I Don't Want Solidarity

There is a buzz about a celebrity who just cut her very long hair. Clare Bowen who stars in the ABC drama Nashville recently just cut her hair very short because she wanted others to know that hair doesn't make the person. 

"I was inspired when I heard a story about a little girls who said she couldn't be a princess because she didn't have long hair," Bowen wrote on Facebook. "I wanted her and others like her, to know that's not what makes a princess, or a warrior, or a superhero. It's not what makes you beautiful either. It's your insides that count...even if you happen to be missing half of them." 

While I agree with her I don't want her solidarity. She goes on:

"Every scar tells a story every bald head, every dark circle, every prosthetic limb, and every reflection in a mirror that you might not recognize anymore. Look deeper than skin, hair, nails and lips. You are who you are in your bones. That is where you have the potential to shine the brightest from. It is where your true beautiful self lives." 

While I agree with her, I don't need her solidarity. She concludes:

"If it makes even one person think twice about judging another, then in some small way, the world is better."

While I agree with her, I don't want her solidarity. 

Yes, I know she had cancer when a child and was bald, scarred, etc. I know all that. But it is totally different when you are an adult. I don't want her solidarity and here is why:

I was 40 and bald because cancer took my hair. One day I felt good enough to go to Costco. I knew what usually took an hour or so to shop was going to take not only two or three hours but multiple trips to the car because I was still physically wiped out. I have to shop at Costco because, cancer or no cancer, I was still the mom to six kids and all were teenagers. Not only that Costco has a bunch of great frozen dinners and sometimes, that was all I could do for dinner.  I had ended treatment and I actually saw a few hairs where my eyebrows once were. I had peach fuzz. The very kind all my kids had when they were born (well, except my second child who was born with a head of hair). I was actually feeling GREAT compared to the last 11 months. I thought I could even handle all the food smells in Costco without throwing up.

Just as I was about to load my stuff on the belt, one person called me "sir" and I about lost it. Any self-esteem I felt coming back that morning as I stood in front of the bathroom mirror and examined my cancer riddled body was gone. I did everything I could not to cry right there on the spot. It would look ridiculous for a 40 year old grown woman to cry. I didn't make the second trip through the store. I just got in my van, called my husband and sobbed my way home. 

I don't want solidarity.

What does cutting your hair completely off or even a pixie cut have to do with cancer? People who do this aren't sick. They don't understand. It's not just hair on the top of our head. It is our eyebrows, our eyelashes, our legs, our everywhere! Those people will see a little stubble in a few days. I went six months with no hair! Completely from tip to toes: NO HAIR!

I don't want solidarity.

Those people don't have dark circles under their eyes that no amount of make up will change. And just for the record, your skin cells are sluffing off so fast that your face is kind of raw from  washing it. Make up is only for the days when you HAVE to look good. But no mascarra because when you go to take it off you will lose any eyelashes that you have left. Washing your face just plain hurts. 

I don'w want solidarity.

They don't have scars from surgeries that are raw and sore. 
They don't have tattooed dots on their body telling the radiation technician exactly where to aim that laser. 
They don't spend hour after hour in the bathroom puking their guts out just because they thought they smelt something. 
Their hairless arms aren't covered in bruises because some nurse can't find a vein. The vein can't be found because it is either so scarred from being poked so many times or you are so dehydrated that you could drink a river and you would still have flat veins (remember that puking?). 

I don't want solidarity. 

These people don't live every day with the threat of relapses. There is no fear that they will lose their hair again. They do not take a deep breath when call ID says, Dr. Kraemer's office. They don't fear the next lab report or scan report. They don't know the taste of "Banana Smoothie Barium Sulfate Suspension" nor do they know what a nuclear chaser is. 

I don't want solidarity.

They don't hear the clicking sound of MRI or CT scan machines in their sleep. 

I don't want solidarity.

They don't see a scar on their body every morning while dressing to remind them they have cancer.

I don't want solidarity.

I have reminders all over my body that I have cancer and that it will never be cured (although I do hold out hope). I have a port, a scar on my sternum, I think I counted ten tattoo dots on my tummy and a few more scars on my back that thankfully I usually don't see. 

I don't want solidarity.

But let's get back to the bald part. Hair is a HUGE identifier of who we are as women. I have struggled with my hair my entire life. I've never liked it. It's always been the wrong color, cut, texture, too straight, thin, etc. Then I lost it all and when it came back it was going to get new hair. NOPE! I got the same mousy brown thin straight as a stick hair I had before. But I had hair and for that I was thankful. But more importantly it said I was HEALTHY! Chemotherapy drugs were no longer coursing through my veins. 

