So apparently, I’ve magically turned into Rapunzel since I was diagnosed with breast cancer about a year and a half ago. Makes total sense, right? Nope. At least not to the naked eye.
My personal Rapunzel Story:
I began the bumpy road really looking the part (long blonde locks a-flowing).
Then upon my first major MRI with contrast, I found myself locked up in my bedroom “tower”, locked away from my fam for 24 hours. All that they injected in me made me “radioactive and not safe to be around children.” What the?? Texting the hubs from my room all day as he got off work to come care for our then 7 month old Snuggles, I blurted, “I don’t do Radioactive Rapunzel well. I’m busting outta here!”
Fast forward a month or so, and I did just that. I busted out of the scary feeling of slowly watching my hair fall into my breakfast and drinks, fall onto my pillow and into my mouth while sleeping, and be swept from the floor as I sprinkled blonde pieces of my most recent transition haircut (The blue and pink Mohawk! #RockOn #StillProudOfThatDo) and began the head shaving ceremonials.
As my dear friend, Regina, lovingly shaved the last of my hair, I felt the flurry of emotions of Rapunzel. I was free to embrace the adventure ahead, no longer hanging on to my strands as if to connect me to all that I knew. Like Disney’s Tangled, those scissors and clippers essentially became my frying pan! Just as random and obsure as it seemed to Rapunzel and Flynn Ryder in the animated flick, the most unexpected object became my weapon of bravery! Somehow, I became more confident in my baldness and in my sickness than I’d ever been before. God’s graces were upon me, and I did everything I could all day, every day, to tap in to them. Bald and Brave.
As I continued through each new phase of treatment after my initial 6 rounds of chemo, my hair began to slowly return. Could it be real that I could have it all: HAIR, this newly found CONFIDENCE AND BRAVERY, aaaand FREEDOM?
When I made my first “debut” out and about with my first baby sprouts, freshly tinted to a bold platinum blonde, I felt that feeling of Freedom again. The itchy regrowth under those beanies began to rebuild “tower walls” around me, challenging me EVERY DAY to bust out and keep my head in the game, remembering what was really important. I was here. I’m alive. Who cares about my dang hair?!?
It felt great. I felt ALIVE!
Fast forward to one full year later. Fast forward to the present, today.
My hair’s finally picking up the pace enough that people that never new me would think I just have a “mom-do”. I’m always pinning new cut ideas as it grows, determined to have fun and enjoy the styles as it inches along. Trust me, if I just rolled with it and let it grow with no intervening, I’d have a full blown Joe Dirt mullet: “business on top, party in the back”! Like an aging man, my hair fell out on top and front first. That, my friends, has been my most stubborn area to get back. But… it’s hair, and it’s a great way to finally not look like I was sick.
That’s the irony of it all. As my hair returns, those looks feel so deceiving.
Just as Rapunzel’s long golden hair appeared an image of fairy tale beauty, it meant nothing of her every day life. My hair coming back gives the rest of the world a feeling that all is well and lovely. It gives people comfort to move on, feeling assured that our fam must be able to as well. Never would have thought that before having a cancer diagnosis, but since I’m learning so much about the before, during, and after that I would have never understood. Before, I also would have looked at the return of HAIR to be a sign that it was over, they were “all good now”. In a sense, yes, the initial cancer is gone. But little would I have known, the journey may not be.
I stopped NEEDING my hair a long time ago. The moment I shaved my head (Remember PART 1), I felt FREE. Much like Tangled’s princess, I was smacking any fears, anxieties and stigmas right in the face with my hair clipper-frying pain.
With every inch, I’ve felt both excited and completely confused.
The majority of my treatment ended, the world kept turning, and I was thrown right back into it, yet this time, I’m only just beginning to look the part of my former self. This time, I’m parenting 5 children ages 2 to 11 with a new body that just doesn’t work like it used to. I often get worn down on every angle by weekly physical therapy and supplements to strengthen my bones and joints that seem to degenerate with each dose of my preventative meds to save my life from any future possibilities, yet make me feel as though I can’t function in the life that I fought so hard to live today.
With each doctor’s appointment to try a new plan of action, I could feel the whispers of anxiety, dimming hope, and ultimately… FEAR giving all their best shots to lock me away from the world. I began feeling misunderstood and embarrassed of my frustration and lack of positive go-getter responses as people ask “So, how are ya? I see you’re hair’s back, so ya must be all done, right?”
My hair has felt like an awkward gift to just misguide people in their understanding of me and who I am now.
So who am I?
Then it hit me, like God so often does with me when I start to feel like I’m falling.
I’m Rapunzel again.
With every new milestone of length in my locks, I’m pretty sure I grabbed another brick to build my tower again. With every appointment that I’ve tried to explain my increasing pain and frustrations, I climbed higher, away from the world. I’ve felt the tower walls closing in upon me, yet this time, I had no idea what to use as my frying pan anymore? It started feeling claustrophobic, and to say the least, disappointing.
During our regular Netflix-fix of our fave streaming show, Once Upon A Time, with the Hubbie I randomly got slammed in the face by the Rapunzel Episode (Yes, for any fellow viewers, we’re very behind on the seasons. No spoilers please!). As Charming finds Rapunzel tucked away in the forest, it isn’t long before they realize she’s haunted and imprisoned by her own fears. Only by identifying and facing her fears, and making a change… could she escape her solitude. Yes, she’s called out, yes heroes have attempted to save her, and her basic situation that first led her to the forest remains the same, yet SHE can have HOPE that she is neither alone nor did it have to be this way. Life may be as it has been dealt, yet only SHE can choose to LIVE IT. She needed to want it, she needed to know it didn’t have to be this way, and she needed to get her “head in the game” (At least, that’s how my former chemo-fighting self would have said it.)
