Newsflash! We're making some progress on the hair front. Yes I'm excited that my hair is growing again.
BUT Houston, we have a problem. The hair is so thin and sparse that you can't really see it.
They say a picture is worth a thousand words... so here's what I mean:
Can you see my hair?
Well here is a close up. They're tiny, thin hairs that are so sparsely populated that you can barely see them.
I know it will thicken in. I know that I'll most likely end up with my full head of hair again. But the question is, what to do until then? Because I kind of feel like I have the hair of a 6 month old. You know what I mean. It's thin, there's not alot of it, and sometimes the kid still just looks bald.
So part of me wants to shave it. Because I think looking like a woman that has severely thinning hair is worse than being bald.
But part of me wants to keep it... because it's HAIR! YAY!
I know that hopefully in about 4-6 weeks, I should have a BEAUTIFUL start on a full head of hair so by then, it'll be a moot point. But what is a girl to do in the mean time?
*sigh* what a great dilemma to have :)
This particular blog is not really for my family and friends. This is for other cancer patients. The newbies. The ones that are facing the hairloss and struggling with it. And struggling with the big question of "should I shave it?" Just keep that audience in mind as you read this.
Hairloss is hard. As I stated here
, this can be one of the most gut wrenchingly difficult things about cancer diganosis and treatment. From my experience, many women facing chemo have the same question: to shave? or not to shave?
And honestly, it's a personal decision. Here's my very long winded version of how I came to my decision (seriously get a glass of wine, this is long).
I'm a competitive person. Cancer is my opponent in this particular game. When I found out I had cancer, my goal during treatment was to not allow cancer to win... anything. I didn't want to let it take my life. Or ruin my career. Or take my sense or humor. Or push me into an emotional depression. I was determined to fight cancer on every front.
My goal was to allow cancer to change my life as little as possible.
This is the mindset I took into my battle.
The decision to shave my head was a part of that mentality. I didn't want to wait for my hair to fall out because I wanted it to be on my terms. I wanted to decide which day I'd go bald.
Yes, that makes me sound like a control freak, but I'm sure a few of my fellow cancer survivors can relate to that.
So 16 days after my first AC treatment (2 days after my 2nd), my hair started to come out. My mom was visiting at the time, so I told her today was the day to shave it. As a military family, we have a set of clippers at home, so I dug them out and my mom went to town.
Here's what that looks like.
I know lots of girls that did this with a glass of wine and did crazy haircuts.
But honestly, I was too tired that day (if you can't tell by that first photo).
I personally think this was the right decision for me. I was ready for it to go. I was sick of waiting for it to fall out. I was sick of waiting for cancer to deal me another blow. So I shaved it.
And then dug out my lint roller! Remember, just because you shaved doesn't mean what's left won't fall out! Seriously, the stubble falling out is like snow and it gets everywhere. Lint rollers help with that immensely and it kinda feels good when your scalp starts to hurt. Apparently my 2 year old remembers me doing this because the other day he found a lint roller... and ran it over his head. Kids can make anything look cute :)
So this post is a little late.
It's cancer's fault. OK, not really, but I intend to blame everything on cancer for as long as I can :)
This mother's day, I spent the day with family and friends doing the Susan G Komen Race for the Cure in Sioux City, IA.
My mother-in-law organized a big group of family and friends as a display of support for me during this crazy experience. I think when all was said and done, there were over 20 of us that took part in the race.
Isn't that crazy? More than TWENTY people, familly and friends came out in support of the fight against breast cancer and specifically MY fight with breast cancer.
I mean, before being diagnosed with cancer, I just never thought I was that cool. I knew people generally liked me, but I didn't expect people to go out of their way or give up time to show their support for this battle.
And I know it's not all about me. I know that this is also in support of Chris' family (who has to go through this with me) and for all the other people that THEY know that have been affected by cancer.
But on my Mother's Day, there were 5 or 6 other moms who gave up their special day of breakfast in bed and relaxing at home to get to Sioux City by 7:30 in the morning to run/walk 3.1 miles... and that's just awesome.
I felt honored. And a little bit overwhelmed. Because it's still hard to wrap my head around the sheer number of people out there that have carried me through this battle with their support and love.
