“Never Judge a Girl with a Pink Wig”

I just finished a "Survivor's" article for the paper to run in October.  I hope it opens the eyes of some people.

“Never Judge a Girl with a Pink Wig”

At 33, I was diagnosed with breast cancer. The most common reaction from friends & family was “Your beautiful hair!”  Yes, my long, flowing hair was going to be gone soon, but I refused to get a wig!  My children, then 5 & 8, were so positive over everything except my hair.  That’s when they cried; that’s when I changed my mind about wigs.

Undecided about which wig I should buy, my husband took some photos on his phone and we left empty handed.  Later that evening, my kids came across the pictures and asked who the girl was in the picture.  Before I could answer, they gasped in horror as they realized it was me.  Their reaction solidified my decision.  Neither wig!

Now what?  I knew if my own children felt that way about my hair and the wigs, my students, ranging in age from 5 to 13, would feel the same way.  I decided I needed to make this fun for them…and me.  That’s when I found the raspberry pink wig.

My kids, my students, and my husband LOVED it!  I won’t lie, the stares were uncomfortable when I was out in public, but that was nothing compared to the chemo battle I was enduring. 

The 30-something girl is the new face of breast cancer, so don’t judge her if you see her wearing a pink wig…she’s probably trying to help a child cope with her disease

AC Depression?

After responding to a comment, it dawned on me...this is a depression.  As much as it pains me to say it, I am depressed.  And it's much like the postpartum depression that women go through after a delivery.  Post breast cancer depression or after cancer depression, AC depression.  Is this what we will see in the news soon?

More and more young women are being diagnosed with breast cancer.  We haven't lived our lives yet.  We haven't enjoyed our bodies long enough.  We aren't okay with covering our upper body because our chest is uneven or our arms are flabby.  We aren't okay making love with a top or bra on because we feel our chest is ugly.  We aren't willing to let cancer force us into a mumu!!!  Yet, we do end up having to alter our style, thus beginning the downward spiral.

We don't have the time, between work and families, to sit back and relax.  We don't have the time to focus on rehabilitation or, in our case, working out to get back what was lost during treatments.  We are young with so many responsibilities and (little) people who depend on us.  We don't get to focus on us!

The sad part, this story won't be heard.  This issue won't be talked about until a celebrity experiences it and then discusses it with Barbara Walters or on Good Morning America.  Bitter about celebs and the way they and the news martyr themselves after being diagnosed with breast cancer....yes, but that's another blog.

I wonder, what will it take before this is recognized....I wonder, what can I do to get it recognized?

Too Critical?

So, it's been a couple weeks since I de-activated Facebook and I don't miss it at all.  I don't miss any of the "friends" that I cut ties with, either.  I actually feel I have been freed, in a sense.  However, I sit here and wonder "Is it normal to not have a single friend whom I trust and can confide in?"  because I don't!  I have acquaintances, but I wouldn't call them "friends."

Before cancer, I would say I had a handful of friends that I could talk to, but not anymore.  I have judged each friendship on how they treated me and what they did, or didn't do, while I went through treatment.  Is that being judgemental?  Did I expect too much of my friends?  One day I answer that question with a "yes" and the next day with a "no." 

I'm haunted by the "it's my own fault" syndrome on this debate in my heart and head.  The debate goes a little like this, "They asked you if you needed anything and you said 'no.'  They said to tell them if you needed anything and you didn't."  So is their lack of support and compassion, other than positive comments on Facebook, my own fault?  Then I think about the acquaintances who DID do things for me and my family while I went through treatment without being asked or told.  I didn't expect them, of all people, to help me, but they did...unlike my so called "friends."  So then, the other side of the debate barks back, "They (friends) shouldn't have waited for you to ask for help, they should have done something on their own."

Is this too critical?

Struggling with life after treatment

So, the back story filled in most of the blanks of "Forgotten Survivor."  There's still a few things between the end of my treatments and now that have bothered me.

I mentioned my new schedule to support my husband in his desire to become an auxiliary law enforcement officer, but let me detail it.  Mind you, it began only 2 weeks after my last radiation treatment...AND on my birthday!  Happy freakin' birthday to me!

6:30am, wake-up; 7:30am, run and weights; 8:00am, get kids up and ready while I sort out their work for the day and get their breakfast; 9:00am-11:30am, teach (Catching up on 4th gr material that was missed or not understood cuz of my daily radiation treatments AND teach 1 week of 1st gr work daily to my daughter cuz it's too easy and I want to get her on 2nd grade material) and, if I have anything I can prepare for dinner ahead of time, I get it done then; 11:30am, fix the kids lunch; 11:45am - 1:30pm, get myself ready and continue teaching/assisting with their seatwork/homework; 1:30pm, make my husbands lunch, pack up any work the kids have left to do, make sure the animals are set; 2:00pm - 6:00pm, leave for after-school pick-up (we pick-up children from school and bring them back to our TaeKwon-Do location for a martial arts after-school program), run the program by myself (husband is at his police training); 6:00pm - 8:00pm, after-school program ends and evening classes start; 8:30pm, finally getting to go home.  If the kids didn't have dinner, I still have to make it or pick up something (usually not healthy which bothers me) on the way home and get them in bed by 9:00pm, if possible.

