Archive for June, 2012

Where to start… (I can hear Julie Andrews singing in my head: “Let’s start at the very beginning… a very good place to start…”)

The Move

At about this time Thursday night, I was beginning to panic a bit. Mom and I were down to our last couple of boxes and we still had practically the entire kitchen (small as it was, there were plenty of things stored in those tall cabinets!) and my very crowded room. Luckily, Mike showed up with more boxes (my hero!) and we were able to continue our packing frenzy. We finally – after two late night strolls to the package store to procure even more boxes and one to CVS for more packing tape – called it a wrap around 2:30 a.m. Then it was up at 6:30 to finish and get the move done.

I’ll skip all the details and just say that while it took double the amount of time (and hence cost) than estimated for my size place, since I had so much STUFF jammed in there, the movers were great, and we had everything we owned in our new Brookline home by 2 p.m. Nick and I could never have done it without Mom! (Need moving help? We’ll rent her out! 😉 )

The list of things Nick and I want for the new apartment keeps growing – and truly morphed once we had all of our belongings here and saw there’s even more space than we thought. Bistro table and chairs for the patio, coffee table, maybe a new dining table and chairs, possibly a desk for me, a set of wine glasses since mine have almost all broken, new dishes that aren’t chipped … There’s no rush for most, but what I did feel the need to immediately purchase was a fourth bookcase to match the other three I got at Ikea in London. I didn’t want to unpack all my books until I had the shelves in order. So I texted Tina and she agreed to meet me at Ikea.

The Fall

On the way, I made a pit stop at The Christmas Tree Shop to check out their patio sets real quick. FYI, their patio furniture is all connected by little cords on the ground. While walking between, one of the cords caught on my flip flop and – in what felt like slow motion, I went flying through the air, landed on my (you guessed it) right arm, and slid across the sidewalk until coming to a stop by the curb. I just lay there in shock, trying to figure out where the pain was, if I could move and cursing myself for not landing on my left side. I was the only one out there, but a man and his wife were by the door, a few feet away, whispering to each other and watching me to see if I got up. I smiled at them, and pulled myself over to sit on the curb and collect myself.

When I realized how much I was bleeding (palm, elbow and knee), I hobbled inside to the Customer Service desk and they brought out an ancient first aid kit (luckily I had alcohol wipes in my purse since they didn’t have any) and the manager. He took an account of what happened and all my info while I bandaged myself up. And then off he went to have them fix the patio sets to try to prevent it from happening again.

I felt like a pathetic mess. This is not me! What did I do wrong that all these bad things keep happening?! I don’t want to whine, but really???? Tara came up with a theory: June 30 is the last day of it all. It’s the end of the first half of the year. The first half may have sucked, but the second half will be all about recovery. Healing and good things for a change. And while chemo is not fun, it is part of the process and will lead to health. Ok, I’ll buy it. I’m ready for July 1 and all the good stuff!

In slightly better spirits due to only one more not-so-great day if Tara is correct, I got myself over to Ikea and met Tina, who, like any good mother, offered to kiss my boo boos if it would help, then to push me in the carriage when I was having trouble walking and, finally, a piggy back ride toward the end of the long store. I appreciated all of the offers, but declined. The pain worsened as the night went on, and it hurt to straighten and bend it. So, after a brief panic over if this would be the beginning of lymphedema and better safe than sorry, Nick and Tina convinced me to go to the ER. Yet another hospital adventure!

Over the several hours, first in the waiting room and then in our own curtain room, Tina and I amused ourselves people watching and eavesdropping. It was –  to quote one of the EMS guys – a busy trauma night for Boston. We also kept each other laughing and mused over the fact that every time we’re in the hospital together we end up in fits of giggles, which you never hear coming from behind any other curtains. They probably think we’re crazy. We are, but that’s ok.

By 2:30 a.m. we had the answer: radial head fracture – crack in my elbow. I got a sling, pain instructions and orders to make a date with an orthapedic doctor. How many doctors does one girl need?!?!

A Break

While waking up this morning was not fun – neither the hour nor finding out my hair was starting to come out in chunks – it was for a good reason: Vanessa brought our visiting friend Trish over. Trish used to work with us at National Grid, and the three of us were Charlie’s Angels. It was so nice just to walk and talk and eat and laugh and catch-up. As with all good friends, it was like no time had passed at all, although the last time I saw Trish was at the end of the road trip, when our visit was cut short because I found out my grandmother had passed away and I needed to get home. There is never enough time, and the morning flew by too quickly. Hopefully Charlie’s Angels will reunite again in the not too distant future – we need Nick to win the lottery so we can start our non-profit PR business that he said he’ll finance!

