Not One More Thing

There was a long night while my son was in a coma in the PICU at Children’s Hospital when I couldn’t stop crying. I paced the halls, I stared out the window. I cried. I needed to talk to someone who knew how I felt. I had the phone number of a mom whose son had died from DIPG the year before. I didn’t know her beyond email. She said if I ever needed to talk she’d be there for me. So I called her.

She knew immediately how to talk to me. She said I could ask her anything. My first and only question was why didn’t you kill yourself after your son died? She paused. Said it was a very important question, one she’d given a great deal of thought. She gave me such a simple, personal and honest answer that I’ve replayed it in my mind a thousand times since.

She said DIPG took so much from her family. She reached a point where she wasn’t going to let it take one more thing. Not One More Thing.

black-heart-divider

I’m thinking about this now because I’m a few days away from the anniversary of my son’s diagnosis. There are a handful of days that are tied for the worst day of my life — my son’s death and burial, but also the day he slipped into a coma and the day he was diagnosed. Diagnosis Day was the day that changed everything. Our life got divided into Before and After. Problems got divided between before and after, the after ones being problems we never thought we’d have to deal with. For us, Christmas is Diagnosis Day, which is particularly horrible for my husband. He used to love Christmas.

The list of things that were taken from our family after my son’s death is unmeasurable. But it has to end somewhere. It ends with Not One More Thing.

To The Nice Lady on Michigan Avenue Who Told Me I Was A Good Mom

I’m tired. It’s a tiredness born from from stress.

A week ago I had reconstruction surgery on my breasts after having a mastectomy last March to rid me of breast cancer. Everything went well, there were no surprises, and I consider myself lucky. I had my follow up appointment with the plastic surgeon, who seemed pleased with his work. I’m still sore, swollen and bruised, so it’s hard for me to agree at this point, but we’ll see.

I brought my little girl along for the two hour trek into the city. She was perfect at the plastic surgeon’s office, wonderful at The Museum of Contemporary Art, adorable at the playground. But…The Disney Store was one outing too much and her meltdown ensued right there on Michigan Avenue. I pleaded, “I can’t carry you because of my boo – boo.”

And that’s when you appeared.

You were older, maybe 70, and very nicely dressed. You told my daughter you loved her sparkly Hello Kitty boots and pink baret. You said they were nicer than any shoes you had. My daughter hid behind me and didn’t talk. You smiled at us. Then your expression turned serious and you said. “You’re doing a good job.”

And then you were gone.

You have no idea what that meant to me at that moment. Your affirmation made my day, and this was no normal day — It was a day I cleared a major medical hurdle. But at that moment you spoke directly to the heart of who I am. You somehow knew what I needed to hear.

And I thank you.

Phrases I Hate

  1. Thanks for sharing
  2. Cancer journey
  3. Thoughts and prayers
  4. Is there anything I can do?
  5. Checking in
  6. You’re smarter than you look
  7. You’re not that fat
  8. You look the same/You never change
  9. I’ll pray for you
  10. Everything happens for a reason

It’s Been A Week

pink-cherriesIt’s been a week.

Here’s what I remember — Everyone is very calm in pre-op. The nurses have wonderfully sweet voices. Anesthesia has the biggest team, and I was visited by no less than three anesthesiologists who told me they would “take care of me” in the operating room. My surgeon is a rock star, a notion that is reinforced by her using a Sharpie to sign her name on the boob she would remove from my body. I remember scootching from the gurney to the table. Then that’s it.

There’s an empty space where my breast used to be. I refused to look at it for two days. When I finally did I thought, “So that’s what it looks like to get mauled by a tiger.”

Except there was no tiger. There was a scalpel.

I accidentally looked at it on the second day. It’s ugly. I’m not going to lie. It’s purple and scarred and folded/caved inward. There are sutures and lines and bumps and dents. And it hurts. It fucking hurts all up in my armpit. I’m on Norco for the pain.

My husband looked at it on the first day. He said, “Baby, remember it’s a start. When this is over you’ll have healthy and beautiful bionic boobs.”

