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Posts Tagged ‘hair’

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! 😉 )

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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! 🙂

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/…/participant-inf…/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 don’t know why, but I’m suddenly feeling shy and hesitant to post certain things. I got the best news in a long time this afternoon and wanted to tell every stranger I walked by that (spoiler alert) I can now get nipples, but as soon as I got home and thought about updating this blog, I got nervous. Then I saw on Facebook “Duke Porn Star on What People Don’t Understand About Sex at Work” and I thought, “Jeesh, if she can talk about that, I can talk about nipples!”

I found the first lump on March 14, 2012 and this Thursday will be exactly two years from the day I received the call informing me that I had cancer. This is, and I think will always be, a tough week for me. But Tara and I often talk about rewriting memories and maybe getting this news puts a new, happier anniversary on my calendar.

Today I went for my follow-up with Dr. H, my super fabulous reconstructive surgeon. As Cory pointed out to me today, I’ve been worrying about this visit for weeks. Even though I’d been told that the right one would heal differently due to the radiation, I wasn’t sure that the way it was healing differently was the right differently. I’ve thought over and over about friends who have had trouble with their implants – one who said it was like a baseball, another who just had it replaced for the third time – for a total of five surgeries in the last 11 months!

So as Dr. H inspected it with his normal dead-pan expression – he must be a great poker player – I mentioned nervously some of the things I’d observed, like some of the scarring being hard in places, and an end that just didn’t seem as healed as the rest, and I asked if it was healing normally or if it was worse. His response? “It’s healing abnormally well!” He explained that it’s actually better than he expected and really as good as we could hope for a radiated breast. Phew!

So then I asked the question I’ve been waiting to ask since the April 30, 2012, when I lost my breasts: “Can I make the appointment to get 3D nipple tattoos?” Dr. H smiled, nodded, and replied, “Yes, you certainly can.” Woo hoo!!! I also found out that I don’t need to go all the way to Maryland for them (although Vinnie appears to be the Michelangelo of areola tattoos and amongst the pioneers of 3D nipple tattoos). Dr. H recommended Juli Moon right down the road in Lynn, assured me he’s never heard anything but good things, and showed me her portfolio.

Needless to say, I called as soon as I got in the door, before I even got my coat off. I didn’t make the appointment yet as I need to check some things with my schedule, but it looks like in early May I will feel just that much more normal again…

And for some of my friends who are just in the beginning stages of this journey – recently diagnosed, just finished surgery, in chemo or radiation – it may feel like forever, but that will be over soon! You’ll be through treatment, your hair will grow back, you’ll regain your strength and so much of your life. It will be your new normal. And it will be wonderful, and you will be stronger for all you’ve been through! And this is all for you! I wouldn’t be on here talking about nipples if I didn’t think it would help answer some of your questions and ease your road ahead! xoxoxo

 

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

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

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

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

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There is never enough time to think or plan. There is always so much going on! When does it ever stop??? I guess that’s what I need to learn: to not let it get that way. To make time to think and plan. Otherwise it will never happen. Of course, we all know what happens to the best laid plans – things like my 2012. But  you can’t let that stop you.

There are such things as over thinking and over planning. I’m constantly coaching my girlfriends (and reminding myself) not to over-analyze things their boyfriend/husband/lover/dream boy does – we’re never going to figure them out, anyway. And sometimes when you over think a decision you end up with the wrong one – sometimes you’ve just got to go with your gut. Over planning is something I can definitely fall into. Nick was telling Cory the other night, “Just wait ’til you go on vacation with her! She’ll plan your every second and have you going so fast, you’ll never be able to catch up! You should’ve seen Gramma and me trying to keep up with her in Rome.” And my mom chimed in, “That’s why we just gave up and went to the pub.” I admit, I was bad on that trip – and I vow to never over plan a vacation like that again!

