chemoflage

Until a few weeks ago I had no idea what "chemoflage" was.  I was talking to my oncologist about my wig, and how it was starting to become really uncomfortable. She told me that I had been wearing my "chemoflage" very well, for a very long time, and that maybe it was time to give myself a break.

It made me stop and think.  My hair was a huge part of my identity.  I look back at pictures of myself and with the exception of one unfortunate haircut in the 5th grade, my hair has always fallen gracefully down my back.  I loved my hair.  When people tell me how pretty it is going to be when it comes back, how chemo curls are so pretty; I have to be honest that it makes me want to scream.  My hair was pretty perfect before, and although at this point I will be happy with just about anything that sprouts out of my head, I loved my hair.

I have talked before about my "uniform" that I wore when I was teaching.  A pretty dress and heels were my armor when I walked into a classroom or meeting.  They made me feel confident, and comfortable.  When the chemotherapy stole my ability to wear heels on top of taking my hair and  throwing me into menopause causing acne and hot flashes at 36, it affected me in a way I can't even begin to explain.  Not only did I no longer feel like Rebecca, I also no longer looked like her.

So, unknowingly I developed my own chemoflage.  Just like any solider that needs to blend into their environment, I worked hard at figuring out how to look the most like me that I could.  A huge part of my chemoflage was my assortment of wigs.  Currently I have 4 of them, every day since August I have been sure to wear one.  They made life easier, I don't appear sick when I have the wig on.  In fact, in many cases as long as I was wearing the wig most people didn't realize I was sick unless I told them.  This ability to function at work and in the community without looking like someone who is sick was wonderful for me.  I don't want anyone to treat me differently because I have cancer.

It was over Thanksgiving that my skin became too sensitive to tolerate the wig anymore.  My scalp along with my nails became overly sensitive and I knew that it would not be long until I would have to start wearing scarves and hats in public.  I was heartbroken, and scared.

On Black Friday David and I took the kids to Build a Bear.  The kids were so excited, and I was positively giddy to join them in a adventure.  I decided this would be the moment, the time for me to brave the world with a scarf instead of my wig.  I made sure that my makeup was perfect, and I donned the beautiful cancer fighting shirt that was given to me by my sweet friend, Jessica, along with my beautiful scarf from my dearest Beth.  I was prepared.  I was confident.  We were walking through the parking lot of the mall and there was a car filled with teenagers who were shouting very inappropriate lyrics, very loudly out of the car windows.  I shot them my best disapproving mommy look, and they yelled out the window, "She bald!"

My heart sunk, my first thought was the kids. I looked at them, each one of them holding one of my hands.  Both of them seemed unaffected.  Then I looked at David and saw his anger and compassion for me.  In that moment I knew that I could not turn around (even though I wanted to crawl in the car, bawl my eyes out, and have the wig permanently attached to my head until my own hair comes back).  I was so proud of my family for continuing to move forward in spite of everything that has happened to us over the last several months.  I came to a realization - I am bald headed.  I have cancer.  I am fighting every single day for the opportunity to be here.   I am fighting for the privilege of seeing my children grow up, for the honor of standing by my husband's side as we grow old.  I am fighting to be present to hear about of all of the wonderful accomplishments and adventures of my former students.

So, we went to Build a Bear.  The kids both made adorable stuffies, and I kept my head high even without my safety net of the wig.  It was hard.  It takes immense courage to drop the chemoflage.

It took a another week before I was brave enough to go to work without my wig.  I learned a lot about myself.  I also learned that there were many people who truly didn't know I was sick.  It was exceptionally hard to see the look in their eyes.  The hardest was picking my children up from school. Seeing my kid's friends realize that Tommy & Elayna's mommy is sick almost brought me to my knees. It is really, really hard to see the effect of my cancer on other people.

It has been almost two full weeks now since I have worn a wig.  In many ways it is liberating, most of all I am so much more comfortable.  I am also thankful that I will no longer need to wash my hair in a bucket.

I think I will still wear the wig on fancy occasions as needed, but for now (thanks to the help and encouragement of many, many co-workers and my loving husband) I am learning how to wrap and tie scarves.  It is so much harder than you would think.  It is truly a myth (at least for me) that you save time getting ready in the morning due to the lack of hair.  It takes me just as long, and I still use just as much shampoo when I am in the shower.   The shampoo is mainly because believe it or not, from time to time I forget that I no longer have any hair.

