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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POST-OP: The first week

It’s officially been one week since my prophylactic bilateral salpingo oophorectomy. In other words, I had both of my ovaries and fallopian tubes removed in order to surgically reduce my risk of ovarian cancer due to the BRCA gene. In 2010, I had a mastectomy to reduce my risk of breast cancer but waited a few years before having this surgery. It took about 3 years (post mastectomy) to be “ready” (I mean, really, who is ever ready to do this?).

I wanted to write this entry because, well, I had high hopes of a fast recovery. I read dozens of blog posts from other BRCA women and they overwhelmingly remarked that “surgery was easy” and “I was back on my feet the next day.” One woman, bless her heart, even wrote that she was out shopping the next day. My older sister, who is not known for her high pain tolerance, was even up and going 3-days post op.

So, naturally I thought this would be a breeze.

Yeah, no.

This is why my entry is important. I want to provide a different experience with the surgery.

It’s officially Day 7 and, well, I want to curl up in a ball and … wait. Scratch that. The thought of moving my body INTO a ball is painful enough to make me stop that thought.

Friends, I’m in pain. The kind of “I stupidly did 1500 abdominal crunches on one side” type of pain. Now, it’s not the kind of pain that has me running to the phone to call my doctor. In fact, I think this is normal. It just hurts. Sore. Stiff. Ouch.

Day 1-3: I have no idea what occurred on days 1-3, honestly.  I don’t remember those days at all. Anesthesia fog, sleeping, eating. I do remember showering so, you know, that’s good. I walked to the bathroom by myself, but I spent most of the walk hunched over and clutching my sides. It helped to keep a box of crackers near the bed so that I could eat something before taking my medication. I was able to stop taking the hard core pain meds by the end of Day 3. I’ve also found that a light heating pad works great on my back pain — which is probably a result of overcompensating for my sore abdominal area.

Day 4: I had a bit more mobility, which for me means I made it from the bedroom to the kitchen. Oooooh. I also spent more time sitting up, though much of my  time is spent elevated on my back. No side sleeping, no side bending. It takes me about 2 minutes just to get myself out of bed because I rely on my abdominal muscles to get up, and my mid section is just so sore and bruised. Sleeplessness has also set it — I’m awake until 2am without any urge to nod off, and I’m wide awake at 7:30am.

Day 5: The first of three steri-strips fell off and the incisions look pretty good. However, I also developed a bad case of contact dermatitis. I had this once before when a pre-cancerous mole was removed, and I thought it was just a result of some cheap gauze. But, I’m realizing that it’s more likely a combination of a lowered immune system + an allergy. So, right now, my mid section is red and patchy. I am not a happy camper on Day 5. And, by golly, I’ve already watched all of the episodes of Downton Abbey from the pilot to the current episode.

Day 6: The sleeplessness is pretty bad. I spend most of the time watching all the tv shows that I never have time to watch in my ‘regular’ life. The soreness is still pretty bad. I had sneezed unexpectedly and then was hit with sharp pain in my side and uttered something entirely made up.

To celebrate Day 7, I asked my husband, Jorge, to take me out of the house. Okay, okay. I asked him to take me to get my eyebrows done. There. I admit it. But, about 10 steps out the door, I wanted to turn back around. The only thing stopping me was the impending threat of my unibrow crawling across my forehead like a lost caterpillar. (Photos not included)

The icy walk and 15 minute round trip car ride was enough. I came home, slowly made it back up the stairs, and lowered myself into bed again. Ice packs. Heat packs. Breathing in and out.

I’m sure that recovery is a-w-e-s-o-m-e for some people. It wasn’t (isn’t) for me right now. It does get better every day, I tell myself, and I’m sure this will all be a distant memory. But, for now, I’m hanging on to what keeps me happy. I’m happy that I won’t have ovarian cancer. I’m happy I get to see my kids each day. I’m happy my husband is by my side taking care of me, baking cakes, making dinner, doing laundry, sending in a glass of wine at night, and well, being beside me in sickness and health.

