Bald is the new Black

If you are lucky enough to be bald, actually, factually and matter of facterly BALD on Halloween then you better own that shit. And own it I did. I happened to receive CHemo the day before Halloween. The hospital staff asked me to dress up for their “party.”

You don’t have to ask me to dress up for a Halloween party twice. 

After narrowing down my costume selection to 

a.) Bruce Willis 

b.) A Wigless Dustin Hoffman ala Hook 

c.) Jeff Bezos 

d.) The Six Flags guy

I decided on d.) The Six Flags guy.

 I ordered my bow tie and suspenders, borrowed my dad’s tux shined my head and I was off. I proudly played “We like not party” by The Venga Boys from my cell phone and paraded through the halls of MGH. As I looked around I took note that not one, NOT A SINGLE ONE, was dressed for Halloween. And here I come looking like Junior Soprano. 

At the end of my treatment, as I strolled through the corridors proudly displaying my new found gender,  the nursing staff greeted me with a gorgeous bouquet of flowers and a note that said “Your light inspires us all. Thank you.” And just like that I won. The nursing staff thanked me?! The same nursing staff that is actively and actually saving my life?? 

Also adding to my “win” as I sat in the lobby of MGH, holding my bouquet, looking 74 and waiting for my ride, a woman of equal age approached me. “Hello” she said as she sat next to me breaking all 6ft boundary rules.

“Hi,” I responded naively.

“Are you here visiting someone?” She asked with a smize. I say “smize” because although filtered through her mask her flirting eyes were smizing so loudly that the parking clerk could see them.

“No, I replied curiously, “I’m here because I received chemo.”

“Oh, I’m sorry to hear that. Do you live nearby?”

EXCUSE MY GLOAT BUT HAVE YOU EVER BEEN HIT ON BY AN ELDERLY WOMAN WHILE DRESSED AS AN ELDERLY MAN?

If your answer is no then you’re not living.

So what now? Do I continue flirting and see if I can get her digits? Do I turn on my preset Venga Boys playlist and start dancing? 

“Yes I do live nearby my dear,” I responded with an interested appeal “It appears my ride has arrived. Please accept these flowers and have yourself a lovely weekend.” 

How do you like them apples? Bucket list #119: Dress like an old man and get hit on by an old woman while receiving chemo at a major Boston hospital. Check and mate. 

Sundaes and cigarettes

Why am I crying during my Cat Scan? I felt fine. FINE. I had a busy but great day with my fur family, a nice drive into the hospital, made it to my scan on time but the minute I walked through those rotating doors I felt it rising up from my stomach, into my throat. Mortality strikes again. The “real world” is full of distractions, crutches and candy. The “hospital world” stares you straight in the face and makes itself known. Yellowed, shriveled patients line the halls in wheelchairs and stretchers. Old, young, moms, dads. We make eye contact and nod acknowledging our dual membership to the sick club. 

Back to my breakdown…

IV contrast is required to image my insides and mark the progression of my tumors. They access my port and the IV contrast begins to course through my body. It feels hot, burning almost. I follow it’s path through my chest, down my arms. When it reaches my hands it feels like fire. Each finger sparks. I feel like wolverine but I know I’ll leave with nausea and exhaustion instead of retractable claws. 

And that’s it. That’s the nail in the coffin. The final straw. My cupeth run over (yes I know the saying is “cup runneth over” but THAT saying has a more positive undertone whereas my saying has an emotional upheaval vibe). The water works start. Not sobbing, but the tears stream without control. One after another. My eyes fill and spill. Left then right. Well at least I’m inside a tube and no one can see me have “my moment.”  The machine hums, cracks and slowly pulls me out. I wipe my tears and discover that alas my magnetic eyeliner is not waterproof and my eyelashes have become unglued causing them to fall halfway down my eyeball. The machine stops. “You ok?” I hear as I exit the tube. Two attendants are waiting for me on either side of my bed. FUCKING PERFECT. If a bitch can’t have a mild breakdown inside a CT machine when can she?? 

“Is it him?” One of the nurses asks referring to the other male attendant. “Because if it is I’ll kick his ass.” She says with a wink and a smile. As I laugh one of my lashes fall in my mouth. I. Can’t. Make. This. Shit. Up. “No,” I respond, “I’m just having a moment. And my fucking eyelashes aren’t waterproof and all I want is a cigarette (No, I don’t smoke) and a sundae. ” She laughs and says, “That’s ok, you’ll fit in great around here. Almost everyone is bald and we all have our moments.”

