OOPHORECTOMY COUNTDOWN: 3 DAYS

“Being brave isn’t supposed to be easy.” – Sam Berns, age 17

 

A few years ago, Sam Berns came into our lives. Our friend Sean Fine (Academy Award winner, Sean Fine) was beginning to film a documentary near where we lived. So, after a few years of just phone calls and emails, Jorge and Sean got to see each other on a somewhat regular basis. When Jorge found out his “production assistant” job was actually to carry the battery pack for the video camera, he was less excited. 

 

That is, until he met Sam. 

 

Sam, the beautiful young man who lived with progeria, was a huge fan of Dave Matthews Band, the Boston Bruins, and marching band. Jorge had the opportunity to tag along, carry the video camera batteries, spend some time in the family home, and get to know Sam. At the film screening — months after he had last seen Sam — Sam approached Jorge and they picked up right where they last left off, talking about comic books and school. I met Sam, finally, that night, and he was the epitome of warmth, kindness, and life. 

 

Though the countdown has been ticking away, it’s been a few days since I blogged because, well, I’ve been thinking about Sam. On Friday, Sam finally moved on from here. Even though Sam passed his life expectancy of 13 years, he is gone too soon. I find myself thankful that Sam not only got to see the completed documentary, he got to experience the great impact he had on people’s lives. Around work, people would talk about “this documentary I saw last night on HBO that changed my life” and I knew they were talking about Life According to Sam.  Sam got to see reactions of film goers, of strangers, and of friends as his life unfolded on the big screen. 

 

As I brought myself back to writing, I thought of Sam. At the end of this post, I have a link to a TEDx talk Sam did not too long ago. Needless to say, he is perfect. 

 

Sam’s words were about his life, and in the short clip, he reminds us how to live happy. Here they are: 

THREE ASPECTS TO A HAPPY LIFE by Sam Berns

1. I’m okay with what I ultimately can’t do because there is so much I can do.

2. Surround yourself with people you want to be with; people of high quality.

3. Keep moving forward

(4. Always go to the party)

 

As I enter into my 3-days countdown, my anxiety is growing about this surgery, and these four aspects have kept me grounded. I’m surrounded by so many people who couldn’t avoid cancer, who did not know it was coming. I do. I can. There is something I can do about my genetically high risk for cancer. To get through this, I’ve surrounded myself with incredible people — people of high quality. And, those who aren’t — those who are creating more stress and anxiety — just aren’t part of the picture right now. I keep moving forward. And, yes, I’m even going to the party. 

 

“When I was younger, I wanted to be an engineer. I wanted to be an inventor. I wanted to catapult the world into a better future.” You did, Sam. You did. 

 

 

Peace, love, and keeping happy, 

Liza

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OOPHORECTOMY COUNTDOWN: 10 days

“Hi, Liza. This is the hospital calling. We don’t seem to have any of your pre-op results here in our computer. Did you do your pre-ops?”

Oops.

And there went my entire schedule for the day, including working on chapter 2 of my dissertation which is due on Friday. That’s 3 days, Friday. Like, I have to stand in front of a room of professors, the program director, my classmates, and others in the doctoral program and talk about my research. Needless to say, today would have been a good day to write.

I’ll be there, I said.

Instead of writing my paper, I drove the 1-hour in traffic, sat in two separate waiting rooms for 2 hours, and drove back. Rather than lament the fact that I might have written at least a few more pages, I decided to have some fun and at least make the mishap entertaining (for me!). The big reveal will come after my surgery, but here is a sneak peek of what’s in store:

Screen Shot 2014-01-07 at 9.42.56 PM Screen Shot 2014-01-07 at 9.42.27 PM IMG_7890

While I certainly should be using my evenings writing, I’ve committed to focusing my evenings with the kids. Because I know, they too, are scared in their own ways. At different times this week, my two young daughters have asked me “Will I have to get my ovaries out, too?” and “When will I have to have my mastectomy?” Hard questions from two kids who haven’t even hit puberty, yet.

The older one (she’s 10) has a pretty good grasp on genetics. She asked, again, about my surgery and how I was feeling about it. In these conversations, she always brings up her eye — the one that was removed from her own cancer diagnosis just weeks after her 2nd birthday. She tells me, “I’m glad we removed my eye, Mom. I know that it’s kinda weird thinking about taking off a body part. But, that’s just one more thing that we’ll have in common. You’ll be fine, Mom.”

She always knows when I need to hear this.

My younger daughter (she’s 7) has questions about my surgery and recovery. She wants to know if she can see my stitches, or whether there will be blood, or how soon can I start snuggling you again?

