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Archive for November, 2012

As I sat down in my reconstructive surgeon’s waiting room at Brigham and Women’s this afternoon for the first time in months, I had this strange surge of emotion. My mind immediately jumped back to May when I was sitting in the very same seat, furiously texting with the guy I was seeing. I remember fighting back tears as I typed, so depressed because everyone else in the waiting room was holding the hand of a significant other except me – and part of me blamed him for not being there even though I didn’t even tell him I had the appointment that day. I knew that didn’t make sense, but not much made sense at that time.

Sitting there today, I thought of how far I’ve come. Today I breezed in there smiling, confidently bald (can I still call it that with the baby hair on my head?), rushing straight from work; in stark contrast to months ago when I slowly trudged down the hospital hall in sweats and no makeup, feeling like all the life had been sucked out of me – and unable to see beyond the devastating moment.

While I don’t love my current situation, I accept it. While I don’t like being bald, I can handle it. And while it would be great to have some incredible guy by my side, I would rather be alone than with the wrong one, or one who doesn’t want to be here.

I’ve even come to terms with radiation. Today was the first step: partially deflating my left breast so it doesn’t get in the way during radiation. I talked through things with Dr. H and he assured me that while this will be longer, it’s the right order and he will do everything he can when it’s his turn. I felt better when I left – although it’s hard getting used to one smooshy breast (like those squishy gel toys) and one that’s hard as a rock! February can’t come soon enough – that’s when I’ll visit Dr. H again and get reinflated. And hopefully I will be able to schedule the surgery then, too, depending how I did through radiation – which I am determined will go well.

For at least the moment, my overwhelmingly positive and determined attitude has returned. I started today practically giddy (I even warned several people). Why? Because today is Tuesday and for the first time in months, I got to go to work! (AKA – No more chemo!) And not only did I get to go to work, but I started the day welcoming people at New Hire Orientation, which I always find invigorating. So by the time I was back in my office, I was raring to go! If only I could bottle that feeling…

Giving Tuesday

I couldn’t let today go by without mentioning Giving Tuesday. Unlike Black Friday and Cyber Monday, this is a day to use your money to make a real difference. It doesn’t have to be today – I know, it is quite late – but can be any day of the year. In fact, I will once again be purchasing most of my Christmas gifts online here:

  • Dana-Farber – Our Giving Catalog is full of gifts that benefit adult and pediatric patients and advance Dana-Farber’s lifesaving mission. Gifts range from supporting clinical trials to stocking our toy closet.

After making your selection and donation, you can either send someone an e-card or print cards to give as gifts. I think people will appreciate it as much this year as they did last. I know it’s certainly more personal to me this year, and there’s no present I’d rather than this.

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Last night I went to my (gulp) 20 year high school reunion. And I had an absolute blast. The only bad thing was that it wasn’t long enough and many of us couldn’t believe it when the bar was kicking us out because they wanted to close. Of course, Nicole (one of my closest school friends) and I ended up talking even longer in my car until we realized that we better both get on the road before we were too tired to drive. The whole thing wiped me out so much that I slept until 1:30 this afternoon and never got out of my pjs!

I spent much of the day (once I finally woke up) replaying some of last night’s conversations in my head. It was a lot like speed dating, in that there were so many people to talk to with that you mainly had fairly short, but hopefully meaningful, spurts of dialogue. Then something would happen to push you apart, and although you said you’d be back, the time flew by so fast, inevitably that was the end of the discussion. 10 years – which is when most of us were last together, at our last reunion – is just too long. Even with Facebook.

And then there were many that you never even got to connect with – again, because time ran out – and several more that weren’t able to be there at all. So many missed!

But then there were the gems of the night – the real food for thought…

  • about love – that if it’s right, it can last, even if you met in school. And if you haven’t found your love yet, make sure that you hold out for the right person, that he or she is out there, and until then, enjoy dating and ‘companionship.’
  • about life – know that you can start over whenever and wherever you want. It’s all up to you and only you can stop you.
  • about friendship – that it doesn’t matter how many years go by, there are some people you will always instantly click and feel comfortable with. And often they are the ones to introduce you to new people who are destined to become your new friends.
  • about people – that everyone has a story, if you’ll only listen.
  • about acceptance – that if you are honest, open and comfortable with yourself, they will appreciate and accept you for who you are.