The road to self isn’t always paved. Sometimes it’s a dirt path lined with horse shit and you need to decide what/how/if you want to change. Who am I? Who are you? Should we be designated to certain designs? Should we be forever transforming like caterpillars into butterflies? 

The hospital staff looks forward to seeing me every Friday. As I walk into treatment one nurse calls to another, “She’s here!” I look behind me to see who they are talking about. The nurse giggles, “We look forward to you coming in every Friday so we can see who you will be today.” 

Who I will be today? Which wig will I wear? Which persona will I encompass? I started this journey wanting to learn more about who I truly am. WhO ArE YOuu? But what I’m learning is, I’m a lot of things. Not only am I a mom, daughter, wife, business owner. But someone who makes people look forward to things. Someone who likes to make people happy. Someone who gets knocked down but gets back up again. 

We are all made of stars. And you don’t get to be a star by staying put. You shed. Rebuild. Grow. Glitter. Grab onto energies that surround you. Submerge yourself with love and light. Let that shit in. And then let it out. 

 

Toilet talk and then some

 

“Mom, you’re doing great with chemo,” Lilah says as I take my 14^th trip to the toilet before 8am. “Ya, and we’re doing great too.” Tommy chimes as he walks by holding his nose. 

I swear having cancer is a full time job. I set my alarm for 6am because I have come to learn that I need a solid 3 hours of toilet action before starting my day. 

Between toilet time, fighting with insurance companies to cover things like mouthwash which assist in sores that accumulate in my mouth thanks to chemo, receiving chemo, meeting with my drs, taking medication and then recovering from said above, cancer should pay me to exist in my body. I’m expected to be a mom, a business owner, a wife to a chronically ill husband and a cancer fighter?! My plate is FULLLL and I haven’t even had dessert yet. But in the same breath, it’s being a mom, a business owner and a wife that allows me to be a cancer fighter as well as a survivor. And if at the end of the day I feel tired from the things I love, then I’m doing something right. 

Every woman (and some men) have experienced “phantom hair.” Hair that you know is there, you can feel it tickling your arm, or stomach, or back BUT YOU CAN’T SEEM TO SEE IT. Today it was my turn to fight the apparitional hair. For hours I tried to find the long, invisible, blonde hair that tickled my skin. And then I realized alas! I DON’T HAVE ANY HAIR TO FIND! And that it has actually been months since I’ve had to separate my hair from the sink, or empty my brush, or finagle my floor. The hair I felt on my bod was a dog hair. Those I have plenty of.

I never considered that I would have cancer as I entered my 37^th year. It never crossed my mind. Never thought I would have zero hairs on my head, that I would learn how to apply magnetic eyelashes or have a plastic tube permanently placed in my chest. I never thought that at the ages of 8 and 5 my children would know specific names of cancer treatments or that my parents would have prayer circles started in my name. I also never thought I would receive endless kindness from total strangers, meals cooked from scratch and made with love, or instagram messages from young women around the world sharing that they survived similar horrors and that I will too. 

Cancer takes an awful lot. But it gives too. Just ask my toilet 😉

In the end it’s the magic that will save us

While walking with the kids I saw a bald woman driving. I got so excited that I ripped off my turban mid stride, smiled real big and waved like Forest on his shrimp boat. I wanted her to “see” me. I wanted to say “Heyyyyyyyyy loooook youuuu, meeeee, compadreeeee!” Turns out it was a semi frightened 80 year old man who looked more shocked than satisfied. C’est la vie.

Today marked my 7^th treatment. 7 down, 9 to go. Almost halfway there. My eyelashes and eyebrows have decided to depart which is a real kick in the junk. “Oh just draw em’ on,” echos the peanut gallery. EASIER. SAID. THAN. DONE. I spend more time “getting ready” now that I am a human turtle masquerading as a woman than I did when I was fully haired. One flick of the wrist and I go from Charlize Theron to Charles Manson. I have a new found respect for Drag Queens that’s for sure. 

