Four days out

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.

47 Responses to Four days out

  1. clifford says:

    Here’s one vote for making the playdate. Fight the Power! *raises fist*

  2. Linda Lawrence says:

    Thanks for the update. Listen to your mother.🙂
    Have a good night.

  3. Jenster says:

    WhyMommy – I’m sure you probably have a great support system of one kind or another, but I’d be more than happy to talk to you about anything. Please feel free to email me any time.

    Just so you know (so you’ll know where my “expertise” lies) I had a left modified radical mastectomy; 4 treatments of A/C; 4 treatments of Taxotere; and finally right simple mastectomy (prophylactic) and DIEP reconstruction.

    And keep on keepin’ on! :o)

  4. KC says:

    The Post sounds like a great and reachable goal. I’ll be looking for it.

  5. PunditMom says:

    I’m thinking of you and my prayers are going your way every day. You have amazing spirit.

  6. motherofbun says:

    If you ever decide you’d like for that linked post you’d previously written to make a “tour” of the blog-o-sphere (so it reaches as large of an audience as possible,) I’d love to “host” it for a day or too…

    Wonder Daddy. LOVE that.

  7. Whymommy, you have the most wonderful, attainable list of goals… Judging by the way in which you are ferociously beating this cancer, I have no doubt whatsoever that you can do whatever else you set your mind to. If there is anything that The Team can do to help, you just say the word. Together, we can help get your message OUT to the world, I’m certain of it.

    In the meantime… be good to yourself, and let others be good to you. All great prize-fighters take a little break every now and again, to marshall their resources! Wishing you restful sleep tonight, and hope you feel better in the morning.

    Love to you, we’re in AWE!! xo

  8. Jacquie says:

    I think you need a new moniker yourself.

    WonderWoman seems very fitting.

    Fitting because I think you are going to leave us all in wonder at how you managed to be so amazingly strong and upbeat while kickin IBC ass!

  9. christine says:

    get some rest, lady and only do the play date if you really feel ok. you gotta take care of yourself. take care, ok?

  10. Suze says:

    “2. Talk to KellyMom and maybe Mothering about the very first symptom that I noticed —”

    This is an issue that could really do with being written up in one of the journals (Breastfeeding Medicine, Journal of Human Lactation or Breastfeeding Review) to reach medical/lactation specialists or within La Leche League International, Australian Breastfeeding Association, National Childbirth Trust etc to reach peer support counsellors.

    Your goals are immensely important and I applaud you for the effort you are already putting in.

    As always I stand in awe of your abilities.
    Suze

  11. Amanda says:

    Hey there, spunky. My mom is the CEO of a hospital foundation in Washington state. I can ask her about contacts she has in women’s health. I’ll be thinking of connections and ways of assiting in helping to carve a path for your message to get out.

  12. Amanda says:

    I should have said “our” message, because you are right, this is bigger than today, or you, this is the future and all of us.

  13. Your goals are wonderful, they are important I think, for others and for you. But for tomorrow your goal should be to pay attention to your body and rest when it tells you to. We are still praying for you, friend.

  14. mayberry says:

    I am a writer and editor with contacts at women’s magazines — please email me if you want to talk about sharing your story!

  15. NYfriend says:

    Terrific project outline!

    Hope you are feeling better.

  16. Imstell says:

    WhyMommy, I meant to tell you that day 4 was the worst. Sorry for not giving you that heads up. At least with AC it’s pretty predictable… don’t make plans for days 3-4. Also interesting, my little guy quit nursing on my “bad” side too. That was my first sign. But since blind kids are notorious for developing strong likes/dislikes we chalked it up to a favoring of laying on one side versus the other. Oh well, hind sight being 20/20 and all…

    I think your plans are awesome! I’m feeling inspired! Pencil me in for Oprah! 😉

    Also, you shouldn’t have a bit of trouble typing after your mastectomy. My laptop was my Post-Mastectomy Gift and I was using it the first day I came home from the hospital.

    You go sister! Oh yeah… try treating chemo as you did the first trimester of pregnancy. Use the same techniques for nausea, etc. Protein worked for me in both instances. You’ll find they are very similar… you’re exhausted, nauseas, have giant mood swings… and people can’t keep their hands off your head. 😉

    Speaking of which… I have some great hats if you’d like them. Also some nice books. Just email me your address.

  17. Ella says:

    Fantastic plans. Send me the link when it gets in the newspaper!

    Also, I like motherofbun’s idea of a blog “tour”.

  18. Amy says:

    If you wanat to get the word out, perhaps contact some PR agencies? Some of them do pro bono work – especialy if you tell them you’ll write the copy! All they have to do is distribute!

    This is all a learning process for you – I imagine that you’ll soon find out your body’s warning signs if you’re doing too much or not. Maybe for now take it slower ’til you learn those signs.

    You will prevail.

  19. ~JJ! says:

    Wow. You are one goal-oriented lady!

    I am proud of you. (I know, who am I?) But to read this you make me proud.

    Just in the little time I am learning about you, I have no doubt that you will reach each and every goal on your list.

    You make me want to be better.

  20. Mrs. Chicken says:

    Whymommy, you have to take it a little easy. I know its hard. But rest a little and let the medicine work. That isn’t an admission of weakness. It is letting your body and the cancer poison do the work.