I read about a phenomenon that occurs, mostly in veterans and amputees, who don’t fully realize a part of their own body is missing called Phantom Limb syndrome. This is how I feel walking around the house. I’m sure it sounds strange but I don’t feel like I’m missing a breast. I feel like normal — until I accidentally brush my hand along my chest and I don’t find a breast there. It’s like I need a neutral third party — my hand — to tell my brain something is missing. My brain can’t seem to figure it out on it’s own.

A good friend said if I want to spread the tiger story around town she would back me up. So next time you see me ask about the safari. Ask me what it’s like to fight a tiger and win.

I got to kill the fucking tiger. And I have the scars to prove it.

Booze and Ice Cream; How To Prepare For A Mastectomy

toasting-champagne-glasses

So I knew this day would come. I was told two months ago it would happen. That’s a long time to prepare. Or, if you’re me, it’s a long time to ignore reality.

The reality is I have DCIS breast cancer. Just one boob. The one on the right. So the next time you see me you can stare. It’s okay. I’d stare at your boobs too if you told me where your cancer was.

ice-cream-with-cherries

DCIS is the kind of breast cancer you want if you ever get breast cancer. At least this is what my doctor told me. It’s non-invasive, which means it’s confined to the breast and doesn’t metastasize in the body. They call it stage 0. It is 99% curable.

The cure is a mastectomy.

Whoa, right? Seems drastic for something some doctors call “pre-cancer.” I think so too. But the alternative is watching and waiting for it to become invasive cancer and this seems even more stressful. I’m not a cross-my-fingers-and-hope-for-the-best kind of patient. I’m a do-my-research-and-find-the-best-experts kind of patient. Which is why I’m having everything done at a major teaching hospital instead of a cornfield.

So here’s the plan. This Saturday is my birthday. I plan to get drunk and eat ice cream. I bought Malibu Rum and Sangria so I can pretend I’m on vacation, and a tub of organic mochaccino ice cream. In my drunken and dairy-bloated state I’ll probably convince a photographer friend of mine to take classy photos of my cleavage. (Is there any other kind?)  Sunday I will detox and then it’s onward to Mastectomy Monday. I bought new pink satin button front pajamas and something called a Brobe, so I’m set. After I come home stoned on opiates I will lay in bed and watch Oscar screeners and possibly binge watch Game of Thrones. I hear I’m among the three people left on earth who never saw an episode.

I’m not happy about being out of commission for a week. Pretty sure chaos will ensue. But that’s minor and temporary. What I can’t shake is the feeling I’m running out of time. I’m not talking about mortality. I’m talking about my wholeness. The clock is ticking on the amount of time I have left to feel like “me.” After Monday, I don’t know what I’ll look like or how I’ll feel. After Monday everything will be different.

But until then, it’s booze and ice cream.

Make Mine a Double?

two-cherriesMost of us are lucky enough to be born without flaw or blemish. We come into this world about as perfect as we’re ever going to be. Our bodies grow and develop, we reach our peak, then we age and decline. It happens to all of us. Along the way we acquire scars, bruises and fractures. Every one of these is a story unto itself.

When I was two I broke my collar bone after falling off a kitchen chair. My family was within arms reach but they were too busy applauding me for sitting by myself “like a big girl.” I then went a long time without any major body damage until I turned thirty-two and had my gallbladder removed. The operation left two tiny slit-like scars on my abdomen and one inside my belly-button. Coincidentally, my paternal grandmother also had her gallbladder removed at the same age, but she died days later from a post-surgical infection.

At thirty-three I became pregnant and experience the body altering process all pregnant women go through, until the end, when I had an emergency cesarean after my water broke and my body had no idea how to coordinate labor. I developed sepsis and, I swear, I never saw people move so fast in a hospital before as my son was cut from my body within minutes of me spiking a fever. I was left with a beautiful baby and a not-so-beautiful gash extending from hip to hip across my lower abdomen. I would go on to have two more cesareans, both over the same scar, when I gave birth to my next son and daughter.

Sometimes our scars tell a dramatic story of how we skirted what would have been a catastrophic outcome had the event occurred a hundred years ago. Sometimes our broken bones and scars are minor, the result of accidents, and heal nicely on their own. Either way, they mark us up like a map representing the moments when our body altering experiences become life altering.

