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If you read my last blog entry – Vanessa’s reflections – you know I started this list last month. So now I’ve been 40 for almost a month rather than 9 days, but other than that, everything else still applies…

I have been 40 for exactly 9 days now and it was just when writing that headline that it started to sink in. Wow – I’m 40! There’s just something so different when you write it versus when you say it… Anyway, I won’t dwell in awe (at least not here). I’ve learned a lot in my 40 years – especially the last two spent in the cancer world – and thought I’d share some of it here. No, none of it’s brain surgery (and much of it’s splashed in pretty graphics on Facebook posts), but sometimes it’s nice just to be reminded of the simple things we all, hopefully, eventually come to realize. So here are 40* things I’ve learned in my 40 years:

  1. Smile. Even when you want to cry, scream, throw something, hit someone. Seriously, just smile. It does help.
  2. Don’t overanalyze. Anything. Men/women, doctors’ faces, actions, words, whatever. It’s doubtful you’ll figure out what they really think/mean/intend anyway. Why waste your time?
  3. If you don’t know, ask. Ask anyone anything. It’s the only way you have a chance at discovering the truth. And it’s the best way to learn.
  4. Never stop learning. Take a class, read a book, go to a seminar, join a club. I’m going to learn French (for real this time). And maybe even how to cook. (Nah, maybe I’ll leave that one to Cory.)
  5. There are at least two sides to every story. Even the one I’m telling right now. We all come at things from different perspectives, so can rarely see the full pictures ourselves. (Like Nick says I cook better than I give myself credit for, but I wouldn’t win any contests.)
  6. Speaking of – did you know that you have to enter contests to win?! That includes the lottery. Which probably explains why I haven’t won.
  7. It can take longer to convey your thought in 140 characters than it can in 500 words. (Just ask Jessi!)
  8. Listen. To everyone. Think about what they say. Consider. Absorb. Don’t just rush to respond, explain or prove your own point. Sometimes we need to just listen.
  9. I know that takes patience. Patience is truly a virtue. One I’ve often admitted in this blog that I don’t have. (Just ask Nick – he will confirm this.) But I am trying. If you see me taking lots and lots of deep breaths, you’ll know I’m trying to be patient. It definitely doesn’t come easy to me…
  10. Keep breathing. Literally and figuratively. Yes, there are some things beyond our control in this area – like getting the cancer diagnosis at 38. But there are so many things we can all do to improve our health and that will help us breathe a little easier – especially when walking up many flights of stairs!
  11. Any day can be your last. Or your loved one’s last. So make that day – and every day – count.
  12. Tell people you love them.
  13. Don’t hold grudges.
  14. Spend your time where it truly matters – with the people you love. Yes, we all have to go to work and other obligations, but…
  15. No one really cares if your house is clean. Probably not even your mother. She’d much rather you visit her than stay home scrubbing the tub.
  16. We don’t have to do everything for everyone. Even when we want to do it all, it doesn’t mean it’s the best idea – or even physically possible. So…
  17. Learn to say no. It’s really not a bad word. It’s not even four letters. You can say it nicely: “I’d really love to but…”
  18. Learn to ask for help. Or at least accept help when it’s offered. I was struggling to lug two suitcases and a giant purse the other day when a guy offered to carry one. What did I say? “No worries, I’ve got it.” Why? Why did I say that? Accept the help, Amy!
  19. Be kind. (That means to yourself, too!) Even when others are not. You never know what is going on in someone else’s life.
  20. Share. Share what you learn, share your experiences, share your thoughts, share your opinions. We all have a story to tell. And your story may just be the one that makes someone realize they’re not alone. That’s why I write this blog. If it can help just one person, it’s worth it.

*Disclaimer: I have learned more than 40 things in my 40 years. This is just a sampling of some of my favorite things I’ve learned, not an all-inclusive list.  And yes, I realize there are only 20 above. The final 20 will be in the next blog – an exciting two-part series! 😉

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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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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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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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Friday night I attended the Birds and All That Jazz fundraiser at Tara’s Mass Audubon Sanctuary, Oak Knoll, in Attleboro. It was a relaxing evening of music and mingling (and food and wine), all in the name of charity. (What girl doesn’t love a reason to get dressed up – especially when there’s wine and chocolate involved? See pictures below. ) And luckily, it was a beautiful night, with a warm breeze and what I now know were tree frogs (not birds, as I originally thought), providing a natural soundtrack to the event. I was talking with a few people who commented how much of a better turnout the event had this year, when it occurred to me that I didn’t attend in 2012. I looked quizzically at Kevin and asked “Why wasn’t I here last year?” and he gave me one of those knowing, smiling, “Duh, Amy” looks. Oh yea. Because I got cancer. I looked at the woman next to me, shook my head and simply said “It doesn’t matter. But I certainly would’ve rather been here.”

