FORCE

I remember my very first conference for Facing Our Risk of Cancer Empowered (FORCE).

Wait, take that back.

I remember not wanting to go to my very first Facing our Risk of Cancer Empowered conference.

My sisters and I had just found out we were BRCA+ and Grace, the diligent journalist, writer, and researcher, wanted to find out everything — and I mean, everything — about being BRCA+. I had accompanied her to Florida, the site of the conference, but I spent more time by the pool than talking about cancer. I wasn’t interested in it. I wasn’t interested in learning. I wasn’t interested in facing my own risks.

Grace would give me the daily update. Words that are now a part of my vocabulary (prophylactic, mastectomy, chemoprevention) went in one ear and out the other back then. I just didn’t want to know.

Two years later, I returned to the FORCE Conference — this time, willingly — to learn about how to reduce my risk of hereditary cancer.

“Oh, you’re Liza? Like “Marathon B4 Mastectomy Liza? I read your blog all the time!”

“Hey! You’re Liza — the running Liza!”

Two years later, it was hard to go undetected at the conference. My face was now on the FORCE brochure and on the 10′ stand up posters at the entry way. I was open about being BRCA+. And, as I sat behind a woman at one of the sessions, I got a flash of her wrist tattoo. It was a pink ribbon.

Eight months later, I, too, would sport a wrist tattoo of a pink and teal ribbon with the words “Brave” etched above.

As I have gotten further away from the shock of my mastectomy, some of these memories have faded. My scars across my chest have become a part of me. The familiar tug of my implants feel normal. Even the numbness is comforting.

Yet, the impact of FORCE has not been lost. It was a place I went when I was scared, lonely, and frightened. It was the place I went in the days after my surgery to ask questions about changing my bandages, stripping my JP drains, and exploring physical therapy.

It is the place I will return to once I decide that “Marathon B4 (surgical) Menopause” must happen sooner than later. When I feel frightened about ovarian cancer, when I feel nervous about the effects, or when I just want to be in a community of people who understand the fear, I go to FORCE.

As many folks have read this blog, and I am thankful for the many who have written to me about how this blog has changed your own lives, I ask that you take a moment to donate a few dollars to FORCE. They are at a risk of losing funding for their support services. And, people, like me, are at risk of losing the kinds of empowering programs they offer.

If you have ever been inspired by something I have written, cried at a some of the pain, laughed at some of the absurdity, or even just peeked in to learn more about what goes on in the life of a BRCA+ person, please know that I owe it all to FORCE.

They have given me the tools to face the risk of my genetic cancer empowered. 

https://www.firstgiving.com/fundraiser/LizaTalusan/heroes

With peace, love and a few dollars and smiles to spare,

Liza

OUT OF THE DARK

“Why be afraid, if I’m not alone/ each and every moment, the rest is unknown.”

When there were changes in our family, my oldest child insisted on sleeping with the lights on. Though we have sophisticated security system (and a tiger mom who knows karate!), she felt unsafe.

“It’s too dark,” she said. “I feel safer in the light.”

Though I tried to soothe her fears, rationalize them away with facts, figures and statistics, and even help her appeal to a higher power, she still felt afraid.

And, I can’t blame her.

Sometimes, even when we’ve spent most of our time navigating light and dark, we just need permission to be scared. To feel unsafe. To turn on the light. No matter how silly it seems.

I’ve spent most of my life — at least the past 10 years — in the boxing ring with cancer. A few times, it managed to get a few blows, cut a few scars, and made me shake my head to come back to consciousness.

But today, for lots of reasons, I’m laying on the mat. Listening to the count. Knowing I’m going to get up. Eventually. When I have the energy to do it.

Soon enough,, I’ll put my hands back up, swish my feet back and forth, and jab, bob, and weave like a champ. And, in my dream world, I’ll have a banging 6-pack of abs rippling with every twist and turn….

This past week, while at a consultation to reduce the raised scars from my bilateral mastectomy, the dermatologist noticed a mole on my breast — my breasts without nipples, without tissue, without any sensation. My breast that resembles more like a football than a body part. My breast that I removed to reduce my risk of cancer.

Though I am not wallowing in “what might be”, I am not ashamed to admit that I am afraid.

Today, all I want to do is keep the lights on. Just for a little while. And see if the fears go away.

Peace, love, and letting myself just be afraid, (click on the link to hear me sing…)

Liza

LETTING CHANGE HAPPEN

“Have you noticed any changes?”

