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Posts Tagged ‘tamoxifen’

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 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 think my head is going to burst. Way too many things running through my mind, and I really can’t focus on any of them.

Today I was 100% focused on helping Tina and family do our best to convince the Parole Board not to release Scott’s killer. It will be several weeks to several months before we will know their decision, but I am confident we did everything possible and pray that justice will prevail.

In fact, I was so focused, it wasn’t until I went to my car and heard the voicemail from the hospital that I remembered I was supposed to call them to confirm my surgery by 3 p.m. Oops. Luckily they were still there and confirmed when I returned their call.

(Pleeeaaaasssseeee do not be offended if you are one of the dozens who’ve asked me this question) but no, right now I am not too excited for surgery. (Tissue expanders are being replaced with implants – finally.) I don’t feel like I have any of that emotion to give. Yes, I am thankful that I will finally get these rocks off my chest and start to feel some semblance of normal again, but no, it’s not the end. It will be months for these wounds to heal, and then I can do the nipples. And even then, although it will be physically over (besides the lovely lymphedema), there will still be somewhere between 4 and 9 years more of Tamoxifen. Honestly, it will never be over, because then, after I go off my wonder drug, I will worry about recurrence…

This feels somewhat like when chemo ended and people wanted me to celebrate. I’m just not feeling it. However, some have suggested a birthday party for my new boobs each year – now that is an idea that makes me smile! I’m not sure how my youngest goddaughter will feel about sharing her birthday with them, but when she’s older she’ll probably get a kick out of it – at least I know I’ll never forget the date! (And it seems so much more fun to remember that date than dates like when I found the lump, got the diagnosis or had the double mastectomy…)

So between the hearing, surgery, birthdays (my 10-year-old Goddaughter and my 102 year-old Nana), holiday parties, decorating, shopping for the holidays, trying to make sure all is wrapped up at work (and push it all out of my mind from now on), etc., etc., I’m fried. I’m actually looking forward to being drugged up tomorrow (uh, well, I guess today now since it’s 1 a.m.). Maybe it will quiet my brain enough that it will reset and all will suddenly be clear. Ha! I can hope, right? At least I know I’ll be amused with mom and Nick taking care of me until Cory’s down this weekend. And with Tara and Mark at the hospital, too, I know I don’t have to worry about anything. And no, Tina, there will be no skyping to laugh at my drug-induced musings – although I’m sure they will have fun telling you all about it…

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One month from yesterday I will be back under the knife (the unbelievably skilled knife of Dr. H) again. This time, rather than shell shocked and scared, I’m eager and excited. Wouldn’t you be, if you lived 24/7 for more than a year and a half with bowling balls (even light-weight ones) on your chest?

I’m so done feeling like a freak every time I hug someone. I do my best to block it out, but it is constantly there, lingering in the back of my mind: “What are they thinking?” “If they don’t know, can they tell?” “Ugh, this just sucks!”

It’s not just the physical feeling that I’m anticipating – to feel somewhat ‘normal’ again – but for that portion of the waiting to be over. I’m not good at waiting. If you know me, you know patience is definitely not one of my virtues, although I try (lots of deep breaths and exhales…). And I feel like so much of this, after the initial rush to surgery, has been a waiting game. Not that anything about cancer is pleasant and how you want it to be, but does so much of it have to take so darn long???

A few people have mentioned how glad I must be that after the surgery it will be over. Oh, how I wish! I’m afraid this is the never-ending gift that just keeps giving. Every day I’m reminded as I take my tamoxifin (for, oh, five or ten years – and don’t you dare get pregnant while you’re on it!). And every time I get a cut, bruise or burn (yes, I’m a klutz) on my right hand or arm and hold my breath, praying it’s not going to swell. And trying to be good and at least wear the sleeve when I run and fly. And worst of all, the voices in the back of my head analyzing my body and pointing out all the symptoms of related cancers – signs of breast cancer recurrence, subsequent cancers or chemo-induced cancers… it’s hard to shut them up sometimes!

So while no, this surgery will not be an end, I do think it’s going to be a great next chapter, giving me a bit more normal in my life, and hopefully quieting some of those voices in my head…

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Sometimes I do want to run away. Run away from what happened. Run away from hospitals. Run away from doctors. Run away from tamoxifen. Run away from the rocks on my chest. Run away from cancer. Run away from reality. But last night, instead of running away from their challenges, history and loss, more than 30 strong, brave women and men walked – strutted, danced, skipped down – the runway to celebrate life.

Runway for Recovery is an amazing event that I never knew about until some of my Genzyme friends, Liza and Jamie, asked me if I wanted to help out at the event. It’s an incredible benefit for families who have lost mothers to Breast Cancer, that I understand has grown over the last seven years from a small local fashion show in the suburbs to the amazing professional gala at the posh Revere Hotel on Stuart Street in Boston.

I loved just being there – helping people check in, buy raffle tickets, work the silent auction – lots of great busy, distracting stuff. Then the lights went down… and while it was incredibly well done, with lots of upbeat music and huge energy throughout the room, I cried as the words appeared on the screen describing the models – survivors, children, mothers, grandchildren – and then the pictures of them and their loved ones.

Some things are just so close to home. My biggest fear when I was diagnosed was never dying. It was leaving Nick alone. I’ve said so many times how thankful I am for every day God has given me with him, and I didn’t (don’t) want that to end – no matter how much I say sometimes that I’m going to strangle him! So more than anything this evening of celebrating survivors and honoring those we’ve lost reminded me of how incredibly thankful I am that I did that self check that night, caught it early, and still get to be here with Nick, and all my family and friends. Why would I ever run away???

 

Genzyme volunteers ready for the night to begin!

