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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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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