  21. Please don’t push yourself too much…Feeling energetic is one thing, letting your body pace itself through this is another. It’s a marathon, not a sprint.

    You have a remarkable spirit! Your goals are very attainable, all of them. I had never heard of IBC…you reached me, and that’s one more person…

  22. I think mayberry’s suggested route is great one as far as spreading the word.

    Try to take it easy for at least part of every day? Yes?

  23. kgirl says:

    Although all the things you suggest are important, admirable, and necessary, please take care of yourself FIRST. My dad is going through chemo right now. It can be unpredictable, but I’ll tell you, the bad days don’t last too long, and it makes the good days really good days.
    Thinking of you.

  24. Bon says:

    i think your goals are great and really worthy…and will be of great help. i know that matters, to you and your recovery, as well as to the people you will reach. i think Mayberry’s suggestion is fabulous and i hope she’s able to help…and i can’t see why the Post wouldn’t be interested. if we can help by starting a Post letter-writing campaign, hey…i can add that to my eating-brownies-in-support campaign without any problem.🙂

    but…but. take it easy on yourself, too. this is a marathon indeed. be fierce with the cancer, but gentle on Whymommy. rest a bit. let us help with the goals. i promise you, we will.

  25. girl says:

    Dude you are stinkin’ amazing.

    I just discovered York mints. Mrs Metallic taste, I want to send you some, hee hee hee.

  26. coolbeans says:

    Pace yourself. Take it easy.

  27. maggie says:

    You rock. Take it easy.

  28. Brownie says:

    I love reading the comments you get. You’re some goal-oriented lady (you sure are). Your goals are great (they sure are!). Don’t push yourself too hard (right). Listen to your mom (right, right, right!)And on another note: almost everything during the day reminds me of you and every thought is followed by a prayer.

  29. Chris says:

    It seems like the connections made through the blogosphere will be invaluable in achieving those goals. It really does make the world smaller and more reachable. I know I’ll help any way I can!

  30. Jo says:

    My thoughts are always with you and I’m rooting for you girl! Here, I thought you might enjoy some of this stuff from planet cancer. A friend bought me the F#ck Cancer shirt a few years ago and it still makes me smile.😉 http://www.planetcancer.org/html/store.php?sec_Id=7

  31. Jenn says:

    You are simply amazing.

    So don’t worry about too much, too soon–you’re here and fighting and that’s plenty enough.

  32. K Moldofsky says:

    Don’t lose sight of your goals. And you must keep your own words when you’re feeling bad Remember that spark. It will be back!

    I’m the one who won your hotel reservation for BlogHer, but need some info from to book it. I promise to send some swag your way!

  33. Ally says:

    I admire you so much for reaching out to help others during this time when most people would be focusing exclusively on themselves. I love you list of goals, and the idea that education could spare another mother from having to go through this. Way to go, WM! I hope you feel better today.

  34. Jennifer says:

    Take care of yourself. Your goals are completely achievable.

    As always, kick some IBC a$$, WhyMommy.

  35. ewe_are_here says:

    Ambitious goals, but all worthy ones.

    I’m pulling for you to meet every d*mn one.

  36. ByJane says:

    I’m sure nine million people will be knitting you chemo caps, but I’d like to be the nine million and one. Tell me what’s your pleasure, yarn-wise that is: color? texture? (gotta be soft), style?

  37. Jennie says:

    Take care and keep reaching for the stars!!!

  38. tori says:

    Honestly, I just love your attitude and that you are willing to share so much! I feel lucky to have “met” you. I linked to you in a post about my Relay For Life experience over the weekend. I really did think about you during the survivor lap. Hopefully someday soon-ish we can meet for real and walk a survivor lap together. You are awesome, and if there is anything I can do to help you, please let me know!

  39. Colleen says:

    So sorry you went from feeling so very great to feeling so very crappy. I’m sure you want to take it all head on… but make sure you take some time to relax. You know they say “slow and steady wins the race”. You’ll get there. And… with a details list of goals like you’ve made, you’re sure to have focus. Make sure you let us all know what we can do to help you reach those goals!!!

  40. canape says:

    *ahem* This is your bossy friend stepping in to tell you to slow down. Not on your goal setting, but your physical activity. I love you, but sit your bootay down please. That is all.

  41. binkytown says:

    Chiming in to say, you need to rest so your body can do what it needs to do. Give yourself the strength you will need to do all those things and more.

  42. whymommy says:

    My bootay is sitting down. Again. Thanks all. I’m going to take it slow again for the next couple days, recoup around here, and then muster up my strength to start again.

  43. Pop Cultured says:

    god bless you…

  44. Monica says:

    Hey, everyone – write the Washington Post health editor and tell them how awesome whymommy is. The world deserves to hear her story! E-mail them at tellus@washingtonpost.com

  45. pinkadillies says:

    I’m so sorry you’re having to go through this. As the daughter of a survivor, though, I can attest to it’s efficiency and that it’s worth while.

    I’m also a chemo survivor. I completed 22 months of chemo last year. It was rough but if I can do it ANYONE can.

    Hang in there!

  46. […] Three weeks ago, I blogged a list of “to do” initiatives to help me get out the word about the signs and symptoms of inflammatory breast cancer.  I’m happy to report some initial results today. […]

%d bloggers like this: