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Posts Tagged ‘side effects’

I’ve been so bad – totally procrastinating about updating this blog. I hate it when I do that. So much builds up, and then it weighs on me, and I know I’ll forget something… oh well! Deep breath and here are the high (and low) points:

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  • THANK YOU, thank you, thank you to EVERYONE who donated to our Boston Marathon Jimmy Fund Walk! Whether you donated $10 or $150, every single cent helps in the fight against cancer! Together, Heather, Tara, Amanda, Calley and Mia-Claire raised more than $3,400!!! I’m so proud of us – especially the little girls for joining us and being so fabulous and not only walking the 13.1 miles, but even throwing some cartwheels in along the way! And it’s not too late to sponsor our team – please help the girls get to their $100 minimum by sponsoring them here: Team Inspire Boston. Thank you!!!
  • As soon as the walk was done, Tara and I ran (well, not literally – we took the T…) back to my house, I showered, changed and she drove me to my cousin’s wedding. It was so fabulous seeing some of my family who I haven’t seen in so long, but couldn’t help crying as I left because my time with them was too short – but I had to catch a plane…
  • Tara and Ella were the best chauffeurs and cheered me up en route to Logan. The flight was ok (I fell asleep praying as we went through major turbulence, but hey, we landed, so all was good) and my arm faired pretty well. (Damn lymphedema.) I put my compression sleeve on while waiting to board the plane and I could tell by the look in the eyes of the woman sitting across from me that she knew exactly what it was for. She looked so kind and sympathetic, I both appreciated it and wanted to scream. I hate feeling like the girl who had cancer!!! Anyway, after all the walking and the flights there and back, there’s not really much noticeable swelling, and only a little pain, mainly in my hand. I have to get back to doing the massages every day, but I haven’t even been doing that. At least I’ve been wearing the sleeve when running. That’s something, right?

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  • Paris: it was a whirlwind work week. I was disappointed by how dark it was in the mornings, so my visions of waking every morning and running along the Seine quickly vanished out the window. I did get one good, five-mile run/walk in on the last day before my flight. It was great, even if the weather wasn’t that wonderful. The conference was really great, though – especially meeting Sanofi communications people from all over the world and hearing about all the great progress we’re making in the healthcare industry. I’m so proud to work for Genzyme, a company that truly cares about making a difference in people’s lives.

Didn’t I write something a little while ago about slowing down??? Hmmm… don’t think that’s happening any time soon…

 

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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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Nick told me that I am the most tense/stressed person he’s ever met. He’ll often come up behind me and knead my shoulder for a second and then just shake his head. So I made an attempt to de-stress a bit by taking a couple of days off last week, scheduling a massage and going to a couple of concerts with friends.

Well, I can’t say I really succeeded in completely de-stressing, as I worked through one of my days off (although it was nice doing it from the comfort of my home…), and while the massage was nice, I really didn’t feel very different (other than wanting a nap) after. But I did have a great realization while at the massage parlor. They had me fill out a bunch of forms, asking about all sorts of health-related issues, and when I got to the line that said “Numbness/tingling?” I froze. Oh my gosh. No. Really? I wiggled my toes. I touched each of my fingers to my thumbs. And then did it all over again. It’s gone!!!! I have complete feeling back in my fingers and toes!!!! I am so thankful to have another chemo side effect gone! That realization alone was worth the cost of the massage.

I did really relax at the concerts: Kenny Chesney, Eric Church, the Eli Young Band and Kacey Musgraves, on both Friday and Saturday night at Gillette Stadium. What’s better than tailgating, singing (screaming) and dancing with thousands of your closest friends? 😉 Incredible shows – the last two of the tour – and great company!

So while I’m probably still the most tense person Nick knows, at least I am one more step further away from the chemo cancer world…

 

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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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I felt stupid as silent tears streamed down my face as I walked through the bridge connecting Brigham and Women’s, where I’d just seen Dr.H, my reconstructive surgeon, and Dana-Farber, where I was parked. And I was mad at myself for not making it to my car before crying.

This was the appointment where I was supposed to be cleared to have the implant surgery, so I could start to feel normal again, rather than have these two solid rocks sticking out from my chest. But instead I learned that my body just isn’t ready. I quickly explained that I’m seeing a trainer, and my physical therapist, and that I can ask them for exercises to loosen me up, and Dr. H looked at me sympathetically and said ‘Its not you, dear, there’s nothing you can do. It’s just your body, your tissues just aren’t loosening and ready.” Then he patted my arm, smiled broadly and said ” If you do find a way, let me know – I have 250 other patients who would love it!”

I hate it when there is nothing I can do, when it is completely out of my control. I left feeling totally and utterly disappointed. I really thought the end was somewhat in sight. But now I can’t even think about scheduling the next surgery until I see him again in September. Ugh. This really is the neverending story. Hence the tears. As soon as they started flowing I made a pit stop in Dana-Farber’s Healing Garden, the oasis where I feel a little less stupid crying, and usually can calm myself down.

Why did I feel stupid? Because this is simply a little set back. It’s cosmetic, essentially. And people in these hospitals have so much bigger problems. I am lucky. I am done with all treatment but tamoxifin. My hair is growing back. And I am going to be fine. So really, the tears were unnecessary. I wish my mind could have just convinced my body of that! I guess we can’t control everything. Or, sometimes, anything. And we just have to wait.

When Nick and I both got home tonight I told him my disappointing news. He hugged me and said he’s sorry, but maybe it’s for the best. I looked at him like he’s crazy and he just shrugged and said “Hey, you’re the one who always says everything happens for a reason, so maybe there’s a reason for this.” How can I debate that? I can’t, so I will listen and I will try to be patient. Definitely not one of my virtues…

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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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