Feeds:
Posts
Comments

Archive for the ‘family’ Category

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 »

Not Yet, AKA Be Patient

Posted in Boston, Cancer, chemotherapy, family, prayer, radiation, recovery, tagged , , , , , , , , , on June 4, 2013| 1 Comment »

I felt stupid as silent tears streamed down my face as I walked through the bridge connecting Brigham and Women’s, where I’d just seen Dr.H, my reconstructive surgeon, and Dana-Farber, where I was parked. And I was mad at myself for not making it to my car before crying.

This was the appointment where I was supposed to be cleared to have the implant surgery, so I could start to feel normal again, rather than have these two solid rocks sticking out from my chest. But instead I learned that my body just isn’t ready. I quickly explained that I’m seeing a trainer, and my physical therapist, and that I can ask them for exercises to loosen me up, and Dr. H looked at me sympathetically and said ‘Its not you, dear, there’s nothing you can do. It’s just your body, your tissues just aren’t loosening and ready.” Then he patted my arm, smiled broadly and said ” If you do find a way, let me know – I have 250 other patients who would love it!”

I hate it when there is nothing I can do, when it is completely out of my control. I left feeling totally and utterly disappointed. I really thought the end was somewhat in sight. But now I can’t even think about scheduling the next surgery until I see him again in September. Ugh. This really is the neverending story. Hence the tears. As soon as they started flowing I made a pit stop in Dana-Farber’s Healing Garden, the oasis where I feel a little less stupid crying, and usually can calm myself down.

Why did I feel stupid? Because this is simply a little set back. It’s cosmetic, essentially. And people in these hospitals have so much bigger problems. I am lucky. I am done with all treatment but tamoxifin. My hair is growing back. And I am going to be fine. So really, the tears were unnecessary. I wish my mind could have just convinced my body of that! I guess we can’t control everything. Or, sometimes, anything. And we just have to wait.

When Nick and I both got home tonight I told him my disappointing news. He hugged me and said he’s sorry, but maybe it’s for the best. I looked at him like he’s crazy and he just shrugged and said “Hey, you’re the one who always says everything happens for a reason, so maybe there’s a reason for this.” How can I debate that? I can’t, so I will listen and I will try to be patient. Definitely not one of my virtues…

Read Full Post »

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 …

 

Read Full Post »

« Newer Posts - Older Posts »