That doesn't include the stress of speaking to walk-ins and going through the spiel that my husband created.  I HATE SELLING!!  I just hate giving out prices and explaining the different programs and how they are set up.  It TOTALLY stresses me out!  I've never liked it and never will.

It also doesn't include the MASSIVE Halloween party I had to organize and set-up.

This schedule was so tough for me, yet I felt like my husband saw it as no big deal.  He would have been able to do it fine, but his body wasn't broken to its core for the past 9 months, either.  Where is the sympathy!  I didn't want a pity party, that's not me.  But I did want sympathy.  I wanted a "I have Sunday off, why don't you take a few hours away from the house and the kids and do something for yourself to relax."  I never got that.  Instead, I was picking up after everybody, doing their laundry, and grocery shopping for the next week.

A month of feeling this way and I started to wonder if I was just being childish.  Maybe it's just me.  Maybe because I feel so crappy from the weight gain and that my hair is sooo ugly growing out that maybe I'm just overly sensitive.  Maybe I just need to deal with it.  But then, I had a follow-up with my oncologist since my last chemo in July.  She went through the normal formalities and check-lists.  When she got to external factors for keeping the cancer from re-occurring, I lost it.  The tears sprang to my eyes and the flood doors broke.
    
      "Minimalize the stress in your life.  Stress is a major factor in cancer and re-occurances.  You
       have to have time for yourself to de-stress.  You also can't over-load yourself throughout the  
       day." 

It was like she new EXACTLY how I was feeling because she went on to say,
 
     "Everyone thinks that when they are done with treatments, they are going to start feeling better 
      right away.  That's far from the truth.  It takes A LOT of time to recover, physically and
      emotionally.  You are finding that out, but your family and friends aren't.  They don't know
      you're not really done, yet.  They've moved on and you're like 'Hey, wait, I still need help!'
      Right?  Every cancer patient goes through that."

The whole time she was talking, I was angry because Gary wasn't there.  He was at training.  He never got to hear my doctor's speech...and I will never tell him because he'd probably blow it off and think it's me making it up to get him to stop the training.  He'd never admit it, but he does that a lot....makes you feel like what you are doing isn't a big deal and that what he is doing is 10 times worse or harder (ie, "I'll switch with you any day, but you won't do it because you know!")  I HATE THAT!  I add a layer to my brick wall every time I hear that from him.

So, this continued into mid January.  Along with my friend's contact gradually diminishing.  My one friend who sent me a card every week in the mail said she wanted to spend time with me over Christmas break while she was off, but never did.  She said we had to make time for each other, but she didn't.  She said that we had a friendship that would last forever, but it hasn't.  That friendship probably hurt the worst when I finally cut the ties.  Over the course of 2 or 3 months, I dropped friends from Facebook here and there.  I went from 80 something friends, down to 58 before I finally just de-activated my account.  I was a pretty private person anyways, always limitting who was on my friends list, but so many had reached out to me when I had cancer, that I didn't have the heart to say "no."  But when they knew I had survived, their curiosity, for lack of a better word, ceased.  So, I decided it was time for them to go.  I decided it was time for Facebook to go.  Maybe I'll re-activate it later on, but I could care less now.  I should've re-named it "The Forgotten Survivor" instead of de-activating it; maybe that would have gotten some people to think.  How frustrating!!!

There's this one friend who was in my wedding and totally side railed me during my treatments. She literally works 2 blocks from the hospital where I was treated every Friday and she could NEVER come see me on her lunch break like she said she would. That really bothered me and still does. She's tried to come see me at home since I've been done, but I keep giving her excuses because I don't want anything to do with her anymore. Is that wrong of me to feel that way? Am I being stuck up? I don't want to hurt her feelings like she hurt mine and tell her I don't feel their is a friendship between us anymore, but what do I do because she obviously doesn't see that our friendship is broke?

As I'm typing this, all this anger is coming up again.  This was supposed to be a way for me to get rid of it (per the doctor...start a blog!), but it's making me angrier!  Grrr.  I've got to stop here.  I'm getting too wound up.  My husband will be up soon and I don't want him to see me like this.

Back story

So much to say that I don't know where to begin.  Let's start with the moment I went from being a breast cancer supporter, to a breast cancer fighting warrior.