Genzyme volunteers ready for the night to begin!

 

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I am frustrated. (Hmmm… I don’t think this is the first time I’ve started a blog entry with those words!) Ever since March 2012 when I was diagnosed with breast cancer and my dear friend Heather said “We are doing the Jimmy Fund Marathon Walk in your honor!” I’ve wanted to walk the full 26.2 miles. Last year I was still going through chemo, and hadn’t even begun radiation, so was only able to do the last five miles with the team. I said this was going to be my year!

Now it’s looking like it’s not. No worries, it’s not severe health related or anything truly bad like that, it’s just about listening and being smart. You see (maybe you should sit down, this is such a shock coming from me), I have a lot planned on September 8.

  • First there is the Jimmy Fund Boston Marathon Walk. I intended to walk the full 26.2 miles, beginning at 6:30 in the morning and guesstimating being done about 2 p.m.
  • Then it’s my cousin Rick’s wedding late that afternoon in Wrentham…
  • And as if that isn’t enough for one day, I need to then get to Logan for a 10:30 p.m. flight to Paris. (Yes, Paris – for work.)

At first it was like “great – you’ll be so tired, you’ll conk right out and sleep the whole plane ride!” Ah, but I can’t! We can’t forget the delightful lymphedema in my right arm! I was told that I will need to be up exercising it and walking around every hour of the flight – oh, because of the fear of blood clots, too, because of the tamoxifen. And this is also if my arm isn’t already swollen from the intense walk…

So my close friends and family have all chimed in. And there has not been one person who is in favor of my doing the whole 26.2. In fact, some have quite vehemently told me I will NOT be doing the full walk. (Note: when told I absolutely cannot do something, that usually makes me want to do it even more.) Arrrggghhhhh!!! Why does it all have to be on the same day???

But none of those dates and times are in my control. What is in my control is my body. And how much I put it through that day (and every other). Sometimes I forget I’m not superwoman. That I have limitations. (I know, this blog is full of shockers tonight, huh?) I honestly don’t want to be in pain or have an abnormally huge right arm for my Paris trip. I want to actually be in the work meetings I will be there for, not in a Paris hospital, simply because I was stubborn and insisted on doing it all.

So that’s that. I will only walk the half marathon: 13.1 miles. I’m trying to get over the feeling of letting people down by not walking the whole thing. I feel like I’m letting everyone down (not really sure who everyone is, but just everyone). The Jimmy Fund. Dana-Farber. Everyone who is donating to my walk. Myself. I know in my head that it’s not true; no one else feels that I’m letting them down. I will keep reminding myself that. And I will remember that, thanks to Dana-Farber and all the awesome doctors, researchers, nurses and everyone there, I am here and able to walk and raise money to help kick cancer!

And thank you to everyone who has sponsored me and my team – Team Inspire Boston – so far. I’m one-third of the way to my personal goal, and a quarter of the way to our team goal, all thanks to YOU! If you haven’t yet donated, please visit my personal donation page – even a few dollars – every cent counts and helps us conquer this horrid disease! Or even better: join us for the walk! Any distance is welcome! Go to Team Inspire Boston to sign up and enter code JF2013 for $5 off the registration fee. We’d so love to have you cross the finish line with us!

Oh, and speaking of Dana-Farber and the Jimmy Fund – it’s the annual telethon, which Nick and I were part of this year… and I guess in a way this year, too. I just saw this pop up in my Facebook Newsfeed from The Jimmy Fund:

jimmyfundtelethonCrazy to think that I looked like that one year ago. Boy, am I happy to have hair again! But if (literally) baring my head helped inspire someone to donate and help #KCancer, it was worth it!!!

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The other night I was at a family party, laughing and eating and chatting away with everyone, when another guest arrived. She walked slowly, tentatively as if it hurt to move. She wore a heavy coat even though it’s August because she gets chilled so easily. And her face was pale, with sunken eyes. I heard one of her relatives whispering about her having just taken a Compazine to try to calm the nausea. 

A feeling of nausea suddenly rushed over me – it brought me right back to one year ago. Getting poked repeatedly to try to find a decent vein for the IV before we gave up and had the port put in. Feeling sick on the way to the hospital just because I knew what was coming. Sitting in the big comfy infusion chair, wrapped in heated blankets. Trying to smile and laugh as my family and friends tried to distract me and keep my spirits up, as the poison rushed through my veins. Feeling loopy on the ride home – and then sick for days.

I am so lucky. That was a short period in time for me – and every day it gets buried further in my past and becomes a smaller percentage of my overall life. This woman – as so many others – is not so lucky. It’s too late, they explained to me after she left. They’ve done all they can but it’s spread so much there’s nothing else they can do, except try to keep her comfortable. My heart ached for her and her family. And my mind raced, repeatedly thanking God for letting me find that lump when I did, and for being able to stop the cancer in its tracks.

I am scared all the time. I, like many survivors I know, see Tamoxifen as my wonder drug. As long as I’m on it, it will ward off the recurrence. I should be safe. But what then? There is no telling. A lot can happen in a few years – particularly in research and development. Maybe by then they will be able to not only detect earlier, but prevent – and cure. So I have hope.

It all takes money, though. This is why I’m doing the Jimmy Fund Boston Marathon Walk on Sunday, September 8. I want to do everything I can to stop this monster of a disease. Please join our team – Team Inspire Boston – and walk with us, or sponsor me. You can walk 3 miles, 5 miles, 13.1 miles or the full marathon: 26.2 miles. No matter what you decide – to walk or sponsor us (and no amount is too small – every cent counts!) – you will be helping to kick cancer and helping people like me (and maybe you) live a longer, happier life. Thank you.

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