Letter to the Washington Post

Here’s the text of my letter that was published in the Washington Post last week!  They won’t publish anything that’s been blogged, so it had to wait … but I wanted to add it to this site, so I’m adding it on 12/12 with 12/4’s date.

Breast Cancer At Its Worst (I didn’t write the headline, by the way!)

Monday, December 3, 2007; Page A16

The Nov. 28 front-page article “Breast Cancer Risk Underestimated for Blacks, Study Says” contained important information to which I can add only one thing: The risk of inflammatory breast cancer (IBC), the fastest, deadliest kind of breast cancer, is also much higher for black women than for white women.

This cancer spreads quickly and is difficult to detect with a mammogram because it forms without a lump. IBC is usually detected by women themselves during monthly self-exams or by doctors during clinical exams, so all women need to know to look for any changes in their breasts.

In particular, swelling, redness, itchiness and a change in texture can signal a breast infection or inflammatory breast cancer. Women who notice such a change in only one breast should contact their doctors immediately to rule it out.

(signed)

Chemo #13

The effects of Taxol are cumulative.  Although the dose of chemotherapy is always the same, as the weeks go on, it gets a little harder to take.  Every week, the resulting nausea is a little stronger.  Every week, the aches are a little more intense.  Every week, the bone pain is a little sharper and has spread a little further.  Every week, it gets a little harder to bear.

I’ve had a tough weekend.  It’s just been nausea, aches, and bone pain, but the intensity of all three have increased over the past few weeks in particular, and I’m losing my weekends entirely to the aftermath of chemo.  The nausea takes away my appetite, to the extent where I’m just not interested in food again until Tuesday, and then I have to be careful not to eat rich food after the week of crackers and peanut butter, or my stomach revolts.  The aches make me cranky and the bone pain makes me crabby.  Oh, and I should record here that neuropathy has set in and the ends of my fingers and toes have gone numb. 

All in all, it’s been a truly delightful way to spend the week/end.

But, then, this morning, I woke up to blue skies, white clouds, and a hint of snow in the air.  There was a promise of excitement about, and when I came home from cancer yoga, I took the (little) boys out for an afternoon of shopping and browsing at an independent book and toy store near us.  We had a lovely time, and then went out to dinner.

And tonight?  Tonight I am happier than I’ve been in days, as my boys sleep soundly upstairs, tired from a day out with their mommy, and I can check one more thing off my list.  For this morning, my letter to the editor appeared in the Washington Post.

Add to that a nomination for a November Perfect Post (for part 1 in the series on How To Help a Friend) from Miscellaneous Adventures of an Aussie Mum , and a fun review at Review Planet this morning (the HP Compact Printer — way cool, my friends), and I can go to bed tuly happy and satisfied with my day.

Wishing you the same….

Dear Teresa Wiltz,

Dear Teresa Wiltz,

You don’t know me, and I don’t know you, but I’m writing in response to your recent piece in the Washington Post entitled “With Cruelty and Malice for All: It’s Dark Out There in the Blogosphere.”  While I’m sure that your piece represents the situation surrounding the death of Kanye West’s mother, I take issue with your summary that it’s dark out there in the blogosphere.

I’ve had a very different experience, in fact.  Five months ago, I was diagnosed with inflammatory breast cancer — the baddest, quickest moving, most deadly breast cancer out there.  I have two little boys (then only 5 months and 2 years old), a busy lifestyle, and a few good friends here in the D.C. suburbs.  But I needed to talk about the diagnosis, the possibilities, and my fears without scaring my friends and family.

I was terrified.

I didn’t know who to talk to, so I opened up and told the blogosphere, these good friends of mine in cyberspace.  They responded — in a major way!  Swiftly they spread the word, writing about me on their blogs, and telling other women and men about this rare form of breast cancer that masquerades as mastitis.  At last count, over 415 women had written about me and inflammatory breast cancer, warning other women and raising awareness.  A thousand visit me every day, raising my spirits, offering me support, and letting me know above all that I am not alone.

I am not alone.

In this fight for my life, I have the support of thousands of friends in the blogosphere, many of whom I have never met.  Some have little children like me, some have grandchildren, and some are single.  Some live in nearby suburbs and D.C., some live in California and Canada, and some live in Australia and the farthest reaches of the world. 

All are precious to me.

And so, when I read your article last week, I was impressed at your depth in the blogosphere but I think there is another side to it.  If you’d like to see this other side, you are welcome to visit me and my blogfriends at Toddler Planet.  Come see the bright side of the blogosphere.  The supporting side.  The side filled with love and laughter and children.

This part of the blogosphere is saving my life.

I want the world to know about it. But mostly, I want you to know about it, because there is so much more to the blogosphere than what you’ve seen and reported.

Sincerely,
Susan

WV Rocks!

My story about inflammatory breast cancer came out in the West Virginia Intelligencer today while I was at chemo.  It is AWESOME, and I am so grateful to the reporter, Betsy Bethel, for interviewing me and writing this story — and my Aunt Linda for making the initial call to help set this up!  Thank you both!

http://www.theintelligencer.net/page/content.detail/id/501374.html?nav=510

P.S. I’m off to see the surgeon later today to discuss my upcoming masectomy.  I don’t know whether it’s fear of the unknown, the decision whether to have a single or double masectomy, anxiety about her assessment of my progess in treatment (improving, but still inoperable, said my medical oncologist today) or the steroids that they gave me at chemo this morning, but I am nervous as all get out.  Prayers for calmness (SERENITY NOW!) and optimism would be appreciated.