What I have to be careful of now is to not over plan my life. I am so thankful to have my life and energy to really live it (and my eyebrows, eyelashes and hair on my head), that I’ve had a tendency to say “yes” to most everything, and to try to fit everything in. I’m always going, going, going, when one of the things I vowed less than a month ago was to slow down. (I think I need to print my resolutions and keep them with me to make them actually stick…)

I did pass up a few things this week, like I resisted buying concert tickets to see shows I’ve already seen – I don’t need to see every country show that comes to town! What I didn’t pass up were things that really matter to me:

  1. I signed up for the BAA Distance Medley. That is the BAA 5k in April (two days before the marathon), the BAA 10k in June and the (GULP) half-marathon in October. There it is – I said it in my resolutions and now I have a date to work toward. And boy do I have work to do! I haven’t been running much since I hate the cold, and I found out that they have a mandatory finish time of two and a half hours. That means I will have to cut my 13 minute plus mile down to 11:45. We’ll see… luckily I have connections with a certain running team and trainer who I am sure will give me a few tips…
  2. The second thing that I didn’t pass up actually caused me to tear up. I received an e-mail from Olivia Achtmeyer inviting me to be a model at this October’s Runway for Recovery event! I don’t think I’ve been to a more moving fundraiser than Runway for Recovery 2013. Seeing all those women (and some men) with their families, celebrating the survivors and honoring those they’ve lost, in such a supportive, energetic environment – I can’t even do it justice trying to describe it. Go to the site and check out the  video. And mark your calendars for October 16, 2014 to see me walk (dance, strut, I don’t know – just hopefully not fall!) down the runway at the Revere Hotel in Boston, all to raise money for children who’ve lost their mothers to breast cancer. I can’t think of a better way to celebrate my second year of survivorship.
  3. Finally, I am going to book a flight to Florida for a few days to see my Dad, Maggie, Steve, Kelli and my crazy handsome nephews. I miss them and don’t see them enough. And there’s never enough time or a good time – so sometimes you just have to make time!

These are the kinds of events I’d like to fill my calendar with…

 

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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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“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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With Joncille and Aunt Patsy, October 2011

With Joncille and Aunt Patsy, October 2011

I. Hate. Cancer. I want to scream and cry and hit things. But none of it will bring my cousin back.

I found out this morning that my cousin Joncille – my dad’s cousin, so my second cousin if you want to get technical – passed away. She gave in to stupid cancer. She has been suffering off and on for years, and, according to my uncle, didn’t want to fight any more. I was shocked.

I got to know Joncille when I visited her and her husband in Sugar Land, Texas, on my road trip. (You can read about it here: https://amysamerica.com/2010/11/09/finding-my-roots-on-day-61/) They welcomed me into their home with open arms and I couldn’t have felt more at home. It was like we were long lost friends. It was actually the beginning of a great friendship. Joncille was a wonderful support through my treatment. A constant cheerleader, encouraging me to remain positive, to trust in God and to know that I really would get past it all.

“I would like you to know, though, that this too will pass, and you will move  through this hardship one day at a time and in the bright future it will seem  like a bad dream,” Joncille wrote to me – and she was right. She sent me love, thoughts and prayers for strength, courage and healing. And they gave me strength and will to continue to plow through treatment.

“…grab hold of the positive things. Doing that will absolutely save your life and your sanity,” she wrote to me.

“From one who knows, bald ain’t too bad. One swish with a wet wash cloth and you have washed, dried and styled your hair and are ready for the day. And again,  from one who knows, it grows back.” Yup, right again.

And when I found out I did, in fact, need radiation, Joncille gave me a new way to look at it: “I do want to warn you that when you first see the tattoo that  marks the spot to radiate, you will feel that you have been marked as a CANCER  VICTIM, but YOU ARE NOT!!!! They are marking a survivor. I knew a radiologist many years ago that envisioned the power of the Holy Spirit entering  her patients as she applied the radiation. I held that vision in my mind  when receiving mine. I promise that there is a life after cancer.  It  just seems like a never ending saga right now. Hang in one treatment at a  time and before you know it they will all be over.” I adopted that vision from Joncille, and it was such a comfort…

I feel robbed. It’s not fair. We didn’t get enough time together. I want to hear more of her stories. I want to take her up on her offer to return to Sugar Land with my Aunt Patsy, who was one of her best friends. Joncille and Aunt Patsy remind me of Tara and me, cousins, confidantes, travel buddies and dear friends… and that just makes it all hit home even more.

No, life is not fair. I guess we all know that by now. And life is short. So don’t waste it. Spend time with the people you care about. Tell them that you love them. Be a real friend. Cherish the time you have. You don’t know when it will end.

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