“No, it’s been there for, I dunno, like 6 years.”

“But have you noticed any changes?”

 

Over the past few months, there have been significant changes in my personal life. One of them, as you may have noticed, is that I’ve been blogging significantly less (has it really been two months since my last post???). On one hand, it means there hasn’t been a lot going on in my mastectomy/recovery world. One the other hand, the posting of a new blog probably means there is  …..

 

Post-mastectomy, I developed quite a few raised scars. Always on the quest to look at things with humor, I’ve referred to my raised drainage scars as “the infinity scars” because of their connected, oval shapes — much like an infinity sign on the side of my body. And, they have been incredibly itchy for what feels like, well, infinity. I’ve used vitamin E, silicone, and then just massaging them at night. If you’ve ever sat near me for more than an hour, you have likely seen me bending my left arm at a 45 degree angle and scratching my side like a baby chimp.

 

The other scars haven’t bothered me as much, but they are certainly a nuisance. At the outer edges of my breasts, the ends of my scars are also raised. They hurt less because I still don’t have any nerve feelings on my chest, but they hurt “just enough” to bother me at the end of a long day.

 

At my last surgical check up, I asked my doctor what could be done, and she recommended a fantastic doctor who could laser them. I set up the appointment and thankfully, due to a cancellation in her schedule, got in within a week.

 

Now, side step for a moment ….

 

For the past six years, beginning when I was pregnant with my second child, I developed a dark spot on the left side of my face, just below my eye. It’s not cute, but I’ve gotten used to it. It’s fairly light — but noticeable — and has changed in color and size over the years. One day, my office mate, who is a melanoma survivor, pulled me aside.

 

“Liza, I know this seems weird for me to say, but I’d really like for you to get that spot checked out. I’ve noticed it changing over the years and, well, I’d rather you be safe than sorry.”

 

Suddenly, this cute sunspot, a momento of my pregnancy, became a source of worry.

 

Back to the original story ….

 

“Just put on this robe, opens in the front, and the doctor will be ready in just a minute.”

 

Now, I’ve been in a lot of doctor’s offices: “Just a minute” usually means I can answer a dozen emails on my smart phone, read about Sexy New Secrets in a fashion magazine I would never actually buy for myself, and fit in a quick power nap. So, I was leisurely folding my shirt on the chair by the door.

 

“Oh! I’m so sorry! Would you like me to come back when you have the robe on?” said the surprised doctor.

 

“Doc, I’ve had three children, a mastectomy and my gall bladder removed. I’m quite sure there isn’t an inch of my body that someone hasn’t already seen already. Come on in.”

 

We exchanged introductory words, and the doctor sat across from me. As I was describing the scars, the infinity sign, the itching and the rope like pattern along the edges of my breasts, the doctor interrupted me. “I have to stop you. I know that you’re here for your scars, but we need to talk about that spot on your breast.”

 

“You mean the spot on my face?”

 

“No, this large, dark, irregular shaped mole right here. Have you noticed any changes?”

 

And, with that, without discussing my scars — the original reason why I was there — the doctor had already booked my procedure to have the mole removed. “I just don’t like that. I don’t like that mole at all. It’s just very classic,”

 

“Classic, what?” It was my turn to interrupt.

 

“We need to have that removed, Liza. Immediately.”

 

I had prepared myself for the snapping pain of laser or  sharp pinch of steroid injections. Prepared myself for the relief of itching. Ready to say goodbye to the Baby Chimp that I turn into a few times every day trying.

 

I was reminded of the last time I went into a doctor’s office thinking we were going in for one thing and left with another. We thought we were going in for a “lazy eye” and we left with a cancer diagnosis for my 2-year old daughter.

 

I’m used to this kind of thing. 

 

“You’ll need to rest for a few days after this. You won’t be able to lift anything heavy. You won’t be able to do household chores for a few days. You won’t be able to lift your arm above above your waist for a few days. You’ll have  a 3-inch scar on your breast…. I mean, another scar on your breast.”

 

“I’m used to that,” I said.

 

The irony is not lost on me.

 

“So, let me get this straight, doc. I went and had a double mastectomy in order to prevent my risk of breast cancer. And, now what you’re telling me is that I may have a cancerous mole on my breast?”

 

“Let’s cross that bridge when we get to it, okay?”

 

Some things just never change. 

