More Questions, More Answers

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!

16 Responses to More Questions, More Answers

  1. Jacquie says:

    Great questions AND answers!

    Your explanation on how things are going for you have made me so much more aware of what my friend is going thru. I sincerely thank you for that.

  2. Angela says:

    Thank you for answering so many questions! I know it can’t be easy, but I truly believe everything you’re doing to tell your story, to express your feelings and experiences going through all this will get the word out about IBC and make a difference for so many people.

  3. Char says:

    I think it’s so wonderful of you to sit and answer so many questions while you are struggling through such a tough time right now. Every answer you give is saving someone else from the trials & tribulations of figuring it all out if they have this type of breast cancer. You are a true kindered spirit to so many women, including myself even though I don’t have it….it really makes one think about taking care of themselves. I think about you daily and hope that your days of having your cancer in remission are in the days to come.

  4. ~JJ! says:

    Woman, every day you inspire me more.

  5. KDF says:

    Your strength and utter refusal to do anything but stare this sucker in the face and kick it to the curb is just incredible. Thanks for every word you write.

  6. katy says:

    Very nice of you to answer questions here for those of us who have no idea what to look for and probably are too afraid to look too hard. Thank you!

  7. Carrie says:

    You are truly doing so much good by taking the time to answer these ?’s, especially while you are going through the chemo yourself! I am so touched by your courage and your unselfishness in trying to help educate others. Keep on! You rock.

    And, BIG congrats that the chemo is working!!! Hip, hip, horray!

  8. Aliki says:

    You are truly inspiring–in so many, many ways.

  9. Alice C says:

    I am astonished by how honest you are – even though it must be so difficult for you.

    It is worth stressing that not every case of inflamed breast tissue is IBC. It is very rare. I had severe symptoms when breast feeding and went for a scan but I was fortunate enough (in retrospect)to have mastitis. This may help reduce the fear factor even as you so courageously raise awareness.

  10. Bon says:

    thanks again for doing this, Whymommy. i’m listening.

  11. Matt says:

    I still like the tiara. But it’s cool how you stand so coquettishly in front of the class dispensing all this useful information. And I can see cancer’s increasingly beat-up carcass over there in the corner, whimpering, “I still can’t believe she wore that tiara! I picked on the wrong woman this time.”

    You rock.

  12. Emily says:

    This line is why you are so amazing:
    “But if you need to talk to me about it, it’s okay”

  13. NoMommy says:

    I am sitting here crying because you are so unselfish, inspiring and, as Emily said, amazing.

  14. Aimee says:

    struggling is normal. 4 years, 17 chemotherapy treatments, 8 or so surgeries, 35 radiation treatments, months and months of Herceptin, countless CT scans, and i am STILL struggling. cancer’s not easy. being a mother with dependent children while going through cancer treatment is not easy. and i still can’t tell you what exactly the purpose of all this is for me. i do know that there have been many effects, both good and bad, that cancer has had on those around me. but i don’t think i’ll be able to ever say that there was one singular monumental purpose. i imagine cancer will walk with me all the rest of the days of my life. and maybe if i live to be an old woman it will have taught me something that i can share with the world. until then, it’s just a struggle. so, my encouragement is this: you are normal! ha.

    i also want to share that it’s a common expereince to be “inspirational” to other people. and it can get really tiresome to always feel like you have to hold up a facade of strength. people online are one thing. people in your face are another. and those people don’t really know what to say or how to feel. they almost want you to make them feel ok about your cancer. i found that i just avoided people during those times that i didn’t feeling like comforting them.

    also- chemo causes chemopause, so it’s evident it can also cause brain chemistry disruption. i had a major depressive episode along with panic attacks, which started about 9 treatments in. it may not happen to you, but don’t feel like you’re weak or maladjusted if it does. it’s a biochemical side effect of chemo. they also don’t tell you (or didn’t tell me) that cancer + Adriamycin + port can cause blood clots. if i had known that i could have avoided a potentially fatal complication by taking aspirin or something to keep my blood thin. as it turned out, i nearly died from a DVT in my subclavian/jugular veins. also, consider taking vitamin B to protect the nerve sheaths from damage caused by the taxane (if that’s on the menu for you). neuropathy is not a fun thing, especially when you have small children that require the type of care and attention that you need your hands/fingers for.

    here i am…..all full of advice today. maybe unsolicited. if you have questions or need to talk to someone who gets it, you know where to find me……….

  15. shauna says:

    Thank you so much for sharing this with all of us. I think of you often and appreciate all your posts that help us become more aware. Last Friday my left breast was sore and during a four-hour drive to Utah I make it even more sore by trying to find a lump. After an entire weekend of performing countless self-exams I ended up going to Urgent Care on Monday (we’ve recently moved and I don’t yet have a doctor–the earliest I could get in to see my new family doctor was mid-October). The doctor gave me an exam and cleared me. But I plan on performing regular exams every month and going to get my physical every year. But it’s all because of your blog and your constant reminder that we need to watch and beware. Thank you. And God bless!

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