Feeds:
Posts
Comments

Posts Tagged ‘lymphedema’

Sinking In

Posted in Cancer, Decisions, Denial, Discovery, family, lymphedema, Planning, recovery, tagged , , , , , , , , on June 9, 2013| 4 Comments »

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…

 

 

 

 

 

Read Full Post »

Missed Spring

Posted in Boston, Cancer, chemotherapy, Discovery, Fundraising, hair, lymphedema, prayer, recovery, work, tagged , , , , , , , , , , , , , , on May 13, 2013| Leave a Comment »

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

Read Full Post »

The Curse is Broken!

Posted in Boston, Cancer, chemotherapy, connections, Decisions, Fundraising, Home, Planning, radiation, recovery, Uncategorized, work, tagged , , , , , , , , , , , , , on April 14, 2013| 12 Comments »

892090_489899534398483_1173673149_o

This morning I ran the BAA 5K. For those not familiar with it, it is 3.1 miles along Newbury St., Commonwealth Ave., and starts and finishes on Boylston St., by the Boston Public Library. In fact, it ends at the finish line for the Boston Marathon, which happens to be tomorrow. While the Marathon has been consuming much of my time – helping our Genzyme Boston Marathon Team with events and fundraising for NORD – the 5K has been looming in my mind.

As many of you know, I only started running in October 2011. I always swore I’d never run. I was the non-athlete who thought she was going to die when they demanded we all run a mile in school. But inspired by both our Genzyme Running Team and my cousin Tara, I ran my first 5K in December 2011 – the very fun but very cold Jingle Bell Run – and participated in Genzyme’s first Rare Disease Day Relay (last three miles) on February 29, 2012. Then, of course, I was diagnosed with Breast Cancer in March 2012 and with the ensuing surgery, treatments and side effects, the running pretty much stopped.

I tried numerous times to get started again – and each time I did, something happened like:

  • I was signed up for the Newport Half Marathon in October, then found out I needed more chemo, so that was out.
  • I signed up for the Jingle Bell Run in December, thinking that was a good way to start over (repeating my first race), then found out I needed radiation.
  • I signed up for the second Rare Disease Day in February, and then got sick just before.

So it was declared that it must be the lingering effects of the 2011/2012 hell year combo and I was cursed. I simply couldn’t sign up for any more races until I successfully ran one again – and luckily I had signed up for the BAA 5K before that third bullet, so we were just holding our breath that nothing would happen before it…

Th BAA 5K is significant to me for multiple reasons:

  • This was the first race I saw Tara run, in April 2011. I took her kids to cheer her on and watch her cross the finish line. I was so proud of her, and it never even occurred to me that I could do the same thing – 3.1 miles seemed like forever! And at that point I hadn’t quite made the connection yet that if I ran, I could eat and still lose weight, so I was still swearing off running.
  • I’ve been supporting our Boston Marathon Team since I joined Genzyme and they are such a fabulous group of compassionate, committed people. While I have no desire to ever run the Marathon (sorry Phil), I love the idea of doing something that ties so closely to the team.
  • It’s one of my favorite courses – it’s basically home. Since it’s right between my last apartment in Beacon Hill and my current apartment in Brookline, it’s one of my main running paths, especially at night. When I first started out, I mainly ran along the Charles River, along the esplanade, but then some runners were attacked there, so I started running up and down Boylston, Newbury and Commonwealth – all busy streets with wide sidewalks – if I was going out after dark. And there’s nothing like window shopping and people watching to make a run fly by!

It’s been harder getting back into running than I thought it would be. I think that’s in part due to the season and the cold – I am always so much more motivated to run when it’s nice out. Lucky for me, spring is now here: the Swan Boats returned to the Public Garden on Saturday, so now it has to be nice!

And the last few weeks I’ve been having shin pain, which I’ve never had before, and have really just been slugging along- much more walking than running… but I was determined, no matter what my pace or if it hurt a bit, to do this race.

And I did (even remembered to wear my compression sleeve), with such an incredible group of supporters: Tara (who in just three years has graduated to running her first Boston Marathon tomorrow!), and some of my Genzyme Marathon Team family: Jessi, Colleen, Kyle, Andrew, Sean and James – and Cian and David from Ireland not only cheered me on, but ran, too! I look forward to cheering you all on at the Marathon tomorrow!  And Nick and Shay even joined us for a celebratory brunch (complete with mimosas for a few of us…) after the race. Thank you all so much for being there for me – it meant more than you know!!!

904463_489904904397946_803652982_o

So now the curse has been lifted, and I am mulling a new goal: Disney Princess Half Marathon in Walt Disney World in February. (If it wasn’t the end of kid’s February vacation, I would definitely do it – but must weigh pros and cons before committing.) In the meantime, I’m going to sign up for a few more 5Ks…

903584_489894771065626_786638931_o

 

Read Full Post »

« Newer Posts - Older Posts »