The Adventures of the Forcibly Bald

This weekend I went to a baby shower with a very close friend of mine who I have known since I was very little. We have always been friends but we went to different high schools and colleges so we don't really share the same group of friends outside of each other. This is important because I found myself at a social gathering with a group of people who may or may not have known that underneath my adorable turban I was a molting, mostly bald, baby bird.

So there we were, having a really interesting conversation that flows into various topics the way really interesting conversations do, and somehow the topic of male baldness came up. And I sat and I listened while they discussed the various experiences they had with the men in their lives and their sensitivity about losing their hair. And then one of the girls said "Well, I think it's hard for us women to understand because we don't experience it."

Now, I had been sitting silently during this particular branch in the conversation because I could basically feel my balding head throbbing underneath the turban like a radioactive tube of titanium. Not because I was ashamed of my bald head, but because it made me think about it, and thinking about it makes it start itching and tingling all over again and it was getting a little hot under the turban. I was basically trying to follow the conversation while using all of my will power not to start itching. And then my friend (who has probably spent more time with my bald head than anyone. She literally spent a whole day bringing me ice packs for my poor, burning, itching scalp after my last chemo) turned and looked at me, and she said "Well, we have someone here who knows." And I thought yes, I do know,  but I'm not sure until that moment, in that conversation, that I had thought about it.

Now this might be a metaphor, because in some ways I have been so distracted by the physical elements of it (it is SO uncomfortable) that I hadn't really gotten all cerebral about what I was experiencing - this new chapter where my scalp is too tender and inflamed to tolerate a wig, or even a scarf/turban for more than a few hours. Where I was pretty much walking around all the time totally bald.

So there I was, surrounded by a group of really cool girls, who wanted to know - what is it about hair loss? Even when people don't think it looks bad, or even, that it looks good?

Ok, here's the thing about hairloss, from someone who is experiencing it, vividly, in all of it's multi textured glory.

Hair is the FIRST thing people see when they see you. I used this (very local) example of walking down the street in the marina and seeing a girl and being like "Wow, she is gorgeous" and the man who is next to you is like "Nah, she's alright." and then you look closer and realize that you are seeing gorgeous, well done hair and a put-together outfit, on a reasonably fit body and a nice, symmetrical face but yeah, maybe she's not a supermodel. You were distracted by the hair.

If you really think about it, hair is the first thing you see when you see somebody. Try to describe somebody you just met, what's the first thing you will say? She has long, brown hair. He's blonde.
Hair just registers first.

So when you walk around in public without hair, you feel very vulnerable. The first thing people see is your FACE. Ladies, if you've ever scraped all of your hair back into a super tight ponytail you might get a small sense of what this feels like. People are looking at YOU. There is no hiding.

Add onto that the fact of being a bald WOMAN, and you get a lot of looks. And a lot of comments (all of them positive, but still, it's a LOT of attention) and so walking around in public becomes an exercise is being open to all of humanity. There is no anonymity, there is no blending into the background.

And this is the first layer. The second layer is more complicated.

Now, I think when it comes to men and hair loss, it becomes easier to understand that there's also a lack of control. They don't get to wear scarves or wigs either.

 Control over your appearance is a profound thing to lose. Sure, they could just shave their heads. Great, they actually look adorable with that receding hairline or whatever. That's not the point. Hair is one of the few things a man can style/groom. They can't augment their faces with make-up, they don't have a wide variety of figure flattering clothes to choose from. They get what they are given without a lot of room to control the public facing front of how they present themselves to the world. Losing their hair is the ultimate way of losing control of their appearance.

Now, with my horrible scalp breakout, I also feel this profound lack of control over my appearance. Because wigs/scarves/hats are not allowed under my current treatment plan for this awful rash, it's just me and my molting scalp, all the time. I just have to be bald. I have no choices. No options. I have a beautiful, unbelievable, amazing super hero of a wig and stylish hats and piles of gorgeous scarves... and I can't do anything with any of them. I just have to present my face to the world.
Oh hats. I miss you. 

It doesn't matter much that I don't look bad bald. Maybe even beautiful (thanks guys) At the end of the day it's not my choice. I am utterly powerless to do a single thing but present my bald head (and my whole face) to the whole freaking world.

So when I walk around with my bald head I feel both incredibly exposed and vulnerable, and also utterly powerless. It doesn't matter that I also look beautiful. It's exhausting. 