I missed last spring. Completely. I really don’t remember it. In my mind, it jumped from cold February to warm July. My spring was finding the lump, diagnosis, breast cancer 101, Dana-Farber, surgery at Brigham and Women’s, the start of treatment and my grandfather passing away. It was a gut-wrenching, often medicated, blur.

It makes this spring that much more special. I have always loved spring – it’s the time when things come alive and can begin again. And I am so ready to begin again! I had my first official check-up at Dana-Farber with my oncologist and all seems well. It’s a little anticlimactic, as they don’t really do any tests – it’s just making sure you’re not having any symptoms, and if not, assuming all is fine. (Yes, a big leap of faith – something where you really just need to take deep breaths, remain calm and positive, and pray.)

And all is basically fine. I am having a flair-up of lymphedema, and will call to make an appointment with my physical therapist, but in the meantime have been doing the exercises and wearing the glove and sleeve (even though I can’t stand them) most of the time. Otherwise, all seems ok. The side effects of the Tamoxifin have subsided – not many hot flashes any more – and while the chemo side effects of tingling in my hands and feet continue, I’m now trying a B-complex vitamin to see if it will help. And of course I’m tired – but I can hardly blame the cancer or treatment on that, at least not completely. Nothing is limiting my work or other activities and I am very thankful for that!

My hair is growing, and normal life is resuming. I know that I am blessed. And I am going to cherish this spring and take advantage of beginning again…462395_500062926715477_494659541_o 302907_10201073312822099_616309187_n girls birds

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The following is a guest blog written by my dear cousin Tara, because she knew I just couldn’t tonight. Thank you, T…

A year ago, exactly, Amy asked me to guest blog on AmysAmerica.com. She asked me to write for her the day that she had her surgery, knowing she wouldn’t be up to it that night. I felt a wash of things. Honored she would ask me to write here, a place where she shares her own thoughts, advises, and inspires so many people. Terrified, that something would go wrong in surgery, that it would be worse than we feared. Angry, that at 38 and 39, somehow our lives had taken this unbelievably wrong turn and the girls that grew up pretending to be happy, secure (wealthy… famous…fabulous) adults, found ourselves a little off course, a little scared, and facing challenges we wouldn’t have even known to imagine.

Well, we did it. You did it, Amy. You not only survived the year – a LONG year of surgery and treatments – you did it with courage, with style, with grace, and not just a little tenacity and fervor. 

I woke up and texted Amy this morning: That no matter what happened today, it had to be better than last year. And then, finally, a new month, new us, the more organized, more empowered, don’t f*** with us versions. 

And we laughed. 

And tonight when she texted on her way home from a long day at work, to go home to do more work, to get up to get in early for another long day tomorrow (Because that’s what she does. Well. And loves it), I offered to write again. Not, at the time, realizing that it had been exactly a year ago that I did so. And it just felt right. Because that’s what you do for the people you love, right? You step in, you take a little something off their full plate, anything to share the burden. 

A few weeks ago, I ran the marathon (almost). And I had a bunch of amazing family and friends either there in person or in spirit. And in frustration, adrenaline, and maybe some post-run dopamine influence, I signed up to run the NJ marathon this weekend. I just did it. And when I told Amy, she didn’t ask why, she didn’t tell me I was crazy, she simply asked “want me to book the hotel room?” And I cried (because I’m still pretty emotional over the whole marathon disaster) and texted back “really??? you want to come to NJ” and she wrote “(rolling my eyes) do you really think I’d let you finish your first marathon without being there?” (yeah, I’m crying now, too.)

I guess my long-winded, one year out, post surgery anniversary blog point is this. Things happen every day that we couldn’t have imagined a year before, a day before, an hour before, even. Terrible, horrific things, beautiful, mind-blowing, life-affirming things. We just don’t know. And that’s a lot of chaos and uncertainty. But with luck, you find a few people to ride the crazy roller coaster with and make the best of the worst and better of the best times with. I count myself incredibly fortunate to have some of the best. You at the forefront, Amy Lee. 

I am so very, deeply, to the core, thankful that this chapter is ending. That a new one starts now, that every day you remind me to take the lessons from the past and then file it away, plan for the remarkable things we have yet to achieve, but live in the present and be thankful in this moment.  

Here’s to May 1.

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