HorNormal

“Mom, mom, mom, mom, mom, hey mom, mom, mom,” she kept on. 

“Whaaaa…t…tss..hh.,” I muttered back, my eyelashes stuck together. I have to remember to remove my mascara at night. My eyes cracked through the Fort Knox of Maybelline. 

“Oh, you’re awake. Cool,” she said. “What do you think of my outfit?”

I reached out, my fingers splayed to make up for the fact that I couldn’t open my eyes to see, and banged the nightstand in search of my phone. “6:03am.”

“It’s 6:03am, Jada. What do you want?” I was not happy.

“I just want to know if you think I should wear this blue dress as a dress or as a skirt. I’m thinking skirt, but I wanted to know what you thought,” she said excitedly, as if she drank the 3 cups of coffee I had automatically brewed for the morning. The coffee which wouldn’t even start dripping for another 27 minutes.

“Whaaaaatever, Jada. Just, whatever.”

I was already feeling it coming on, and it was barely morning. 

 

deep breath. deep breath. 

 

I spend most of my time lowering the rage-o-meter. I find myself pausing more between sentences, though my mind is racing with words of anger. It’s not real, I keep repeating. It’s not real. You aren’t really angry. This is not actually upsetting.

 

it’s just the hormones….

 

It’s just the hormones….

 

On January 17, 2014, I had an oophorectomy — a surgical procedure to remove my ovaries. And, with that came surgical menopause and a complete destruction of the hormones that regulate my body, my moods, my thoughts, and my weight. I’m fatigued. I’m irritable. I’m angry. I’m in desperate need for some alone time.

All of those things: Impossible. 

With three energetic young children, a full time job, a full time doctoral program, a looming dissertation and multiple research projects, I just can’t. I just can’t.

I admit, I even mildly experimented with some of my hormones, which, yea, that was not a good idea. (note to others: do not experiment with your hormones…baaaad. baaaad idea.)

So, I’m heading to the doctor. I’m heading to the doctor to figure out what’s “normal” and what’s “hormonal”.

Or, what’s hor-normal. 

For all you “hor-normal sisters”, I’m right there with you. I’m putting on a good show when I’m out of the house, but collapse into a mess as soon as I walk in the door. I’m on the verge of crying nearly all the time. I use up all my energy to just get out the door and make it back in one piece. My body aches from the rapid weight gain that seems to just keep piling on no matter how many bare-dressed salads I eat and how many measured steps I take on my pedometer (which aren’t many because I’m so fatigued). 

 

You’re not alone. And, I know I’m not either. 

 

But, I’m hoping that the doctors can help me figure out what I can do, and that I can accept the changes that are simply the new hormonal normal. 

 

Peace, love, and remembering to breathe, 

Liza

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THE GRIP

I have this problem:

 

I’m confident.

Like, really confident.

Whenever I see a camera, I jump in front of it and pose. Whenever someone wants an interview or needs to film someone for a class project or a promo or a video shoot, I not only volunteer but insist on being in it. I speak in front of audiences of hundreds and web-viewers of thousands. I put on an outfit and think, “Yup, I’m cute.” When I enter a room, I don’t fade into the wallpaper or stand in a corner; I make my way to the middle of the room, the center of the dance floor, and smile and engage others.

I insist on being seen. 

What you don’t see, though, is why I do it. I do it to stop being invisible. I do it to challenge people’s ideas of who the “chubby lady in that loud print dress” should be. I do it because I want other “big girls” to know that we have worth, that we have value and that we take up space in this world that we deserve.

But lately, I’ve gotten bigger. I’ve taken up more space.

Before my oophorectomy — the surgical removal of my ovaries to save me from getting cancer — I was already heavy. My butt is big; my thighs rub together; I’m too chubby to cross my legs in that sassy, sexy legs way; and my baby pooch is prominent. After my mastectomy, my body started to look a little less proportional because, dang, silicone doesn’t gain weight when the rest of my body does. So, I have these tiny breasts and a big old body.

But, I have, for years, embraced my double-digit sized body. You can’t miss me when I enter a room, and that’s the way (uh-huh, uh-huh) I like it.

However….

after my oophorectomy, my body went into hormonal shock. I had a tough recovery which was complicated further by my hormonal roller coaster. Fatigue, a painful post-op, and then artificial hormones set in.

And, on came more weight. 

And, this time, it tipped the scale (pun, maybe, intended).

I hit a point where, ouch, feeling big feels awful. Feeling big feels, well, just big. Not big and beautiful. Not big and sexy. Not big and sassy. Not big and confident.

Just big.

The kind of big where my confidence is chipping away. The kind of big which keeps me from even attempting to go to my high school reunion. The kind of big where, urgh, I’m feeling embarrassed to take up space. Where I don’t want to be noticed.
The kind of big that puts big girls like me back into a shame spiral (my favorite term, courtesy of my sister Grace).

 

Until Grace (same sister) sent me this article where the author describes her feelings of humiliation based on her weight:

That’s the thing about humiliation—it sticks with you. It becomes a part of you. Because it’s not an external emotion, like anger, it’s internal. It’s losing your grip on the image of yourself you’re trying so desperately to control and project. It tears down the curtain. It undermines who you think you are as a person, and that’s frightening.

That’s frightening. And, it felt good to read it. It felt good to know that this is real. It felt good to know that this space, this feeling, is about me. 

All of the years of building myself up, of feeling confident, about wanting to disrupt how we treat people who embrace big bodies, about being body positive are starting to wear thin (dang, did I just write that word? thin? see how it’s permeating my brain!!!)

I’ve been doing damage control — dressing up more, wearing flashy high heels, loud earrings, and even more dramatic makeup just so that I won’t disappear into the landscape. Bought some new red lipstick. I made a few plans to eat out so that I don’t feel like I am only good enough to hide in pajamas on my couch. I even cut 14 inches off of my hair, just so that I would be noticed.

Is it working? Yes.

It is permanent? No.

Is it real? As real as the grip in this gripe.

Peace, love, and, yes, still debating whether or not to go to reunion,

Liza

 

 

 

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About Us

Sassy, thirty-something woman with great sense of humor, good career, positive attitude, and go-getter spirit. Also has hot flashes, vaginal dryness, decreased libido, sleep disturbances, memory changes, mood changes, fatigue and weight gain. Seeking a plate full of carbs, chocolate covered anything, a self-regulating blanket that knows when she’s about to wake up in night sweats, and a scale that reports 40 lbs less than she really weighs. Applicants accepted immediately.

 

One day, I just noticed it. It didn’t creep up on me like I had expected to, but one day, it was just there. Unavoidable. Like a surprise dinner guest when you just got into your comfy pajamas with the yellow ducks and soap bubbles patterned up and down the sides. The pajamas that you spilled coffee on a year ago and just can’t seem to get the stain out, but that stain reminds you of how much you love coffee. The pajamas where the seams are just slightly coming apart. The pajamas that, when you spilled some frosting on them from the cupcake you are eating, you wonder “are these actually clean enough to use my finger to scoop off the frosting and lick the frosting?” but then you do it anyway because you trust these pajamas pants. They are your soulmate. And, you would definitely lick frosting off your soulmate. 

Every Wednesday for the past three years, I have attended this weekly meeting with the other Directors in my division and I sit in the same spot, same chair,  and have the same view of the room. My routine is comforting — I enter into the room, place my pen and paper on the table that seats 12, position my phone to the right hand side of the very fancy desk blotter that sits in front of each Director, turn the wheeled chair a tad to the left, slip into the chair, and pull the chair in so that my elbows are at a 90 degree angle on the table. I am ready for anything.

Two weeks ago, I entered the room, placed my pen and paper on the table that seats 12, positioned my phone to the right hand side of the very fancy desk blotter that sits in front of each director, turned the wheeled chair a tad to the left, slipped into the chair, and pulled the chair in so that my elbows are … urgh… what the? …. ugrh… What the hell is blocking my chair? What the hell is blocking my chair??

I swiveled around and peeked under the desk. Maybe one of the wheels was caught on my bag or a fallen sweater. I used my legs to pull my chair in, hoping to at least break free from whatever it was that wouldn’t allow my chair to move forward.

And, that’s when it hurt.

Physically and emotionally.

I felt the harsh edge of the table push up against my mid-section. My stomach. My body.

My own body.

My own body was keeping the chair from moving in close enough for my elbows to sit at a 90 degree angle on the table.

I wasn’t ready for this. 

 

I had heard that weight gain was a common result of surgical menopause. I had read that women unexpectedly watched the numbers on the scale creep up after surgical menopause, a result of my high risk of ovarian cancer and the decision to thrust my body into a hormonal abyss. A decision to remove my ovaries, my future of child bearing, and an untimely battle with cancer left me with a growing mid-section.

 

I hadn’t felt my pants getting tighter or my clothes fitting smaller. I hadn’t felt weak or noticed any trouble lifting myself out of bed. I hadn’t noticed myself getting bigger or doorways getting smaller.

 

But, at that moment, I was faced with the reality of my changing body. And, like most women who have been socialized to place worth on how our bodies look or what types of norms we should fit, I began to feel like shit worthless. I began to think of all the speaking engagements I should cancel because it would be horrifying to for all of these people in the audience to look at me under glaring spotlights. I began to think of all the conference presentations I had to go to and whether or not people would see me as “the chubby Asian American lady.” And, any doubts and fears I had about going to my upcoming high school reunion were dismissed because, well, I definitely wasn’t going to go now.

 

“But, you don’t look like you gained weight,” said my co-worker when I revealed to her about the hormonal weight gain. It’s funny how a well tailored black jacket can do wonders.

 

For the rest of the day, I kept thinking about (and, oddly enough, banging into) my much larger midsection. I went to more meetings that day and tried to hide it. Once, when sitting, I tried to fold my arms across my chest, but quickly realized that my arms were actually settling in on TOP of my stomach — yes, like a shelf. That trick ended quickly. Then I tried to sit super close to the table so that my stomach hid underneath the table top. That worked until I realized my boobs were just laying on the table like a shelf. Awkward. Eventually, I just let it all out. I just let myself be me.

 

When I came home, my 5-year old son asked me to sit on the couch with him. And, like always, he snuggled up underneath my arm, took his tiny hand and began to rub my stomach. “Oh! Flat tummy! I love flat tummy!” he said in a familiar tone. Evan asks for “flat tummy” at least 10x a day.

“Oh, son. I don’t think Mommy’s tummy is very flat anymore,” I said, trying to let him down easy.

“Well, it’s so soft and fluffy, and awesome, and it’s my favorite part about you,” he replied.

And it’s my favorite part about us. 

Peace, love, and being all of me,
Liza

I wasn't kidding about the pajamas

I wasn’t kidding about the pajamas

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HEATWAVE

My eyes begin to dry. I can feel my heart beating in the space just above my cheeks. My skin begins to tingle and a fast warmth travels from my toes to my ears. 

 

And then I hear myself.

Yelling. 

 

My eyebrow furrows and anything near me is fair game. 

 

It’s not just a hot flash, although, that’s part of the problem. It’s now hormones + stress + anxiety. It all comes together in a mild panic attack. 

 

This isn’t the first one since the surgical removal of my ovaries, a procedure done to reduce my risk of ovarian cancer. I’ve had a few. Today, I actually had to leave a doctoral seminar because my head was consumed with preparing for my upcoming trip, getting my son ready for his first plane ride without me, and my first time coordinating a national awards ceremony. I couldn’t concentrate on conceptual frameworks or drawing diagrams of my literature review. 

 

“Sorry, everyone. I have to get going. I need to pick up my son,” I declared three hours before his school even closed. I made it to my car, drove about two miles, and had to pull over in the parking lot. Conveniently, it was the parking lot of my dad’s favorite Chinese food restaurant. “It’s like a drug,” he always says. “I don’t know what they do, but I crave their beef chau fun. It helps me relax.” Whenever he drives near the city, he stops at that restaurant. 

 

I pulled into the space, squeezing in between a hybrid car with two booster seats in the back and a delivery truck with red, unfamiliar writing on the side. 

