķ/att-athlete-alert.aspxSign-up using your mobile phone number for SMS text message updates, or by entering an email address for email updates.

Thank you for your support!!!

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I thought I could get away from cancer. I thought by ending the blog, I wouldn’t think about it every day. Ha! Once you’ve been diagnosed, it doesn’t matter that you’ve finished chemo, radiation, multiple surgeries and been declared “cancer free.” It is always there. With every strange feeling, with each routine health screening, with every glimpse of myself with hair! And now, as many of you know, cancer is my ‘day job,’ too. I wondered if working for an oncology organization would be difficult or depressing, but it’s really the opposite: it energizes me and gives me hope that we can really find a cure (or, realistically, multiple cures)!

If you read my last blog entry, you know that my heart broke over the recent death of a breast cancer sister. This must stop! Help us create happy endings by funding the research needed to find better treatments and cures for all cancers. There are many ways you can help:

Join our fabulous team!!!

Join our fabulous team!!!

  • If you live too far away, are busy that day or just prefer to donate rather than walk, while we will miss your company, we would so appreciate any donation. You can donate by clicking here¬†– and please don’t forget to complete your company’s matching gift request, if applicable!
  • Do you need anything for your kitchen? Shop one of our fundraisers and not only can you get what you need, but a portion of the proceeds will go toward our walk!
  • Have an idea for a fundraiser that can be done by Sept. 21? Please e-mail me and let’s talk!
  • Finally, another of my very favorite events of the year is coming up: Runway for Recovery! Join us on October 16 at the Revere Hotel for my (I never thought I’d say this) modeling debut! Buy tickets here, come cheer me and the other survivor models on,¬†and you will be helping children who have lost their mothers to breast cancer, as well as providing opportunities for health care providers who care for such patients. It’s such an inspiring night – a true celebration of life, sisterhood and survivors.
Last year, I volunteered with Genzyme friends for Runway for Recovery - and excited to be modeling this year!

Last year, I volunteered with Genzyme friends for Runway for Recovery – and I’m excited to be modeling this year!

Please remember, together we really can make a difference and help find a cure! Thank you for helping us kick cancer!!!

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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 Рand, honestly, that will be one of the hardest parts. But you will move on. You will get your hair back Рon 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 Рyour home away from home for so long Рwill 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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Curt Schilling, the former World Series Champion Red Sox pitcher just announced to the world that he has cancer. Tears welled up in my eyes. Not because I know Curt personally, but because I know exactly how he felt when he heard those words, “You have cancer.” It was probably the same way my friend Monica’s mom felt when she was diagnosed. And Greg. And Lisa. And Patrick. And Bonnie. And Giuliana. It doesn’t matter if you’re famous, if you’re young, old, a guy or a girl. The world as you know it has ended.

Cancer doesn’t care if you’re rich or poor. You can’t buy your way out of cancer. And the doctors, nurses, and other healthcare workers at Dana-Farber Cancer Institute, Brigham and Women’s Hospital,¬†and I’m sure other¬†hospitals, treat you the same regardless of your bank account. They want to help you beat it, whether your name is in the newspaper or not. ¬†

I hate that anyone has to go through what I did – and some much worse. If I knew Curt, I would tell him the one thing that matters most: It’s all about your attitude. Stay positive, truly believe you will beat it, and (with lots of prayers, support and your dream team of doctors) you will. Be like Monica’s mom who, when she¬†lost all of the hair on¬†her head, simply said she’s happy to be saving money at the hairdresser. Because when it comes down to it, she’s no different from you, Curt. Cancer doesn’t care. But luckily people do.

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