I'm not talking about 30 or 40 people, I'm pretty sure the numbers top a few hundred people have directly done something to support me during the past 5 months. There have been my coworkers (over 100 people made donations during our donation drive), my immediate family, my extended family, friends of my family (church members, their friends, my mom's sewing group, people from my childhood church), my friends from high school, friends from college, and complete strangers that I've never met before like my Chemo Angels.
I've gotten cards, quilts, blankets, candles, candy, emails, and so many other gifts from SO many people.
And I seriously don't know how I would've made it through this without all of that. I cherish every card that is sent (I've saved them all). I take my quilts with me to chemo. I cry every time someone sends me an email telling me that they wish me the best during this time.
And most of the time, I have no idea how to adequately say thank you. How do you say thank you for the funny card that made you laugh on the day that you felt totally defeated? How do you say thank you to the people that put so much love into a prayer quit that covers you and keeps you warm during your weekly trips to chemo? How do you properly thank the twenty-something people that came to Sioux City, IA on Monther's Day to just show their support for you and your family?
The answer is that there is no way I can possibly thank these people often enough. So I say thank you. And I'll say it again here in as public of a forum as I can manage, THANK YOU! You can never imagine how much your support means to me. It touches my heart every single time. Thank you.
And a BIG thank you to everyone who made my Mother's Day so incredibly special. Thank you Dawn for organizing this and making it a Mother's Day to remember.
Here are pictures of my "crew" during the big event:
So I've covered most of the bald part of losing your hair. The only thing I haven't done is shared my photos of when I shaved my head. This would be because I lost my camera cord. Thus I have no way of getting those photos off my camera for now. Once I figure that out, I'll post my head shaving photos :)
Disclaimer: all photos you will see are from my phone, which means they are not of great quality.
So anywho, let's talk about head coverings. Cancer patients have a plethora of head covering options. You have hats, scarves, wigs, paper bags... you know, whatever catches your eye.
And before I went bald, I really had no idea what I'd want to wear. I had a suspicion that I'd be more of a bald kind of girl, but I didn't want to go bald and realize I had an ugly head and THEN have to go shopping for stuff.
Because that would be seriously traumatic.
So instead, I went wig shopping before I went bald.
Now, I'm struggling with how to describe the thought of going wig shopping. Maybe just sit and consider this for a moment if you're a female that has never shopped for hair before. Does the idea appeal to you? Does it totally freak you out?
I was freaked out/mystified by it. How, exactly, does one shop for hair? Where does one go? Do you just go into a shop full of wigs and try on everything you see? What is the difference between human hair and synthetic? Does synthetic LOOK fake? Where can I even find a wig shop?
Let's just say I was apprehensive about the whole event. Because I like to KNOW about stuff before I shop for it. And I knew NOTHING about wigs. And the thought of going into a hair shop with wigs of every size, shape, color, and texture was overwhelming.
But it had to be done. So the first question was WHERE to shop for one. I went online and looked up wig shops in Minneapolis. And found 2. And they didn't have websites (I totally judge stores by websites). And they sounded more like costume shops than wig shops (based on the store reviews on google).
So I googled "cancer wig shop" (or something like that) and found out about medical wig shops.
A medical wig shop is a private, appointment only wig shop. You get one-on-one time with the wig shop owner who teaches you everything you need to know about wigs and helps you find one that will work for you. I felt like God had answered a prayer I wasn't even aware of having prayed.
So I called the proprietor of "It's Still Me" wig shop in Minneapolis. Her name is Jan and she is a cancer survivor. She could fit me in right away, so I drove over there (while waiting for my mom's flight to come in) and went through the wig shopping process. It was fabulous. Jan had the personal experience to educate me on what to expect when my hair did fall out. She understood that I knew NOTHING about wigs and took the time to educate me on simple things like how to put it on, brush it, and how to wash it. She even had a GREAT selection of scarves and hats and taught me how to tie them and wear them. It was exactly what I needed.
It made the idea of living bald for a few months alot less scary because now I had options. If I didn't feel like being bald for a day, I now had a variety of things I could do to cover it. It was liberating and made me a whole lot more comfortable with the idea of being bald.
So here is the wig I picked up:
Just picture it in dark brown...