Many people asked how I was doing, and others simply offered words of support – my favorite was the big, long bear hug and the whispered words of “you know what I’m saying, right?” I know – and thank you!

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There are countless things to be thankful for every single day. And when bad things happen to you, it just gives more opportunity for the good things to shine through. While we should continually be saying ‘thank you,’ Thanksgiving provides us all the perfect platform. So here is just a very small sampling of the many, many things I am thankful for…

  • that I am here to be able to say thank you
  • early detection
  • my crazy, loving, unbelievable family here, in Florida (Tennessee), West Virginia, etc.
  • Nicholas George Tull Atwood – and that there is only one of him! 😉
  • friends – old and new, close and distant, who provide distractions (whether big like Nashville or small like WWF), make you laugh, let you cry, take you to Outback, join you at chemo or just wish they could
  • long walks and talks, planning sessions and Pinkberry
  • people who stick by your side, even when they are going through so much themselves and it’s not easy for them to do so
  • people who tell you what they think, even when they know it’s not what you want to hear
  • cards, e-mails, texts, facebook posts, calls just because
  • hand made cards and crafts by (and hugs from) children who love you and just want to help make you feel better – and do!
  • little boys who have pink birthday cakes
  • Dana-farber, the Jimmy Fund and Brigham and Women’s
  • doctors, nurses, researchers and all healthcare workers who not only treat you but care
  • organizations like the American Cancer Society, Susan G. Komen, Bright Pink, Gloria Gemma and so many others that raise awareness and funds for research, and help people with cancer in countless ways including to feel better about themselves
  • that I live now, when cancer is not an automatic death sentence and treatments have come so far…
  • that side effects will fade, my hair will grow back and with a little effort when I get my energy back, I can lose the weight I’ve gained during treatment
  • Genzyme and the incredibly supportive people who work there
  • running friends who inspire and encourage me
  • music, movies and books you can escape into
  • Boston, the best city for practically everything – at least the best city for me, now – wouldn’t want to be anywhere else
  • Cape Cod, the ocean, the healing power of just being by the water
  • that I was born an optimist
  • that people love me even when I’m the Wicked Witch
  • that every day is a new opportunity to start over
  • all the people who have added me to their prayer lists around the world, and all the people who don’t know me but pray for me, send me positive vibes or simply wish me well

I could go on and on and on – I know I’m leaving so much out! – but we all have friends, family and turkey to get to, so I will leave it at that… Happy Thanksgiving, all, and thank YOU for caring about me and my family and reading this blog. What are you thankful for?

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“Doesn’t your body know you’re done? Can’t it just be back to normal?” Tara and I mulled over how wonderful this would be as I laid on the couch following my nap. To just snap my fingers and be normal me again. Week 24 of chemo, week 12 of Taxol: done. Only it’s not the end I hoped for.

I know everyone wants me to be excited and to celebrate but I honestly don’t feel it at all. (Although I loved the congratulations card Tina gave me from my Goddaughters, including the Thanksgiving picture eight-year-old Nadia drew me that said “p.s. One thing I am thankful for is that you don’t have Taxol!”)

My body aches more than ever, the tingling and numbness in my feet and fingers has steadily increased and now I have phlebitis in my right arm. So in addition to starting radiation, I am heading back to physical therapy, too. Doesn’t seem like an end to me. I really wish I could be happy, but I’m not.

I did, though, appreciate how the nurse practitioner put it to me today. She said, “It’s just like you’re in a triathlon. You’ve made it through two huge parts: the surgery and the chemo. Now for the third part: radiation.” I liked the sound of that, but also can’t help thinking that it’s even more than that – then there is the implant surgery, which now won’t be until summer, then the two follow-up procedures to that, which brings us near the end of 2013. Then the five years of tamoxifen. As I said last time, it’s the never-ending saga. I need to just suck it up, accept it and stop whining about it – I’m getting sick of myself! And I will, I just have to get back on my feet and then I will start to feel better.

