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Archive for the ‘Discovery’ Category

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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Ever since my birthday, I’ve been thinking about what to say in this blog about turning 40. Finally, last week, after the idea kept coming back to me, I decided to write “40 Things I’ve Learned in 40 Years.” I wrote 30 of them, decided that it was much too long for one blog entry, and split it into two parts. I was about to publish it when I decided I’d better write all 40 (both parts) before publishing one of them in case something that came at the end would fit better at the beginning, or vice versa. (You writer friends know what I mean!) Since at that point it was well past midnight on a work night, I pressed save and closed the laptop.Fast forward to the next day after work. It was my first night in a long time that I got to just go home after work (at a normal hour) and actually have a few hours to do whatever I wanted (rare, precious time). I decided what I most wanted was to go through the bags of gifts from my birthday and write thank you cards. (Kristen, you’ve taught me well.) More than anything, I love the thought put into the cards and gifts from my dear friends and family. And amongst them all, I found a letter that I hadn’t seen in the craziness of the party. I opened it and laughed out loud! It was from Vanessa: a list of things she’s learned since she turned 40! I figured it would be similar to the list I was making, but was surprised to find that it’s not. In fact, the things I’ve learned in my barely 40 years hardly overlap with the things she’s learned since turning 40. I thanked Vanessa profusely for sharing her wisdom and asked if I could include it here – and she said yes. Thank you, Vanessa! Enjoy all! (And I’ll share my 40 things later this week…)

February 3, 2014

Happy Birthday, Amy!

Hi there,

I’ve been thinking about what to buy you for your birthday for some time now. I thought about donating to causes and non-profit organizations in your name. I thought of milestone pieces of jewelry. I thought of kitschy-mementos to honor your birth year. They were all good, but they all rang hollow. Besides, what do you buy for the person who has everything? I mean, turning 40 is huge.

That’s when I knew what I would get you. Turning 40 is a distinct rite of passage. If you’re a woman, that journey is colored with complexities, shaded by doubt and confronted by bold dreams. I wish someone had told me that instead of texting me an unimpressive nursery rhymed, rhetorical “Lordy, Lordy, looks who’s 40” message.

So my friend, even though I’m only six months ahead, here’s what I’ve learned since turning 40:

  1. Life is just beginning; it’s not a cliché. Long before I heard Oprah bellow to her audience about turning 40 and hearing celebrity guests like the late Nora Ephron talk about using scarves to cover “your aging neck”, I never understood what the fear was all about. We’re fortunate to be alive at this time. Yes, the glass ceiling has cracked a bit and salaries of professional women have shown marginal increase, but our generation is not judged as failures if we’re not draped on some dashing Prince Charming’s arm by a certain “magical age”. No, women like us are leading the way. We may not have all gone on an 83-day-long cross-country-trip across the U.S., but we’re living by the rules we set for ourselves.  Sometimes there are stops and detours in that journey. When cancer threw you a curve ball, you stared that sucker down and kicked it in the groin—grinding in your stiletto for good measure. You have your whole life ahead of you. A life that’s yours to do what you want, and pursue your dreams and goals.
  2. It’s OK to rid yourself of toxic people. The key to enjoying the next 40+ years is peace. You can’t get peace if your life is full of toxic parasites who inject negativity and depression into your world. We all have them. They masquerade as fun friends, rational-thinking relatives and the occasional acquaintances maligning you with misguided, misinformed missives of mayhem. One of my friends at church reminded me I told her to be careful about who she allowed to “speak into [her] life” years ago.  It’s still true today and it’s a creed I live by now. Hurt and hurting people flock to those with similar experiences and/or those who seem to have it all together. That’s understandable, but it’s exhausting when those individuals drain their sorrows into your generous heart and are too caught up with their own needs to discern when you need an ear. I’ve learned to let them go. I need to be surrounded by people of like mind and attitude who know that friendship is a two-way street. One shouldn’t be forced into caring. Instead, true friends care and are there without being asked because they value precious people.
  3. I’m a big girl and can make my own decisions. For the longest while I felt like I needed to poll those around me, or get the opinion of those whom I respected, to help my decision making. As I’ve gotten older and my outlook has changed, I’ve come to the realization that no one will live with those decisions, but me. What galled me was people’s need to frequently correct and critique my decisions when they didn’t line up with what they would have done. I’m empowered now to kindly, and if need be, curtly thank them for their opinion and reinforce that as an adult I’m entitled to make my own decisions and choices. I may decide to revisit an old relationship or venture into something completely atypical from what my personality dictates. If my decisions come with mistakes, bring it. I’m a big girl and I can handle it.
  4. Turning 40 is empowering! Do you remember how you were in every past decade of your life? Did uncertainty and doubt overshadow decisions you made? Perhaps you found yourself subconsciously acting a certain way to fit in with friends, or saying particular things to impress peers or and even dressing to please a crush or a boyfriend? One of the many great things about turning 40 is you no longer feel pressured to do those things. I frequently hear myself saying, “I’m at an age and stage in my life where I don’t feel I need to (fill in the blank).” It is so liberating.
  5. Even though I’ve accomplished a lot, I still want to do more. Like me, you’ve done more personally and professionally than many people you know. If others were to view our dossiers, our lives would look successful, glamorous and extremely well-traveled. And that’s understandable, but I still feel as though there’s more to do. I still feel unfulfilled in some areas. For a while I listened to others who told me I “was too hard” on myself. Then I realized that I’m not hard on myself. There are things I want (or need) to do. And that’s OK. I’m constantly looking to expand my horizon and conquer new things. We shouldn’t feel guilty about wanting more from life.
  6. Put God first. I don’t consider myself religious, but I have a personal relationship with God. I pray or talk to Him as much as I can. I even have “date nights”. I know. It sounds hokey. Basically, I block off an evening, prepare a fantastic meal, key up some worship music on my MP3 or laptop and spend my evening listening to music, reading my Bible and pouring out my heart to Him. Sometimes I cry. Sometimes I yell. Sometimes I’m quiet. Whatever I do, I am always deeply satisfied after. You’ll find your own way, I’m sure. But who better to pour out my hopes, dreams and fears to but the One who made me? I couldn’t have made it as far as I have without Him and I tell all my friends the same. Put Him first and you’ll never regret it.

