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?