More questions, more answers!
Just a Mom asked: OK I have heard that a very early sign of this is little bug bite? is this true or just something that my head is adding to other things.
I have read that some women get a bump, a bruise, or what looks like a little bug bite that just won’t heal as one of the first signs of IBC. I don’t really know what causes that, and I’d be afraid to guess. (But if you’ve been sunbathing topless in D.C. recently, odds are that it was caused by a tiger mosquito.)
Crissi asked: hi.. just wondering. did you have arm pain before diagnosis? Or is it just a side effect from the chemo?
I didn’t have arm pain before I noticed the other symptoms related to my breast. Sometime during the next 2-3 weeks of testing, though, I developed a great deal of aching and pressure in my chest and corresponding aches from my elbow to skull. I still don’t know why I have them (and really don’t want to know), but they are lessening now that I’m in chemo and the other symptoms (like the heaviness of the tumor in my breast) are starting to lessen as well. I’m glad of that. Typically there is no pain associated with breast cancer. But IBC can have this kind of pain and shooting pains in the breast itself (which I also had, but is also lessening) associated with it. Lucky(?) for me, I spent last summer and fall on bedrest and pain meds with a bad disc problem exacerbated by a difficult pregnancy, so I know what works for me.
Tanya asked: I have a few questions, and maybe you’ve written about it. I searched your blog and couldn’t find what I was looking for. Can I ask … what prompted your diagnosis? I know IBC, but what I’m wanting to know, is prior to the probable signs, can you reflect back on things that you noticed such as pain, heavy arm, extreme burning itching, any thickness? Or were you just hit with this out of the clear blue? Just curious. I see a surgeon in 45 minutes, and here I sit unable to make myself get up and go because of the fear of the unknown and the reality of the “what if’s.”
Although I wrote to Tanya privately immediately (and possibly even coherently), I want to answer her here too, for anyone else. I only ever heard about IBC through a weird coincidence of fortune, which is probably why I started writing about my experience and the signs here on my blog. Way back in February or March, my newborn infant refused to nurse on my right side, which of course made me worried that something was wrong with him. I had him checked out a number of times, with different doctors, and we never found anything besides “stubbornness.” Which, if you know me, isn’t too hard to believe. Well, then my mother-in-law was diagnosed with breast cancer in the beginning of June. As I was looking up what all the new terms meant, I came across the 4 stages of breast cancer. And there, staring me in the face, was Stage IIIB/4: Inflammatory breast cancer, with symptoms like thickness of the breast, dimpling, redness, and looks like an orange. I looked down. And back up at the screen. And then it hit me. I should get myself checked out too. Over the next two weeks, my symptoms increased in number and intensity, and by the time I got to the surgeon, it was pretty clear that something serious was wrong. I asked her if she had seen IBC before. She told me that it was exceedingly rare, but yes. And then she took a look at me — and bam! I was off to get a mammogram, an ultrasound — and, the next day, a biopsy.
Ana wrote: I’m sure you have probably answered this question before, but I’ll ask just in case. What gave you the inspiration and courage to share your journey with the rest of us when it could have been so much easier to fight your battle in silence?
Because I had never heard of this disease, and was diagnosed relatively early due to dumb luck (see above), I felt compelled to share the symptoms with everyone I knew. Luckily, I have a blog(!). In addition, I was (am) afraid to go through this alone. Just like motherhood, I don’t see how anyone could possibly survive something like this alone.
It’s so nice of you to ask the question in such nice words. Thank you.
Stimey asked: When you are with people, do you prefer not to talk about it at all, or would you rather discuss it? And if you want to talk about it, do you want to talk about it a lot or just a little? It’s such a huge part of your life right now, but I’m never sure if you’d rather just focus on other things when you’re out with your pals.
Stimey, if I’m out for my weekly outing with the girls, the last thing I want to think about is the other 6 days and 22 hours. I totally just want to have fun with you all. (But if you need to talk to me about it, it’s okay.)
bon asked: Do you allow yourself to think of after, when cancer’s ass is thoroughly kicked to the curb? who are you becoming in this process of pain and fear and courage and letting go and standing tall and becoming a voice and face for awareness? what are you learning about yourself? because we’re all learning that you’re amazing…but from inside your skin, i’m curious about what more you see.
Right now, I admit I’m just struggling through this most of the time, and saving my energies for loving my babies, but I do wonder what all this is teaching me… or what I’m supposed to learn from this. We’ll see. Thanks for asking, though, bon, you always make me think!