Navigating a world that is scared of cancer.

So in today's post I'm going to be all over the place.

First off, the baldness is going okay. I mean, I wouldn't say it's great but it's okay.

It's really not as bad as I thought it would be. I really don't care as much as I thought I would. The main things I've noticed is how cold my head gets. But I'm really enjoying the scarf/turban look I did yesterday and today.

Very fashionista. The cancer clinic was raving about it today.

Oooo la la! I still feel pretty! It's all about the accessories. Big giant earrings to give your head some busy work to distract from your flat little egg top. For some reason bald heads and eggs have a strong correlation for me. I wrote a really, really outrageous poem about it that I will not be sharing on here. When my chapbook is done I'll share it. I'm writing it on this whole experience because hey, cancer is great writing material. Maybe this will get me published. You never know! So when the chapbook is done, I'll share it on here. I might be brave enough by then to share my poetry with you all.

Speaking of you fabulous readers, I'm getting an average of a 100 page views a day! A day! Oh my goodness. I have a real audience. I'll try to keep my cool without resorting to fangirl like screaming. Seriously, love you readers. Keep reading and I'll keep writing. Now the pressure is really on to not make a typo or misspell something. 

Of course if I do, I have freakin' cancer people. I'll make all the typos I want.

Haha cancer card.

Speaking of the cancer clinic, things went well today. They didn't have to access my port to draw blood- they just pricked my finger. That made my DAY. I'm very picky about who pokes my port. Giggity.

Sorry, no more dirty jokes. For about five minutes.

Yes, doctor's appointment went good. My oncologist is my homeboy. He's wonderful. He crafted a game plan so we can put some extra days between one of my chemo sessions that happens to end two days before commencement. 

Yeah, that sucks. I'd like to graduate and get my degree without throwing up on someone or fainting on stage. (You all realize I'll still go no matter how sick I am so this is a real possibility)

So his game plan is to move our dates by one day here and there to change the spacing. So instead of having only two days to get back to normal I could hopefully have a week. 

That's fabulous. So I go back to chemotherapy on Thursday now, one day early. Oh yaaaay............

I wonder if they'll have that basket full of soft and silky ugly hats there. The uglier the hat, the happier the hair follicle.

I told you I was all over the place.

Ah yes, my scalp. That shit hurts. My hair follicles are angry. In my head I envision them looking like this: 

That's kind of how I imagine a hair follicle looking. Seems about right to me. It's like a skinny pickle alien.

Most of the pain is because I have some stubble left so putting on caps, scarves, and wigs pulls on them which angers the hair follicles.

They're so pissed off.

So once they fall out (hopefully soon!) it will feel better. Or so they tell me. 

That's why I haven't put on the wig yet- the wig cap makes my scalp feel like that angry pickle pictured above.

Is that a pickle?

Let's get back on track here. 

One thing I want to address is the elephant.

That giant elephant.

We've seen this depicted in movies and television when we talk about cancer. Heck, every movie I mentioned in that earlier post about the lack of baldness in cinema each talk about this. Almost always the cancer patient gets dumped. A loved one cannot deal and won't talk to them. A friend avoids them. And so on. 

Some people cannot deal with cancer.

Before my diagnosis, I could understand this a lot more. Some people hear cancer and they run for the hills. Their minds cannot process this horrible disease impacting someone in their lives. They don't know what to say. They don't know how to deal. They're overwhelmed.

Maybe it's my mood swings (yaaaay menopause is coming!) but this angers me now. I'm trying to bring my empathy back to the level but it's hard. I'm the one with the disease and they're overwhelmed? But it's true- people do get overwhelmed and cannot process this.

Sadly, I've run into this. Anyone with cancer probably will at some point. It's unfortunate. 

I've noticed this even in public as I've gone out around town with my head scarf today. The staring, oh my, the staring! The outright gawking and pointing in the restaurant at lunch was about the worst I've seen so far. Ruuuude!

The young cashier at the checkout at the grocery store looked terrified of me last night. Honey, I'm not going to wig out (see what I did there?) like the girl from the Exorcist and throw up everywhere. Or keel over on the conveyor belt. 

Oh well. You get used to it I'm guessing. But it sucks.

