Monday, March 15, 2010


My hair started growing back last week. It comes in like peach fuzz at first, so right now I have some peach fuzz on some parts of my head. It will probably be another two or three months before I have enough hair to stop wearing a scarf. It's taking a lot longer to come back than usual, probably due to one of the chemo drugs that I got before my transplant.

One of the harder parts of having cancer are the changes it brings to your appearance. Not only are you dehumanized by all of the tests, exams, blood draws, your life reduced to a series of numbers on a page, but your appearance changes so much that when you look in the mirror you no longer recognize yourself. Yes, the hair on your head falls out, but a little known fact is that ALL of you hair falls out. It's pretty awesome to not have to shave for months, but not having any eyelashes or eyebrows makes you look like a lab rat. Chemotherapy can cause changes in your skin, either darker hyperpigmented portions or red rashes. GVHD causes the same skin changes. You lose and gain weight depending on your treatments. Some treatments even make your face break out. Steroids (yes, I am going to complain about steroids again) make you gain water weight and they redistribute the fat in your body, so you get a big belly, your collarbones disappear, and you get a huge moon face. You get scars from central lines and surgeries. You can feel as though you have completely lost the person you were before you got sick.

The first time my hair fell out from chemo I was so upset. I had cut it short in a kind of Beatles-esque style because I had been told that it's less messy. It starts with just a few extra hairs coming out in the shower for a few days, and then it starts coming out in clumps. I didn't realize that there were that many hairs on a head. I used to stand over the garbage can at night before bed, shaking out the hundreds of loose hairs and sobbing. I covered the mirror in my hospital room because I didn't want to look at myself. My nurse would tell me that it would grow back, trying to comfort me, but at the time it just made me angry because what good does that do me now? I want my hair now, I don't want to wait all those months for it to grow back!

Eventually though I realized that she was right - hair grows back. If I had to loose my hair for a few months in order to get better again, that was fine with me. And then I stopped worrying about it. It's just hair. Even though it was still hard to see all the commercials on TV for shampoo or hair dye, or to see all the ads in the magazines, or all the page space magazines devote to "Hot hair for the holiday season!" or "Best haircut for your face shape!" or "Quick and easy ways to get fabulous hair!" You never realize how many of these things there are until you don't have any hair to do anything with.

Baldness is easier to deal with because my dad has been bald for as long as I can remember and he's very funny about it, it doesn't bother him at all. I never felt compelled to buy a wig. They seem like a lot of work, and I hear they are itchy. Besides, you can always tell it's a wig (or maybe I just hang out with cancer patients too much). I just wear hats and scarves. It's kind of fun, another way to accessorize your outfit. Good thing I wear so many boring, solid colored shirts because that means I can wear fun, patterned scarves! The worst part isn't the baldness, it's after the hair has grown back enough to take off the headscarf. You still have to wait a long time before your hair gets back to the length it once was, and in the meantime you have some really vicious looking hairstyles. The growing out phase is really, really awkward.

The second time my hair fell out, a year later, I was totally over it. I knew my hair was going to fall out, I had already accepted that fact, and I just wanted it over with. My Marine friend came to the hospital to give me the official armed forces buzz cut. Even though I had cut my long hair short the first time, it was still long enough that it was a pain in the butt - hair all over my room, and it actually hurts when your hair comes out, your scalp gets really sore. I figured shorter must be better. And it was, it was so much easier because there was less mess and fuss about the whole hair falling out thing. Between that round of chemo and my first transplant my hair had grown back really short and butch, so I didn't have to do anything to cut it the third time I was bald.

The fourth time my hair fell out, starting in October when I was getting chemo, I decided that I wanted to keep and enjoy my hair as long as possible because it would be a good two years before it would grow back to the length it was (seriously, two years). It eventually got pretty thin so I wore it up in a ponytail all the time to cover up the bald spots. Then during my transplant when what was left started falling out I took a pair of scissors and hacked off the ponytail, then cut the rest as short as possible. This is probably my favorite way that I got rid of my hair because it was very empowering. I did it exactly as I wanted - I kept my hair as long as I could, and when I was done with it I hacked it off. Quick, painless, and I was totally in charge. Screw you chemo, I run this show.