 

I tugged at the zipper of my long, black puffy jacket, appropriate for yet another day that has left icicles dangling from my wheel bumper. I rolled down the window, turned my nose towards the chill, and took a deep — yet shallow — breath. I wanted to scream at anything. At something. At nothing. I grabbed the rearview mirror and tilted it downward. My face red and unfamiliar.

 

The timer on my phone played a soothing chime, signaling me to walk inside and pick up my order. I felt my heart relax. Maybe it was the chau fun. 

 

I used to crave stress. Stress, and busy-ness, made me feel important, needed, wanted. It made me feel useful, strong, and brilliant. Oh, I work full time, am a full time doctoral student, raise 3 kids the majority of the week, shuttle everyone to and from school/ to and from activities, make the lunches, the breakfasts, and the dinners? Yeah, I got this $hit. 

 

But now, with just the bare minimum of estrogen and progesterone to keep me upright, my body has a different idea of success. My stress meter is a fraction of what it used to be. When I hit that mark, my face gets red, my heart rate increases, my eye brow furrows, and my anger returns. My breath shallows. My stomach turns inside out. My mind races. I feel anxious. And, all I have left in me is to fall to the ground and cry. 

 

Tonight was one of the worst yet. I yelled at my son for not jumping rope properly, even though tonight was the first time he had ever held a jump rope. I yelled unkind words at my 7-year old for turning the pages of her 400 page book too loudly. And my 10-year old, when she asked me why I was yelling at everyone, got the worst of it. I felt the heat building up on the inside of my skin. The more I yelled, the more my insides boiled, and the more anxious I grew. 

 

I’ve always known that stress has physiological (and psychological) consequences. Now, after my surgery, I realize how little my body can take. And how quickly my body can take over. 

 

At the end of each day, I snap the silver blister tab that holds the next dose of my hormones. The felt the chalky small yellow pill on my tongue and the coolness of the water on my lips. I looked up in the mirror and began to cry. Who am I now? Who was I an hour ago? Who do my children think I am when my hormones take over?

 

“I’m sorry,” I whispered as I lay next to their beds. “I’m so sorry that I was yelling. You didn’t do anything wrong, and you certainly didn’t deserve that.” 

 

“Was it your hormones?” asked my 10-year old. 

 

“Maybe,” I replied. “But I can’t blame my hormones or my surgery. It wasn’t kind. It wasn’t nice. It wasn’t what Moms should do.”

 

And, for the first time that night, we hugged. I was thankful for the warmth of their cheeks against the outside of my skin. 

 

Peace, love, and having my own personal heatwave, 

Liza

 

 

 

 

 

 

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Winding Down

ImageI’ve always loved the hospital.

Okay, maybe not the commute in or the rushing-around-to-wait experience. But, the hospital has always been my place of comfort, kindness, belonging, and safety.

As the child of a doctor, I was very used to the hospital being “the place my dad worked.” My dad treated me to lunch at the hospital cafeteria every day when I worked in his office. After church, if he got called for an emergency, the entire family would all pile into the green station wagon and parade into the emergency room with my dad while he attended to a patient. We begged to get treats at the vending machines. We got used to the constant beeping of machines. And, seeing people at their worst — in pain, scared, impatient — and treating them with respect taught us about the importance of compassion.

When I was 10 years old, I was diagnosed with acute appendicitis and was hospitalized immediately. I remember sleeping at the hospital by myself. My parents had the other children to worry about, and I was already so comfortable being in a hospital. I even remember the first time I had to advocate for myself. I had to get up to go to the bathroom, and needed some assistance to walk. I didn’t realize that there was a “nurse call” button, and I remember trying to get anyone’s attention by lightly banging on the wall behind me hoping someone would hear me. When a nurse finally heard my tapping and came into the room, I knew that, if I ever had to, I could effectively get help if I needed it.

When my daughter was diagnosed with cancer at age 2, the only place I felt safe was in the hospital. I liked the predictability of the routine. Check in, vital signs, chemo, sleep, play, chemo, eat, chemo, vital signs, sleep, chemo, vital signs, check out. I liked seeing the same familiar nursing staff. And, they liked seeing my growing belly with Baby #2 along the way. When the world grew cruel, staring at my daughter’s missing eye, I yearned for the accepting embrace of other parents in the hospital. And, each year as we returned for her check ups, I could breathe again knowing that she was still cancer free.