But, this morning, the one that really hit me hard was my son.  He’s 4. Big brown eyes, smile that lights up my life.

Today, in the few moments of quiet before the morning rush, my son — in his mismatched Handy Manny pajama bottoms and Spiderman top — flopped his way down the hallway and onto the couch where I was absently gazing outside of the window. His body still radiated warmth from being tucked in his bed blankets. “Mom,” he whispered. “When you went away for five days for your work trip, I missed you. And, I’m going to miss you when you go to the hospital.”

I had no idea he knew I was going.

“I’ll miss you too, sweet boy,” my arm pulling him closer to me.

When I gave birth to my son four year ago, the doctor actually allowed me to reach down and guide my baby into this world. I remember, just a few months prior at a regular visit to my gynecological oncologist, the doctor asked if I wanted to just have a C-section and remove my ovaries all at the same time.

“No, I’m not ready,” I insisted, though at the time, a part of me felt guilty for not taking the advice of the doctor. I felt disrespectful. “I’m not ready.”

And as I lifted my newborn into the world, I pulled him close to my chest, his warmth radiated onto my own skin. I felt strong. I felt empowered.

Four years later, in the quiet of the morning, I feel ready. 

Peace and love,

Liza

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OOPHORECTOMY COUNTDOWN: 12 days

20140105-214944.jpg I’m known for tossing things out, recycling, or donating as soon as I’m not using something anymore.

However, there have been a few possessions in my life that have managed to stand the test of time and, well, surprise even me.

I have an LL Bean backpack that my mom bought me on my first day of college – 20 years ago – that I still use now and again. Just yesterday, I threw on a pair of boots as I shoveled the foot of snow off of my walk way. Those boots? Bought them in 1994 – 19 years ago. While visiting from California this past week, my sister rummaged through a box at my mom’s house and emerged with my emerald green, cowl neck sweater — which I bought in 1992 – from 21 years ago (see proof on left). 1484053_10153724313140179_610798810_o

Today, I picked up my hormones. 

And, for the next 17 years, I’ll take a single pill each day.

Seventeen years. 

Now, I must let you know that this decision isn’t easy. There are lots of opinions about hormone replacement therapy (though the mainstream studies do NOT include those who are genetically positive), and there are camps of folks who are very pro and also very con about it. And, of course, there are lots of misconceptions about what it’s for, what it does, and who should or shouldn’t take it. There are also different forms of therapy (e.g., patch, pill, cream) and as many different doses. Thankfully, my outstanding friends at FORCE sum it up here, if you’re interested.

Me? I’m open. I’m open to the fact that my body is my body, and if I need it, I need it. If I don’t, I don’t.

I approached the drive through pharmacy window (side bar: brilliant idea, whoever thought of the drive through pharmacy window), and handed the pharm tech $40. I figured, $10 co-pay x 3 months, that should cover it. But, before the woman handed me my prescription, she said, “Oh, it’s actually $140.”

The thought crossed my mind: “Maybe this is too expensive. Maybe I just shouldn’t do it.”

It’s twelve days before my oopherectomy, and I’m feeling overwhelmed. I have my qualifying paper due in just 3 days, and instead of writing and editing APA style, I spent two hours in the kitchen prepping frozen meals for recovery. I didn’t have to do this. I’ll have plenty of people on hand to help, but my mind is trying to deal with this surgery in funny ways.

I’m feeling like this wasn’t enough time. This wasn’t a good time. Maybe I should cancel and reschedule. Maybe I should just wait until my doctoral program is done. Maybe I should wait until my family is settled into a better routine. Maybe… 

But, life marches on. There are 12 days left. Twelve days until my oopherectomy.

On Saturday morning, January 18th, I’ll take my first pill. What will I think about seventeen years later, as I take that last pill? Between those two points in time, one thing is for sure — I will never get ovarian cancer.

Squeezing in some family time before surgery

Squeezing in some family time before surgery

Peace, love, and conjugated estrogens,

Liza

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OOPHORECTOMY COUNTDOWN: 14 DAYS

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“Are the boys in the same room as you,” she whispered into her phone. “I have something to tell you, but just don’t let on that I’m telling you something bad, okay?” I tried not to stare at her. But, there was very little space in the hospital hallway that morning. Seems like everyone had the same idea — avoid the waiting room. “Well, it’s bad,” she continued. “It has moved into her brain. And, well, I just don’t think there’s anything we can do anymore.” Her conversation trailed off as she proceeded down the sun-filled corridor.