The Shave

Once Trish and Vanessa left, I took a quick nap and then awoke to realize I could put it off no longer: there was practically more hair on my clothes and bed than on my head. Time for it all to go. I walked down the street to Alton Barbers, giving myself a pep talk along the way. While I felt I had to do it alone, I had all of my friends’ and family’s comments running through my head: bald is beautiful, it’s cool for summer, it will grow back, you’re still a princess, hair is just a pain in the butt, you are beautiful, you have great eyes and an infectious smile, G.I. Amy, big sombreros, be bold, you won’t have to shave my legs… see, I do listen, despite what some people think! 😉

Alton’s was empty when I walked in, except for the woman behind the counter. When she asked if she could help me, I just said, “I need to cut it all off.” She asked if I meant a crew cut or shaved and I said shaved. Her eyes widened, she asked if I was sure and I told her yes, because it would all be gone in a matter of days anyway. She half smiled, nodded in understanding and yelled “Mike!!!!”

Mike appeared from the back, showed me to a chair and the nice woman explained for me. He motioned toward a chair, and I sat while he prepped. My one request: “Can I please not face the mirror?” And he quickly swiveled me around. No one spoke the entire time. And then, after he used the blow dryer to blow away all the stray hairs, I broke the silence by smiling and saying “I didn’t think that hair cut was going to end with a blow dry!” They both laughed and then started gushing about how I have a perfect head and how women’s heads are so much smaller than men’s, how cool it will be for summer and how great I look. I turned toward the mirror and laughed at my bald reflection – so strange!!! I put on my pink Dana-Farber Red Sox hat (they gave me a new one when I was there Thursday morning since the other was stolen), and walked back to my new home.

I am ok. I am better than I thought I would be. I know I’m probably going to panic when I need to get ready to go out to a nice dinner, when I go to work Monday, possibly later tonight and probably a million other times, but for right now, I am ok. And I know I will be. After all, you all keep telling me I’m strong and beautiful, so I must be. Thank you… And Tara, I hope your Second half of the year theory proves to be true!

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It’s happening and it sucks. I woke up this morning and when I finally fully opened my eyes in front of the bathroom mirror I saw that strands of my short brown hair covered the white t-shirt I slept in. Then I got in the shower and it was just like after you get a haircut and you have to wash off the little hairs. Only a zillion times worse ’cause it wouldn’t stop. Every time I touched my head my hand would be covered in hair. I finally gave up, turned off the shower and cleaned the very clogged drain. Who would’ve thought short hairs could make such a big pile?

So I had to pick out clothes that hopefully will camouflage hairs that fall out on them while at work today, and tonight I will shave my head- or I should say, have my head shaved. I don’t want to, but once again I’m forced to choose the better of two evils. Keep fighting the inevitable and have to handle the annoyance and embarrassment of my hair steadily falling out or just rip the band aid off quickly. Better to get it over with and start wearing hats and wigs… ugh.

p.s. sorry to those who tried to read this earlier – I posted it via my phone on the way to work and must have that default to password protected…

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Running isn’t just good for me (and you) physically, it helps mentally, too. Phil always told me that when he has something big to think about, he goes for a run. And he’s right. Even with my music blaring in one ear (I never put both ear pods in – learned that in self-defence class – always stay aware of your surroundings), I can think more clearly and better concentrate on a run. This first run I thought about a million things, but the one that really stands out is my upcoming meeting Thursday morning at Dana-Farber.

I received a letter the other day from the Development office at Dana-Farber, wanting to thank me for my significant donation in December and to find out why I made it – what my story is. And boy, will they get a different story than they probably expect – it’s certainly evolved since I wrote that check! So as I ran, I began to think about what I will tell them.

And halfway across the Harvard Bridge (amongst the ‘Smoots’), I began to cry. I cried as I ran (thank goodness, once again, for sunglasses) and thought about telling them how devastated I’d been in mid-December when my dear school friend Sarah found out that her 10-month-old daughter has cancer – a neuroblastoma in her lower pelvic area and a nodule in her lung. It was so unfair!!!  I thought about the other people close to me who’ve been hit so hard by cancer, like my friend Kristen who lost her brother Greg after his long, brave fight with the disease. And it being close to Christmas, I thought how no one really needs anything more than health and decided to make that donation to Dana-Farber in honor of Mirany and everyone impacted by cancer. I printed out the donation cards from the website and give those to people instead of other gifts for Christmas. And then March came… I cried some more, just thinking about how I’ve gotten to know Dana-Farber more than I ever wanted to.

I am happy to share my story with them (heck, I can just give them this blog address!), my heart just breaks for Sarah, Scott and Mirany’s lives, my life, my family and friends going through this with me, all of us, and wish in this one way we were all where we were last November: blissfully ignorant of this damn thing called cancer.

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I just ran four miles along the Charles. It felt soooooooo good!!! It was my first time running in forever – since just before surgery, which was almost eight weeks ago.  And when I say running, it was back to my very beginning – walk/run intervals of one minute each the entire time. It was also the first time running that I didn’t have to pull my hair back in a pony tail, which kind of hurt, but at least it is easier – no hair in my face! 

As I got ready to go for my run, I had a mini-heart attack thinking my iPod was  also in my stolen backpack, but thank goodness it wasn’t – and that my running shoes weren’t either! There are certain things I HAVE to have with me to be happy and comfortable on my runs:

  • My iPod – can’t run without music
  • My GymBoss – interval timer – best little thing in the world. So simple, it clips on, you can set for any intervals and it doesn’t interfere with your music or phone – only $20 at www.gymboss.com
  • My phone set on MapMyRun so it calculates everything from where I am to how far I’ve run, what my average pace is, current pace, etc. (and for safety and occasional texting)
  • Water – duh, must stay hydrated
  • Chapstick if I can find somewhere to put it
  • Sunglasses or a hat
  • My keys (kind of important to get back in the house) 

I know – who AM I??? Running and I have always had a love/hate relationship. For the first 37 years of my life it was mainly hate. I was never really athletic – was always the overweight young girl (kids called me thunder thighs in fifth grade) and never lost that feeling of being chubby, even when I wasn’t any more – still look in the mirror and just see a fat face. And when we had to run a mile in school, I was always amongst the slowest and wheezing away – long before I had asthma.

But I saw how incredible  Tara looked as she ran (and did pilates and ate right) off 60 pounds in the last couple years and I thought it might just be a necessary evil to try.  And I had been supporting our Boston Marathon Running Team at work and have great role models in Phil, Matt, Kai, Andrew, Steph and others who made it actually look fun.

So in the fall I tried it, starting with a Couch to 5k program recommended by my boss who had recently started running, too. I soon abandoned that for my GymBoss, though as  I wanted to do it at my own pace. It wasn’t easy, but it did make me feel better and I fairly quickly started dropping the pounds – and the dress sizes. Overall, it was more than 20 pounds and about four dress sizes. And that was with hardly watching what I ate at all – just running intervals (usually 3 or 4 minutes run to 1 minute walk for 3-5 miles, 3 or 4 times  a week).  

That was one of my frustrations about this damned disease – that I would have to stop running for a while and I didn’t know if I’d ever be able to really get back into it again – since it took me 37 years the first time! But I’ve actually been chomping at the bit – especially since I heard I had to have chemo and the steroids would make me put on weight, and since I found I still love food, even when it tastes bad during chemo (figures, huh?). I do not want to be fat again. It’s going to be bad enough being bald and pimply (also thanks to the steroids) and not being able to get a good tan. Never mind not having real boobs – I have to do something!!!

So I must run whenever I am feeling up to it. Tara practically glowed when I announced to my wig party friends that Dr. H had given me the ok to start running again. “I never thought I’d hear you say that and sound so excited!” (And Tina and Vanessa just smirked and shook their heads. 😉 ) Actually, it was the very first thing I asked him when he walked in the room and I was so excited I barely noticed the huge expansion syringes.

But boy do I feel the expansions now! As soon as I started the first ‘run’ interval and put my arms in the running motion, it hurt! Especially my right side. But while the pain did stay through the entire run, it actually eased a bit; it didn’t get worse. So maybe the running will help that, too. My feet also hurt a bit at the beginning, but felt better after the first mile or so. It’s funny the things you don’t think about, though – like how it isn’t even easy to do the same pre- and post-run stretches that I did before surgery. I must remember to keep doing my PT exercises – between those and running, eventually my body will be back to normal! (Ok, maybe I’ll need to learn to eat a little better, too – so many things to work on!)