For the past 9 years, I have been coming to Mass General Hospital. Of those, I have been a patient for 7 years. Beginning in 2007, I was in and out of Mass General following my high risk of cancer due to the BrCA gene. Every three months, I was either having a breast exam or a gynecological exam to stay ahead of any tumors that were destined to develop in my body.

In 2010, those visits became less frequent because of my prophylactic bilateral mastectomy. Soon after, my breast exams went from 3x a year to only 1x a year. After a quick check of my implants, my surgeon stated “See you next year!”

Though my breasts had been removed, my visits with the gynecological oncology staff continued. Every 4-6 months, I had blood work done as well as transvaginal ultrasounds to stay ahead of any ovarian tumors that would develop.

After the removal of my ovaries on January 17, 2014, my visits will also decrease to 1x a year.

Life, up until now, has been routine. I’m used to the routine of going to the hospital, seeing the staff, and getting my favorite cup of Coffee Central coffee — a half decaf/half hot chocolate — a tradition I started when my daughter was a patient.

“We’ll see you next year,” my breast surgeon said. I started to tear up. “Actually, my family is likely moving to New York sometime this year. So, I won’t see you. Again. I’ll need to see a team of doctors in New York.” I couldn’t fight back my tears any longer.

I thanked her for her kindness. For her care. For, in many ways, saving my life before it needed saving. Because of the surgery, my risk of breast cancer has been reduced from 90% to <1%. My oophorectomy reduced my risk of ovarian cancer from 60% to <1% as well.

The oophorectomy closes the door on a long journey as a BrCA previvor. In about an hour, I’ll be heading into my last visit with my gynecological oncologist who, too, saved my life before it needed saving.

Over the past four years, my body has had parts removed, parts replaced, and scars to mark the path. But, I don’t regret a single day. In the few hours I have been at the hospital, I have seen a family react to a new diagnosis. I assisted a woman as she walked cautiously to her appointment, the frailty of her bones the result of harsh treatment and bone loss. I have listened to two men crying while looking out the wall of glass windows in the hallway. And, I saw a mother and daughter holding hands in the waiting room, siting in silence.

As this chapter in my life winds down, I wanted to thank you all for coming along with me on this long and winding road. Some of you ran next to me. Others carried me.

You all were with me.

May you be loved, live in peace, and be bathed in happiness today and always,

Liza

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POST OP: 25 AND HOPING FOR RELIEF

“Just smile and wave boys. Smile and wave.” 

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“It was great meeting you, thank you so much for interviewing today!” I said to the 20th student who was applying for a leadership program that I run. Before the familiar click of the door signaled that I could officially let down my guard, I felt the tears well up. My colleague looked at me. “Is there anything I can do to help?” Thankfully, my friend and colleague is used to me crying at work (it’s the nature of the job!). 

 

Pshhhhhhhew noooooooh,” I uttered in a whisper that stole every ounce of energy I had. I cringed in pain. I couldn’t move. I couldn’t think. All I could do was close my eyes and remind myself to breathe. 

 

It’s day 25 since my bilateral prophylactic salpingo-oopherectomy, and life hasn’t been easy. For 25 days, I have been in terrible pain — some explained; most not. The actual surgical procedure was uneventful — it took 15 minutes and, thankfully, my results indicated there was no cancer in my ovaries. But my recovery has been a trial.

 

I came home the same day from surgery to recover. Jorge, my husband, was amazing and took care of me from morning to night. I didn’t do a single chore or exert any effort beyond using the remote control to click through television shows. My job was to rest, and that’s what I did. 

 

However, resting did not result in recovery. 

 

On Day 6 post-op, I began to develop an allergic reaction (contact dermatitis) to the gauze that was trapped under the Tegaderm dressings. My skin grew red, and it blistered and swelled up. Over time, the redness soon turned to a dark chocolate brown, which I learned was actually burns on my skin.