Because it leaves you with this feeling that your disease defines you. That you are a big lump of cancer.

People. Having cancer doesn't make you cancer. I am still the same person. I laugh at the same jokes. I use the same inappropriate sarcasm. I am still me. 

I'm not going to lie and say it doesn't hurt to see people pull away that can't deal with this. 

Did you know that 1 in 2 men will get cancer? 1 in 3 women will follow suit. Don't believe me? Fact check me, fool. Those are some friggen huge statistics. HUGE. 

I feel that cancer has this scary stigma attached to it aside from it's own scary reality. This is perpetuated by television. And movies. Cancer is scary. It's horrible. It's one of the worst things in the world. BUT people beat it every day. Survival rates for many types are in the 90 percentiles. 

Like mine.

So here's my public service announcement: I am still me. I am the same person I ever was. My head is just a little more shiny.

On the opposite side of the rainbow, we have the people that shine in a crisis.

That step forward to take care of you, to be your rock, to be your support.

To buy you an electric blanket because you said you were cold.

To bring you twinkling fairy lights to brighten up your living room.

To come clean your cat's litter box because the doctor says you can't. 

To bring you a customized Cancer Slaying sword to chemo.

To drive all the way from Milwaukee for moral support.

To buzz your head because you're too scared to. 

To help you craft the perfect mohawk.

To call you every day just to check in. 

To be a rock to lean on across the miles.

To donate money to ensure your family's financial survival.

To drive all the way to chemo to play board games with you.

To make you beautiful cards in 4K with giant hearts on them. <3

I could go on and on and on. There's so much more.

For every person that can't deal with your cancer, that won't talk to you, that can't face it: there are five times as many that are transformed into friggen heroes by it.

And these are the people that often get forgotten at the sidelines. 

Cancer sucks. It really, really, really sucks. But it brings out the most beautiful actions out of the wonderful people in your lives. 

So focus on that. Not on the people that can't face you.

Because really, it's not you they can't face. It's the cancer.

And I am not my cancer. 

On that note, I have a pound of Girl Scout cookies to eat. Because I'm the only cancer patient (actually, not really it's quite common) to gain weight instead of lose weight. 

Stretchy pants for the win!

Shave time!!!

Today was the big day.

We had ourselves a little hair party/shave fest.

Well, I wouldn't say it was a party because there was no taco dip.

Why wasn't there taco dip?

But we did have blue and pink hair dye. So that's pretty awesome.

I really, really wanted to do a mohawk before the final shave. I found that was extremely necessary.

And that made a huge difference in how I handled this emotionally.

It was easier to laugh off this horrible situation by using goofy hair styles as a coping mechanism. 

Because mohawks are just awesome. 

So yeah that's probably the coolest I ever looked. 

This has been a hard journey to get to this point. From the moment I found out I was going to lose my hair my self esteem has been severely shaken. But I can't let this define me. I am not my hair. I am a kickass person. And it doesn't matter if I have hair or not.

Honestly, I'm relieved that it's done and over with. Now I can play with scarves, hats, and wigs. I can just accept it and move on. No more hair, it's all done. The moment it started falling out I was on a constant edge of my seat just waiting to see a bald spot. Just waiting to touch my hair and see strands coming out on my fingers.

Even though it was a difficult moment it was like releasing a breath I've been holding. 

So it's over. The baldness is here and that's just okay. I've got lots of creative ways to deal with it. I'm not going to lie- I'm a bit freaked out. I don't want to look at my head in the mirror if it's not covered up. But that will come with time. It will take time to deal with this and adjust. 

So here are the pictures from our hair shaving/dying/mohawk party!

One half of the mohawk done!

Mohawk painting!

Cotton candy mohwak!

Brenda, my sister-in-law, helping style my awesome mohawk

Hardcore!

And... the baldness. That's my wonderful brother, Rodger.

Yeah so the mohawk was fun. I'm so happy we did that because it did wonders for making a bad situation into something fun. I look rather badass with a mohawk- that might have to be a new look for me. I don't think it matches my minivan though!

So in preparation for my baldness, I spent all morning working on my scarf tying skills. And I must say there are tons of different ways to make scarves look like really pretty hair.