I think I just keep feeling like every time I take two steps forward, it’s followed by one step back. Like the pain that’s been growing in my arm the last couple weeks today turns out to be phlebitis and so I now need to add PT back into my regimen. At least it’s coinciding with being able to take ibuprofen again, now that the chemo is over! And then I was excited because I signed up for the Jingle Bell Run in mid-December thinking ‘Of course I can be running again a month after chemo!’ I didn’t realize how bad my feet and legs would get – and today the nurse said it probably won’t go away for a month, maybe more. So yet another race I paid for but won’t be able to run. (Note to self: no more signing up for races until I am actually fully back to running!!!)

I know I need to give my body time to rest and heal. I just get so impatient with it and simply want to be normal again. And look half as good as Giuliana Rancic.

Giuliana and Bill were on Katie today, as I was dozing on the couch. My ears perked up as I heard them start to talk about her breast cancer. I knew she had, like me, a double mastectomy. But, even though they said she had an aggressive form of breast cancer, instead of chemo and radiation she opted to go straight to the five years of tamoxifen. I don’t get it: why and how??? That certainly wasn’t presented to me, I thought as I looked at her beaming at me from the TV, looking so beautiful with her long dark hair. (Yes, that is jealousy you sense.) I just don’t get it – how can you go through that major surgery and not do the other things to lessen your chance of recurrence? I know it’s a personal choice, but I guess I never felt like there was really much of a ‘choice’ at all.

Jealousy will get you nowhere – and it’s not like I lost my hair so Giuliana could keep hers. And hey, my hair is starting to grow back – it almost covers my head, so soon I won’t look like a middle-age balding man anymore. The aches, pains, numbness and tingling will go away. I will be able to run again. I will lose all the weight I gained. Yes, radiation will have its own challenges, but they will be less than the chemo. If I made it through 24 weeks of that, I can make it through 25 sessions of this. And then I’ll be that much closer to the finish line… and maybe then I’ll feel like celebrating.

Update, 9 a.m., Nov. 21: It’s amazing what a good night’s sleep can do! I woke up with a new perspective and felt the need to update this post. As I just posted on Facebook, “Today I am thankful for mornings where you wake up with a new perspective! I feel better – more energized, determined and like my old self. Crappy cancer can’t change me!”

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Those of you who have been following this blog for a while will remember many mentions of Mirany, my dear friends Sarah and Scott’s sweet little girl who was diagnosed with neuroblastoma last winter when she wasn’t even a year old. I will never forget the moment I found out – where I was, what time it was, how I felt – everything froze in horror, fear, disbelief and sadness. Then, after months of treatment, Mirany had surgery and was released from the hospital on the same day I was diagnosed in March. Since then, it has been eight long months of ups and downs for both of us.
Today we received the most wonderful news. Since so many of you ask me how she is doing, here’s the note Sarah, Scott, Mirany, and TommyBoy (their dog) sent:
“Dear Friends and Family,
Today Mirany’s oncologist shared incredible news with us: For the first time in her life, she is cancer free. Both her MIBG scan and urine analysis were 100% negative for neuroblastoma, and her MRI reveals only scar tissue. In addition, the nodule in her lung that caused much anxiety and distress is gone.
It is, in some ways, as difficult to believe this wonderful news as it was to accept the initial diagnosis. It seems impossible that this ordeal could be over. As painful as this journey was, we were always aware of the blessings we received upon the way, and our hearts ached (and will ache) for all those still fighting. The past 335 days have been a lesson in humanity and compassion; we can only hope to “pay it forward” and be as good to others as you all have been to us. Let’s keep looking out for each other.
With love,
Sarah, Scott, Mirany, and TommyBoy”
I have learned so much from all of them this year. About love, strength, perseverance, sacrifice, friendship, faith – so much. Even about cancer, doctors, hospitals and coping. And innocence: Mirany is simply precious and innocent. I am so thankful she will not remember this battle she’s just fought, and will now be able to simply be the normal little girl she deserves to be.
Dreams do come true – thanks to fabulous doctors like those at Dana-Farber and Brigham and Women’s, researchers, The Jimmy Fund and most of all, the prayers, love and positive vibes from all around us… I can’t help but think of how holiday season is approaching and we’re all going to go out and spend oodles of money on things no one really needs and, in some cases, don’t even want. Consider the charities this Christmas: buy your holiday cards, make a donation or even name a gene, all through Dana-Farber‘s web site. How much easier could shopping get – and you could help make many dreams come true…

