Saturday, February 12, 2011

Join me for a Pink Sing-Along

Whilst I've been busy writing about our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure®, in my "Komen By The Numbers" series, in which I've been investigating where all their money goes, my cancer has been equally busy.

After going for scans last week, I was informed that the Cancer Beast has roared back to life and I have some new metastases to add to my already quite fine collection.  This explains my half-dead left arm then.  Tumors pressing on important nerves that serve fairly useful limbs like arms (especially dominant arms) can be a tad inconvenient. Especially if you're a busy little blogger like myself.  I don't want to have to resort to typing with one arm.  That's not very conducive to ranting, let me tell you.

It seems I'm also the lucky recipient of breast cancer skin metastases, apparently a fairly rare phenomenon only seen in about 5% of cases.  Rare? Really? My whole entire case is supposedly rare.  Originally diagnosed at thirty three, aggressive advanced-stage disease, no family history, no apparent risk factors, tested positive for every pathology test out there, rare reactions to certain chemos, metastatic at forty, yada, yada, yada.

Why do I keep hearing rare everything for me? Yet why do I keep finding women of similar age to me, young women going through similar ordeals, young women still dying of this wretched disease? Rare?  I don't think so.  But what is rarer still, is research.  Research that might actually help all these "rare and exceptional" cases of young women with breast cancer.

*Borders on launching into another rant, but pulls back in interests of maintaining sanity*.

So what does this all mean?  Frankly, there was nothing surprising about this last bit of news.  My beloved and I have been dealing with the Cancer Beast for a long time now, and the fact that it's rearing its ugly head again is just another notch in my already quite voluminous medical chart.

Probably the biggest issue, aside from needing to take some aggressive action to stop the Beast, is that I am going to lose my hair.  Again.  And it will be indefinite baldness.  How do I feel about this?  At this point I just feel like I want to get on with the treatment, and the fact that I have to go bald, is just another indignity in the already very long list of indignities that have been the hallmarks of my breast cancer ordeal.  My beloved did say something though that I thought was quite profound.  Always one to look for an upside, even in the shittiest of circumstances, he said this;
"Well look at this way.  At least by losing your hair, people might start taking your illness seriously."
Of course, we've been living the seriousness of this disease for quite some time now.  We know what this disease does to a person, both physically and emotionally.  We know what this disease takes.  We know where this could all lead someday.  We know.  Unfortunately, to the outside world, hair loss is the only visible sign that something is seriously wrong.  When you have hair, it's difficult for the rest of the world to comprehend that your body is harboring an evil agent whose sole purpose in its miserable life is to kill you.  Because you have hair and "you look great".  Genuinely a case of out of sight, out of mind.

This is the cruel joke played on so many people dealing with cancer, for whom hair loss is not one of their treatment side-effects.  This is especially true for people living with metastatic breast cancer.  It may be a little known fact that many of the current metastatic breast cancer treatments don't cause hair loss, enabling us to move incognito in the real world.  Obviously that has its advantages.  For example, no one is likely to come up to you in the supermarket to offer you an instant blessing, and eternal salvation from the Lord above (yes that happened to me the first time I lost my hair).  But the real disadvantage is this. Whilst you have hair, no one really sees your truth or your painful reality.  

Now don't get me wrong, I would take having hair over not having hair any day, but it's an interesting viewpoint that my beloved and I have been pondering this week.

So the bottom line is this.  I'm going to lose my hair.  Nothing much more needs to be said.  It sucks but what can I do?  At this point I'm more interested in trying to slay the Beast rather than worrying about my bald head.  I'm a veteran with all of this stuff now, so I'll cope.  Like I've always done.  Somehow.  

Next week I intend to go and have the pre-hair-loss-haircut.  Might seem ridiculous to some, but it's a tad more dignified than going into the garage with a set of hair-clippers and being buzz cut like I'm at the local dog-groomer.  I'm thinking a mod pixie style will do the trick. Then, depending on how much hair I lose, I will move onto my head wear of choice - the silky gorgeous scarf.  I'm not one for wigs.  Why? Because I think when you wear a wig, you look like you're wearing a wig, so what's the point?  Plus they're hot and they itch and I can't be bothered.   I never liked styling my own hair.  Why would I want to do it for a wig?

Because I don't know when I will see my hair again, I thought I would pose for a photo with my little blog mascot.  This is me with hair.  Remember it.  I think hair suits me.

February 12, 2010
Now here's what I hope I look like after hair loss.  Back in 2004 I attended a cancer fundraiser where my bald self delivered a speech to all the potential donors.  Marisa Acocella Marchetto, author of Cancer Vixen was also at that party.  Now at the time she was still in the process of writing her book, a breast cancer memoir in cartoons, but I did have the pleasure of meeting her, and we traded a couple of emails after the party.  Then her book was published and to my delight I discovered that I had a little cameo role.  Here's how I apparently looked back then;

That's me in the middle.
So "heavier chemo" and hair loss be damned. I'm taking a deep breath and embarking on this next part of my ordeal with an open mind and hopes that the Beast can be kicked into submission.