I have a few friends who for whatever reason think that I should be dating, not necessarily right now but sooner rather than later. I usually try to stop them with a joke about having to find guys with a bald fetish if I want to date anyone. I mean really, the way I look right now, no way I could ever get a date. I have a big red flag that screams "CANCER!!!" flying over my bald head. I have this hairless, wide-eyed alien look without eyelashes and eyebrows. My cheeks are chipmunk-y from the steroids (not quite up to moon face status). No guy would touch me with a ten foot pole, no matter how many things we had in common or how funny and charming I was when we met. He would be totally blocked from thinking of me as anything because of my appearance.

But isn't that what we all want? Someone who will love us no matter what, no matter how ugly we are, because they care more about what's on the inside than on the outside? We are all searching for, and we all deserve, someone who cares more about what kind of person we are than what color hair we have, someone who cares more about what we have in common than about how much time we spend in the hospital, or even better, someone who makes time spent in the hospital something we have in common. Someone who will wipe away the vomit and sit in the waiting room with you for two hours because they love you and the person you are. Not someone who is put off by the ugliness and the baldness, not someone who doesn't want to hear about the bad times you've had, not someone who is only interested because they like your appearance. And ladies and gentlemen, we all know there are lots of people out there who are more interested in looks than in personality. Don't tell me you haven't met at least one person like this.

Unfortunately, it's pretty unrealistic to think that people don't take appearance into account at all when thinking about dating someone. No one can completely divorce mental attraction from physical attraction, it always plays in at least a little bit.

I can't see many people thinking I seem like an interesting person and wanting to get to know me, in any capacity, because of the way I look. In a few days I'll be at Day 100 and I will be able to go out and do things and make friends and meet people. But will they want to meet me? I feel like I would just scare them. I've never met people while still in treatment or still bald. I'm kind of nervous about how people will react to me.


Zhu said...

I think the losing the hair part will really get me. Which can be silly because after all, it all grow back and it's not that bad to hide (just assuming...). Although I'm be super happy to lose my hair in SOME places.

I'm sure you changed physically but I don't think it makes you unattractive. i'm not going to give you the whole speech about inner beauty, I swear. But eh, some women feel ugly when they gain weight and some guys love it, some feel ugly with a scar while some guy find it interesting etc. etc.

Alexandra said...

I liked this post; I don't know if I knew about all the different haircuts. I'm glad you found an empowering route this time. Happy almost 100 days!!! What is the exact date? (it must be this week, right?)

Also, I agree that it doesn't make sense to force yourself into dating if you're not ready. But as you re-join your French conversation club and add other activities to your life, you'll probably start to feel more comfortable with how you look, and who knows what might happen ... :)

Love, Alex

au soleil levant said...

Zhu - yeah, scarves and hats aren't that complicated to figure out, and I assume wigs aren't... you just plunk it on your head, right? It does suck to lose your hair, but like I said, you get used to the idea.

Thanks for refraining from the inner beauty speech, I definitely don't need any of that. Obviously the hair-induced ugliness is just temporary, but it does take a while for it to go away.

Alex - Day 100 is on Friday. There are a lot of very nice people in my French group, so it will be nice to see them again and a nice way to break back into the social scene. As far as "who knows" goes, I wouldn't hold my breath.

getyourselfconnected said...

When my good friend from college had cancer (germ cell tumor, he died 2 years ago) he changed physically during the treatments but HE did not change and to be honest his appearence didn't even register with me. I can understand it may be a little more scary to meet new people when you feel you look a certain way.

It is just my 2 cents but I would think anyone would be very interested in speaking to you beacuse you are obviously one super tough person with plenty of courage.

Mary Community Farm Kitchen said...

Well, hmm. I have absolutely no insight into boys and WHO they get attracted to and WHY they get attracted and HOW they might act if so attracted. So, no help there. I think by going to BMC I somehow missed my chance to understand male behavior.
However, for now I reckon you should just have as much fun as you possibly can and try not to worry about how other people react. You've been talking about buying fun clothes and cool shoes and I can tell you're ready to cut loose. You won't be the strangest looking person in town, I can guarantee that. :-)
Ok, i feel like I should have some profound closing summing-up but I don't. I'm just looking forward to having you out and about and I'm not afraid to be seen with you, so you shouldn't either ;-) xx

au soleil levant said...

getyourselfconnected - I'm s sorry to hear about your friend. Thanks for the encouraging comment.