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I can be very stubborn. (I can hear the laughs and see the nods of agreement!) But I will listen, particularly when someone is using terms like “survival rate,” and it’s hard to argue with statistics.

Mom and I both went into this morning’s meeting with the radiation oncologists at Dana-Farber inclined to “just say no.” I was fairly sure I knew what the rates they’d quote would be, based on our initial discussion many months ago. What I didn’t realize was how much things changed when my specific details were factored in post-surgery. Everything from (you guessed it) my “young” age and the size of my tumor to the fact that it had spread to my lymph nodes and there was lymphovascular invasion (LVI) influence the recommended treatment.

So what convinced me? The numbers. The fact that right now my chance of recurrence is approximately 15% and by doing the radiation it brings down the chance of recurrence to 5-7% . That’s a lot more than the 3% improvement I was expecting. I can say no to a 3% improvement – but 7-10%? Even as much as I want this all to just be done, I can’t ignore that.

Tuesday is my last chemo session. But it’s not the end I wanted. It’s like the end of the last chemo session – it’s just the conclusion of another chapter in this never-ending saga. In the next week I will have to go to Dr. H and have him partially deflate my left tissue expander so it won’t get in the way of the radiation. Then the Thursday after Thanksgiving I’ll go in for the radiation planning session where they’ll tattoo marks on me to make sure they radiate the right area each day.

Yes, each day. Monday through Friday for five weeks – 25 sessions. Luckily they will only be a few minutes each time, so I will be able to continue to work through it. The biggest side effects are continued fatigue, redness and soreness. And, since my lymph nodes were removed, the increased risk that the radiation could trigger lymphedema. (I will be praying about that one – really don’t want that!)

And the biggest bummer of it all for me? Postponing the surgery I was supposed to have on January 2. I thought I’d start 2013 with surgery and pretty much be done, but now I’ll be doing radiation and have to wait six more months to switch out the tissue expanders for implants. Then a few months after that will be the nipple surgery and then a few months after that will be the tattooing. Oh – and then the five years of tamoxifen. It really is the never-ending saga…

But it’s worth it. To do everything I can to be cancer free. To fight every step of the way. To not have to look back and wonder, “if only I…” because I have, in fact, done everything within my power to get rid of it and prevent it from coming back. So I can continue to wake up each morning, breathe in and breathe out, and thank God for another day.

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As mom, Tina and I walked out of Dana-Farber today, we were all unusually quiet. “I feel … beat up,” I finally said. We all looked up at each other and got small, weary smiles on our faces; looking at them, I could see they felt just as drained as I did.

I know this hasn’t been easy on any of my family and friends. It’s been a nightmare for us all. And just the thought of it being extended is wearing on us all…

Today was week 11 of Taxol, week 23 of chemo. Next week will be my last chemo session. I should be excited. But I’m not. I can’t be. Not yet. Not until after tomorrow’s discussion with the radiation oncologist. Because we may not be done yet.

Mom and Tina debated this with me at chemo today. “We have to celebrate,” mom said. No, it may not be the end. “But even if you have radiation, you’ll be done with chemo and we should celebrate that,” tried Tina. Tara and Kristen brought up the same thing this weekend. “We need to have a post-chemo party!” But no. If I have radiation Monday through Friday for six weeks, in my mind, there is nothing to celebrate. At least not until that is over.

So we’ll see what tomorrow brings.

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