Wednesday, May 29, 2019

I'm a Surgery Kid

***Trigger Warning: If you have a history of surgery trauma (especially laser treatments for port wine stains), the details of this post could potentially be triggering.***

I started treatments as a newborn. Here I am, around the
age of two, post-treatment.
Finding myself in a familiar room I had been in 20 times in the last eight years, it was cold. My jaw shivered as I craved for a warm embrace by my mother or my favorite blanket.

Instead, I was surrounded by strangers wearing white coats who only knew my name because of a chart – and because I was a regular. After all, I was a surgery kid.

The smell of the operating room never became normal to my nostrils, and I always disliked wearing the blue hair net that the doctors also wore – but unlike for me, I knew it was part of their routine.

Every surgery, at least I was able to take in one form of comfort – a stuffed animal. The doctors were always just as excited to see my stuffed animal as they were to see me, and this time it was a dog who carried a sock in its mouth. If you pulled on his treasure held by his cotton teeth, he’d let out a playful growl...And I couldn’t wait to show my doctors and nurses.

As I lay on the cold, metal table, knowing what was to come, I heard the growl and laughters coming from the nurses. I was right in my choice for this surgery - he added so much warmth to the room.

Then the mask covered my face.

I felt my IV burn.

My doctor performed his one rehearsed line well, “Count backward from 10...”

The smell was instant and was like no other, and I can still smell (and taste) it several years later.

“10, 9, 8...”

I knew I wouldn’t make it to “one.”

I never did.

Yet, every treatment I turned it into a game to see how long I could stay awake during the countdown; and alongside Monopoly and Checkers, it easily became one of my all-time favorite games.

Instead of hearing myself reach "seven," the next words came from my mother's voice, "How do you feel?"

I found myself trying to open my eyes – but only one was able to see the world's details and colors. Because of the swelling from the laser, my left eye was swollen shut and it would be for hours.

How did I feel?

Swollen.

Groggy.

Thirsty.

Hot.

Happy it was over.

Ready for pizza.

Ready to go home.

The surgery was over, and it would be two months until I'd have to go through the IV pokes, anesthesia, and surgery anxiety again.

And now that it was over? It was time to ring in the rest of our traditions.

A friend joining us for the medical adventure? Check.

Stuffed animal for operating room? Check.

Chuck E. Cheese pizza and games? That's next!

Shopping for a new book or toy at the Gilroy outlet mall? Yes please! 

We had a three hour drive to my treatment, and a three hour drive home. Mom always did her best to make it fun, and always gave me things to look forward to in the midst of all the pain.

And once we got home? It was time to heal.

The next week would be filled with Vaseline and ice, trying to prevent my face from blistering while it spent the seven days overheating. And after about a month? Then my purple skin tone would be back to my "normal," while slowly getting even lighter for the next six months.

When I reached the age of 11, everything in the operating room changed. Instead of sedating me for my laser treatments – they wanted to keep me awake.

"You can use a topical numbing cream for an hour before the treatment," they told us, "You'll be fine."

When I walked in the room for my "awake treatment," I saw a big chair waiting for me surrounded by a high-tech machine. My doctor and nurse had funny looking goggles close by, and an extra pair for my mom – who got to sit in with me.

Sitting in that chair for the first time, my heart felt as though it was beating three times faster than normal.

As the nurse gently wiped off the numbing cream on my cheek, I was handed a stress ball to squeeze during the treatment.

"If I'll be fine," I wondered, "Why do I need these?"

Mom's Willy Wonka glasses.
Everyone put on their goggles. Mom and looked at each other and laughed, "They look like Willy Wonka glasses!" Wanting to remember the memory forever, the nurse took a polaroid of my mom for me to take home.

It was time.

The doctor put my eye protectors on my eyes while asking, "Are you ready?" I cautiously nodded my head yes – not knowing what to expect.

Snap.

I squeezed the stress ball tight, "Oh. That's why they gave this to me."

Snap. Snap.

Instantly, I couldn't imagine doing this without this perfect surgery accessory.

Snap.


"Ouch!" I cried out as the machine lasered my port wine stain birthmark.


As a child I knew these treatments lightened my birthmark but that they were also needed for the health of my birthmark, which was caused by abnormal development of blood vessels in the skin. At the time, I didn't know all the medical jargon or technicality. Just the basics. But, in my case, these blood vessels go all the way to my brain. They affect my gums, the roof of my mouth, my nose, eye and my ear. Due to the eye and brain involvement I even have a condition called "Sturge-Weber syndrome" on top of it all.