But the kids. The kids are my magic. We laugh constantly. Smile incessantly. I feel sad for people that don’t enjoy the innocence of children. Our society is constantly trying to force them into mini adults. They’re not. They’re pure and new. They’re streams of consciousness that teach us to be curious, thought provoked and content. Adults have contrived their minds into believing that they NEED more. We don’t. We need hugs, laughter, small portions of food, trampolines and obstacle courses made of cardboard boxes and pillow forts. 

While enjoying the cool fall air and sitting on our front steps Lilah picked up an acorn and said, “Look Mom this acorn doesn’t have it’s hat on. It’s bald. Like you!” She was so proud to have found it. And even happier to share her discovery with me. It made me realize how my illness, my baldness and our family circumstance is constantly on her mind. But it also made me grateful that she could commiserate with a symbol of my current status and that she felt comfortable enough, honored to share it with me. 

Sometimes we all want to get into our car and just drive right? Drive from light to dark. Drive to the end of the Earth. End up in Key West with an Iguana on our shoulder and an ankle tattoo. I think that’s a universal understanding. Right? 

I’ve been feeling better physically. But the rollercoaster that is trauma and stress is one messy chick. Once the physicality of my makeup feels “better” the emotional side screams “HEYYYY REMEMBER ME?? THROW ME A LIFE JACKET WE GOIN DOWN.” So I face her head on. What’s the problem? You ain’t good? Well hold on, it’s about to get real and rickety. And that’s all I can say about it. My mom says, “When you’re in hell. Just keep going. Don’t stop.” Face as much as you can, process as much as possible. Feel your truth. But don’t dwell. Ain’t no one got time for that. Ya we’re in hell. I’m in constant physical pain, I could easily be a Bruce Willis body double, I’m isolating from society in fear of contracting an illness due to my compromised immune system and Steve is battling his emotional and physical world being flipped upside down.

But you know what? The kids are ok. The kids are magic. Listening to Tommy make Lilah laugh uncontrollably  because he loves Will Ferrell’s cow bell skit on SNL. “Hey Lilah, I gat a fever and the only prescription is more cowbell.” 

And there it is. In the end, the magic of our kids will save us. Love is all you need.

Takin’ it one “are you fucking kidding me” at a time

I received my first Taxol treatment. 1 down, 11 to go. It is supposedly less harsh on the system, easier to tolerate and there is the potential that my hair could reemerge. The most common side effect is fatigue and fatigued I am feeling. 

Similar to life, the eb and flow of cancer treatment is something that takes some getting used to. Just when I seemingly embrace my current situation and learn what “to expect” shit changes. 

There’s no comfort in CHemo. Just cold, brass tax slap your ass, cell killing action. Ain’t nothing warm and fuzzy about it. One day pasta is your friend the next your tongue is revolting against your mouth. 

I woke up this morning with a panicky, chest grabbing, air escaping, wind blown mind. WHYYY? Oh maybe it’s because my hands are forever vibrating, or because the cool fall air makes my body quiver, or that the cankers on my cheeks are enough to rival dentistry tactics ala the civil war. Maybe it’s because every time I enter a room Tommy in an overly exasperated voice asks, “Is your chemo done yet??” And when I tell him “No, not yet bud”, he looks to the ground, takes a big sigh and says “Oh mama I feel so bad for you.” 

I didn’t want to contemplate the part of my journey when people treat me differently because I “look sick.” I don’t care what PeOPLe ThiNK oF MEEEEE. Or do I? No, I don’t, but the lingering looks stick in the psyche. And when the air changes to a chill instead of a kiss, or when Tommy notices the countdown to my chemo finale, the “looks” resurface and rear their ugly judgmental heads.

Most days I count my blessings. I feel gratitude that I’m able to discuss my diagnosis openly and honestly with my children. I appreciate that the roles of caretaker and patient have been reversed and that Steve and I have the opportunity to value the strife that we each under take. I hate that my parents are forced to witness to their only child grapple with a life threatening illness but I’m grateful to show them that I can and will grapple til the end.

Most days I appreciate. But some days I take it one “are you fucking kidding me??” at a time. And that’s ok too. 

Storms, rainbows and supermarkets

Slip and slide into the day, go play.

Embrace it. 

Sometimes I feel like the scene from Stigmata when Patricia Arquette is experiencing unforeseen forces pushing and pulling her. WHAT DO YOU WANT DEMONNNNNN? Fine take it. 