Mary - well, I went to a coed school, and I don't understand them either. But for the record, although I am a girl I was talking about girls' reaction to guys too. Guys have trouble dealing with the physical changes that come with cancer too. That is one good thing about our town: you're never the weirdest one out there! Looking forward to hanging out with you too :)

Andromeda said...

A boyfriend of my sister's wanted her to shave her head because he thought it would be hot. And other than that he was a pretty normal guy, so bald fetish does not always mean weirdo, lol. She ended up just cutting it super short, which he liked too, and kept liking all during the growing out phase.

Though there are lots of shallow guys, I do feel like so many care way less about looks than girls do. (Metro europeans not included.) Like you said, I think everyone, boys included, just wants someone to love them, them and not their looks. Though appearances can be difficult to overcome, would you want to be with someone who cared so much about them? Lame line I know, but no sense wasting time thinking about all the people who might not like you, when there are so many that will! (Taking my own advice is of course much harder for me, lol, so feel free to ignore it just as much as I do)

au soleil levant said...

Andromeda - I don't know, I think the bald fetish thing is kind of weird. He can't have been that normal ;)

I would never be interested in being with someone who only cared about looks. My point is more that looks will always play into attraction to some degree. No matter how much someone likes you as a person they still have to look at you. That means I'm kind of SOL for a while. Not that I'm looking for anything, because I'm not, but it's not the greatest feeling to know you're off everyone's list until you lose the hairless alien lab rat look.

yaeld said...

Wow, this was a really powerful post...impressed that you shared it with all of us.

I definitely feel your pain around meeting people despite appearance changes. I've certainly felt insecure about far less dramatic changes in my appearance.

Honestly, when its a few zits, I'm probably the only one who really notices. But, yeah, when you look significantly different, people are more likely to realize it.

Still, when you are talking about meeting new friends, I think people sometimes need a push to remind them that you might have tons in common with them (its just that in the present, hair didn't make the list of commonalities).

And, yes, I fully acknowledge that it sucks that you have to remind them - you have your own shit to deal with - but people are timid about what they don't understand - yet, the nice ones can be made open-minded through understanding...

So, here's what I'm thinking...get a set of funny t-shirts for when you are feeling a little shy about going out into the can even customize them so they say exactly what you'd want people to think when you meet them...or not, they could just be funny...period.

But, maybe, they can help draw attention away from where you look a little different, and draw attention to where you are similar - or where your senses of humor are likely to meet.

Alternately, or in addition, those orthodox women have some pretty believable looking wigs. I can reach out to my contacts for some names if you'd like :)

Anyway, plane is taking off, but, you got balls for sharing this stuff with all of us :)


Leesa said...

Hey Mir...

I know it's an ordeal... I am glad that you spelled it out so clearly here because one thing my mom kept from us was her suffering... I think because when she was 14, her dad was diagnosed with cancer (a tumor in his back area) and she watched him SUFFER in the hospital for two years before he died... Well, that was before they believed in really giving you good meds to be in oblivion when you are suffering with horrible pain.. though, I'm sure they had morphine back then... for whatever reason, I think that they didn't administer enough b/c my mom told me that they didn't...

My mom never really told us much about her chemo treatments-- except the tiredness... and she would always sound so cheerful and upbeat when I called to talk to her on the phone... It wasn't until the very end where it was REALLY apparent about what she was going through... My step dad also kept her suffering hidden from us, too... She was really an inspiration to me because she told me once after I asked her how she was doing with all of what she went through...
She said, "I watched my father go through suffering for two years, and I think it made me stronger." I can't imagine what it was like for her as a teen to watch her dad go through that... but watching her go through this makes me feel that it would somehow be easier for me to handle if/when the time comes for me.. Not sure about that, though...

I know hard as hell to go through... it's something that I wish no one had to go through... I am thankful to you that you are posting all of this for us to read.