In fact the day before this gal's hair cut went public I got a note from a male friend via Facebook,

"I saw you in the choir at Stake conference and thought, "Wow, her hair is getting long. That is soooo cool!" Not just for fashion, but what it means for your health. So glad you are still with us."

Hair means health! It doesn't mean solidarity.

Hair means I won this battle!

Those who shave their heads in "solidarity," I get you want to show support. I understand that and it might seem like a great idea and be the only thing you think you can do. But please do not pretend to know what it feels like. 

Bald means cancer is winning but I'm putting up a fight. Bald means the fight is still on. Bald mean sick. I see this every time I walk into the clinic for a check up. There is always someone who is standing on the doorstep of death. Plugged into a "dance partner" that is silently killing them. I just pray that they fight back and say, "Not today, Cancer! Not today." But if they give up, I totally understand the desire to go through those doors. I've been there. 

Cancer sucks!
Cancer kills!
Chemotherapy sucks!
Chemotherapy kills!
Baldness sucks!

Please don't show me your solidarity by cutting off your hair. But if you do donate. But I'd rather you keep your hair and donate your money so a researcher can find a cure.  Donate so a patient can afford to take a cab to the clinic. Donate! I really don't want to see your bald head and you don't want to see mine (although I do have a darn good looking head). I really want a cure for cancer.

I don't want solidarity. 

I want a cure for cancer! That's what I really want! 

Click the image to donate. 

It's Just hair; It'll grow back.

I truly was hoping to just skip this post, but I've been thinking about writing my feelings down for a couple of weeks and I can't ignore it now; especially if I want to sleep. I'm not getting nightmares, but it is close. So here it goes: a brain and heart dump.

Five years ago one of the most awful things happened to me: my husband shaved my head. I still remember that morning in vivid technicolor. I wish it would fade to black and white or maybe sepia, but no, it is horrifyingly in vivid color playing on the screen in my memory. 

I knew that day would come, but I was hoping I was going to be the exception, but I wasn't. It was the Friday after my first race (Vancouver, BC, half marathon) and the Friday before Mother's Day. My kids were in the production Build on the Rock that weekend. The first showing was that night. 

I woke up that morning with hair all over my pillow. I took my shower and I clogged the drain with long blond hair. My towel was full of hair. I wasn't smiling as I tried to brush my hair over the bald spot behind my right ear. I looked like a sick dog. No! I looked like a sick person! A person who was poisoning herself to heal herself. I didn't expect this to happen since I had been handling all the side effects with stoic pride, but this one was going to be different and I could tell that morning while looking in the mirror. I was hoping and praying it was a nightmare and I was going to wake up. 

Our family did our usually morning routine. We had family scripture and prayers. I made breakfast, probably pancakes and eggs. I'm sure I didn't eat anything as it all tasted horrible or I would throw it up later and I really, really hate throwing up. (Its a good thing I didn't get morning sickness or we would only have one child!) I know I sat down at the table because my husband looked at me from across the table and said, "It's time." 

Oh, those words were like a javlin through my heart.

"It's time."

I knew exactly what he meant. 

He got up from the table, thankfully taking his dishes with him and walked upstairs. It was the slowest but fastest walk I've ever heard. I heard him walk across the floor in our bedroom as the floor is right above where I was sitting at the table. I saw him reach for the box. The box that held the clippers. Those same clippers I had used for years on five little boys heads. I wanted Steve to stop and come down stairs and say, "April Fools!" I wanted him to yell, "Wake up you are having a nightmare." But he didn't. In fact he didn't say anything. 

He opened the back door to the deck. He put a stool out there. He plugged the clippers in. He motioned for me to sit down. He draped me in the teal cape. He then turned them on. I know why they are called buzzers. That sound echoed through my empty brain. My brain was void of thought. The canyons of my heart repeated the echo because it was void of feelings. I didn't know what to feel. I wasn't sure I could feel. 

The one side effect that didn't cause pain was causing so much pain I wanted to curl up and die right there! But I wasn't going to let Cancer beat me down. I wasn't going to let my children see me crumble under the pressure of imaginary pain. Or was it imaginary?

Without a single word spoken, my husband did the best and I know the worst thing he has ever done for me. He loved me! He loved me so much that he shaved my head. 

I still remember the sound of those long blond strands of hair hitting that teal cape. Yes, they make a sound when you listen in silence. I remember what it felt like to have clippers run over your head. Sorry kids for telling you for so many years, "This doesn't hurt; hair is dead." But then again, it really didn't hurt physically on top of my head as much as it hurt emotionally as it broke my heart.

Why was I so emotionally hurt? It's just hair.

Steve finished buzzing my head. He laid down the clippers then undid my cape. I was free, but I was frozen. I just sat there on the stool. I couldn't even see the trees that line our backyard. They are spatular. It was only five years before this date that we saw this backyard and thought those trees were just beautiful. I saw nothing! 