I think this design is my favorite so far: 

Now that looks pretty sweet. It will do. I found an awesome website with tons of different scarf tying ideas. The instructions for this style and many others are here. It's a great website with plenty of possibilities. So it's a good alternative for days when I don't feel like putting on a wig.

So the time has come. And I'm alive. I'm breathing. I didn't start on fire.

I still have my power. My hair might have been falling out from the chemotherapy but I ultimately made the decision to be bald. To call for the clippers and go straight to that stage.

And I am still a wonderful mother, a compassionate friend, a passionate writer, an empathetic soul, and my literary mind is the same as it ever was. My bald head has nothing to do with any of that.

It will be okay. It's just hair.

Dun dun dun.

Well kids, The big day is here.

Was sitting with some girlfriends and I ran my fingers through my hair......

Yup.

Clump of hair. Now the strands are just thinning progressively.

I am going to have one more HAIR day tomorrow and then we're buzzing it off this Sunday. Going to have a hair party with it. Get a mohawk. Let Adrian color it. Whateves.

The tingling scalp is weird. I was told about it but not necessarily enjoying that.

Now I'm not going to sit and pretend I'm taking it (as in this moment now) in perfect inspirational grace.

This shit sucks.

I'm angry and pissed off that I have to deal with this. I'm a good person. A great mother. A good friend. I donate to Toys for Tots. I recycle. I adopted a shelter pet. I don't eat animals.

So stupid.

But anyone who's had cancer is pissed off at some point too. It just flat out sucks.

BUT that chemo is KILLING it. And we want it nice and dead.

So there's a good inspirational speech for ya.

I found that clump of hair and I thought my heart was going to jump right out of my chest. It was so horrifying.

But we'll get through this. One more day of full on hair tomorrow when my mother and I take my son to the Children's Museum in Green Bay. He will have a blast. We'll get some 'goodbyeeeeee hair' pictures of me and him and then I will feel ready to say goodbye on Sunday.

And in the spirit of complaining earlier today about how movies do not portray cancer accurately.. Here's a picture of me feeling pretty damn shitty as I cuddled on the couch with Adrian.

He's so friggen adorable. And yeah, it's not all grumpy cat pictures.

My days are starting to form a pattern. 

When I first wake up. I have severe stomach cramps that kill me for a little bit. Then I feel good and I stay feeling good (overall- the stomach stuff is always lingering and you just learn to ignore it.) Then 4PM hits and I start feeling like junk. If I stay up late enough I start feeling better. It's a chemo roller coaster! I'd rather have Disneyland because this ride sucks.

I had a doctor's appointment today and they checked my blood cell counts.

And they look absolutely awesome!

Plus I learned that my rare type of funky cancer has a 97% survival rate... not just 95.

So sweet.

There's more important things than hair. My blood counts are awesome. My body is handling chemotherapy like a champ. My doctor thinks I'm fun because my cancer is so easy going. 

It's all good. It's just hair. Right?

Sigh. Maybe I'll write my hair a letter. It might look like this: 

Dear Hair,

You stay in my god damn head for one more day. One more afternoon. I want cute pictures with Adrian at the Children's Museum.

With my hair. 

One last hoorah. I'll bring a hat just in case.

SO STAY IN MY HEAD!

Love,

Linds

Sure, that sounds good. 

IT'S JUST HAIR.

Where is the baldness in popular culture? Survey time! (Movie spoilers lurking in this post!)

So I'm interested in doing a survey. An experiment of sorts. So I'm calling out to all of you in the Bloggersphere and Facebook land.

Here is my question:

Which movies about cancer have you seen someone actually lose their hair? Were they male or female? Which movie?

I'm just curious. There are two of my all time favorite movies about cancer that come to mind.

Fault In Our Stars and Stepmom.

And in neither of these movies do the characters lose their hair.

In Fault In Our Stars we saw Hazel as a child with no hair. Assuming that was during her chemotherapy and then her participation in a clinical trial saved her life. So I'm guessing chemo was no longer necessary at that point.

That makes sense.

And one thing I have noticed: when there's kids with cancer they are always bald. So bald cancer kids are okay but bald cancer adults are not?