Friday, November 12, 2010. I was waiting all morning for the call with my biopsy results.  The day before, I anxiously met with a surgeon for a 2nd opinion on the large mass that had grown in my breast over the past 2 years.  The first surgeon refused to do a biopsy because I had implants.  He, with 30+ years experience as a surgeon, didn't feel "comfortable" doing a needle biopsy. He wanted to do surgery to see what it was.  Red flag!! So, with the level-headed, forceable urging of my husband (I just wanted to get it done and find out), I sought a 2nd opinion.  With images in hand from my mammogram and ultra-sound, I nervously hoped this 2nd surgeon would schedule me to biopsy the mass.  To my relief, he performed the ultra-sound guided biopsy just 15 minutes after meeting me.  The "unknown" was, soon, going to come to an end.


Of course, the 10 minutes I walked out of the room without my phone is when the nurse calls.  My heart pounded as I listened to the voicemail, then it just dropped.  The voicemail was short and sweet, "Kellie, this is the nurse at the breast care center.  Please call me at ..."  Why didn't she tell me it was negative on the voicemail?  Why is she going to make me call her just to tell me it's negative?  All the other doctors already told me that I am too young, with no history of breast cancer in my family, so I know it's already negative.  Wait, no, it's not negative.  That's why I have to call her.  With forced confidence that I was still going to hear "It's benign," I called the nurse back. "Hi, Kellie.  We have the results of your biopsy and there ARE cancer cells present in the mass.  I know, it was a shock to me, too.  I didn't expect it to be positive.  It has been sent out for further testing to find out more, but the doctor needs to see you immediately.  He needs you in his office Monday morning at 9:00 am."  Whoa!


That "feeling" you hear everyone describe where they literally feel everything around them spiral down to the floor, head spinning as they process what was heard...I know that feeling now.  33 years old, home-schooling mother of a 5 year old and an 8 year old, business owner with my husband...THIS ISN'T SUPPOSED TO HAPPEN!


That day will, forever, be engrained in my mind; that day when I went from a breast cancer supporter to a fighting warrior.


So,then, begins my journey.  My great breasts...GONE!  My envious, long, beautiful hair...GONE!  My fit body...GONE!  My pretty face with long, full lashes...GONE!  My manicured nails...GONE!!  My confidence...GONE!


In a matter of weeks, I went from seeing an attractive (not to be egotistical), early thirties woman in the mirror to seeing a frumoy, haggard, middle aged woman.  I had lost everything that made me ME!  That b.s. that you are still the same on the inside is a load of crock.  You're NOT the same person on the inside cuz you respond to what you see on the outside.


Thank goodness for my husband, family, and friends, though!  I was a wreck inside, but put on a front whenever in public.  Often times, I would refuse help because that's what I always did...I was "Super-mom" and I wasn't going to let breast cancer, chemo or radiation change that!  My real friends, though, saw right through that!  They made sure I didn't have to fix dinner for my kids and husband on my really bad days, they helped out at our business during my treatments, they mailed me cards every week, they posted words of encouragement on my facebook page, and they took my kids out so they could just be kids and not have to worry about me.  With the spread of the news that I had breast cancer, I ended up re-connecting with acquaintances from highschool...it was comforting to say the least.  I think the most wonderful "side-effect" from enduring 9 months of treatment was the way my husband treated me.  There was very little arguing, there was thoughtfulness, and there was caring.  I'm not saying there wasn't the last 2 before, BUT, they weren't as abundant as when I was sick.  I was never one to enjoy the spotlight, but the added concern and help...that was nice!


Then, the last day of my final treament arrives!  The day I've been waiting for since I first found out I had cancer.  Hooray! 

NOT!!!



How quickly things are back to their old ways!  I was pushed into taking on the responsibilities of the home and business while my husband pursued 3 months of schooling and training to become a VOLUNTEER law enforcement officer.  Did I mention that I home-school our children during the day????  Now, I have to run our business, too???  That keeps me busy from 2pm to 8pm every weeknite.  Then, I have to fix their dinner!!  WTH!!  It's only been 2 weeks since my last radiation and I'm expected to be "Super-mom/wife."  I wanted to shout "News flash, this 'Super-mom/wife' just went through hell the past 9 months, is WAY out of shape, is 35lbs heavier, and EXTREMELY fatigued!!  I can't do this yet!!!"  But I couldn't and, because of my sulking and stubborn pride, I wouldn't.  Why should I have to say something?  I felt they should know I'm not strong enough to handle that kind of schedule! I shouldn't have to tell them!  They should be thinking about me and how I might be feeling still!! How quickly my husband stopped thinking about me, putting my needs first! I was back at the bottom of the totem pole in my house.


It wasn't just my husband who thought everything from the past 9 months were left on the radiation table on my last visit, it was my "friends," too.  The random "How are you?" stopped, the "We need to get a drink and talk." stopped, and the "Can you ...?" started.  I felt that everyone just brushed the hell I went through under the rug like it wasn't there anymore.  Truth was, it was VERY MUCH there!  The emotional pain I thought I had before was nothing compared to what I was experiencing now that it was all done.  Where was my support system?  I still needed them, but they weren't there for me.  This is when I went from the fighting warrior, to the forgotten survivor.