I wanted something that was short, like my little pixie cut. But I wanted it to be hand tied because those were lighter and less itchy. So this was the shortest hand tied wig in the shop. Jan then referred me to a stylist that specializes in cutting hairpieces. Yes, a regular stylist COULD cut it, but wigs are a different texture than regular hair. And if the stylist screws it up, it's not like the hair will grow back.
So I went to see the stylist and he cut my wig.
And I hated it. It was big and bushy and I looked like a soccer mom with a bad haircut.
So I went back. And he shortened it a little more and thinned it out a little so it wasn't quite so BIG.
Here is the result:
It's a little messy but I had a 2 year old tugging on my leg while I was taking this photo in the bathroom mirror.
Verdict: I don't love it. I don't hate it. I wear it to big work meetings where people might not know that I have cancer. It gets the job done and generally looks pretty realistic.
Then I found out that the American Cancer Society gives away FREE wigs (I paid for the one above). And I thought to myself, I would love to get a really fun wig. Something totally unexpected. Something I can just have fun with. Why not?
And this is what I got:
Yep. It's red. And long. And totally fun. I call this my "I'm pretending to be 23 and a party girl" wig.
So those are my wigs. I don't wear either all that often. I pretty much just wear them when I have a work event or when I just feel like "blending in" with other people.
Next, we can discuss hats... I have alot of very fun hats!
For those of you who don't know, I believe in Murphy's Law.
Murphy's Law says this: if something CAN go wrong, it will. And I personally feel that my life in the past year is an obvious example of that. So much so that it is now humorous.
If I ever get a tattoo, it's going to say something like "Murphy can bite me!"
So while I had great intentions of writing a bunch of blogs this week and sharing photos of my wigs (yes, I have two)... murphy had other ideas.
And I got sick. Like didn't go to work sick. Which basically means I was almost dead. OK, so maybe dead is an overexaggeration, but I felt like poo.
I lost my voice completely. And, just for the record, do you have any idea how difficult it is to reprimand a 2 year old in a whisper?!?! Seriously. For like the hour each day that I was out of bed and taking care of Caleb, he completely ignored me. Or thought that the whispering was a game and would whisper everything back (which was really cute actually).
And on top of the loss of voice, my head hurt and my body hurt and I was all stuffy and snot was everywhere... and I was a whiney mess. And I actually napped!!!! I pretty much never nap. I don't think I've taken a nap since AC (and prior to chemo, my last nap was in the weeks after giving birth).
But basically, I turned into a big, whiney, crabby baby. I usually hold it together a little better and "tough it out". But this time around I just let myself be cared for. Because I could. My husband was home and I could lay back and be cared for without any guilt of inconveniencing anyone. What bliss!
So I promise to write those blogs soon because I know a few people are DYING to see my wigs (aka Julie). But as a teaser, I will leave you with two photos.
First, here is a picture of the wig I got. But mine is in a dark brown. And I got it cut shorter.
Photo from Wigs.com. Wig is Nocturne from the Raquel Welch line
And here is a picture of my college basketball coach. Why would I give you that? Because I feel like her haircut is kind of what my wig looks like. This isn't a bad thing. But it IS wierd to me that I somehow ended up with my coach's hairstyle...
Photo is from the Boston University Athletics website.
My brief obsession with hairloss started back in January. My doctor and I had finally decided on a treatment plan and once I was comfortable with that, my mind quickly moved away from "if I don't choose the right drugs I might die" to "holy crap, I'm going to be bald."
And I got all obsessed with it. Not quite stalker obsessed, but close.
I mean I KNEW before this that chemo patients lose their hair. That's not exactly front page news. But the things I had never considered before were these things:
1. When - does it fall out like as the first round of drugs are being pumped in? A week later? Or should I just expect it to fall out from all the stress? :) Do people usually shave their heads in preparation? What does it feel like? Does it hurt? Answers: my hair fell out about 16 days after my first dose of chemo. I shaved my head when it began to fall out. It does hurt. Kind of like a bad sunburn on your scalp.
2. Where - is it just your head? eyebrows? eyelashes? what about those armpits? and leg hair? and... ummm... OTHER body hair? Answers: it differs for everyone. I've lost everything except my eyebrows and eyelashes (and those are getting sparse). Although I have still had to pluck my eyebrows and shave my legs throughout chemo, which I kind of think is BS. I think God should've made one of the symptoms of cancer that you never have to do any personal grooming and will still smell like roses every day. Because sometimes showering is hard.
