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Posts Tagged ‘side effects’

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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For about two weeks life was almost normal – no treatments (just visits to the hospital), work five days a week, some of the chemo side effects fading and my hair (slowly) growing back. I felt myself slipping back into the good old denial and fooling myself that cancer doesn’t exist in my life. But starting tomorrow, it’s a new reality: radiation.

Just like with the chemo, it’s been a bit of a crash course in radiation. I admit I haven’t exactly been paying as much attention as perhaps I should have (part of the denial thing), but now I’m cramming. The folks in Radiation Oncology at Dana-Farber are – like everyone I’ve encountered at Dana-Farber and Brigham and Women’s – great. They talk and walk you through it all so even those of us who aren’t too medically inclined have a clue what’s happening. I had the mapping session where they figured out the treatment field (on me) and gave me six tiny tattoos to help them correctly position me at each appointment. Then on Friday I had the dry run, where they took x-rays to make sure they got the mapping right, and walked me through what will happen for each of my next 25 visits.

Radiation Therapy (From the Breast Radiation Guidelines sheet from Dana-Farber): Radiation therapy is a painless treatment, similar to an x-ray. It uses high-energy x-rays to damage the DNA of cancer cells so that they are unable to repair themselves. Radiation also affects normal, healthy cells. Unlike cancer cells, normal cells are able to recover from radiation damage.

So starting tomorrow, Monday-Friday for 25 days (except Christmas and New Year’s Day) I’ll end my work day by running over to Dana-Farber for radiation. Several friends have given me tips on getting through it, and I am hoping to sail through. Then reinflation, a few months of rest, surgery for the implants, nipples, more tattooing, and then…

Tamoxifen. You may have heard the news last week: the results of a big study were just revealed and it determined that 10 years of tamoxifen is better for life expectancy than five years. Of course. That’s just my luck – just when I thought it couldn’t get any worse! So frustrating…

But at the check-up with my oncologist Friday (well, substitute oncologist, as mine just had a baby – her first, yay!), she said that I shouldn’t worry too much about it right now. A lot happens in the medical field in five years, and by the time my five are up, who knows what the recommendation will be. With my luck it will be to take it forever, but whatever. We’ll see.

There is some good news. I get to have the port taken out of my arm soon, which will be wonderful. And the best news of all: I ran today. Well, that was preceded by some not great news. I asked the oncologist when the numbness and tingling in my feet, legs and fingers will stop and she said it could be six months, a year or even never (although that’s rare). I had been waiting for my feet at least to be normal before getting back to running, since I’m such a klutz anyway. But there’s no way I’m waiting that long – I can’t stand being this out of shape, and want my clothes to fit right again. So this morning I went for my first run in practically forever.

I actually cried (happy tears of course) as I walked into the cool air in my running gear. It felt so good to get back out there! Of course, that only lasted a short time. It was like I’ve never run before. I was only doing 1:1 intervals and I was hurting by the time I hit a mile. I only did one more because I had a pain in my side and felt like I was going to throw up. (So pathetic how out of shape I am…) But I was proud I didn’t fall and two miles is better than none. It’s a start.

And tomorrow – uh, today, as I just realized it’s after midnight – is another start. Radiation. And it will be fine. I got through chemo just fine and I can get through this.

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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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