I’m also thankful that I spent the week leading up to surgery filming moments that made me happy: family, friends, coworkers, students, turning in my doctoral candidacy paper. I focused on the positive parts of my week and surrounded myself with people who help me feel good. I am thankful for all of you.

So, each day is a new day. Each day is a day without cancer. Each day is a day I will not have cancer.

Now, isn’t that reason enough to be happy? (cue the music video)

Peace, love, and bringing you with me,

Liza

PS: bonus photo. This is Jorge and SassyJ sleeping on the floor next to me on the couch. If that doesn’t make you happy, then I don’t know what does….

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YOU HAD A WHAT?

A prophylactic bilaterial salpingo-oophorectomy. 

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Officially, my fallopian tubes and both of my ovaries have been removed. And, I’m officially in medically induced menopause. And, I’ve drastically reduced my risk of ovarian cancer. 

 

Today is Day 4, and it’s the first time I’m writing. For the past few days, I’ve managed to put out a few brief Facebook posts, but that’s about it. So, let me put this in a bit of perspective: 1) After I gave birth, I was “live tweeting” through contractions and even announced the birth of my kids in near real time; 2) less than a week after delivering my third child, I was at work training 25 students in leadership development; 3) after my mastectomy, with little use of my chest muscles, I wrote a post using my mobile phone and thumbs about my progress; 4) I was standing and snapping selfies of my mastectomy outfit and cracking jokes (I’ll leave the funniness meter up to you); 5) four days after gall bladder surgery, I hosted an outside speaker and an art workshop at work.

 

But, today. Today is Day 4 of my post-oophorectomy. And, I’m mustering up all my strength to write this.

 

It’s not necessarily that the surgery was difficult. Heck, the average morning shower takes longer than my surgical procedure. Three incisions, snip-snip-coterize, pull my parts through a bag and out of my body, and sew me up. That’s all. Yet, this surgery has left me exhausted and in pain beyond my own tolerance. Yes, I’m on top of my medication. No, I’m not bleeding or infected or anything. 

 

It just hurts.

 

The actual trip to the hospital, and the preparations leading up to it, were fairly uneventful. I’m thankful to have prepared quite  a bit in advance – bought a huge refillable jug of water to keep bedside, pre-made a few dinner options, and prepared ice packs for post-surgery. I laid out all of my stretchy pants and loaded up the bed with lots of pillows.

 

In the days leading up to surgery, I was pretty okay. I was fine driving into the hospital and fine even getting poked and prodded before surgery. As the surgical time neared, I said goodbye to my husband, and began the long wheeled journey to the operating room. 

 

That’s when it happened.

 

I began to cry. For the first time since I decided to have surgery, I cried. As the nurse turned the corner into the operating corridor, I heard someone say, “Get her some tissues.” I sobbed. “It’s been a long day,” I said to the person handing me the tissues. “It’s been a long journey.” Soon after, I was asleep. The next thing I remember was a voice yelling for me to breathe. 

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Today, I’m just trying to get through the pain. Now, when my older sister had her surgery, she was up and about. She went out to lunch 3 days post-op. She moved easily from room to room. Me? I can’t stand up straight. I have a really high pain tolerance, yet I can’t get out of bed without wincing. 

 

I’m not sure if it’s the surgery, the hormonal crash, or just the natural course of things, but I’m also sleepless. I can’t fall asleep before midnight, am up by 6am, and awake all day. 

 

Needless to say, I’m looking forward to this passing – to the day, soon, when I can get in and out of bed without my eyes welling up in tears; when I can stand up straight; and when I can move without first Lamaze breathing (who ever knew THAT would come in handy again!). Thankfully, the amazing Jorge is here, and he is both enduring my screams of pain AND my annoying desire to pretend this is Downton Abbey and ask him to “draw the curtains” and “fetch my tea.” Poor bugger.

 

Once I get past all of the medication, I’ll begin my course of hormones, a routine I’ll keep for the next 12-15 years. I realize this all shall pass soon, and the pain will be a distant memory. Until then, thanks for your support, emails and notes!

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Peace, love, and realizing I’ve spelled “oophorectomy” wrong for, like, 6 years, 

Liza

 

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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:

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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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