About the boyfriend thing... I think that would be the LAST thing that ANYONE would be saying to you... even in joking!!!! How the HECK can anyone even mention to you about finding a boyfriend? That makes NOOOOO sense to me right now.. Like it's hard enough to find someone under regular circumstances... I am sure that right now, you are only concentrating on recovery and feeling better.. Having to think of finding someone else to make you feel loved... HUH??? I don't get that... I think that whoever these people are that are saying that to you... need to really look at themselves and say "shut up!"
Just work on getting better and don't even think about finding someone, relationships... etc.. You don't need any extra stress or hassle!!!
We all love you and that should be enough to get you through.. You ARE beautiful... inside and out... no matter how much hair you have or don't have... no matter how puffy your cheeks are... and no matter how much roid rage you get!!! We LOVE you!! And you certainly don't need NO boyfriend to tell you that!!!
Big hugs!

au soleil levant said...

Yael - I love the idea of funny t-shirts! I think I'll skip the Orthie wigs though...

Leesa - thanks for such a thoughtful, considerate comment. Really, it made my day. I really appreciate you sharing all the stories about your mom; I'm sure it's really hard to relive those painful memories. I think she was really strong and courageous. Pain management is still an issue for cancer patients. Many doctors are unwilling to prescribe patients what they need because they are either insensitive, think the patient is looking for drugs, or stupid. Probably a combination of all three. Back when your mother's father was sick they also didn't have any good anti-nausea drugs. They would try to give chemo at night so that it was less harsh on the stomach, but patients would wake up because the nausea was so bad. Yikes.

When I had my first go at chemo and transplant I didn't share any of this stuff because I didn't think anyone wanted to hear it, and because I wanted to spare them from how bad it really was. But you have to have an outlet for your feelings or else you go completely insane.

And I'm glad that at least one person doesn't think I need to be dating! I need to concentrate on myself right now, like you said. And by bringing it up it just reminds me (as if I needed to be reminded!) of everything I wrote in this post.

yaeld said...

I don't think you need to be dating either.

Besides, if you are concerned about germs, boys' hygiene sucks. They are like a salad bar, only with extra cooties :)

yaeld said...

I do think you should write a book though. You'd be an inspiration to a lot of people dealing with similar challenges at young ages. Of course, first and foremost, those with cancer.

But also, those without cancer, who are struggling to make their own way in the world, wondering if they have found a person who would love them no matter what, if they are missing all the fun things other people are supposedly doing on Facebook etc.

The realness in these posts in really meaningful to me and the lesser challenges I deal with in being in my mid-twenties and trying to make sense of it all. I think the honesty here has the potential to inspire a lot of people...

Leesa said...

I definitely agree with YAELD on both comments...
Esp. the book !!!

And boys (men) fart and burp WAY more than women and they are proud of it, too! Hope that's not TMI!!!
And another thing... the SNORE!!!!

au soleil levant said...

HA! Boys are like a salad bar, only with extra cooties. LOVE IT!

I'll write a book if you agree to be my publisher, how about that? :)

Mary Harvest Kitchen said...

hey, I've been saying she should write a book too!

I don't know who you were citing as saying you need to be dating, but I definitely think it's still fun to joke and talk about boys--even just hypothetically. I don't think anyone NEEDS to be dating ( a fish needs a bicycle) and of course M, you've got a lot of other things on your plate. At the same time, I think it can be fun to have boys on the brain a little bit as a distraction, but if it's not what you're looking for or if you're not finding it fun to think about, that's cool too. It's springtime! You're out and about! Life is so good and so sweet! xx

yaeld said...

There are many online book publishing services...I can help you. And help with marketing.

Also, last week, at this conference I was at, Tony Hsieh (CEO of Zappos) had a giant van he drove around in to promote his new book called the happiness van because his book was about happiness...

Maybe we could get something cooler. Like a convertible. I can't afford to own one. But I'll spring for a rental :)

au soleil levant said...

Mary - OK, you're on the pro-book writing list :) I enjoy hearing about the boy dramas of others, and I don't mind joking about it every once in a while for myself, but even if I'm just joking around, there's that little thought that comes in to the back of my mind that says "you know that will not be happening. Who would want you?" So even if it's fun at the time, in the long run it just reminds me that it won't happen, especially if it's brought up frequently, because all those little thoughts add up to one big thought that pushes itself to the front of the line and before I know it I'm thinking all the time about how no one will be interested in me.

Yael - I like the idea of a convertible, but unless we're doing the book tour during the summer, we're going to want something more substantial for driving around the north. What about a limo?