Oh hi

Today marks the first Friday in 17 weeks that I won’t be receiving CHemotherapy. I honestly don’t know what to do with myself. Should I sauté a chicken or something? Put on some bubbly? Bathe the cat (we don’t have a cat so that one would be challenging). 

It’s an arduous feeling to face that I have been compromising my immunity with red hot toxins or remembering that I don’t typically run to the bathroom every time I feel a fart coming on JUST IN CASE it proves to pack more of a punch. Recognizing what it feels like not to worry about my calf muscles cramping. Recalling how my body felt before cancer and that “having energy” is a very real attribute. Realizing that I needed to block out normalcy to make room for organized chaos. 

It’S ThAT tImE oF tHe YeAR FOLKSSSS. IT’S LESSON TIME!  It’s time to stop and ask what lessons I have learned from my CHemotherapy sessions. HOW should I feel? Should I celebrate this milestone even though the finish line is so far away? Should I look at this step as an accomplishment? I had to do it. I didn’t have a choice. And I did it. It’s done. What’s next? 

No. 

Excuse me while I have a little pep talk with myself. 

Listen here self. The secret to success is to applaud yourself when each task is complete. Say thank you and well done for all you have endured to finish this job. Sure, you have surgery looming on the sidelines but take today to stop and recollect about each week leading up to this point. How much you didn’t want to go, how you counted down the amount of treatments you had left while your kids documented it on the kitchen chalkboard. The long nights of nausea and incurable headaches. Pushing yourself on a Saturday so you could feel a small sense of normalcy resulting in you throwing up in the Target parking lot. Wondering if you would be in the 70% of women who lose their hair and brushing it a week after your first session to witness a large clump fall onto the tile. The crippling anxiety you felt after finally feeling good only to realize that it’s time for another dose. Sometimes it’s the pain that reminds us that we’re alive (credit given to my husband Steve for that statement).

But YOU KNOW WHAT I did it. I fucking did it. So today raise your glass and offer a big FUCK YOU to CHemo. So long and sayonaraaaaaa. And thank you. Thank you for helping me see my strength. 

Bad ass bitch

My former boss called me today. She is someone I admire. I respect her desire and passion to directly impact the lives of thousands of low income children and families throughout Boston. She is the Vice President of Head Start, and someone I aspired to become. 

I haven’t told her that I’m sick. I’m not sure why. Is it because talking about my cancer makes me sad? No, not particularly. Is it because I am worried that it might make her sad? No, not necessarily. Then why? Why have I been seemingly avoiding telling her? 

My decision to leave Head Start came out of necessity. Steve’s health was showing signs of deterioration and I wanted/needed to be more accessible. I also knew that I needed to fill my days with something that fed my soul instead of feeding everyone else’s. It was never my plan to leave my post. My plan was to work towards accepting my boss’s position and I was well on my way. I quickly climbed the ranks from Teacher assistant, to Teacher, to Education Supervisor, to Assistant Director. Next stop the top. And I loved it. I loved giving my all to children and families in need. I loved driving though East Boston on a Saturday and hearing “MISS DANIELLE!!” screamed from three story windows. I loved my 100 employees and the closeness that it brought. 

When I saw my former director’s number flashing on my phone my heart skipped a beat. I didn’t feel “nervous” So what’s with the butterflies?

Although I am proud of who I am, who I have become, seeing her number made me a bit morose. It was my first true connection to being reminded of who I was. The girl before the cancer.

Although it has been a short amount of time since my diagnosis I don’t feel like the girl my former director expects to talk to. I froze. Should I pretend? That wouldn’t make sense. I don’t think I could fake it even if I tried. I feel so far away from that girl I’m not sure I would remember how to act. So I let it go to voicemail. 

Looking at photos taken of me just months before my diagnosis, I hardly recognize her. C’monnnnn stop being so dramatic. It’S YoUUUU. Nah, it ain’t though. That girl is cute, gets shit done but does it with sugar. This bitch knows that some shit needs to be done with a hammer instead of a feather. This bitch knows what it’s like to be the hand that needs to be held instead of the hand holder. 

And that’s when it hit me. The recollection of my former boss, my former career, made me remember the girl that didn’t know what a port was, the girl that didn’t know what chemo consisted of or how her face would look without eyebrows. She made me harken to a time when I consistently battled night sweats and would wake up several times a night shaking because I had sweat so much that my clothes were soaked through. A girl that always wondered how women found their tumors instead of finding her own. Back to a time when my biggest problem was needing to purchase shampoo instead of wondering how long will it take to have nipples tattooed onto my manufactured breasts. 