 

On Day 10 post-op, large red hives began to form on my stomach. And, within a day, my entire torso was covered in a red irritation. As I assumed it was an allergic reaction, I took Benedryl for 3 days, but to no relief. Within another day, my face, ears, and lips were covered in large hives and blisters, and it looked as if I had been repeatedly hit in the face. When I finally got in to see the doctor, my skin was red and irritated from underneath my chest to the bottom of my abdomen, and reaching all the way across. The irritation is still a mystery, but the team of doctors, nurses, and dermatologists believe it may have been a delayed allergic reaction to the surgical drapes used in the operating room. Thanks to topical steroids, it seems to have gotten better lately. And, now at Day 25, the redness has turned to a light, patchy brown. My face? It has finally returned to its normal size and the redness is slowly beginning to fade. 

 

And, now it’s Day 25. As if the skin irritation wasn’t enough, for nearly this entire time post-op, I have been dealing with severe pain on my right side. At first, the doctors and I figured it was just part of normal recovery — some pain, some tenderness. Two weeks out, they thought it might just be gas or some discomfort.

 

Three+ weeks out, now we are worried. No one is actually telling me what we are worried about, but I know that there is something wrong. When pain can reduce me to tears, something is wrong. 

 

As with most of life’s toughest battles, I’m incredibly thankful. I realize that my pain is temporary (is 25 days still considered temporary?) and that women who I have met in the waiting room are in pain from chemotherapy and radiation. Mine? Mine will be resolved and this day will seem distant. I’m thankful that I have healthcare — good healthcare — that lets me see the best doctors in a first class hospital. The pain medicine — though it hasn’t helped much — costs me merely a copayment of a few dollars. My job gives me sick time to care for my health. I am lucky. 

 

One challenge that did hit hard was having to manage taking care of the needs of my children. While on the phone with the nurse to schedule a CT scan, I had to find a time that would allow me to either pick up my kids or arrange for childcare. Though a few appointment times came up when I could get to the hospital, it wasn’t enough time for me put together a schedule. The earliest I could both get some help and get into the hospital was in three days. And, in those three days, of course, I’ve been in pain. “Can you make it until the appointment?” the nurse asked before we hung up the phone. “I don’t have a choice,” I responded. 

 

Well meaning friends and colleagues have asked, “How are you doing, Liza?”

 

My response. I just smile and wave. 

 

Peace, love, and hoping for answers tomorrow, 

Liza

 

 

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I’M ANGRY (AND SO IS MY SKIN)

It’s officially 16 days post-op and, darn it all, I’m angry. 

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Let me back up.

 

Sixteen days ago, I had an oophorectomy (the surgical removal of my ovaries and fallopian tubes) to reduce my ridiculously high risk of ovarian cancer. Six days ago, I developed a terrible allergic reaction and broke out  –head to toe — in angry, pissed off hives. I haven’t left the house in sixteen days, which also means I haven’t eaten anything new or used any new detergent or met any new people or pet any new cats or ….. well, you get my anger drift. 

 

Yet, my skin hates me. 

 

My husband, who bless his heart has loved me through thick and thin, walked into the room one morning, looked at my face, and said, “Woah. Liza. Woah.” He was referring to the fact that my face was patchy and red, and it looked like I had been (lost) in a bar fight. And, as he describes, my lip was so swollen that it looked like it was attached to my nose.

 

Are you getting how pretty I am looking these days?

 

After visiting the doctor, I received my favorite response of “Well, we just aren’t sure what this is.” Course of action? Remove everything I have introduced that is new. Including my hormone replacement.

 

In the beginning, I was reluctant to start the hormone replacement. But, after a few nights of hot flashes and insomnia (I’m talking 2 hours of sleep), Jorge thankfully convinced me to take the pills. And, that night, I slept like a baby and we could stop opening the doors and windows in my house. 

 

Now, I’m off of the hormones to see if these allergies clear up. And, now the hot flashes, insomnia, and total irritability, are back. 

 

So, yes. I’m angry. I’m angry at my skin. I’m angry at the slow pace of recovery. I’m angry at the itching. I’m angry at my dog who keeps snuggling up to me.

 

I’m angry that I’m angry. 

 

So, bear with me, friends and readers. It’s going to be a rough few days on top of an already rough 2 weeks. 

 

Until then, keep being angry. 

 

Peace, love, and angrily patiently waiting for relief, 

Liza

 

 

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