But Gus? No chemotherapy for him at all? I find that surprising but I'm no doctor. I get the guy lit up like a Christmas tree during his PET scan but they wouldn't even try a little chemotherapy? Radiation? Why in the hell does this guy get to keep his hair?

LOOK AT THAT PROMO PICTURE! Their full locks of hair piss off my soon to be empty hair follicles. LOSE YOUR GOD DAMN HAIR LIKE THE REST OF US.

I just find it odd that in a movie that is so famously about people with cancer......... all the main characters have their hair.

Even the side characters keep their hair! There is not one baldy in that entire movie with a speaking part!

I really do not feel like that is a reality. Even all the kids in their cancer support group had their hair!

Since now I'm in the cancer club I am now around people quite often that I have cancer as well. Whether this is at chemotherapy, my doctor's visits, classes I've attended.... and so on.

One major thing? No one has any damn hair.

That is the reality.

So why don't popular movies always show that as a reality? Because hair is such a conventional part of beauty? Because we can't have a gorgeous main character be depicted in any way that makes him or her unattractive?

Are we really that shallow?

It appears the movie industry is.

Which is really not surprising. But as someone that is looking down the barrel of hair loss at any moment... it would be nice to see this HUGE part of cancer treatment be included in popular culture.

Cancer is a big cash card for movies and television. They use that to cash in on a disease that kills millions and destroys lives. But survivor stories are great stories- there's no denying that. They touch us. They make us feel such degrees of empathy and admiration for people that battle daily against this disease. It does make for a great story.

So why not include the very real and personal conflicts about hair loss? That is such an important part of this journey.

In Stepmom we have Susan Sarandon diagnosed with cancer which then easily becomes one of the main focal points of the movie. This is a movie I probably won't be able to watch (used to be one of my all time favorites) for awhile since my diagnosis. I just have a feeling it will reduce me to a giant lake of tears. Grab a boat.

But seriously, again this is another famous movie that has a main character with cancer.

AND SHE KEEPS HER DAMN HAIR.

What? Are you serious? All this chemotherapy and she keeps her hair? I find that hard to believe. She's just one of those lucky ones! Lucky Susan Sarandon gets to keep her hair! It makes for better TV to have attractive people in the spot light.

We all know Hollywood doesn't find bald attractive. Unless you're Vin Diesel.

Bald is not attractive if it's a sick bald.

Especially for ladies. We saw in 50/50 the main character played by Joseph Gordon-Levitt shave his head. So yay for accurate representation?

Now being the academic I am we have to think critically about that.

Do you think the gender has anything to do with this? Sorry to get all professor on you but geez, OF COURSE IT DOES. Gender always matters.

So the fact that he shaved his head but Susan Sarandon didn't? One of the most famous and attractive women in Hollywood isn't going to play a bald lady. Just no way.

It could be as something as simple as a director's decision. It really could be.

Or it is something more. Something more complicated about the way popular culture views cancer. Cancer is a badge of heroism in popular culture. But yet these characters are always presented as attractive, healthy, and overall good looking.

Let me tell you something. Cancer doesn't make you glow like you're pregnant. It doesn't give you some type of special C word pretty look. Maybe you glow if you had enough radiation- I really don't know.

But cancer fucks up your appearance. I just went to a class that told me all about how cancer will fuck my looks up.

You lose your hair. You possibly lose your eyebrows and your eyelashes. You gain weight.You lose weight. Your nails could fall off. They could become discolored. Your skin becomes super dry. You get bags under your eyes.

The list goes on and on and on.

It's enough to make anyone, even someone with a nice level of self confidence like myself, freak out a little bit.

So why the hell is this not represented accurately in popular culture?

I want to see a cancer movie get popular that has a main character with no hair. No eyebrows. That looks like hell in a hand basket on their bad days.

I want to see the reality. Not this prettied up version of cancer that sells tickets at the box office.

Cancer is not pretty.

It really isn't. Sure, our strength is beautiful. Our determination is sexy.

Fighters are hot. In all the ways.

We are some sexy cancer bitches.

But seriously. Physically, things are going to get tough. And again, as someone just counting the days down to baldness... I would like to see that baldness reflected accurately in movies about cancer.

