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Posts Tagged ‘diagnosis’

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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