 

It moved to her brain. Those are words you don’t always expect sitting outside of the gynecological oncologist’s office. Unless, you live in a world of cancer that has taken more than its fair share of friends, family and warriors. 

 

Every six months, for the past seven years, I’ve sat in that waiting room. Waiting. I wait across from women who, too, seem like they are just waiting. Every six months, I am grateful for the feel of my uncomfortable chair that smells distinctly like a doctor’s waiting room. I wait across from women in wheelchairs, their bones tired from fighting. Their skin comforted only by soft fleece and vaseline that soothes their radiation burns. They are waiting for good news. Good news that can carry them through until the next day.

 

“It’s a good day,” says the woman with a smile that outshone the window-filled corridor. Her husband is behind her, his hands steady on the back of her chair, pushing it gently around the corner into the hallway where I have been sitting. “That’s what birthdays are for,” her husband replies and glides his hand from the cushioned handle bar over to her shoulder. 

 

My daughter and son have had their noses buried in the screen of my iPhone since we arrived. “Ooooh, happy birthday!” they both exclaim, excitedly, as if expecting cake to be wheeled out after her. She got to see another birthday, I thought. I put my arms around both of their shoulders, squeezing them so tight that their heads banged into each other. 

 

Over the past few years, I’ve sat in that waiting room feeling anxious, worried that this might be the day when they find ovarian cancer. By the time the visit is over, the oncologist has confirmed that she doesn’t see any tumors or anything unusual. I walk out of the office, casual and confident. But the walk from the door leading to the waiting room to that sun-filled hallway punches me in the gut. I walk by women who do not have the same opportunity as I do, the knowledge to avoid ovarian cancer. 

 

In two weeks, at this time (8pm), I’ll be home recovering. Hopefully in a pain-relief induced haze. I’l add scars #12, #13, and #14 to the small space between my hips and my collar bone. My ovaries will be removed, and within 24 hours of my surgery, I’ll go into surgical menopause. I’ll take a prescription of hormones every single day until I reach age 50 or 55. 

 

Unlike when I had my mastectomy, I had much more time to prepare for all of this. During the 11 months leading up to my mastectomy, I had the time to train my body for the long race towards recovery. I wrote weekly about my experiences — how scared I was, how I knew my life would change, and how I knew that I would never have to face breast cancer. This time around, I can’t even wrap my head around my surgery. I’ve made peace with knowing I was not going to have any more biological children. Embraced the gift of genetic testing that informed me I had a very high risk of cancer. Molded the muscle memory of holding my own child’s hand during chemotherapy, and hearing my sister weeping from the pain of her radiation burns.  A year ago, I saw my own father cry, for the first time in my life, as the ushers respectfully guided her coffin down the aisle. 

 

I would be lying if I said this was easy. 

 

“Do you know why we are here,” I asked my 7-year old. 

 

“Because you need to have your ovaries removed. Because your ovaries could get cancer. Kind of like when you had your mastectomy,” she replied. She paused. “Will I have to do this, Mom?” her eyes searching for comfort. “Will I get cancer?”

 

I kissed her forehead. 

 

The returning sound of her conversation interrupted my thoughts. “There’s nothing left to do but wait,” she continued, returning back down the hallway. “We just have to enjoy whatever time we have left. But, we’ll tell the boys when we get home, okay? Thanks for watching them. We’ll be home soon.” 

 

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passing the time outside of the waiting room

Peace and love, 

Liza

 

 

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STRONGER

At first, my husband told the kids, “Leave Mommy alone. She needs to sleep.” After long stretches of not moving, my husband shifted his instructions and told the kids, “Please check and make sure Mommy is still breathing.”

 

I was exhausted. Actual exhaustion.

 

A few days ago, the dizziness began. I woke up one morning and the entire room was spinning. At one point, I got out of the shower, tipped my head upside-down in order to wrap my long, black hair into a towel, and flipped my hair right-side up again. I lost my balance, grabbed the top of the toilet, and thankfully landed on the edge of the bathroom tub. I felt my heart racing, blood rushing to my head, and began to throw up. It only took a moment for it all to settle down. I got myself together, walked out of the bathroom, smiled at my family, and they were none the wiser.

 

Two days later at work, I had finished up a big meeting and found  a few quiet minutes to work on my qualifying paper — the second of two major milestones in my quest as a doctoral student. I have been working on this paper for more than 3 months, and completing it signals my permission to continue on as a doctoral student. There were two vice presidents in the room with me, and before they left, they turned to me and asked me a few questions. I looked up from my computer, and all I could see was the two vice presidents merged into one. I couldn’t hear their questions, couldn’t figure out who was talking to me, and couldn’t focus on their faces. I managed to answer what I thought they were asking, and I chalked it up to just “being stressed out.” Once they left, I called my doctor. Within a few hours, I was in her office telling her about my symptoms.

