Wigging out

Adam and I at Kid Rock

Last Wednesday after chemo I summoned all my strength and surprised my family by joining them at the Kid Rock concert.  I took my new wig out for a spin around town, wearing it for the first time ever to the concert.  It looked pretty good but it didn't stay on for very long. The concert was outside, miserably hot, and we were all drenched in sweat.  About an hour in, I got too over heated and wound up having to take the wig off revealing a balding, sweaty, slicked back mess.  I  felt  completely exposed and super self conscious.  Thankfully, my family had the most perfect ways of easing my anxiety.  My father in law would reach across my husbands back and give me reassuring squeezes on the shoulder.  My mom kept telling me how happy and proud she was that I had made it there.  My brother Tyler would sit down with me every single time that I needed to, never commenting on it but instead dancing with me in our seats and making me laugh until it hurt.  And my husband was giving me sweet little kisses on the baldest spot of my head.  This girl felt very loved that night.
 
As I sit here and write this there is a young man who just sat next to me, he is getting ready to have his first chemo infusion.  My nurse tells me that he is 19.  By now I can spot the newbies from a mile away.  There is a "dear in the headlights" look that I see all too often around this place.  I can't help but remember how just a few short months ago that was me.  I am now a regular, I know all the nurses names and have won them over with bagels and doughnuts.  My heart aches for him and his family because I know how sick he is going to be over the next couple days and I know how ugly all of this really is.  How can I tell him that it feels like the worst tequila hangover hes ever had when he isn't even old enough to drink?  He's handsome and looks like a good kid.  Dammit, I am so angry with cancer. 

A couple days after diagnosis the universe sent me a gift.  Her name is Hillary.  I had never posted on a forum but out of pure desperation I posted looking for somebody my age that had kids and a similar diagnosis..  In one hour I had Hillary.  She is a bad ass attorney from Goodyear, Az who was diagnosed with the exact same type of cancer on the exact same day as me.  Talk about fate.  We have since become fast friends, talking on the phone for hours and sharing stories about our treatment.  I am so glad I have her, I couldn't make it through this without somebody who gets it.  I have a full blown cancer crush on this chick.  She has been very private about her treatment which I completely respect but since she recently came out of the cancer closet I wanted to let her know how much I appreciate her.  Hillary, thank you for teaching me to stand up for myself, being my sounding board and for helping me maintain my sanity.  I love you!   

Hillary and I

    

P.S.  I want to thank everybody who came out, played, stopped by and helped out at the poker night last weekend, it sure sounds like it was a good time.  Thank you for keeping my family above water, this long road would swallow us without your support.

Lastly, I want to thank my mom who hasn't come up for air since May 1st.  I hope you are able to breathe this week, aloha!

New Haircut!

I chopped it off.  In a fit of raw emotion I grabbed the shears and chopped it off.  I couldn't comb through it one more time and watch gobs of it pile into the trash.  So I gathered it into a ponytail, took a deep breath, and sliced through it in 2 snips.  And then I immediately started to panic.  I just kept crying "oh shit what did I do, oh shit I can see my scalp, oh shit I wasn't ready to do that...oh shit."  My husband was watching in horror as I fell into a thousand pieces.  His eyes got big and he begged me to stop and to let him hold me.  But I didn't want to be held and couldn't leave my reflection.  I was shocked that I had let myself lose control so completely and I wasn't finished being pissed about it.  My long hair is gone so I put my botched hair into a tiny, messy, ponytail and pouted for a couple days and then called my friend Jen to see if she could turn it into a style.   She offered to come right away and she did manage to make it into a cute little do. (Thank you Jen, for everything)

My insurance is refusing to pay for psychological care.  I feel as though mental health should be a part of my treatment.  I am dealing with all of these scary thoughts and emotions on my own.  I have very few people in my life who are able to relate and I am drowning slowly in my own anger.  I have this idealistic, and probably unrealistic, idea that seeing a professional will make all of these feelings stop.  I'd do anything to make them stop.  I can't help but wonder what kind of person this is shaping me to be and I can't help but think this person will be a total train wreak.  My doctor told me today I won't ever get odds like other patients.  I'll never know if I am really better.  My tumor is getting smaller and I seem to be responding well to chemo but the only way to know if I am cured is to live a long and healthy life.  I am going to deal with this illness for the rest of my existence whether it comes back or not.   I am never going to feel safe again.