So these treatments...they were important.

I also knew we drove three hours to get to the doctor's office, and three hours to get home.

But this time? This time it hurt.

"Do you need to take a break?" my doctor asked.

Without hesitation, I told him, "Yes!"

A few minutes later, we tried again.

We didn't drive all this way for nothing.  I had to push through.

Snap. Snap. Snap.

"I'm so glad my mom is in the room with me," I remember thinking. I really wouldn't have it any other way. Even though I couldn't see her, just hearing her voice was a huge help.

Snap. Snap.

The more he did, the more it hurt.

Snap.

What's that sound? Is something burning?

Snap. Snap.

My doctor explains to me that it's OK, it's just the hair on my face sizzling off. It's just my own skin.

Snap.

The pain. The smell. It's too much.

"Oww..." 

I couldn't do it anymore – and I had them take off my eye protectors.

And I instantly felt guilty for not handling the pain better. And even though I was only 11, I felt weak. I felt I should have been able to push through.

He warned me it would feel like a rubber band snapping on my skin, snapping on my young childhood cheek, and at times that was true. But some also hurt worse.

Feeling traumatized, but also confident in my appearance, I remember telling my mom at age 11, "I'm confident with who I am as I am. I don't want to go back. I'm done."

Her response was epic, "It's your body, it's your choice."

After that treatment, it would be seven years before I went back to the operating room.

When I was 18, I decided to Google my own condition because I realized one important thing: While I grew up with the port wine stain, having MRIs and laser treatments...I still didn't know much about it. And because I grew up being in their offices since birth, at some point, the doctors forgot to explain my condition to me – their patient. And I had to know more about the condition I was living with.

Learning more, I realized that without treatments, I was at risk of: Blebs, asymmetry, growth, skin texture changing. And I already had asymmetry issues on my cheek and lip.

Taking my results to my mom, I told her, "I want to have treatments again."

Just like icing on a cake.
She replied in a beautiful way, not realizing she gave a similar answer several years prior, "It's your body, it's your choice."

I'm now 27 years old and I've had 53 treatments. Even with the pain and anxiety I've experienced over the years, I don't regret my choice to go back. Because even with the treatments, I'm still developing blebs – which look like raised bumps on my skin that can bleed at random, especially if bumped wrong or scratched. And man, do they bleed. At this point I only have three...But without the treatments, would I have more?

Since my first "awake treatment," I've learned to put on the numbing cream like a pro – putting it on like icing on a cake, no hint of purple to be seen. And instead of holding one stress ball during the procedure, I ask for two.

My doctors constantly want to put the metal contact in my eye to treat it, but my reflexes and anxiety are too strong. After all...I can't put the numbing cream on my eye. It would be my skin against the laser, without a shield to protect it from the pain. As a result, my reflexes and anxiety win. They always overpower my doctors hands and persistence. Instead, they let me have anesthesia every three treatments so we can also treat the eye lid.

Because of technology improvement, the variation of the settings of the machine and the thick, bitter icing I wear on my face – most awake treatments are not nearly as painful as the first attempt at age 11. I'm also more mentally prepared, although I still wish my doctors would give me something to help me relax during the process. Yes, some treatments hurt a lot and I need more breaks to get through them. But then there are others where the pain is minimal and I don't need any breaks. For those, I'm done in about 10 minutes. But because of the trauma of the first treatment I had awake, and not knowing if it'll be a painful treatment day when I go in – the anxiety is always high a week before going in, and during the procedure.

As an adult, I still take a favorite stuffed animal to each treatment, even if it stays in my purse. But, I no longer go to Chuck E. Cheese as the after-party tradition. Instead, when I have treatments in California, have Jamba Juice for lunch and we go to Casa De Fruta afterwards, which is the halfway spot between my doctor's office and home. (Plus, they have the best rocky road.)

Me and my mom. <3 td="">
Now, however, I live in Nashville, TN. After 27 years I have to find new doctors to perform the treatments and new traditions to follow after they're done – which is a little scary as for a kid who grew up with an operating room comfort zone.

And at 27, my mother still goes with me to every single treatment, wearing the silly Willy Wonka goggles the doctor has to offer, and making jokes to make me laugh. I recently got married and moved across the country. During recent call with her, she asked me, "Are you having another treatment soon? If so, I need to know in advance so I can get a good rate on a plane ticket to be
there."

Because even though I'm 27 and married, she's still my mom.

And I'm still her surgery kid.

The Travelin' Chick,
Crystal

No comments:

Post a Comment