I'll leave with you a song that gets me in the mood for a fight.  Play it and sing along with me.

P.S.  It is somewhat ironic that it's a "Pink" song isn't it?


  1. Love to you times ten.

    Please keep these incredible mind- and world-changing conversations going.

    And hugs to Newman. Adore you both.

  2. excellent blog,agree with every word, still wearing my wig 3 years after I stopped chemo as my new hair is rubbish x

  3. Oh, Anna, I am feeling many things after reading this. First of all, I'm sad that you have to deal with more of this stuff, including the hair loss. I'm grateful to have found your friendship and your blog, which I really enjoy reading because you write with such wit and honesty. I'm happy you have a wise hubby, who by the way, is so right in his comment. As one recently without hair and now very little hair, I know his statement is right on. I am also angry because, well, because of all you have been blogging about recently. (Maybe the anger is good, as in motivating me to rant a bit more too). I'm going to be feeling more things, but I'm already getting too "windy." Keep on writing, ranting, sharing and fighting. Beautiful photo with hair, you'll be beautiful without as well! And little dog is so adorable!

  4. Oh honey I'm so sorry. I know how you feel though that's for sure. Wish I could give you a big hug. When I lost my hair this time I felt like I couldn't fly under the radar anymore.

  5. Anna, you are truly a warrior. You are so clear-eyed as you stare down the Beast. I hope you know how many of us are standing with you.

    I am so sorry you have to go through this, and that you have to lose your hair again. You DO look great with hair, thank you for sharing the picture. But you have such a strong face you are going to be beautiful without it too. Two women in their 30s with advanced cancer showed up at my book launch party last fall au naturel and all I could think is how beautiful they are. One is my dear friend Pam and one is someone I just met, but both of them have such incandescent smiles. I'm starting to babble but I hope you know I'm just trying to say anything that could be the least bit helpful.

  6. F'ing F'er. We love you.

  7. Anna,

    I'm so sorry you are going through all of this hell. Your posting is magnificent and poignant -- and witty at the same time. The world needs to hear what you have to say, for what you have to say is most valuable.

    It's interesting that you and your loved one were discussing hair loss. I was one of those people whose chemo treatment did not result in hair loss. As a result, even though I was exceedingly ill, people didn't take my illness seriously because I looked "great." If I could turn back time, I would've shaved my head.

    But I do recognize that it's much better to keep one's hair than lose it.

    Your blog is so inspiring, that I will be a regular reader and will list it in my blogroll.

    Sending healing thoughts your way,


  8. Am I the only one who is crying? Am I the only one who hears the heartbreak beneath the almost-rant? Am I a bad friend because I can't say anything reassuring or adequate to the unbelievable grief I feel at this news?

    I fucking hate cancer

  9. Anna, I'm sorry, sorry, sorry, you have to continously deal with this monster. It sucks. Sorry for the anger here. Cancer has to be stopped. None of that is helping you right now, but please know you are not alone. We're all here to listen and send virtual hugs with prayers and hope in some small that helps. Your determination will slay the dragon. Hair or no hair, like the song says, you're a rock star.

  10. Really hard to add anything more to what everyone has said Anna. You are very inspiring. You've opened up my eyes (even wider) to the reality of Stage IV. And you've done it with such dignity, while still showing us your anger and your rage. I feel sad and I feel angry. And I know that however you get through this next stage you will have plenty to teach us all. Thank you for all that you write and share with us.

  11. dear Anna,
    i'm so sorry... No hair makes sense, you're right, you're a warrior with your brain, this blog is full of your meanings and angers. Perhaps will you keep some hairs, your voice against cancer is important with or without baldy head. You're important for us, with or without hair.
    Je t'embrasse bien fort !

  12. Dear all....I can't thank you enough for all your beautiful comments. You all are the "pie" that feeds my rather hungry soul. Thank you, thank you, thank you. xxxxx

  13. Anna, I'm so sorry you're having to deal with this again. You look gorgeous with your hair, and will look fabulous without it as well.

    Fantastic post. Thank you for sharing with us the reality of dealing with mets. Your attitude is great. You are in my prayers, as well as the cure to this horrible disease.

  14. Prayers and healing light coming your way, Anna. From what I can tell from reading your blog posts, you have what it takes to overome this. I found when I lost my hair the first time, I got lots of perks. People are nicer to you and cut you more breaks. Milk it to the hilt! You deserve it!

  15. Agree 1000% with Cathie. And have you ever heard the song "Troublemaker" by Weezer? It's a good one, but of course Pink totally rocks (no pun intended).


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