 

Peace, love and progress,

Liza

 

 

 

 

Practicing Inclusion

Meet Elfonso. He’s our “Elf on a Shelf.”

Doesn’t look like your Elf on a Shelf? Let me guess two reasons why: 1) Our Elf has brown material and 2) Our elf isn’t made of ceramic.

Let me explain.

A few years ago, the kids asked me about Elf on a Shelf. And, given that I had just had a mastectomy and was in no condition to drive to the store to buy one, I just made up some excuse about how the Elf had to come into the house before Thanksgiving or else we’d have to wait until the next year. And, since I was still taking pain killers after my surgery, remembering to move Elf on a Shelf just wasn’t an option.

In 2011, one year after my surgery, and every day leading up to Thanksgiving, the kids reminded me about Elf on a Shelf.

I drove to the store located in our very ethnically diverse city, and checked out all the Elfs in the boxes. My first thought? “Oh, those are going to break with my 2 year old in the house!” My second thought? “Where are the brown Elfs?”

Now, for some of my Marathon B4 Mastectomy readers, though my blog has been mostly about cancer, disability, and health issues, I also am an individual who is committed to social justice, inclusion, and diversity education. My family and I (which includes young children), have open dialogues about race, sexual orientation, socioeconomics, religion, disability, etc.

Back to Elfonso….

On the Elf on a Shelf box, there was a picture of an Elf with brown paint. I asked the sales person if she had any of THOSE out back, and she said, “No. We don’t carry that one.” (insert jaw dropping, particularly in our ethnically diverse city).

The only Elf with brown material they had was a stuffed one.

Now, I believe that most things happen for a good reason.

One good reason was that I ended up emailing the makers of the doll, and then the company that owns the store, to state my disappointment that they wouldn’t carry “that one”.

But, there were many good things that came out of my purchase:

1. Stuffed Elf was $9,99 vs Ceramic Elf which was $30+

2. Stuffed Elf has been squished, squashed, and thrown in the wash

3. Stuffed Elf is easy to throw into my jacket pocket when we travel during the Thanksgiving-Christmas time

4. Stuffed Elf gets to hang out all year (which just serves as a reminder to put him out on Thanksgiving) in the stuffed animal bin

But, the best reason for having Elfonso IS that he is brown. After all, if the story of Santa and his elves is (spoiler alert) mythical, then why can’t Elfonso be brown? The story of Santa is a collection of lots of different stories that occur around the globe — stories of kindness, generosity, giving and magic.

Folks usually ask me, “How do I expose my kids to diversity?” It’s easy — incorporate it in every day life.

If you were to ask my kids to draw Santa, they would draw a white man with a white beard and a red outfit. And, that’s just fine. However, they have also heard about this same character in stories across the globe, in other cultures, and for other kids in other countries!

The more we can broaden their ideas, the more likely we are to raise the next generation of people who believe that there is more than one way to think, that there is more than one way to look, and that we are all part of a story of love, giving, kindness, and wonder.

Now, if I could only remember to move the Elf more often ….

Peace, love, and practicing inclusion,
Liza

SENSES

We don’t visit my in-laws enough.

Though we are only separated by a 4-hour drive, life, work, school, and weekends tend to get booked up quickly. They don’t come to visit during Thanksgiving because they are busy serving meals to those who are hungry, and we don’t tend to drive there during Christmas because of the weather.

When I do visit, usually in the warm heat of the summer time, my favorite Rockaway moments are when I caress the outside of my cup of Bustelo coffee and feel its warmth against my palm, make my way onto their small balcony, breathe in the sea air, and look out onto the  beach that feels just within reach of my 11th floor view. Sometimes, I admit, I glance at the high rise building across the way and wonder what the hundreds of other people are doing in their apartments, too.

Though my view each morning is peaceful, I am always reminded of the view my brother-in-law saw when he was just 9 years old. The flames of lower Manhattan on fire, the thunder of fighter planes racing across the skyline, and the smell of smoke so thick it turned the 9:30am horizon into darkness.

This time, as I made my way into Far Rockaway, at 1:00pm on a Saturday afternoon, the chill was colder than the early November snow that had fallen-then-melted. It was a chill of silence. Of deafening emptiness. Of thick loneliness.

