Dear Emily’s Body

Dear Emily’s body,
We only prepared to adjust to pregnancy and postpartum recovery body changes. Now we have extra weight from steroids, extreme weight loss in between, and a face that seemed to age 10+ years. What happened to my early twenties? Enjoying every little thing having brought life into this world. My body changes were supposed to be a mark of happy life changes. Not cancer. Aging naturally from laugh lines and smile lines. Not:
-sun damage from oral chemo
-swelling from steroids
-dark circles from unsteady blood numbers
-a yellow tint from elevated bilirubin
-thousand yard stare and dilated pupils.
-receding hairline after growing my hair back after losing it completely.
-permanent broken blood vessels
-permanent blood shot eyes
-liop scars
-port scar.

Permanent, permanent, permanent. Some temporary. It’s the permanent reminder of what ruined my life temporarily, that gets to me. Is that temporary too? I have yet to find out.

I am in between recognizing myself again and not knowing who I am looking at in the mirror and all. She’s strong but you can tell she’s well past her breaking point of the things that got her here. I can only genuinely smile when I look at my baby. I look young and healthy again when I smile at him.

I was scared to get chemo curls. They are beautiful but not what I grew up with. I was afraid of change. I am happy when I look at my hair now, while the color has changed I can dye it. It’s still as thick as it has always been minus the small patches now. A few more waves but no tight curls. I am still me!

I want my body to know that it’s okay if I don’t feel pretty all of the time. My son thinks I am. I sometimes think he misses his “bald mom’. He likes to touch other family member’s bald(ing) heads and would hold onto my best friend’s bald head when she lost her hair from chemo as well (with her enthusiastic approval of course! I am so glad he makes her smile and laugh too.) We say that he would hold onto our bald heads “like basketballs”. His interactions with my hair, scars, and “comfy belly” completely take away my pain with change.

My husband loves my round chemo cheeks and “blush” that comes along with it. He celebrated when my freckles came back even though they now exceed my nose area on my face. His compliments make me laugh because there are better ways to phrase them… “I like the shape of your face”. Thanks, Nick.

I can’t force myself to find my body beautiful at the moment until I feel better on the inside physically. How my son and husband look at me takes my mind off of it completely.

Once my port is removed, a coverup tattoo will replace it. I’d rather people ask me what my tattoo means rather than where my scar came from. I have a keloid, my scar is big and pink. Thankfully the keloid is flat. Just that pink color remains when I have enough RBC/hemoglobin. I will cover it up with a pink tattoo: madagascar perwinkles. Which is the flower that my main IV chemo throughout induction and maintenance is derived from. My side effects are brutal so the tattoo will be my reward. I hope to find a tattoo artist who can tattoo a similar skin tone to mine over my broken blood vessels, they are all placed so inconveniently. Hard to separate from petechiae that pops up with platelet drops. I never want to see petechiae on my body ever again during recovery, I can’t have anything similar on my body to catch my eye and make my heart jump.

I made my social media names and running team name “Cute and Acute”. While I am not up to my healthy appearance standard, that’s okay! I am not meant to be right now! It’s not going to happen! I can still decorate my hospital environment with soft textures and pastel colors. I can still wear cute sweatpants in a larger size to account for the bloating. Furry fabric hides skin pain. Cuteness remains in other sources. I radiate cute.

My cancer pals (pals for life at this point) and I always talk about how there are some real “cancer baddies” out there. Who has makeup talent, wigs look natural on, and still stay up to current trends. Can wear jeans instead of pajamas all of the time. Hidden port. Winning actual beauty pageants. Walking runways or red carpet events. Or none of those and just radiating confidence. My pals ARE cancer baddies but can’t recognize it in themselves. Why do I feel like I shouldn’t look like I have cancer or walk a runway to feel beautiful again? I had a baby in between chemo rounds. I walked 2 marathons for Leukemia awareness in between maintenance chemo rounds. Isn’t my strength enough?

Social media can take its toll on us with trolls in the comments comparing us to “ugly” cartoon characters or with exaggerated features for comedic purposes. Or Characters that have shaved their hair for the plot (ex. Eleven from stranger things). Someone said during my live “bigger forehead for more forehead kisses” which made me realize I was losing hair up near my hairline again. I try to make the comparisons now myself in my posts so someone else doesn’t do it first. Strange but it works. I wish people would tell me that I look like Miley Cyrus when she cut her hair or Princess Diana instead. There are so many beautiful AND strong women with shorter hair out there to build someone up with. Heck, Mrs.Incredible from The Incredibles. The negative comments most commonly come from teenagers on the internet. How is cancer being talked about in their environment to where they think this is okay? It’s not my job to tell them otherwise, they don’t care. How can we change this? Better representation in the media… assemblies at school… posters on social media… parents monitoring their socials and holding them accountable… What will it take? Why is their entertainment coming at my expense? I joined social media to help other cancer patients feel less alone and to raise awareness. NOT be made fun of.

But like i have said, there are ways to distract myself from comparing myself to other women, reminding myself that my expectations are not for where I am in this current phase of my life, and that:
-scars shrink
-makeup exists for temporary discoloration (I LOVE makeup art)
-my hair will grow back
-hair dye exists
-tattoos exist
-and my creativity to make my environment and clothes both cute and accessible comes naturally.
Let the creativity flow!

One day I will recognize who is staring back at me in the mirror. I will earn my smile and laugh lines. I will see the muscle I worked so hard for. I will see the evidence of motherhood on my body instead of steroids. My skin will no longer hurt and burn in the sun. I’ll even work on my posture.

Emily Hermann of Cute and Acute
Maternal B-Cell ALL

Some pieces of Proverbs 31 that have encouraged me:
“She draws on her strength and reveals that her arms are strong… Her hands reach out to the poor and she extends her hands to the needy… Strength and honor are her clothing and she can laugh at the time to come. Her sons rise up and call her blessed. Her Husband praises her “Many women are capable but you surpass them all! Charm is deceptive and beauty is fleeting but a woman who has respect for the Lord should be praised. Give her honor for all that her hands have done.”