How can it be that just this morning I wrote the post below, and now I can barely hold my head up without getting sick and woozy again? Too much, too fast, I guess. But I post it here as part of the record, for I did feel this fired up this morning. And I need to remember that I will feel that spark again.
So today is the first day after the 3 days I’ve given myself to recover from my first chemo treatment. That means that today I want to accomplish something. I feel a real urgency to do something about all this, and to spread the word about inflammatory breast cancer to the next woman. I’m not sure what’s going to pan out, but I’m willing to bare my soul (yes, again) to tell you what my next steps are. What I want is to get the word out. What I will do is to work through my words. And I will try to make progress every day until my chemo is complete. After that? Who knows. But this will give me 6 months on this little project, and maybe, just maybe, at the end of it some good will come of it.
Oh, and I’ll be celebrating as they haul me into the operating room for my masectomy. I suspect it may be harder to type for a little while after that. But I admit I don’t know. It probably depends on if they take them both. But I’m digressing. Back to my goals for the next 6 months:
1. Interface with the IBC support list to see where they’ve spread the word and what they’ve found successful. They’re working on Oprah to do a segment, but several hundred emails have gone unanswered. Fun idea, though!
2. Talk to KellyMom and maybe Mothering about the very first symptom that I noticed — my newborn wouldn’t breastfeed from that side. He screamed and arched his back every time we tried, and he just wouldn’t do it. I’ve heard about several other moms with BC who also had that discovery — but most of us in retrospect, wishing we’d heard of the possibility before more time had passed. I’m not saying it’s a first option, or anything to panic about in 99% of the cases, but I just wish I’d seen some reference to BC as a possible concern and reason to get myself checked out, just in case. As my pediatricians and lactation consultants can attest, we all thought it was the baby, just being stubborn.
3. Consider submitting blog posts like this one to other sites that moms and other women and men frequent. I’m not sure where, exactly — but I’d like to just get the word out a bit through this amazing network that we have. Ideas? I don’t care about bylines or whatnot. I’m not a writer by trade, and I swear I’m no threat. I just have something to say that I want people to hear. Just a little bit.
4. Local outlets/meetings/events. Even the ladies at the under-40 breast cancer survivors group last week didn’t know about IBC; they were surprised, and asked me frankly about my symptoms.
5. The penultimate, the local, the pie-in-the-sky — talking to someone at our local newspaper, The Washington Post, to get a story in the Health Section. I know, big goal. But I’ve got 6 months and maybe I can craft something interesting that could catch their eye.
Ambitious? You betcha.
Necessary? Ah, probably not.
My goals? Oh, yeah.
A month ago today I went to my OB because my breast “felt funny.” Now, I’m fighting this beast for my life. And I don’t intend to let it win. OR to take another unsuspecting mom who wasn’t as lucky as I was to get quick attention, tests, referrals, and treatment. I have been very lucky, and I need to pass it on.
Back in the present, tonight, 9 p.m. Today was harder than I had expected. Mom thinks I pushed myself too much. She’s undoubtedly right. She usually is. (Shhhh… she reads here, but she might miss that one if we all just skip over it quickly enough.) This morning WonderDaddy took me to the store for a few essentials (lip balm since my lips have dried out, comfy PJs since my chest hurts so much I don’t want to wear rough clothes for the days after chemo, an electric razor because my old standbys have been summarily dismissed due to the possibility of cuts that won’t stop bleeding, plastic forks and peppermints to combat the new metallic taste in my mouth, and baby clothes, because that baby, he is still growing) and then we stopped for a quick sandwich. I came home and felt terrible, but when a friend stopped by after a few hours, I agreed to be taken over to her house with Widget. Lots of fun (I just sat on the floor with the boys) but probably too much. I came home, ate dinner, and promptly got sick. Woozy, that’s all. Pre-fainting, nausea, and just not wanting to move, but it was scary.
I don’t know if we’ll make it to playdate tomorrow after all. Perhaps we did too much too soon.