Four hours earlier, my husband and I loaded up our cars with boxes of donated items that were collected by family and friends: diapers, blankets, formula, water, food, medical supplies, garbage bags, face masks, pillows, cleaning gear. Even before we dared to cross the New York border, we waited for 15 minutes in the line for gas, assured that once we hit New York, we might risk closed stations, rationed portions, and even longer lines.

Driving into Rockaway has always been an adventure — it’s where the “driver” in me usually gets annoyed. Folks crossing the streets with no concern for their lives, cars weaving in and out (usually, nearly hitting the folks who were crossing the streets with no concern for their lives), long lines that led to the local hand-dried car washes, and the disappearing of sky as small homes were replaced by towering apartment buildings. But, driving to Rockaway also makes me smile. The sounds of beats and bass coming out of car speakers, the melodies of men speaking Spanish outside of the convenience store, and laughter of kids on the local playground give a sense of a community.

This past Saturday was the first time I returned back to Rockaway after Hurricane Sandy. And, this time, my senses were hit with a different emotion. My smile turned to tears. Playgrounds were empty. Stores were closed.

When I did see groups of people gathered, they were in church parking lots making use of what little assistance was available. As I drove by in my car full of blankets and food, I braced myself for what I would see when I pulled into my father-in-law’s church.

Needless to say, it took us three days to collect and gather donations; it was all gone within just a few hours. “Come back tomorrow,” I kept repeating. Come back tomorrow. But, what was going to be there tomorrow?

Each day was lived for that day.

I was so thankful for the many volunteers who came to Full Gospel Tabernacle Church on Beach 42nd street that day. Volunteers ranged from a well-organized church who brought community members to a well-organized mother who had brought bags of items from Whole Foods. The Whole Foods mom also brought her two daughters with her, and as she left, I heard her say to them, “Girls, see. This area isn’t getting the kind of help that other areas are getting. We need to start coming here.” Whole Foods mom may never read this blog, but, if you’re out there, thank you.

Slowly, individuals are making a difference. But, where were the bus loads of volunteers that I had heard about on Facebook? Where were the rows of tables of hot food that I had seen restaurants post photos of on their pages? Where was the music, the fun, the games? Where were the “mobile units” where people could charge their cell phones and check their email? Where were the generators I had read about that had been donated to the relief efforts on Rockaway?

They weren’t at Beach 42nd Street. And, they weren’t in the 20 streets I passed to get there.

Where were the armies of volunteers with trash bags and face masks? With brooms and mops? I managed to take a photograph of the three volunteers that I saw.

Where were the community organizers who were helping those displaced by the floods? I saw one that day.

Where were the electricians? The volunteer medical teams? The “we need help sorting items because we are overwhelmed with donations!” tables?

Where. Are. They?

My car didn’t travel far enough to find them. But, I can tell you that they weren’t in the streets that I drove on. They weren’t by the bodega that I once saw men laughing at on my last trip to Rockaway. They weren’t near the playgrounds. They weren’t handing out dinner rolls. They weren’t there when I had to tell an 8-year old boy that I could only give him 1 muffin and not 2, even though he hadn’t eaten all day.

My husband and I had to eventually return back to Massachusetts, where we have already begun collecting items to take on our next drive back to Rockaway. We will fill up our cars, unload them once again, and watch as our massive donation is handed out within an hour.

Earlier today, I had a conversation with a friend who said, “It’s so great to see that hundreds of volunteers and donations are in the Rockaways!”

“Parts of Rockaway,” I reminded her. “Not all of Rockaway.”

Let’s develop a common (i.e. shared) sense of community and get some relief and support to all areas of Far Rockaway.

Peace, love, and common sense,

Liza

JUST FOR A MOMENT

Sometimes the best moments are in the face of total exhaustion.

 

Along with working full time, enrollment in a full time doctoral program, sitting on a number of non-profit boards, and a full time mom who is trying to raise responsible and loving kids, I make it priority to also pay some attention to myself: running, writing, and singing. At any given time, I focus more on running or writing or singing, but I fit it in because it makes me feel whole.

 

I’ve recently been sitting in on some gigs with two incredible musicians who have let me peek into their acoustic world. For those songs, a few times a month, I feel completely free. I’m nervous, a bit unsure, but my heart soars when I’m singing.

 

And, on this lovely out-of-season warm day, my daughter and I went into the city to spend some time together. We grabbed a book, picked our spot by the reflecting pool, and just sat.

