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Archive for the ‘Decisions’ Category

(It Should Be) No Big Deal

Posted in Boston, chemotherapy, Decisions, Denial, lymphedema, prayer, recovery, work, tagged , , , , , , , , , 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 , , , , , , , , 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…

 

 

 

 

 

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Helping Hands – and Tissues

Posted in Boston, Cancer, Decisions, family, Fundraising, Home, prayer, work, tagged , , , , , , , , , , , , on May 21, 2013| 1 Comment »

We live in a genuinely good world. People want to help each other. They care. I truly believe this. What, you don’t agree? Just look around!

I’ve spent the last hour watching the stories of Oklahoma. The caring, courage and strength shown by everyone from those teachers who did all they could to protect the students huddled with them in the bathrooms to the strangers rushing to the sites just to help anyone they could is awe-inspiring. Then The Voice opened with a somber message for Oklahoma, followed by a special tribute performance by Blake Shelton (who is from Oklahoma) and Miranda Lambert, with the words “To help disaster victims, please donate at redcross.org or call 1-800 HELP NOW” across the bottom of the screen.

oklahoma

I have loved ones in Oklahoma, family and friends I immediately worried about as soon as I heard what was happening, so I posted a message on Facebook. Now the site is flooded with pictures, status updates and prayers for all those in Oklahoma – and I know many of those who posted don’t personally know a soul in the state of Oklahoma. But they care.

On my way home tonight I got a call from my oldest Goddaughter. She was bursting with excitement over her day. She is a sophomore in high school and is involved with Best Buddies, a program for students with intellectual and developmental disabilities. They participated in the Special Olympics today and, as if that wasn’t excitement enough, the Franklin Police Department gave them a formal escort back to the school (“Just like celebrities!” she gushed) and then practically the entire school was outside to welcome them back and congratulate the Best Buddies. That’s just nice.

And people don’t just support each other verbally – they open their wallets, too. More than $30 million has been raised so far for One Fund Boston, to help the families of those killed and most seriously injured in the bombings at the Boston Marathon, barely a month ago. $30 million. That’s amazing.

But money can’t buy everything. Dana-Farber recently interviewed me for one of their publications. (This is the blog written based on the full article.) They wanted to know why I agreed to donate tissue. For me, it was a no brainer. Why in the world would I say no? Working for Genzyme, I know the importance of research and clinical trials. I was going to be in surgery anyway, so why not let them take a little more, so hopefully it will lead to improved treatments or even a cure. It won’t hurt me and could help others. Take extra tissue, extra blood, whatever can help!

None of this is unusual. This is every day life. People are genuinely good. They want to help. Don’t let the bad overshadow the good. See the sun through the clouds. Be the change you want to see in the world – lead the way and lend a helping hand (or tissue) when you can. You never know whose life it could someday save: yours, your son’s or your future grandchild’s …

 

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