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For the first time in what seems like forever, I woke up yesterday feeling good. With a clear head, feeling hardly any pain (just expansion ones), I actually felt like me. I had energy, I felt like I actually could concentrate and get things done at work, and I forgot about being sick for a little while. It’s only when I catch my reflection in glass that I’m reminded.

I’m excited. I know this is for a limited time, but I am counting on feeling this way until round two starts on July 3. And I am going to cherish every minute. I am so thankful – it means I can really pack and run and work and just be me for the next week and a half!

Tonight I met some old friends from National Grid for dinner. It was so good to catch up with them and enjoy food without being nauseous and have a drink without being concerned about medications and to stay out past 9 p.m. without being exhausted. I even elected to walk home because it was such a beautiful night in the city and I wanted to enjoy every second of this good feeling. And then out of the blue, halfway down Newbury St., a cute young guy stopped me and gave me a flower. I started to say no thank you and then changed my mind and graciously accepted it. Why not? We both smiled and wished each other a good night. A really nice ending to my day – and a sign of good days ahead!

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Today definitely got better than my early morning and T ride to work, which is when I wrote that last post. Many of my closest friends and family joined me at my afternoon wig fitting at Dana-Farber. A picture tells a thousand words, right? So I posted a slideshow below of pictures Tina took during the fitting. Yes, it was hard (teared up at one point, but held strong – and thank you, V, for telling me you’re proud of me – way to make me teary again!), but they all kept me smiling and laughing. Hard not to, with some of those wig choices! I was at times:

  • Kim Kardashian
  • Snooki
  • A retired high school secretary
  • Alivia (we took a pic of me and Nick with another camera, Livy – we’ll send it to you!)
  • Jennifer Garner in Alias
  • A Russian spy
  • Me in 8th grade

I’m sure I’m missing some, but you get the idea. It was fun. And I picked one. And it’s perfectly nice. But it’s not me. I never thought I’d be the type to just go bald and live with it, but I very well may. By the time we got to dinner, I already had the wig tied back in a pony tail. And first thing when I walked in the apartment, I threw it on the table. It feels like a hat. Hard to get used to.

But maybe I will. Maybe I’ll get more. A blond one. A long one. The American Cancer Society has a non-profit wig site which is much more affordable (my insurance covered this first one, thank goodness) and maybe I’ll embrace it and have fun. Maybe test different ones at local bars and see which draws the most attention… It’s not like people who see me every day, like folks at work, will think a wig is my real hair anyway, so why not change it like I change my shoes?

For now, while I still have my own hair (albeit very short), I think that’s what I’ll go with. And we’ll see how I feel each day when I wake up. Because I think that’s all I can do for right now.

But thank you, thank you, thank you, to all who joined me today (especially Hannah, Allegra, Sydney and Nadia – I know this is all very strange for young girls!) and made me laugh and smile, I love you all and so appreciate you taking your afternoon for this! And thank you to those who wanted to join us but weren’t able, both near and far, you were with us in spirit and thought and I hope you laugh at the pictures… xo

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p.s. In between the wig fitting and dinner, I visited Dr. H and got my next expansion – a few more ounces in each breast. Hey: it’s the beginning of cleavage! Very happy to be growing in that area, but already starting to feel the pain. Should be a fun few days – but it’s worth it!

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7:30 a.m. Tuesday

Up two pounds, four pimples and one mouth sore. Down a bit of hair. I don’t want to seem like I’m complaining and I don’t want people to feel bad for me. I just feel the need to document my changing body through this ordeal. So I think I’m going to have a log on the side or top of this blog to track the changes – even though what I’d really rather do is ignore them! But I think that’s probably going to become harder and harder as I see it every time I look in the mirror and I taste it in my metallic mouth and feel it in my queasy stomach. Wish I could be one of those people who loses weight during chemo but instead it looks like all the weight I ran to lose is coming right back thanks to the steroids. Good thing I didn’t get rid of ALL my bigger clothes! On the up side, today I will gain a few ounces in each breast and hopefully find a wig to cover my soon bald head…

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