I will totally admit. I look fine, maybe even (sans rash) great. But it's not my choice. 

I have never seen my face so clearly before. And it's not a bad face. I have become profoundly grateful for my features in a way I have never been before. Big, dark eyes with thick lashes (which will hopefully survive my next round of treatments, everyone say a big prayer for my eyelashes because I'm not sure I can survive losing those too), straight nose, a big smile that has always gotten me compliments (I think because it's genuine - a really critical self-evaluation shows that my upper lip totally disappears when I smile, but oh well, now is not the time to be complaining.) Combine that with a good face shape and a good shaped skull and I really don't look bad bald. In fact, I think if my head wasn't covered in this awful rash I would probably, occasionally rock this look on purpose.

But since right now it's not my choice, just like when these men lose their hair it's not their choice, it feels awful. I can't even stop to enjoy it.

And I think it's the lack of choice to have this incredibly distinctive, exposing look that is what makes it so hard for me and for guys out there who are losing their hair.

Guys, you have my sympathy.

Because at the end of the day my hair will grow back or, hopefully sooner, my break out will clear up and I can start wearing my wig again. But for men losing their hair, you guys don't really have that option. So you seriously, genuinely have my sympathy. And, thanks to my obsession role model Amber Rose, I have discovered that I can get a little bit of face shielding relief from insane sunglasses.



So, despite my doctors promise that I would get to sleep all the time, I have found that quite the opposite is true - the first round it was the nausea and the runs (sorry TMI) keeping me awake, and towards the end it was the stress about feeling yucky all over again (not to mention the hair falling out itchiness and the scalp infection that it caused) making it impossible to sleep through the night.

Now I'm on round two and the nausea is much much better- still there waiting to rear up it's nasty little head and torment me, but definitely only had a few hours Monday night that were porcelain hugging so all in all I'm calling it a win. 

I even managed to eat two pieces of toast, an apple and some soup broth today (last round I went pretty much a whole week without eating anything stronger than Gatorade.) To me this is a MAJOR improvement because the only thing more mood damaging than not sleeping is for sure not eating.

I miss my wig (a lot, please expect a whole post dedicated to pictures of my fabulous wig) but until this infection clears up (apparently it is a pretty common side effect of the hair falling out and should go away soon) I instead spend a lot of time looking at pictures of Amber Rose (see pictures below, she's FIERCELY baldly hot)

Now, given the choice between my current insomnia (where I feel almost normal but wired from the anti-nausea steroids) and the insomnia I had last time around which was caused by my nausea, stomach issues, the infection I got from my hair falling out (apparently very common but VERY hot, painful and uncomfortable and almost impossible to sleep with) obviously its not hard to go with A, but the problem is tomorrow I am going to be a disaster. I will cry, probably about something totally inconsequential and inane.

Sleep is not just the fuel that gets you through the day - it's also the armor that protects our fragile little souls from the constant challenges that everyday throws our way. We are saturated with so much stimulation, so many decisions, so much to do. Doing all of that on a full nights sleep is hard enough, but doing it while you are running on empty is like walking around in public without your skin. It's not the being awake at night that bothers me so much - it is the vulnerability that I feel when I go out into the world weak limbed, fuzzy brained, and emotionally raw.

So if you will take any advice from the sparkliest girl in chemo that applies to everyone it is sleep. I will not bore you with things like how many less calories people with a full nights sleep consume or the link between sleep disorders and heart problems later in life. Let's go for the instant gratification of starting your day feeling as strong and fortified as possible. Sleep is like a hearty breakfast for your soul.

Wish me luck tomorrow :)


A Little Inspiration: Being a Hero & Chemo

Hello dear ones,
I am sorry I have not written in awhile - I am tired. Tired in a way that makes doing certain things I love, like walking the dog or, well, writing, hard to do. I will confess to going to a wedding this weekend and it was amazing, so beautiful, so fun, and well, a little bit exhausting (my fault, I overdid it) and so to make up for it I have been sleeping. Like yesterday I took a 3 hour nap, and fell asleep at 8pm.

Here's the thing - I know my body needs rest to heal, but it is so hard. It feels a lot like laziness. To just "rest" all day long.

The other day I was skyping with handsome boyfriend's dad and he said something that had a profound impact on me. Basically, he asked me how I was doing "considering I am in a position where my primary job is to push my body as close to the edge as possible, without going over."