I have one such body and life altering moment coming up very soon, and I have yet to make a decision about the full extent of how it will leave its mark on me.

While the medical community debates whether Ductal Carcinoma In-Situ is really breast cancer, pre-cancer, or should be downgraded to dysplasia — the treatment remains the same — cut it out, slice it off, remove those bad cells from the body. DCIS is viewed as a potential threat that could someday become invasive cancer. The treatment is nip it before it has a chance to become threatening.

In other words, I have to have surgery and the date is coming up fast. The great news is I won’t need chemo or radiation. FYI, there is nothing medically to suggest I was at risk for bc. You have to go up two generations to a distant aunt before you find anyone in my family with it; I tested for all nine known genetic mutations that contribute to bc and I have none of them. In fact, my medical profile would suggest I have a low risk.

Yet here I am.

The decision I face is what to do about the other breast. Many women opt to have both removed so they never have to worry about breast cancer again. I’m not sure I have the courage to do this. It’s wrenching enough to part with one. (Is it courage? I’m in the thick of wrestling with this decision and I can’t tell if I’m approaching it from bravery or fear).

I’m an extremely adaptable person, but I also have difficulty letting go of things. Even things that are better off gone from my life, I tend keep them longer than I should. I also have a hard time making decisions because I’m overwhelmed by seeing all the possible consequences, and I wind up frozen. I would love if/when a difficult decision arises that the right path be self-evident. I prefer no-brainers. (Who doesn’t). I guess this is wishful thinking — life rarely smacks me with no-brainers.

Thankfully, no matter what I choose I will come through this looking pretty much normal again. I’m lucky the advancements in plastic surgery can create a new silhouette that resembles my natural one. I’m lucky I don’t live a hundred years ago.

So the cartography of my body will be drastically redrawn. There will be new scars, both physically and emotionally. The landscape will change and be replaced with something artificial.

All this is swimming around in my head where I’m drowning in my own thoughts, and meanwhile my surgeon’s office wants an answer from me today. I still don’t know what I’m going to tell them.

 

The Pineapple Tree

palm-tree-clip-art-thumb

UPDATE 2/4/19: I received a text that they found the plaque (I don’t know where). It will be placed in the garden next to my son’s pineapple tree.

There’s a fat, squat palm tree that looks like a giant pineapple in the courtyard of the elementary school that my oldest son attended for most of his short life. He loved that tree. He ran endless laps around it to burn off his exuberant energy. He climbed up the knotty pieces that jutted out from its sides until a teacher chased him down. He balance walked all over the display of rocks set around the tree, and sometimes he simply stood beneath it and stared up at its miraculous starburst formation and let the golden sun shoot through the empty spaces and illuminate his curious face.

People took note of how much he loved that tree and started calling it “Mason’s tree.” Kids told each other to meet at “Mason’s tree” to play tag, and of course my son would play too. When we moved away I wondered if they’d still call the tree by his name. A few months after we moved, my son was diagnosed with incurable brain cancer. We received a lot of support from my son’s teachers at his old school — Mason had the gift of charm and was easy to fall in love with and hard to forget.

After he passed away I ordered a memorial plaque and the aide from his kindergarten class oversaw its installation. I was sent pictures from thousands of miles away. I’m told my son’s friends arranged rocks around the base of the stake for decoration and protection. I was deeply touched by everyone’s expression of love for my son.

Those friends moved on to Junior High and then High School. The kindergarten aide retired. After a while, only three of his teachers remained. The school changed Principals. The building underwent improvements. Years went by before I returned for a visit, and when I did I dropped by to finally see the plaque.

But it was gone.school-kids-schoolhouse

It was after school when I snuck onto campus and the office was closed. I called the next day and left a detailed message for the Principal. She didn’t return my call. I called and spoke to the office secretary again. The Principal again didn’t return my call. Finally, she told me she’s never seen the plaque and never heard of my son. She’d ask around, but it’s likely gone.

One time when I was in the fifth grade the boy who lived across the street punched me in the stomach and literally knocked the breath out of me, so I know what it feels like to not be able to breath. The feeling I had when I hung up the phone was similar — fast, shocking and unexpected — my breath was gone.