Am I in the same “place” as I was then? No. Am I where I want to be? Nope. Do I love being able to feel my feelings without feeling like a FaiLUreeee. Yup. Am I excited to combine the girl of the past with this bad bitch? Fuck. Yes. 

Thank god I got this cry out it had been a full 48 hours since my last, I was beginning to get concerned. 

Fan your flow

 

Life makes plans, god laughs. 

God you ironic bastard.

My medical team decided to add one more week of chemotherapy to my existing regiment due to a minor set back aka my horror film sized stye. This means my last day of chemo will be 12/11. The same day as the first day of Hanukkah. For the Festival of Lights I was going to ask for a helicopter wrapped in mink carrying 55 lbs of Godiva, and peace on earth of course, but I’ll settle for my final day of toxic chemicals coursing through my bloodstream.

Since my last day for treatment has been moved, so has my mastectomy date. My new surgery date is 1/13. Mixed feelings on that one. On one hand I’m wildly disappointed. I told my friends, marked it in my day planner and even circled the date on our chalkboard refrigerator calendar. On the other, more responsible hand, I’m relieved that I won’t be ushered in to have major surgery on the same week as Christmas. 

Ho hum.

If I’ve learned nothing it’s I know nothing. Kiddingggggg. I know a little. And mostly it consists of the reality that we should all be like water. Flowing, tranquil at times, tumultuous at others. Be like water. Go with the flow. Don’t wish your life away. Enjoy it all. Even the reschedules. 

Walking the line of feeling grateful, obsessively trying to appreciate every moment given, maintaining a level of sincere hatred towards big business and greed while facing my own mortality seems to be exactly what the Christmas spirit is all about. 

My “hair” is growing in and as if feeling the need to rival the awkwardness of my seventh grade soft touched laser backgrounded school picture, is portraying itself in a fuzzy chick bum that is neither cute nor couture. 

Don’t wish your life away.

Lilah trying to hold in her laughter after the dog farts because she’s “mad.” Tommy giving the “finger gun” in every picture. My mom saying “for crying out loud” every time she makes the slightest marginal mistake. My dad playing bass to an imaginary musical arrangement while “listening” to my diatribe of why there should be more trades taught in the public schools. Steve finally committing to growing a beard after being told he didn’t look a day over 19. 

These are a few of my favorite things. 

Have they always been there? Why did it take me getting cancer to stop and see them? Does it matter? No it doesn’t. I see them now and I’m never letting go.

 

Stye in my eye and chemo drip

I woke up to a stye in my eye and my nose bleeding. Nothing says Monday like a stye and a bloody nose. 

Dec 4^th is my last treatment of chemotherapy. 3 weeks until I won’t have poison injected into my bloodstream. 3 weeks until my nose stops dripping and bleeding every time I go outside. 3 weeks until my world changes yet again. 

I’m having surgery on December 21^st. A double mastectomy with reconstruction. 

December 21^st. 11 years to the day that I drove Steve to the ER with excruciating stomach pains resulting in him staying in the hospital for 5 months due to misdiagnosed gallstones. 

I don’t know what to make of this fortuitous date. When I met with my surgical team to select a date for my surgery the scheduler said, “The date has already been decided upon.” Like some kind of fucking fortune teller. The date has already been decided upon? Bitch by whom?? My surgery is time sensitive, requires multiple surgeons and with the stress of the upcoming holidays I appreciate that it has been decided upon but damn that date is upcoming. 

I would be a maniac if I didn’t declare that I’m not nervous, worried, scared. But there is also a sense of gratitude (always) that I am at the point of surgery, that I’m even closer to putting this chapter behind me. And most importantly closer to my new beeeeeewbs.

I shampoo my head. Even if I only have the slightest sprouts, I shampoo them every day. And as I shampoo I say, “Hello little sprouts. I see you and I thank you.” This morning after icing my stye, cleaning up my bleed and while thanking my sprouts I thought HEY! 

Maybe losing my hair isn’t about loss but rather the privilege of watching it regrow. Maybe getting a stye isn’t about the pain in my pink lids but instead the joy of witnessing my eyelash buds lining up to pop through. Maybe getting cancer isn’t about GETTING CANCER it’s about loving yourself enough to let yourself heal. 

But the nose bleeds. Those mother fuckers I can do without. 

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 😉