Show me the bald people.

Show me reality.

EDIT TO ADD:

My brain can't stop whirling on this!!!

So some people have pointed out television to me. And that's a whole other blog post.

But for examples we have Lynette from Desperate Housewives, Celia from Weeds, and Samantha from Sex in the City showing some baldness during their cancer treatment.

YAY for representing cancer accurately.

But wait..... these ladies all eventually returned to a traditional standard of beauty. Their hair came back and on they went being gorgeous on television.

Oh shit.

That's not really the same now is it?

My theory: television has more flexibility as far as beauty standards go because at some point the character can/will regain their traditional image of beauty that fits in with mainstream pop culture and patriarchy.

And that means: at some point the cancer will go away and they will be pretty again!

It's not an all encompassing thing like being bald in a movie is. It's a short time deal.

But hey, it's something.

Sportin' the logo

Everyone's cancer has a color. The most well known is the PINK PINK PINK for breast cancer awareness.

Well, lymphoma is lime green.

Which personally I think is way cooler. Sorry other ladies, I like my green. I thought it would be fun to have some wacky/inappropriate/funny shirts to wear to chemotherapy. They came today and I'm already giggling at them.

Here's a preview:

Now everything about that is just fun. 

I'm getting used to the new haircut. I'm starting to wonder why I haven't cut my hair short before because oh my goodness it is convenient! I do miss my long hair though but I'm adapting well to the short hair. Just trying to think practical thoughts. 

Not big long sweeping hair thoughts. Sigh.

Any day now my hair will fall out so now we're just playing the waiting game. In The Hair Post, I detailed my feelings on that. The instant I find it coming out I will call my brother and we will buzz this shit off. Rip the band aid off. JUST DO IT.

It's harder to feel strong as the time comes. I think it is partially going to be a devastating moment. Our hair defines us in so many ways. But like I said before, I just need to remind myself that I am more than hair. We all are. We are going to make it into all these crazy shapes and designs to make it more fun. My son can participate and I think he will like that. We can do a mohawk!

In that spirit, I was able to borrow a wig from the cancer society. They didn't have the best selection (see previous wig mullet post) but I did manage to find one fun one. 

Grumpy cat is just poking in to question my redhead and pink  shirt choices. But I think this could have possibilities. I put a little hippy headband in it and that really helped pull the look together. It's a bit 70s but I think it's cute. Variety is good. 

Speaking of variety, I feel like I'm falling down a cliche cancer rabbit hole.

I bought a blender to make healthy smoothies. And now I'm considering yoga to help keep somewhat fit in between all this couch sitting and resting. 

Yoga and smoothies?!

What is this strange world?!

I do miss coffee. I miss the idea of it so much but whenever I try to drink it my entire body wants to vomit and seizure. WHY!?!

Oh well. Being healthy isn't a bad thing. But I find it rather unfair that the moment I have doctors and nutritionists telling me to stock up on calories that NOW I want fruit.

Whateves.  

Birthday Mania!

Hey everyone, do you like my new wigs?

Look it's Shirley Temple!!! I'm the redheaded stepchild!!

 What time is it? Mullet time!!!!

I really liked this color. It's sassy and fun! I was able to borrow one that looks similar in color but just shaped a lot more flattering. Sometimes I might just feel like being a red head!

Ahhhh! All those gray hairs came in! I knew they would the instant I turned 28!!!!

I was lucky yesterday. I don't know if I was just over hyper because it was my birthday but I had a GOOD day. The side effects from the chemo did not drag me down too much throughout the day. I felt like I went a little manic from having real energy so we had a busy, busy day. 

But it felt so good to be busy. 

The wig pictures are from this awesome Look Good, Feel Good event I went to hosted by the American Cancer Society at Aurora hospital. It was so awesome. I got a giant bag of designer makeup- easily worth up to 300 dollars. So YAY for makeup I would normally NEVER spend that much money on. They showed us how to fill in our eyebrows (in case they decide to take an exit thanks to the chemo), tie different types of scarves/turbans, and wig care tips. After the wig care tips we were tossed a giant box of wigs to try on!