3. Is there anyone that has ever met one of these mythical cancer patients that did NOT lose their hair? The side effects say "most" cancer patients do... which would mean that some don't? Do these white unicorns of the chemo world ACTUALLY exist? Answer: no reported sightings of anyone that has ever kept their hair during chemo.
4. How long does it take to grow back? What does it look like when it grows back? Is it the same? Same color? Same texture? Answer: my hair has started to regrow during Taxol. It's too thin to really know what it looks like (you have to really LOOK to see it). But according to other chemo girls, it'll start to grow back in force about 4-8 weeks after finishing chemo.
My questions were seemingly endless. And THEN there was a whole new world of wigs and scarves and hats and TONS of other stuff. I became suddenly, freakishly curious about the entire event of losing your hair.
And the wierd part is that I am really not all that wrapped up in my hairloss. It's not like I was interested in this because I was so nervous about losing my hair. Nope. I was just intrigued by the idea of it all.
To be painfully honest, I'd always been curious to see what it would be like. You have people like Demi Moore and Sinead O'Connor and Britney Spears that just shaved it off for fun. And on the days when I was sick of doing my hair or just having a bad hair day, I'd think to myself "Maybe it would just be easier to be bald."
Quick prayer: Dear God, next time I think something like that, please do not give me cancer. I wasn't serious.
Anywho. This became a period in my life where I was visiting the Young Survivor's boards daily and asking my multitude of questions. And I kept apologizing because I felt like I was just asking too many questions. But then I read posts from other women that had the same questions and realized I was totally normal. At the point in my process that I was at (after diagnosis but before starting treatment), this was a totally normal thing to do.
The only abnormal thing was that I wasn't sitting at home in tears about it. Actually, I was kind of the exact opposite. I was sitting at home wondering how I was going to get people to treat me like I wasn't about to die.
I'm completely serious.
I knew that my hair would fall out. I knew I probably wouldn't want to wear a wig/hat/scarf every day. I knew I'd be running around bald. And baldness = pity from most people. Because they know you have cancer. And they feel bad for you.
And that's not a bad thing. I mean I've gotten nothing but AMAZING customer service when I go out to restaurants bald (I consider this the only perk). But otherwise, I just really don't do well with pity. I think I have a great life (cancer aside). I am blessed beyond comprehension. And the last thing I wanted/expected was pity.
So how do you stop pity? How do you get people to not treat you like you're gonna die? If you're wondering what I mean by this, I'm talking about those people that come into your office, close the door and say "How are you?" (in a tone implying your dog just died) and when you reply "Fine" they don't believe you and they tilt their head to the side and say "No really, how ARE you?"
Because OBVIOUSLY you MUST be hiding the REAL pain that you're feeling. And isn't that just sad?
I knew that if I had to go into work each day with people treating me like that above scenario, I'd go nuts.
Thus, I figured I'd go the route of humor. Because it's really hard to pity someone if they're laughing about it.
So I started hatching ideas on how to make my coworkers laugh. I got funny hats. I came up with some funny ideas of things I could do (like paint my head around easter like a giant easter egg). I just generally had a few one liners in the back of my head that would hopefully easily dismiss any unease that others might feel.
So far it's worked. My first bald day in the office, I went out to lunch with a few coworkers and not one person said anything about my lack of hair and new fashion statement of wearing a head scarf. So when a quiet moment came at the table, I said "You know, I'm really disappointed in all of you. I'm wearing a scarf and hoop earrings and not ONE of you has made a pirate joke. ARG!"
This quickly brought everyone to laughter. And it was fun. Because honestly, I needed a laugh at that point. I wasn't feeling very well and I needed a good chuckle.
From that point onwards, these coworkers have always been quick to share jokes with me. On some of my worst days, they've come into my office and instead of asking me "how are you?" they've made me laugh with something silly.
I'll leave you with my favorite joke so far:
Q: Why did Mickey Mouse break up with Minnie?
A: Because she was f*ckin' Goofy.
This week, I realized I haven't written much about one thing that is on every breast cancer patient's mind: hair.
Seriously. This is a VERY big deal.