Get up. Move. Easier said than fucking done especially when your entire being is screaming for you to do the exact opposite. 

When Steve was in the hospital I would get up early, shower, blow dry my hair, put on makeup, dress as if I was going to work and walk to the train station.  It was my ritual. My kick ass and take names preparation. It prepared me for “war.” 

It’s easy to “mail it in.” It’s easy to feel like your sweatsuit will save the day. But it won’t. It’s the opposite actually. It’ll steal your day and make you feel like you don’t deserve nice things.

I went food shopping with the kids. It was the highlight of my week. Is everyone aware of the fact that we are able to arrive at a destination, peruse aisles stocked with nutritional items from around the world, go home and eat them? Well you should be. 

Upon deciding to embark on our adventure I put on pants that did not have an elastic waist, stenciled on some eyebrows, selected some hair and embraced the storm. 

AND I ROCKED THAT SHIT

In the cereal isle I got a solid head nod and a thumbs up from a woman in scrubs. AND LET ME TELL YOU it filled my freaking bucket. 

There’s a constant running train thought process in my mind, contemplating if people know I’m sick. Do they look at me and think “aw poor thing?” Do they notice my wig and wonder why? Do I care? Should I care? Lately I’ve cared too much. Worrying what “they” think. But lemme tell you THAT notion is reaching it’s expiration date. Don’t tell me my business and enjoy the view. 

However this head nod, this affirmation made an impact. Her eye contact said “I see you. And YOU BETTER WORK.” I felt it. I felt her acknowledgment of my attempt. She understood how hard it was to get myself in that aisle. And without words she confirmed my endeavor.

My friend who is a breast cancer survivor once told me, “people will treat you like you’re sick and it will get in your head. Don’t let it.” She’s right. I choose to see the light. I choose to see the yes.

It is a process. It is a long road. It is ok.  After every storm comes a rainbow. Be grateful for the small things, the big things and everything in between. And that includes supermarkets. 

 

Rise

Phoenix

A mythological bird that cyclically regenerates or is otherwise born again. Associated with fire and the sun, a phoenix obtains new life by arising from the ashes of it’s predecessor. 

Knocked down, get back up. Consistency, breathe in and out. Support the sadness, feel the future, embrace the anxiety.

 

“I’ll always take care of you mama,” Tommy says as he stares down at me from the side of my bed. His face is encapsulated in the warm glow of early morning air creating, if possible, a heightened level of innocence and angelic emphasis surrounding his cherub cheeks. I’m not sure how long he has been staring at me but I can tell this thought isn’t new to his psyche.

 

I spent today staring at my children. Blonde streaks framing their faces, freckles placed sporadically where the sun hits most often. Innocent, worried, trying to comprehend their role in this rollercoaster we’ve been assigned to. It’s hard not to have answers. Or not to have the “right answers” we all want to hear. That’s the hardest lesson. Be still. Feel your feelings. They are all ok. They are all correct. Even the half breaths that you work into full breaths. Even the tears for REALLY WANTING TO BE AT THE BEACH AND NOTTTTT STUCK IN A HOSPITAL BED. 

 

I received my (fingers, toes, arms, legs, ears whatever else you got hanging around crossed) last AC chemotherapy treatment. This treatment is supposedly the knock down, drag you out bad mother trucker and lemme tell you it knocked my ass on it’s ass. I lost an entire 48 hours in and out of consciousness. Which if you haven’t experienced this feeling it is wild ride. WHAT TIME IS IT?? I yell as I wake up sweating and shaking in the middle of the night. Where are the kids? Where are my PANTS? 

 

I came home looking all sorts of green, barely able to hold up a glass and unable to walk to the bathroom unassisted. No one said it but the way they left me alone and side eye glanced told me all i needed to hear. 

 

It’s a big accomplishment. Or at least that’s what I try to tell myself. I get pissed off when I don’t FEEEEEL all ACCOMPLISHED. It’s hard to hold a sense of fulfillment with a larger picture looming ahead. But if you don’t take time to celebrate achievements, how will you truly appreciate triumph?

 

I have 12 weeks of an additional chemo staring at me from around the bend. 12 consistent weeks of Chemo, a month off to recover and then Victoria Secret’s better hide their women and children because these boots (and boobs) are made for walking.