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Posts Tagged ‘diagnosis’

The big L – that could be so many things, I’m not even going to venture a guess as to what you’re thinking! In my world right now it stands for lymphedema. Did you guess it? It’s not exactly a roll-off-your-tongue every day word, and I personally wish I didn’t know what it meant. But when I realized last night that the phlebitis had traveled into my hand and I held my two arms together, I had the feeling this might be happening. Then at work today my right arm was considerably more swollen than my left, and was confirmed by several of my colleagues. Off to Dana-Farber I went (hey, I had to be there for radiation anyway, so why not?) and it was confirmed: yup, lucky me, I can add lymphedema to the list!

It is early, so hopefully it will be contained. Without going into a ton of detail, I need to:

  • Wear my compression sleeve and glove during waking hours. Good thing I got it for the plane! Guess it’s not just for travel any more…
  • Keep doing the lymphatic massage that I learned last week at PT, as well as the exercises. Of course, this would be easier with a partner, but since I’m not with someone right now, it’s all me!
  • Ibuprofen – thank goodness I’m done with chemo and can have it again!
  • Warm compress

None of this is convenient or fun – especially this time of year when things are crazy enough. But it is what it is and I will deal with it and hopefully prevent it from getting worse. That’s kind of the name of the game right now – just deal with it. The daily trips to Dana-Farber for radiation – just deal with it. Taking the Tamoxifen (which I started Saturday) – just deal with it. The hot flashes – just deal with it. At least my hair is starting to grow back…

Oh! Speaking of hair, I got the sweetest compliment at work the other day: this older gentleman, who I have seen around but don’t really know, came up to me in the cafeteria and said, “I hope you don’t mind my saying this, but I have to tell you. I’ve always thought you were an attractive woman, but now that you’re bald, it’s obvious that it’s not hair that makes you attractive.” It was so nice of him, I really appreciated hearing that, especially so randomly.

Now speaking of random (or not so random) acts of kindness: I know I said I was done soliciting donations for Dana-Farber, but this is too good not to share. If you haven’t finished your shopping, consider giving the gift of a donation in someone’s honor. Now until December 31 you can use this special link www.dana-farber.org/yearend and your gift will be doubled! It only works through this link, and only until the end of the year, so don’t wait! And I guarantee anyone you give this gift to will truly appreciate it… I know all of us who frequent Dana-Farber 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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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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