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Archive for the ‘Discovery’ Category

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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It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

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