 

“Liza, this is classic stress induced exhaustion. Have you been stressed out lately?”

 

I told her that this was my busiest semester of work and also the blessings I’ve had to travel the country. I had just returned from a conference two days earlier and took the red-eye. Instead of resting from the 8:30am arrival at the airport, I went right back into most-time-single-mom mode, picking up my kids from my parents’ house, getting their lunches ready for school the next day, baths, laundry, unpacking from the trip, etc. Most people would have slept off the jet lag; I didn’t have that luxury.

 

I told her I had a major paper due, committee assignments at work, lots of Christmas shopping to get done, and everything on top of the usual Mom duties. Oh, and I was beginning my pre-ops for my oopherectomy, the removal of my ovaries to reduce my risk of ovarian cancer.

 

“Your remedy is to go home and sleep,” she warned. “Otherwise, this will get worse.”

 

I politely shook my head, promised I would go home after this appointment, and sleep.

 

Before I left, she made an appointment for me to get an MRI. “I want to make sure the dizziness is just a symptom of your exhaustion. But, knowing your family history of things going wrong, I’m ordering this test for you.”

 

I don’t do well with doing-nothing. In fact, doing nothing causes me more anxiety.

 

But, the universe has spoken. On top of the dizziness came fever and chills. Soon, it traveled into my lungs. My neck grew stiff. I couldn’t regulate my body temperature. And, my kids suffered the brunt of my lack of patience.

 

By Friday at 4pm, I was in bed. Some of it was Nyquil induced sleep; most of it was just sheer exhaustion. My body refused my mind to work beyond Maslow’s basic needs: sleep, eat, shelter. Twice, I left the bedroom to lay on the couch where my family was watching a movie. Both times, I fell asleep immediately as my head hit the cushion.

 

“Just make sure she’s still breathing,” I would hear my husband say.

 

I usually live by the motto “What doesn’t kill you makes you stronger”; but it’s times like these when the universe reminds me that “what you think is making you stronger, just might kill you.”

 

Peace, love and still breathing,

Liza

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THE CHEST

We recently re-did our bathroom, and naturally, all of the junk that has been accumulating under the cabinet sink, on the storage shelf above the toilet, in the medicine cabinet behind the mirror that snaps closed with two magnets, and in the green, quilted Vera Bradley make up bag hanging on the back of the door got emptied into one big container. Old medicines. Orphaned bandaids. Tiny tubes of half-used travel sized toothpastes. Stray Q-Tips. Hotel shampoos. The expensive moisturizer that I received as a Christmas gift years ago. Random attachments to curling irons, hair dryers, and clippers that no longer exist.

They were all scooped up and put into this chest just to get things out of the way.

As random as those batches of stray items were, there were also ones that held so many memories. Joli’s first glasses — so small I almost mistook them for belonging to one of her dolls — that she wore after the doctors removed her eye. Sterilized eye patches that we purchased just in case her prosthetic ever fell out. A sealed pregnancy test that came in the 2-pack when I found out I was pregnant with our second child.  Alcohol swabs used to clean the drainage tubs after my mastectomy.  I even found a sample packet of ointment that the nurses sent me home with when I was breastfeeding my youngest child.

The years of items I found also, yes, meant that I hadn’t cleaned out those cabinets. Instead, I tossed things in there in an out of sight, out of mind fashion. It was a place where items went in but never actually made it out again.

That chest was a place time forgot.

There are stretches of time when I forget I am BRCA positive: that I have a genetic disposition to breast and ovarian cancer. Every day, however, I have physical reminders of my mastectomy.  The long, pink scars stretched across my chest like the stitchings of a football. The injections I receive into my sides to flatten scarring left after a bad infection. The relative stillness of my implants that are held behind skin with no nerve endings.

After long stretches driving or typing away at my computer, my body reminds me that I have endured more battles than those physical scars can tell. By day’s end, I feel my shoulders round forward as my muscles curl me into a fetal position. I pull back, fighting against the tendency to shrink and be rendered invisible. Even three years later, I refuse to let my body’s battle make me small.

In the hustle and bustle of the day, I have forgotten that in just 2 months from today, I will be once again at the hospital to have another surgery. The removal of my ovaries will stop the hands of my biological clock ticking towards cancer. Every day that I have my ovaries and breasts is another day that cancer tries to rob me of my life, sneaking up on me and waiting for someone to open the lid just a little bit.