But I still have a little hair!  And here it is folks....

The scarf helps hide the bald spots.

Photo sesh/chemo sesh

without the scarf

holy baldness...

Taking the help.

At the very beginning I decided that no matter how sick I got I was going to work.  I didn't really have a choice, we are a two income family who just bought a new house and I needed to work.  I was not prepared for how sick this chemo would make me, how much pain would be involved, and how I would be completely unable to work.  Not only do I need the money but I also need the people, I love my clients and I love my job.  Some of my clients have been with me for over 10 years, they are my friends, I adore them and they always have the very best gossip!  It was surprising to me how quickly I realized that I would be unable to work and at this point I don't know how long it will be until I am able to go back.  I miss it everyday and I have now laid the financial burden of one income and medical expenses onto my family.  As if I wasn't feeling guilty enough, right?

My husband would do anything to make this better but since he can't and doesn't know what else to do...he is working.  Working 2 jobs and making as much money as possible to make up for some of my lost wages.  It's sweet and I appreciate him beyond words.  Then there are people(you know who you are) that have already given generously to me and my family and I am forever grateful.  The irony of getting my house keys the day of my diagnosis cannot be for nothing, I will not let cancer take this house from me, it has taken enough.  Thankfully, my friends and family have put together some fundraisers to help us out and since my pride left on may 1st, I thought I would share them with you.

The above flyer is for a poker tournament being held in Phoenix.  Come to play or just to hang out.  This way you can help me out and win some money!  It should be a blast and if I am feeling up to it I might just swing by.  Here is the link to the Facebook event page.

This one is a raffle put together by my Aunt and Uncle.  My uncle is a total rock star who has created some of the most iconic bronze sculptures in Prescott, Phoenix, and around the world.  They have chosen the perfect bronze to raffle off at a BBQ on Sept 28th.  You can purchase a ticket by phone, mail, or by clicking the donate button at the bottom of my page, just be sure to specify that your donation is for the raffle and include your address in the memo so that we can send you a raffle ticket.  You do not have to be present to win.

Thank you to the people that have already donated to this blog.  I am shocked that so many people are even reading and sharing this blog, over a thousand hits each week.  I cannot comprehend why so many people would care what I have to say and feel but I am glad they do, it makes me feel like a I have an army behind me.  And maybe somehow...somewhere...somebody will find peace in my struggle. 

 

New Girl

The person who has been staring back at me in the mirror for the last 29 years of my life is gone.  There is a new girl who looks at me now.  She's not as pretty, she's puffy and balding, and she looks terribly sad.  Have you ever gotten a new haircut and then caught your reflection on accident and had to do a double take?  I don't want to get used to this reflection, I don't want this girl staring back at me for very much longer.  There are stages of acceptance that I am trying to adjust to and I am finding that I need to do so privately before I can share things publicly.  I have so many people that have wanted to come see me, to support me, love me...and I just can't.  I can't let them into a place that I haven't had a chance to sort out.  I can barely carry a conversation most days of the week and the last thing I want is to be around somebody watching them being themselves and be unable to find myself.  It's embarrassing.  There is no hiding from this, I cannot gloss over the ugly parts like I so desperately want to.  I cannot have my friends and family come over and pretend that I am okay, I am not okay.  But I can take all the time that I need to adjust, privately.  Right now, today, what I need is to be alone.  I need to curl up into a ball and mourn the loss of the girl who used to stare back at me.  I miss her terribly. 

Perspective

2 minutes ago the nurse cam in and told me that my MRI was negative...which is good.  I don't have cancer in my brain.  Halle-frickin-lujah.  I looped together a couple videos that I took,  was hard for me to post them, It's sharing more then I am comfortable with but I am trying to put myself out there and be honest.  In the last clip I am talking about my home town of Prescott, where I grew up.  I almost didn't include it because I don't want to make something about me that clearly isn't but it did give me a different perspective and help me realize just how lucky I am to be sitting in this chemo chair.  I still have my life and they don't.