 

While I people watched, my 6-year old daughter was lost in her world of a teenage detective. I stared lovingly at her, wondering if she was trying to solve some major mystery. Wondering if she was piecing clues together in her head of who left the fingerprints on the missing box or which best friend committed the actual crime.

 

I picked up my cell phone, began filming her, and wanted to capture this intensity.

 

Then, she did it.

 

She started dancing.

 

Dancing like everyone was watching.

 

Dancing like she was the only one who cared.

 

There was no music.

 

She just danced.

 

And, as quickly as she started dancing, she stopped.

 

Picked up her book, exactly where she left off.

 

I thought she was dancing just because she saw me pull out my cell phone, but that wasn’t the case.

 

She just danced. (best 20 seconds of your day for some inspiration!)

 

I wondered, how often do we keep ourselves from dancing because we are afraid someone’s watching. Or, we are afraid no one will watch and pay attention. Or, we’re afraid it’ll take too much time, or afraid we can’t commit enough time. Or, that we don’t have a good enough reason to start. Or too many reasons to stop.

 

Truth is, sometimes all we need is a good dance break. Just because.

 

Let’s stop standing in our own way.

 

And just dance. Even for just a moment.

 

Peace, love, enjoying the moment,

Liza

WITH A LITTLE HELP

I’m not one to admit defeat, but this past week, it’s been the the theme.

 

For the past few years, I have been experiencing terrible pain in my stomach area. But, because I was so focused on other health issues (BRCA, mastectomy, etc), I pushed it aside and simply dealt with it when it happened. The pain only came a few times a year, but when it did, it was unbearable. Stubborn me, I meditated through it, curled up in a fetal position, and knew that the start at 3am would soon end around 7am. Just in time for me to put myself together, shower, and head to work.

 

The first few times it happened, Jorge and I figured it was a bad meal. Too many mixed packets of mayonaise+ketchup (oooh… delicious!). One time, Jorge left the house in the middle of the night in search of a 24 hour pharmacy where he came home with a bag full of antacids, Pepto Bismal, and heating pads. I would down them like a buffet, and within an hour, they would all end up in a toilet after a nauseous bout. The heating pads would turn cold long before they would provide relief.

 

“Maybe you should go to the emergency room,” Jorge would say. Every single time.

 

“I’ll get through it. I’ll get through it,” I managed to say, wincing and writhing with pain.

 

And, inevitably I would. Morning would come, and the pain would subside. And, I would be okay for a few more months.

 

In this year alone, however, those months turned to weeks. But I still never made anything of it. Even at my last physical just a month ago, when my doctor asked if I was having any health issues, I said, “Nope.” After all, I had a mastectomy. My Boston doctors were following my ovarian issues. So, no, I was all set.

 

“Oh, right, except for these stomach pains I get every once in a while. No big deal, I usually tough through them, but they are  a pain (hahaha).”

 

An ultrasound and some blood work later …

 

I was diagnosed with gallstones. Those stomach pains were never going to to go away with some antacids. The pain was that a gallstone was getting stuck in the tiny canal that leads to my intestines.

 

I put that doctor’s visit aside and figured I’d schedule some exploratory appointments during the holiday breaks — a time when my schedule was less packed with school, dance classes, singing, work, life, etc.

 

But, my body had different plans.

 

On Friday, the familiar beginnings of those pains came on at 3:00am. This time, however, there was no meditation, prayer, or toughing it out.

 

I protested going to the emergency room, just like every other time before, but by 5:00am, I was nearly passing out from the pain. “It’s time to go, Liza. That’s it,” Jorge urged.

 

It was so bad that I agreed.

 

We had to coordinate getting the kids to my parents, and by the time I was ready to go to the hospital, I was begging for mercy. Sobbing. Wailing. Unable to even see clearly.

 

My surgery was scheduled for Tuesday, and I’m finally home and recovering. Though my scars and the healing process are nothing like my mastectomy, I am finding myself struggling emotionally with being cooped up and unable to pick up where I left off. My scars are small on the outside, but I’ve had to surrender to the fact that I can’t be at events at work, with the family, or even school.

 

That piece will be the most difficult part of my recovery.

 

I have had to surrender to others. To trust that others will do what they need to do. To trust that my body needs this time to heal, and that, yes, my mind will follow.

 

Once this recovery period passes, I will no longer be in physical pain from those attacks. However, to get there, I need to surrender to the emotional pain of just letting things go.

 

Peace, love, and getting by with a little help from everyone,

Liza