Guest post

October 21, 2009

I’m over at Workout Mommy’s place today — if you’d like a guest post on IBC for your blog, drop me a line and I’ll write one just for you too (or you can cut-and-paste the one below.  It’s yours, no problem, just please link back to me and let me know you did).  It’s still important to get the word out — as much as I’d like to move on and forget about it, it’s not like people have STOPPED getting IBC since I finished my treatment.  In fact, an estimated 25,000 women have been diagnosed with IBC since I was diagnosed in June 2007, and many have died because they weren’t diagnosed before it had spread too far.  Let’s keep spreading the word — there’s more than one kind of breast cancer, and inflammatory breast cancer is the cancer without a lump.

Inflammatory breast cancer

There’s more than one kind of breast cancer.  Did you know that?  During October, we’re so often flooded with “buy pink” campaigns, and reminders to check ourselves for lumps, that it’s become almost commonplace.  We all know that we should do regular self exams, and we’ve heard it so often that the urgency often fades into the background of children, spouses, laundry, and work.  But did you know that there’s a kind of breast cancer that forms without a tell-tale lump?

It’s called inflammatory breast cancer, and it spreads FAST.  The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

There’s a great illustration of these symptoms over at Worldwide Breast Cancer that is guaranteed to be not like anything you’ve seen before….

In my mind, it boils down to this. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

In the 2.5 years since my diagnosis, I’ve already lost a dozen friends to cancer.  Many of them were moms and bloggers, readers just like you.  They fought hard.  They fought with everything they had.  But cancer treatment is largely still in the experimental stages, and it’s a tough road.  Just to be here today, I had to not only survive cancer, but also survive 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat when I step outside (as a lovely side effect of the mastectomy that took all my lymph nodes on that side). It’s been a hard, hard road, but I’m grateful for the chance to be here today, to hug my children, to play their games, to laugh at their knock-knock jokes.

There is joy after cancer.  But first we have to get there.  So please, take a moment, call/email/blog/tweet/update your friends, and SHARE the SIGNS of inflammatory breast cancer with the people you care about. You never know. You might just save a life.


Letter to friends I haven’t yet met

October 16, 2009

Dear Little Rock Mamas,

I’ve just finished reading about your Race for the Cure team that is preparing for the big race on Saturday. It sounds like there are a lot of fun events going on, and I’m looking forward to reading more posts about it on your blog. Race for the Cure is a great event to raise money and awareness of breast cancer, and that’s so important, as early detection is the key to catching this “beast cancer” before it develops into a monster that overpowers even the most technically advanced chemotherapy, radiation, and surgical treatments.

You guys know how to detect most kinds of breast cancer, right? With regular self-exams, looking for a lump? Of course you do, and I know you’re reminding your readers too. But as it turns out, there’s another kind of breast cancer lurking out there, that is far more sneaky, and far more deadly. It’s called inflammatory breast cancer, and it forms inside your breast without a lump. That’s right. There is no lump. The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

And here’s my own pitch. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

I’ve already lost too many friends to this disease, bloggers and readers just like you. Won’t you please check yourself for these symptoms, print a copy and file it away for later, and SHARE IT with your friends? Need a visual? Worldwide Breast Cancer has some really cool posters (also on flicker) that illustrate visual signs of breast cancer … using fruit instead of the human body!

I learned about inflammatory breast cancer very accidentally, when researching my mother-in-law’s breast cancer diagnosis. There was a link at the bottom of the page, and, curious, I clicked it. As I read through the symptoms, I had the strangest feeling, scoffing, well, I have that. And I have that. Hmmm, I have that too. And, when I called my doctor, and went in the next day, it turned out that I needed to see a specialist to rule out IBC. She wasn’t able to rule it out, however, since the biopsies showed that I indeed did have IBC — the deadliest form of breast cancer.

Two years later, I’ve survived cancer, 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat as a side effect of the mastectomy that took all my lymph nodes. It’s been a hard, hard road. But I haven’t done it alone. I blogged my way through this disease, and was very much supported by my friends online and off, as well as my family, which really rallied to come and care for me and my children. I’ve survived cancer.

The last two years have been in some ways terrible and in some ways absolutely wonderful. The terrible part is detailed on my blog, a daily history of what it’s like to go through a cancer diagnosis and treatment … and come out the other side. The wonderful part is there too, magical days with my children, weekly playdates with their friends and my mom-friends, getting back to normal with things like book club and volunteering and the kids’ school, and dancing with my husband in the chemo ward, in the rain, and in the kitchen. I’ve celebrated birthdays — of me, my children, and my children’s friends, and I intend to celebrate many more birthdays to come.

There is joy after cancer. But the important part is getting there — the after cancer part. So good luck this weekend, walk hard, and SHARE the SIGNS of inflammatory breast cancer with the people you meet. You never know. You might just save a life.


What to expect after an oopherectomy

September 30, 2008

Not that I knew this a month ago, but here goes:

When a premenopausal woman undergoes an oopherectomy (the surgical removal of one or both ovaries, and maybe the fallopian tubes too), guess what happens?

She goes into menopause.

Overnight.

All the symptoms that make menopause a little more difficult for most women happen ALL AT ONCE. So, overnight, there may be sudden and extreme hot flashes, chills, mood swings, unexplainable sadness, irritability, changes in moisture in the skin, hair growth, and other unmentionable changes in unmentionable places.

Overnight.

I’m coming out the other side now, but it’s been a bit of hell around here for the last couple weeks. Thanks for hanging in there with me, friends, for taking me belly dancing, putting up with my mood at book club, and basically tolerating my grumpiness. I think I’m finally coming out the other side.

One of the things that is totally helping me is reading all your submissions for The Challenge that I put forth last week — check out those comments on the last couple posts — they’re pretty wonderful! Submit yours now, if you haven’t already!


Angsty

September 7, 2008

Angsty, really angsty.

Torn up about a few things this week.

1 – Laptop broke.  Ouch.  It’s okay; this one was easily replaceable.

2 – Work/life balance. Want to do work.  Want to make a difference.  But can’t bear being away from my kids.  Selfish?  You bet.  Priviledged?  Of course.  I am so lucky to be able to make these choices, by the day, even.  But there’s still no easy answer.

3 – Thrilled that someone has found an answer she’s happy with.  Sarah Palin.  Kids in the office, husband on the slope, more kids at home with grandparents.  She must be happy — she’s kept on having more kids, even as her jobs have gotten more and more demanding.  Am so very proud that it’s working for one of us out there.  Am concerned too.  So many of us are having so much trouble balancing just a couple kids and (maybe) a job, or community (gasp!) organizing … does Palin’s success tell us that we’re doing it wrong?  That the struggle is over?  That we’re living in a post-feminist society, where gender truly doesn’t matter?  I only wish it were so.  But it’s not.

4 – Terrified that this Palin nomination is going to tear us apart, just when it was time for us to come together on family issues.

5 – Having trouble adjusting to abrupt menopause.  Recovering from the surgery was largely a cinch.  Waiting (still waiting) for the path report and the CT scan analysis is not.  Am grumpy.  Am grumpy and tired.  And current events are not helping any.

Sorry for the crabby post.  But if you have friends who are abruptly losing their ovaries?  You should know that they may be grumpy for a little while too.