Now, I loved this. It's true: every three weeks I pump as much uber toxic poison into my body as possible and then try my hardest to endure terrible side effects without letting those side effects overtax my body so much that instead of bad damage, the damage that's done is only the good. It's damage, but good damage.

What I like about HBF's dad's description is that it makes me sound like a badass. "Pushing myself to the edge without going over." That sounds strong. Hardcore. Tough. Definitely not a victim. Not a weak little girl who spends all day laying around swooning and watching too much TV. I am pushing myself to my physical limits, while also balancing precariously on the edge of something dangerous. Only my will, my positive attitude, and my hyperactive germaphobia and obsessive handwashing are keeping me from toppling over to the other side.

I am a heroine.  I imagine my cells are like little praying, baldheaded little monks - letting the toxins wash over them and trying to remain unaffected while the poison kills the bad, devious, misbehaving cancer cells. Since they are both in the same temple, the can't escape the poison. And of course, they don't want to fight off or hold back the poison and keep it from coming in, because the poison is good. We, me and all my good, healthy cells, want that big, bad chemo to come in and decimate all the bad cells that aren't doing what cells are supposed to do.

So remember, I am not a victim, laying around wallowing in my bed - I am a heroine, feeding and nurturing my body so that it can strong enough to handle this. So I can push it the edge without going over.

Sending lots of love and good vibes out into the universe

P.S this photo is courtesy of HBF's mama's fbook page - is it any wonder he is so amazing :)

DIY: Donating Your Hair

So, here's the thing - it was going to fall out anyway, right? So I might as well give it to someone else who could use it, and would hopefully get as much comfort in a crappy time as I get from my wig. To me this is just obvious, if I can't have my hair, then obviously I want someone else to be able to enjoy it! 

So right after I got my first cycle of chemo, I decided a little chop-chop was in order. In fact, it sort of gave me something to look forward to. Like, "hey you - instead of focusing on all the poison they are about to pump into your body and how awful you are about to feel – let's focus instead on how you get to help someone else."

So here it is, an easy, step-by-step guide on how to donate your hair. Hopefully it is already on it's way to a new home on someone else's head. 



*a padded envelope*scissors*small rubber bands*
*enough hair (check your organizations donation guidelines, it varies* 
*a clean space to do the cutting* 

It's also good to throw some cash in with your hair donation to help cover the cost of actually making the wig - these organizations also rely on fundraising to build and assemble the wigs. 

STEP 1: Put on some make-up

 I know, seems silly - but chopping off your hair can be traumatic even with the best of intentions. Give yourself a little extra loving to help ease the transition away from your locks!

STEP 2: Prep
Straighten your hair so you can get the maximum length for your cut and then divide your hair into several small ponytails, using the tiny rubber bands. The more ponytails, the less hair that will be wasted when you cut and the more you'll have to donate!

Step 2: Cut

Grip the ponytail and then make your snip ABOVE THE RUBBER BAND. This is so important, I cannot emphasize it enough! 

STEP 4: Have some fun with your new look
 Play around, take some crazy pictures. Bask in the warm fuzzy feeling of helping out someone in need. 

Step 5: Mail it in
Place the wrapped ponytails in tissue paper or plastic wrap to protect it during shipping. Don't forget that donation :) 

Tartans & Sequins Does BCA Better

I'm reading this book called "Crazy Sexy Cancer Tips" and in it the author talks about the importance of having "Crazy Sexy Cancer Angels." Well, angels are great and all, but I am pretty sure I have Crazy Sexy Bunnies in my corner.

Julia, the original bunny, writes an amazing blog called Tartans and Sequins which is definitely one of daily-pick me-up, not cancer related, feel -good reads. The only real problem with it is that she always has such cute ideas and such flawless taste that she makes me want to buy things.

Well lo and behold, I opened up the blog this morning and there I was. October is Breast Cancer Awareness Month and in her classic, on point fashion Julia had just gone and written this amazing, touching, inspiring article about breast cancer. 

I will not spoil it by telling you too much about it except you should totally just go and read it (with tissues) and then I dare you not to want each and every one of the cutest BCA items curated, ever. (Seriously this girl has impeccable style and taste.)

Love you Bunny, and love all of you out there who are spreading the word,

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