Let me give a very brief (and severely watered down) version of what a cancer diganosis looks like for a woman: OMG! I have cancer! I'm going to die! OK, talked to a doctor, have a treatment plan. I'm getting chemo. Chemo will help me not die. YAY! Oh shit. Chemo is going to make me lose my hair. When will I lose my hair? Am I going to be one of those ugly bald women? Do you lose ALL your hair? Like, everywhere? When will it grow back? Oh God. I'm going to be one of those bald, pitiable, bald, awful, bald, sick looking, bald cancer patients you see on TV. EW!
OK, that's obviously playing up the value of hair to a cancer patient and playing down the fear of death. But it might not be quite as far off as you think. In my experience with other female cancer survivors, hair is HUGE.
I'd say that for a woman, hair is one of those things that each women feels "defines" her as a female. I'm sure men would say it's the stuff below the neckline that is more important (wink wink), but in girl world, there's alot of vanity and ego that is tied up in your hair.
Hair is like your most important accessory.
So the loss of your hair is huge. First, there's the emotional loss of something that you associate with your femininity. There is insecurity that goes along with it. "Will my husband/boyfriend/significant other still find me attractive?" Note to men: than answer to this question if your wife/spouse/significant other asks you is "I think you're even sexier than when you had hair." and say it with CONVICTION.
Second, baldness is just a big, fat, daily reminder that you have cancer. Trust me, cancer patients don't forget they have cancer... but sometimes you can ignore it. Early in treatment, you might wake up feeling great and can pretend that you're who you were before. You can pretend that you're just like everyone else. But once you lose your hair, that illusion is totally gone. And unless you wear a wig, it's like walking around with a freaking neon sign over your head proclaiming "THIS PERSON HAS CANCER".
Third, there is the added stress of making a daily decision regarding how you want to handle your baldness. Do you wear a wig? a hat? a scarf? go "topless" (aka bald)? It's just one more decision you have to make every single day when all you want to do is survive. And you have to learn how to do all those things because learning how to wear/tie a scarf or care for a wig is NOT as effortless as it might seem.
Obviously, the emotion tied to this differs greatly depending on the person. I've always been a bit of a ponytail kind of girl. If a daily hairstyle takes more than 5 minutes, chances are that it won't be a daily hairstyle for me :) I just never felt like my hair defined me. But that's just me.
For many other women, it's a really big deal. I can't tell you how many young cancer survivors I know literally use the words "my hair is like my 'signature' thing" or "my hair is my most memorable attribute". And for these women, losing their hair is possibly the most traumatic thing about chemo. And I totally get it.
So to give this HUGE part of a cancer patient's daily life the respect/attention it deserves, I'm going to write a series of blogs about it. These blogs will be from my perspective (obviously) which means I'll probably be way more flippant about it than your average cancer patient. So for those of you who are friends/family of other cancer patients or know someone else going through chemo, please be sure to let the survivor in your life take the lead on how he/she wants you to react. I'm sure saying that was totally unnecessary, but I had to put it out there.
Oh and for all of you who DO know me and have been waiting for pictures of my wigs and other stuff... get ready! It's going to be fun!
I dreamt this weekend.
I haven't had many dreams since starting chemo, both literally and figuratively. I've been so focused on getting through this, that I haven't allowed myself to dream or wish much for the future. But I've also been tired to the point of not dreaming when I sleep.
This weekend, I had a dream and it struck a chord with me.
My dream was of a woman with dark brown hair in a wedding gown. She was about to get into a car with her new husband. She hugged me and said "Thank you so much! I love you Mom."
And then I woke up.
I lay there, next to my husband (he's HOME!), half asleep. And it slowly sunk in. I just had a dream about a grown up daughter on her wedding day. And I wrapped myself up in the promise of that dream. The HOPE of that dream.
And in my heart, I felt something I haven't throughout this entire journey. Certainty. I felt certain that I will live a long life.
I don't know if this will last. I don't know if doubt will creep back in (I suspect it might). But for today and maybe tomorrow, I plan to relish that feeling of certainty. I plan to enjoy a respite from worry.
And if I'm feeling really wild and crazy... I might even let my heart consider the thought of another child.
Thank you God for dreams. And for hope. What blessings they are.