My physical situation may be what it is for now, but as a friend reminded me recently…
THIS TOO SHALL PASS.
It just HAS to.
That, and … I CAN DO HARD THINGS.
I can keep fighting. I didn’t want to be standing here a year and a half after my diagnosis and still be swimming up stream, but here we are. It may feel like cancer is still upon me, still trying to take me away from the life I’ve been fighting tooth and nail for… but I CANNOT LET IT WIN. It can’t last forever. We WILL figure it out, and we WILL get through this.
I won’t stay locked up in a tower, afraid of some kind of dim future.
Instead, I’m cutting myself FREE, picking up my sword and…
I’M BUSTING OUT!
I’ve said it before, but it never means that I can’t say it again or be embarrassed to NEED to say it again. The battle ain’t over, and I haven’t lost.
I fought hard for this life, and some creepy, ugly, old anxieties and frustrations are not going to take this life from my NOW.
So, “So long, creepy tower.” I’ve got a family to love on and a life to live.
And this time, when I peek out of my tower to yell for help. I’m looking UP for my Prince Charming. He’s not on the ground, waiting for my golden locks. He’s been looking down upon me EVERY DAY OF THIS LIFE, and that BIG GUY UPSTAIRS has never let me down. Sometimes, I just forget to call out to Him.
Here’s to my new adventure! Prayers coming back to YOU, my friends, on your own paths and “Welcome!” to anyone willing to join forces with me as I jump down from the tower and carry on…
ONE DAY, ONE PRAYER at a time.
Wow, right on time. I was diagnosed with TNBC almost 1 year ago. I started my 16 rounds of chemo soon after and finished the day before Thanksgiving 2015. I had a double mastectomy with immediate reconstruction with expanders, (it was supposed to be the implants, but there was a circulation problem) January 22, 2016, and will have hopefully my final surgery to replace those with permanent implants on July 15, 2016.
I recently was told by my MO, that because the adjutant chemo did not shrink my tumor completely that she (and the tumor board) did not feel my response was 100%. Even though the remaining tumor had no cancerous cells. I felt like I had been punched in the kidney! I thought I was finished with making hard decisions. To make a long story short I am now on a new med called XELODA which studies, released in December 2015, show encouraging signs for TNBC patients and a recurrence of the cancer.
Well the Xeloda is causing me more physical side effects than the infused chemo. Not to mention the insurance nightmare of trying to get the drug covered. Today I had been on the phone with the drug company and insurance company for 4 hours when I took a much needed break and found your email about Rapunzel in my inbox. I started crying immediately. It was so right on I was floored.
You see I have just returned from my 50th class reunion in New Orleans and the first time seeing my wonderful family since all this started. Don’t get me wrong, I’m so blessed to have all these people looking out for me and praying for me and telling me how wonderful I looked. But something just wasn’t right.
It was my hair! I had hair! So people assumed I was better and now if I complain or cry or show my frustration, I feel like I’m whining. So I close myself up in my tower, which is my bedroom, and cease to function. And I’m 67 years old and don’t have 5 children to love and care for.
I’m going to try to bust down these walls but it might take a while. I don’t even know if you’ll actually receive this email but just in case I wanted you to know how much you help us warriors. Plus you write so beautifully it becomes a special message to all those going through this awful disease.
Take care of yourself and keep posting.
Sincerely, Madeline firstname.lastname@example.org
Sent from my iPad
And this is exactly why I felt like I needed take my journaling out of just a journal and put them out there into a blog. We forget how many other people are probably out there going through things that are so rarely spoken about. I hear ya that you are still right in the middle of the battlefield; although, it seems on the surface, that all is well and good. And I also get that your sharing this doesn’t mean for a second that you’re not grateful to be here and alive. I also get that it ain’t easy. Agreeing to fight, agreeing to take up your cross doesn’t mean easy. It’s hard as hell. But know that you have support in prayer and God’s graces still available to tap into. I know as a cancer survivor that during chemo, radiation and my first surgeries, I expected it to be hard. I prepared for that fight as much as I could every day, asking God for grace and strength. I just need to remember, that I still need to call up on Him today and every day. Just as I would have needed to before my diagnosis and should forever after. We can’t do it alone. We’re not supposed to.
Peace and prayers your way,
I remain so encouraged by your posts. It’s in times like this that God wants you to rely solely upon Him. From experience with my husbands cancer, I know that fatigue dealing with the cancer can be overwhelming, however, leaning solely upon our Savior will help to bring strength!! I am praying that for you today and EVERY day!!
Thank you for your prayers. I always tell people, “Pray for my family, and we’ll pray for you right back!” Mine are with you and yours, especially after going through something so difficult with a loved one. I can only imagine the feeling to be a caregiver in that situation. I prayed for my family and caregivers all the time. I knew their shoes were tough to be in, too. One team, one fight.
God bless you
You my friend are amazing!! I’m so blessed by your presence in my life end you know how much i relate to this post! I know that God’s got you sweet Elise- and I am always available to help!!
And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 2 Corinthians 12:9
Amen, Sista!!!!! How perfect is that passage?!?! Love ya💕
Great post! I like the connection to Jesus as the only one who rescues – looking up instead of down. Practical wisdom Kiddo
Thanks, my brotha! Love you!!
You, Jason and your wonderful family continue to spread God’s blessings each day to all who know and care for all of you. You are all in my daily prayers and those of my large family.
Thank you for helping us to put life in it’s proper spiritual perspective. Truly, you are doing God’s work.
That means so much! Thank you!!!!