I’m sure you’ll receive numerous gifts and well-wishes. You’ll be surrounded by those you love and who love you just as much. When everybody’s gone and you’re left with your thoughts, I hope you’ll find these observations useful.  Like I mentioned before, we are alive in a time in history where the world is literally at our fingertips. All you have to do is pick up your phone or tablet and you will instantly have access to review opportunities and dreams before you pursue them. You’ll chart your own course, make your own rules, and live your own dreams. So happy birthday, my dear, the best is yet to come!

– Vanessa

With Vanessa at my 40th birthday party.

With Vanessa at my 40th birthday party.

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

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

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

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

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

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

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“All you can change is yourself, but sometimes that changes everything.” – Anonymous

The past two weeks I’ve been beat up, beat down, sucked in, worn out, and had more extreme highs and lows than a rollercoaster  – definitely felt the whiplash. Worst of all, it did such a job on my self-worth that I didn’t even feel like or recognize myself. I felt helpless and lost. (And dumb and unattractive and naïve and…) And I just went with all of it. Let it happen. I was at the mercy of the people and circumstances around me. And I was seriously worried that I’d never be me again – I didn’t know how to get the strong, independent, positive woman back.

“Time heals what reason cannot.” – Anonymous

I know it was not a very long time (although it felt like years) but somehow, I’ve snapped back. I feel like me again. I don’t know if it was time, telling my story (see below), the tattoo (also below), the Red Sox going to the World Series (woo hoo!!!) or what, but somehow this morning I woke up for the first time like “I’ve got this.” I can take my life back. And I’m going to.

“When writing the story of your life, don’t let anyone else hold the pen.” -Harley Davidson

I love that quote! It’s so true. Take control. Be you. Don’t let anyone else dictate your happiness, make you feel like you’re not good enough or think that there is anything you can’t do. (And don’t ever try to ‘fix’ someone else’s life – especially if they don’t want to be helped.) I used to know (and live by) that, and now I’m going to again. To be honest, I’m a little ticked off that this happened during the month of pink, when there were so many events with such great people, but then again, maybe it was keeping busy and doing all the events and seeing everyone that helped me snap back so quickly?