I joke that I am now embracing my inner gypsy.  I am having fun exploring new and different looks, and trying to figure out how to match my scarves to my outfits.  I am also preparing for surgery.  It is astounding how quickly it is coming up.  Many of you have asked about what the surgery will entail.  I will be having a double mastectomy with immediate DIEP Flap reconstruction.  The surgery will last between 8 and 12 hours.  I will be in the hospital for 4 days and home from work for 8 weeks while I heal.  This is a link that will give you more detailed information on what the DIEP is if you are interested.  DIEP information

I am forever indebted to all of you for your kindness and generosity.  I knew I was loved, but never imagined just how much.  Thank you all for continuing to hold my family in your prayers.  I have my new chemo cocktail next Wednesday (the day before Christmas Eve).  I am hopeful that it will be as "easy" as they are describing, because I plan to fill this Christmas break with as much magic and as many adventures as I can pack into two weeks.

Hug your babies, smile at strangers, enjoy the season.  Take a moment to appreciate all the little things that make up the magic in your life.

All my love to all of you.

#fightlikeamommy 

Giving Thanks

When my fight with breast cancer began, I had no idea how powerful the journey would be. I could not possibly have anticipated how much it would change both who I am as a person, and my day to day life.

It gives me great peace to know that after tomorrow I will be finished with the first of my three stages of treatment.  There have been bad moments, hard times, tears that come from nowhere, and immeasurable fear, but I am thankful that there have been no bad days.  There is a powerful strength that comes from knowing that I am wrapped in prayer and love daily.  Recently, I received a letter from one of my cousins saying that I am being prayed for weekly during a Mass for Healing at two separate churches, one in France and one in Illinois.  I have another dear friend who is praying for each cell in my body daily, what a truly beautiful sentiment.  Another friend has sent prayer requests for me as far as South America.  So many of you write to me, or call me to tell me that I am in your thoughts and prayers.  I am so thankful for all of you, all of you that hold my family and I in your heart and take a moment out of your lives to think of us - thank you.  Your prayers are working.  My tumor is shrinking, this terrible yucky chemotherapy is doing it's job and soon life will slowly regain it's normalcy.

Last week, one of my childhood friends began a Go Fund Me page to help offset medical bills.  Many of you offered to do this for me, and for a long time I resisted, it is hard to ask for help.  I am moved by the generosity that has been shown to me in less than a week.  Moved is not a strong enough verb - I am touched to my core and in total awe of the generosity that has been shown to my family.  Colleagues, friends, family, people that I do not know that have seen my story, friends of friends, and those who wish to remain anonymous, all of you have made such a difference.  Reading your words of encouragement - seeing what you write about me as you share the posts, it melts my heart.  I knew I was loved, but have never ever known just how loved. Thank you all for that gift, it means more than anything else.

I also have two wonderful friends who set up a meal train, this has been such a wonderful blessing to us.  To come home, especially during the week of chemo, and not have to think about dinner - or going to the grocery store, that is a gift of pure love.  All of you that have provided nourishment for my family during this time please know that the words "thank you" will never be enough to tell you how much your gifts have meant to us.

If you are interested in seeing the beautiful words of inspiration the link is here Go Fund Me, Fight Like a Mommy .  Many of you inquired about purchasing a Fight Like a Mommy T-Shirt.  I set up an account where you can order one if you are interested Fight Like a Mommy Shirts, there is a little over a week left to order one.  These proceeds will also go to medical bills.

Tonight the David, the kids, and I went to the Bethlehem Walk.  It was beautiful, so very beautiful.  We were all moved by the words, and the beauty of re-creating the birth, and death of Christ.  We were so lucky to share the memory together. I am so thankful to have witnessed such amazing beauty with my little family.

I would like to ask of you all again to perform a random act of kindness tomorrow.  Smile at a stranger, hug a friend, call a relative that you haven't talked to in awhile, share a funny story with someone who seems sad.  Find a way spread love and joy in the world however you can.


#fightlikeamommy
#itisstillmyfairytale