Steve must have put the clippers away because he was now gathering my hair to put in a baggie. I thought how kind of him. 

I stood from the stool and walked back into the house. 

My children, who all watched in silence through the windows, just stared at me. No one said a word. No one gasped. Shock just filled the house. 

Not saying a word, Steve kissed me and left for work. 

There is a mirror in our house that is in the hall way. You can't miss it. If you go out the back, you pass it. Go out the front you pass it. Go upstairs you pass it. Go downstairs you pass it. Walk into the kitchen you pass it. I put there on purpose. You can't miss it. You are to use it just before you leave the house to check and see what you look like. I didn't look in it. I couldn't. 

I walked slowly upstairs. I didn't want my children to see me see me for the first time. I wanted to do it alone. I knew it would be worst than a horror show. I just knew it. 

My heart was shattered. 

Cancer had won! Cancer beat me. 

There was no denying it now. EVERYONE would know that Cancer had won. 

I stood in front of my bathroom mirror. I know saw all the bald spots. My head looked ugly. I looked ugly. I was no longer a woman. I was Cancer! Cancer had won.

Just after I was diagnosed with cancer my hair stylist, Sandy,  helped me purchase a wig" just in case". I got it down from the upper shelf in the closet and took it out of the box. I had tried it on before, but I had hair underneath it. This was different. The fit would be different. I put on the knit scalp protector. That itched. I put on the wig. It was hot. It was scratchy. It itched. It was ugly. This wasn't what I thought I would look like when I picked that wig out. I cried and I cried hard. I took it off and threw it across the room.

I then noticed the baggy of my hair. I held it for a moment. The hair that for three years I was growing long in memory of my sister who in 2007 had lost her battle with Brain Cancer. Damn Cancer had won another Ostler girl's hair. 

I washed my face. Reapplied my make up. Put that damn wig back on and went downstairs. 

I taught school that day and not one of my children said a thing about my appearance. NOT ONE WORD! I think they were in shock. Or were they afraid of what I might say or do? Had their dad said something to them? 

I taught only for a little bit but because that wig was hot, scratchy and itchy. I couldn't concentrate and neither could my children. 

I couldn't get the fit right and I looked ugly. I saw it when I looked in the eyes of my children. I'm sure it was more stunned shock than horror shock, but I was changed. Cancer had won. And they knew it. 

About noon, I couldn't handle it any more and I called Steve in tears. I don't recall what either of us said. He said he was going to try to get out early and would meet me in Bellevue at a wig shop. 

I got in my van and drove to the shop. I walked in and was overwhelmed. I started looking around and of course there were mirrors all over the place and I kept seeing myself in that ugly wig. I saw Cancer staring back at me. To make it even worse, not one of the sales people offered to help me. I was not ugly, alone and probably had Cancer Cooties. 

I fingered scarves and remember the bag of scarves my dear friend Cheryl brought over a week or two ago for me to try. I remember her lovingly showing me how to tie them in different arrangements. She was the queen of scarves. They had some pretty scarves, but I could only touch. I didn't try anything on. 

Steve finally showed up. My savior. I cried on his shoulder. I think by now I had no eye make up on at all. It wouldn't be too long before I couldn't wear eye make up because I would lose my eye lashes too, but I didn't want to think about that then. 

I pulled out a booklet the doctor gave me and on the "Hair Loss" page was a list of local wig shops. We decided to go visit the five star one that was located in Seattle. Steve drove. We found the little shop and it was closed on Fridays. 

The only thing that kept me from screaming was that I had no energy left to scream. It had escaped my body with the salty tears that ran down my cheeks. 

Steve took me for ice cream.

I'm not sure what happened after that but that night we went to the production of Built on the Rock. My three oldest children were in it and I was excited to see it.

While waiting in line a friend who we had known for about 10 years was walking down the line shaking people's hands and welcoming them to the production. I was standing behind Steve and as he shook Steve's had he made small talk. He then shook my hand and introduced himself to me like we were meeting for the first time. I couldn't even tell him my name. It was all I could do to not break out in tears again. 

But Steve was beside me and that is all that matters.

I did very little talking that day. Steve too. He said very little but the two things he did say to me are tattooed on my brain. While hugging me in he whispered into my wig just above my ears, "I will always love you, hair or no hair." A little later when I had no more tears to cry and the moment was right he reminded me the time that our curly head Jason wanted his curls cut off. As I bit my tongue and let Sandy buzz his curls off Jason said, "They'll grow back mom; it's just hair." Steve grinned as he said, "It's grow back; it's just hair." 

It did grow back. It is just hair. And Cancer didn't win.