This has been a whirlwind of a Breast Cancer month:

  • Started at the end of September with the Komen walk, followed by the incredible Runway for Recovery event, and then the American Cancer Society’s Making Strides for Breast Cancer walk – all of which I already blogged about.
  • Last weekend the fun continued in Providence at the Gloria Gemma Flames of Hope run/walk. Alicia pulled together a team, including her fellow Rhode Island Charity pageant queens, their families and my friend Abby. In addition to all of us walking in the 5k, Alicia even ran the Pink Pump Palooza 50 yard dash in heels!
  • Friday mom joined me for Dana-Farber’s Breast Cancer in Young Women Forum. Because of how I’ve been feeling, I couldn’t even focus or make myself really think through what I was going to say until that morning. I’ve been in such a fog, I really didn’t want to do anything except what I had to. Luckily, I knew I had to do this, so that morning, mom and I left early, went to Dunkin Donuts and thought for a few minutes over tea. Then I told her, “Ok, I’ve got it. The most important thing is to have 1-3 main points. Here’s mine: You’ll hear lots of stories today – that’s the best part of days like today. But the most important thing to remember is it’s all about you. Everyone is different. Some things work for one person, but not another. You are unique: do what’s right for you.” And then, thinking through my story and all that happened since March 2012, I came to my second point: “It doesn’t matter if you’re married, single, have children or live alone – surround yourself with people who love you, who make you happy. That’s what got me through – all the incredibly loving and supportive people I’m so lucky to have in my life. And let them help you – it will help them through it, too.” (See, Tina, I do listen sometimes…) And the talk – and the day – went well… and I started to feel a little more like me…

photo (24)

  • Friday night, while not breast cancer-related, I went to Salem with friends from our running team, to experience some of the haunted happenings. I know that just spending time with these friends who inspire me with their marathon runs and overall kindness and determination in life helped me feel more like me again…

halloween

  • And finally, Saturday night was one of my favorite nights of the year: the Nashua Harley-Davidson Fashion Show and Live Auction Making Strides Against Breast Cancer Benefit. As you’ll see in the pictures below, Nick, Alicia, Vic and I all had a blast! Robin Dixon, of Nashua Harley-Davidson, is such an amazing supporter of the American Cancer Society and makes the event even bigger and better each year! In addition to winning things in the raffle and auction (and losing a few things like my TV, darn it!), we had fun with people asking to wear Alicia’s crown, the great food and… my first tattoo! Not only did I do one, but Nick also got a pink ribbon – his with wings…

So I’m not sure what actually did it, but somehow, thank God, I am me again. I love my life, am so blessed by all the fabulous people in it, and I will not let myself get lost so easily ever again.

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So the disappointing news about the surgery wasn’t the worst thing that happened last week. In fact, my conversation on Friday with my physical therapist put the one with my reconstructive surgeon to shame.  It’s taken me until now to digest it all – in fact, I don’t think it’s really sunk in yet, but I decided I need to write about it to get it out of my system and start the new week fresh.Long story short: she told me that I am supposed to wear the damn sleeve and glove every day for the rest of my life. Yes. Every. Single. Day. Forever. You can imagine my response. In my head: F@$% that! In reality: “You’ve got to be kidding me?!” Her response? “No, I am completely serious. You’ve see what happens when you don’t wear it – the swelling comes back. You need to wear it to keep the lymphedema under control.”

The miserable glove and sleeve

The miserable glove and sleeve

She went on to inform me that while she “didn’t want to scare me” if it got worse, she and I would become best friends because we’d need to go to wrapping in which case I would have to go there every day for about two weeks, 7-8 hours a day to have my arm wrapped the entire time. You’ve got to be kidding me. Frankly, this is all way worse in my mind than cutting my chest off.

So every day, must do the massage, and the exercises, and wear the sleeve and glove. Ugh. I honestly can’t comprehend this right now. Just when I think I get to go back to being somewhat normal. I just want to scream.

I came home rip-roaring mad (it didn’t hurt that a family member had called and given me other disappointing/frustrating news), and told Nick all about it, ending with, “They expect me to wear it every day for ever – I don’t think so!!!” (Maybe there were a few bad words mixed in there too…) And once again, Nick just looked at me and said, “Mom, don’t be stupid. If it’s going to help you, you do it.” Ugh. When did he become the parent?

I know logically that he is right. But I don’t want to. I hate the sleeve and glove. They’re grungy even though (or because) I wash them. It’s summer and they’re hot. Mom is going to try making some lightweight, fashionable sleeves to go over the medical sleeves (which are really expensive or I’d get all different ones like those from Lymphedivas). And they make it obvious something is wrong with me. People are always asking me now what the sleeve and glove are for, and because explaining what lymphedema is can be confusing, I just say “cancer related – my arm swells.” And it used to be when they would ask how long I have to wear it for I would say “just a little longer.” Not any more…

So I need more time to let this sink in. I’m not going to say I’ll wear them every day forever, but I won’t rule out wearing it the majority of the time. We’ll see. I have a lot of research to do…

 

 

 

 

 

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