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(It Should Be) No Big Deal

Posted in Boston, chemotherapy, Decisions, Denial, lymphedema, prayer, recovery, work, tagged Boston, breast cancer, cancer, chemo, denial, lymphedema, reality, recovery, running, work on July 30, 2013| Leave a Comment »

Yesterday was a beautiful day – the perfect day to run home from work. Nick dropped me off in the morning and I was looking forward to it all day. I was psyched when I was lacing up my sneakers and heading out the door. I even planned how I could make the two mile route longer by running past the BU Bridge and over the Mass Ave. Bridge instead, then back to my place.

Things always happen in threes, right? The first not so great thing that happened was I realized I forgot my headphones. Ugh! I hate running without music! Oh well, I decided that since I run with my phone in my hand, I could just have the music on low and it shouldn’t bother anyone. I ran across the Western Ave. Bridge and down Memorial Drive.

It was a nice run, I was feeling good – and then (number 2) there was the huge flash of lightning and crash of thunder. Oh crap, I thought, I better run a bit faster, since there’s really no shelter, and I’d rather not get struck by lightning…

So I picked up my pace, praying the storm would hold off, when – yup, here’s number three – I tripped on the sidewalk and (in seemingly slow motion) I went flying across the sidewalk. It was very similar to the Christmas Tree Shoppe fall just over a year ago, only this time my knee was spared and it was my iPhone and right elbow that bore the brunt of it.

Thank goodness I was wearing my compression sleeve and glove. It really saved my right arm quite a bit. Of course, now the $200 sleeve is all ripped up and bloody, but I can only imagine how bad my arm would be had I not been wearing it! (And luckily I do have two others.) (Sleeves – not arms.)

This fall should have been no big deal. But when you’re living with lymphedema, the number one thing they tell you is “Avoid trauma/injury” – I’m not even supposed to have manicures (but I do). So really, having a big gash in my right elbow is not a good thing. Not only do I need to take extra good care of it so that it doesn’t get infected, I need to really watch for swelling, too.

I really thought that when chemo and radiation were over, I could go back to regular life. I hate that life will never be normal again. That there’s always something to worry about. That I should wear my sleeve every day (but I don’t). That I need to do my exercises and massage every day (I do try). That I need to constantly monitor every scrape on my upper right side. It’s just so frustrating!!!

But I am thankful. That I am no longer in chemo (and have hair again). That there are ways I can control the lymphedema. That I don’t have cancer any more. So while I wish falling while running was no big deal, I am thankful that I can run at all.

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Sinking In

Posted in Cancer, Decisions, Denial, Discovery, family, lymphedema, Planning, recovery, tagged breast cancer, cancer, decisions, denial, diagnosis, lymph nodes, lymphedema, mastectomy, side effects 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

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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Missed Spring

Posted in Boston, Cancer, chemotherapy, Discovery, Fundraising, hair, lymphedema, prayer, recovery, work, tagged Boston, breast cancer, cancer, chemo, Dana-Farber, diagnosis, doctors, hair, lymphedema, mastectomy, prayer, reality, reconstruction, side effects, tamoxifen 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…