In just two months, my 60% chance of developing ovarian cancer will be reduced to less than 1%. Though the surgical procedure will only take 15 minutes — and likely give me relief of not worrying about cancer — my body will believe it is aging, moving 15-20 years prematurely into menopause, forcing me to monitor age related outcomes like osteoporosis, and make my newest accessory a small, paper, fold-up fan (or in Tagalog, a paypay) to alleviate hot flashes.

I have timed my surgery just 1 week after I turn in my qualifying paper for my doctoral program, not wanting to risk any of the “foggy brain” that friends have described. So, I’ll turn my 60-page paper, a precursor to my dissertation, in to my department chair and then begin preparing myself for surgery.

Just three years ago today, November 18, I was heading to the hospital for my bilateral mastectomy — a surgery I had the luxury of preparing for over the course of 11 months. This time around, however, I haven’t given surgery much thought. It’s somewhere in a dark, hidden place kept company by those remnants of orphaned bandaids, expired alcohol swabs, and half-empty bottles of ibuprofen.

Soon, I’ll have to figure out what to keep and what to throw. I’ll place some things back into our new bathroom, behind the new cabinet just above the toilet, and tuck away our belongings back under the sink.

With the remodel, our bathroom is actually a lot lighter. Unlike in our old, dark bathroom, when I open up the cabinets now, every area is illuminated and each item is visible and clear. There is just enough space for just enough place. And the doors swing wide open.

 

And there is no room to hide.

 

Peace, love, and beginning new journeys,

Liza

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GUEST BLOGGER: Sunny News edition 1

“Hey, Mom. How’s your blog?”

“Well, Jo. I haven’t had a lot of time to blog, even though there are lots of things I have going on that are blog-worthy.”

“Well, since you have so many readers, do you think they’d like to read my newsletter? It’s called Sunny News.”

“Pretty sure.”

*************

Welcome to the first edition of “Sunny News” — created by Joli. What is Sunny News? Well, in a world filled with bad news, Sunny News is here to bring some positive fun to your day.

SUNNY NEWS

rainbow gossip : Today’s gossip is all about a family that sunny news interviewed in New York.

                   JORGE

Favorite song: Man in the mirror

Favorite color: Purple

Favorite movie: The color purple

Favorite day of the week: Thursday

Favorite kid: Kid flash

              Liza

Favorite song: Titanium

Favorite color: Purple

Favorite movie: The color purple (“Wait, Mom. I don’t get it. Your favorite color is purple and your favorite movie is the color purple?? I don’t get it.”)

Favorite day of the week: Tuesday

Favorite book: Roots (“Mom, is that a book about plants?”)

                JOLI

Favorite song: Titanium

Favorite color: green

Favorite movie: The Croods

Favorite day of the week: Friday

Favorite holiday: Halloween

                       JADA

Favorite song: Closer by Teagan and Sarah

Favorite color: Gold

Favorite movie: Planes

Favorite day of the week: Monday

Favorite candy: chocolate gummy bears

                           EVAN

Favorite song: Gummy bear song

Favorite color: Black

Favorite movie: Epic

Favorite day of the week: Monday

Favorite show: Spongebob

PET MY PET: Pet my pet is all about your pets and their hidden talent. Sunny news drove to MA to interview a family to learn about their pets.

                          Cody

Type of animal: Dog

Favorite food: Bacon and rice

Favorite bed to sleep on: Joli’s bed

Favorite thing to do: Play with kids

Cool skill: Able to run many miles

                           Honeysuckle

Type of animal: Leopard gecko

Favorite food: Mealworms

Favorite place to sleep: Her cave

Favorite thing to do: sleep and eat

strange thing about her: Able to lick her eyeball

  Dare to take a Dare:

Dare to dare is when all of the dares are  numbered 1-10 and you have to pick one.

1. For a whole day you have to speak spanish.

2.Wear your sister’s clothes for 2 hours.

3.Wear your pj’s to school.

4.Put your hair into pigtails and grab a lollipop and a pink dress and put it on for picture day.

5.Wear your prom dress to school on a normal day.

6.Dye your hair green for the first day of school.

7.Wear high heels and a suit on the bus

8.Do a cannonball in a snow pile.

9.When you walk in your classroom sing Titanium.

10.Tell your little sister or brother that spiders eat tooth fairies.

(every time you do a dare give me evidence and then I’ll give you points.The crazier the better.)

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