Nobody wants their child forgotten. Nobody wants the memory of their child disrespected, especially in a place that gave him so much pleasure. My son was a friend to everyone who met him. He loved his school and felt love from his teachers.

bandaged-heartI needed to find out what happened.

I flew home and waited. A month later I sent an e-mail. Finally seven days later (after a follow-up asking if she received my e-mail) the Principal finally responded.  She said she asked around and nobody knows what happened. Sorry, she said, she tried her best. I got the feeling she wanted me and the whole uncomfortable and inconvenient business about a plaque for a dead child she never knew to simply go away.

But I wasn’t going to go away.

I followed up and urged her to look in closets, boxes, cabinets, everywhere. I figured someone wrapped it up and put it somewhere during the improvements, and with all the staff changes it simply got misplaced. I figured it was somewhere and it could be found if someone looked for it. If I lived closer than 2,000 miles I’d do it myself. I offered to send friends to look, but she didn’t want that.

She did everything she could, she said. I told her — I understand it didn’t go missing on her watch, but it’s kinda her watch now and it falls to her to find it. She said she didn’t see it that way.

I get it that after my son died the world had the audacity to keep spinning. I get it that nobody probably meant to throw away a memorial plaque for my dead son. It’s likely missing because of thoughtlessness. But it’s a thoughtlessness that feels cruel.

boy-jumping-clip-artIf I close my eyes I can see my son’s pineapple tree. It was our meeting spot at the end of the school day. I’d park down the block and walk over to look for his shiny dark hair among the blush of boys, and finally spot him dancing and running around the giant base of his tree. I’d catch his bluish-greenish eyes that changed color depending on the color shirt he wore. My heart skipped a beat every time.

And I’d pause to catch my breath at the sight of my beautiful little boy.

 

My Favorite Boob

I definitely like one of my boobs more than the other one. I think I always have. The left one, whom I’ll call Lady Lefty, gave me more trouble over the years. She’s about a cup size larger than Lady Righty so she’s heavier and gets in the way more often. She itches and has these long random hairs that need to be plucked every once in a while.

pink-tshirtShe has more stretch marks and a red dot that marks her North Pole, like a compass. And every time I get my period Lady Lefty complains for days. I always thought she was a troublemaker but it turns out I’m wrong.

Lady Righty, the comfortably-sized non-complaining boob was just diagnosed with two sites of DCIS. The whole thing came as a surprise. I had a clinical exam in November and my Doc said everything felt fine. I had a routine yearly mammogram right after the New Year. They called me back for more views and magnifications, citing calcifications. Don’t worry, they said, most of these turn out to be nothing. They called me back for a stereotactic biopsy. Don’t worry, they said, most of these turn out to be nothing. Today they called with the diagnosis. Don’t worry, they said, it’s non-invasive stage 0 grade 2 breast cancer with an excellent prognosis — just a coupla months of utter shit first.

I’ve been through utter shit before but as a caretaker, not a patient. My son’s cancer was hopeless from diagnosis. Mine’s not. He was a child. I’m not. He suffered greatly. I won’t. His fate broke my heart and my spirit. Mine won’t.

I’m really good at keeping things in perspective. My life experience has taught me how to do this at an expert level. My thoughts are with a friend who is a decade younger than me with four young children, who is a vegan and a pilates instructor, fighting stage 2 invasive breast cancer and faces six months of chemo, then surgery, then another six months of chemo. I know so many women who went through breast cancer — different stages, different treatments, different ages, both recently and years ago — and ALL are still here. I understand mine was caught incredibly early. I’m so amazed by the technology that could find something sinister when it’s only millimeters. I keep reminding myself I’m actually lucky. (Well, lucky would be not getting cancer in the first place but like I said I’m trying to keep things in perspective.)

So…I’m sorry Lady Righty, you were my favorite but we will likely part ways. Me and Lady Lefty will miss you but persevere. (Or, Lady Lefty may join you in that great hospital dustbin in the sky — TBD). My husband will also miss you, but he loves me more than the sum of my parts.

(In case you were wondering — no family history.)

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