And that's when I found that mullet wig. I'm not sure who would willingly pick out a mullet wig. Maybe the cancer has you so depressed you feel like there's no hope? The will to live as been eaten away and replaced by a synthetic mullet? Either way, if you want a mullet- wear the mullet. 

So that was fun. Props to the American Cancer Society for hosting that because I was able to meet other women with cancer, have a lot of giggles, and learned a ton of 'cancer beauty tips' I was unaware of. Awesomeness. Pro tip: if you get the big C- make sure you get yourself to one of those events!

So other than my wig selfie marathon, my birthday was a success. Since I can't drink (not that I was a heavy drinker to begin with) I decided I earned a manicure. 

Pink polka dots! That was a good idea. My sister was an angel and called ahead to get me a gift certificate. Thanks sis, love ya. So I think that's going to become an in between chemo tradition. Since I can't drink Starbucks anymore (coffee tastes nasty to me now-it's a tragedy) all that saved coffee money can go to biweekly manicures after chemo treatments. If you look good, you feel good. I really do believe in that philosophy for myself. It's important. Diva it up!

I was struck by an insane dedicated desire to make a fairy garden. I got some birthday money (thanks Grandma!) and was able to use that to start my garden. This was actually really good for me. It was nice to have a project and put all my restless energy into something productive. I think that will be a good way to continue to cope with things- especially on days if I don't have enough energy to go out and about. Projects, lots of projects! Maybe I should learn how to knit!! 

So I went to Ivy Trails in downtown Manitowoc to begin my fairy adventure. That is a great little shop- worth checking out! I finished at Hobby Lobby where I found the container and all the craft supplies. I wanted my fairy garden to be portable so I can bring it to chemotherapy with me. I know, like I don't bring enough as it is. But I want my room to be pretty!!! And this fairy garden just makes me happy. 

So ta-da!

I don't know why I was so determined to make this garden and make it NOW. Maybe it was because I can feel the sense of control over my own life slipping and I just wanted to have full control over something else. Even if it's just little miniature fairies in a fake garden. I think it turned out beautiful and will be a nice thing to bring to chemo treatments with me. 

I feel that sometimes I've been down playing how hard this has been so far on here. I don't mean to but I've never been one to sit and talk about my emotions in a healthy, non-joking way. I don't like emotions in most contexts. It's easier for me to deal with sarcasm and humor. But this has been a hard road so far. The side effects suck. Yesterday I felt great all day which was fabulous. Yet I pay for that today when I wake up in so much pain I can barely get out of bed. It comes and goes. I just want to keep living my life as normally as possible but sometimes I forget that things are not normal. I have cancer and I need to understand my limitations. And take help when it's offered. Rest when I can. 

But anyone who knows me well knows that 'rest' is a foreign concept when there's something I could be planning or vacuuming. But I'm trying.

And this is the part I want to give another shout out to all of those that have been my wonderful caregivers, helpers, and support since I got home.

I would have never been able to do this without my mom. I couldn't imagine going through this without her by my side to help me every step of the way.

My brother and his wife Brenda have been amazing from everything to taking Adrian for fun activities and helping around the house. Thanks guys.

My friends, all of you, are just the best. I'm amazed sometimes by what a wonderful motley crew I managed to accumulate over the years. 

All my family in Colorado for the constant support and encouragement across the miles. I miss you all so much.

And Adrian. That little boy has been the best support. Every time I look at him it makes me stronger. Every fighting step I take is for him. 

So thank you, all of you. And to those who have been donating, thank you from the bottom of my heart. I said this on Facebook but it bears repeating on here. When I was first diagnosed with cancer I had never felt more alone. But since I announced my diagnosis, I have never felt more loved.

So moral of the story? Try on fun wigs. Make sure you find that Look Good, Feel Good event. Get a manicure. And build yourself a fairy garden. 

Happy Sunday!

Today is homework day. Have a giant pile of homework awaiting my immediate attention. All my teachers have been amazing about all of this, by the way. So go professors and your awesome understanding.

The chemo side effects are beginning to kick my tushie. It was a challenge to even sit still for my haircut yesterday. But I'm forcing myself to get up and do something every day. I can't handle laying around!

So since it's Sunday, which is homework day, I'm going to cut today's blog post short.

And just leave this here for you.