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Archive for the ‘lymphedema’ Category

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 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 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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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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“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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