My BRCA Journey – Surgery Time – Salpingo Oophorectomy

 

What being BRCA positive means:

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It’s been a year since my mom’s ovarian cancer diagnosis. Thankfully she’s been in remission for a few months now and she’s feeling, and I might add looking, great.

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It’s just shy of a year since I (and my sister, Jill) tested positive for BRCA2. After a year full of every imaginable test (thank God all negative for cancer) I had my first preventative surgery on May 8th. I had a bilateral laparoscopic Salpingo Oophorectomy (still struggle to pronounce it). Shorter, I had my ovaries and fallopian tubes removed.

Laparoscopically: A surgeon makes a small incision in the abdomen and inserts a laparoscope, which contains a small camera and light, into the pelvis. These instruments help the surgeon locate the ovaries and fallopian tubes, which they remove through a second incision. This type of procedure is less invasive and requires a shorter recovery time than open surgical procedures.

I opted for a partial hysterectomy (leaving the uterus) because uterine cancer has symptoms and can be caught fairly early. Ovarian cancer is an evil ninja with no reliable testing methods and by the time you’ve got any symptoms it’s well advanced. My mom was fine and then boom she had Stage 3 ovarian cancer.

At this point, I thought I’d just share how it went for me, what the pain was like and what has helped me during recovery. I’m on day 3, so I’m no expert, but if you’re going through this it may help you knowing what to expect. Your experience may be different though.

I was very nervous for the general anesthesia, more so than the surgery. Maybe because I’ve never had surgery before and I’ve seen enough horror movies to assume the doctors would think I was under, but unbeknownst to them, I could feel everything but I would be unable to tell them. This is obviously a rational fear (🙄). I’m happy to say that didn’t happen.

I was prepped for surgery by some amazing nurses at Los Robles Regional Medical Center. I can’t say enough positive things about this hospital and staff – they were amazing. Professional, kind, caring and funny. Funny helps.

Then the anesthesiologists asked me a bunch of questions and explained to me what would be happening next. Truth be told, I don’t think I was listening because I was getting really nervous. Anyway, they rolled me down the hall and into the surgery room. It looked scary. Stirrups. High tech machines. People milling about. They rolled my pre-op bed up next to the surgical table. I was frantically wondering how I was going to scootch over onto the other table with some grace and not bare my bum to the world before it was time. But, those tricky nurses must’ve slipped me a mickey into my IV because the next thing I knew I was in the Recovery Room. Seriously, it was over. My sister and mom told me that’s how it would be, but I thought they were trying to pacify me. For those not knocked out the procedure apparently took about an hour. A minute for me though. 

I have no idea if I bared my bum or what kind of show I put on because I was out. When I woke up I had 3 incisions in my abdomen. As I understand it one was for the camera, one was for the slicing and dicing and the biggest one was to bring out my ovaries and tubes. Oh and they fill your belly up with some kind of gas so the doctor can maneuver around in there.

At this point I was a bit groggy, but felt ok. My tummy felt a bit uncomfortable, but no real pain.

🚨TMI ALERT: It feels like the first day of your period. Just kind of low grade discomfort.

The nurse explained (better than I will) they inject pain meds during the surgery so your pain is minimal when waking. At this point my mom and sister got to come back and see me and let me tell you they looked like angels to me and I was super glad to see them. I knew it meant I’d be going home soon. They held my hands. I felt relieved.

Anyway, cut to me getting home and my anxious husband and dogs were ready to take care of me. I still wasn’t in much pain and I was thinking, “Hey, this is sorta easy peasy” just be careful and I’d be fine real quick. Then the meds wore off.

Ow. I hurt. My gentle cramps were now gnarly day two period feeling cramps and I could barely walk and getting in and out of bed was painful. I said the F word more than once.

My husband got me set up in bed, ran over to the pharmacy and got my meds. Yay meds… Gimme! I took the Tramadol, put a hot pad cranked to high on my tummy and my husband gently placed my desperate for their mommy dogs next to me. Then he brought me some Peppermint Tea. It was the first thing I’d drank for about 10 hours – it tasted like Christmas. As planned I was home in time for the Dodger game. Yes, I scheduled my surgery according to my beloved Dodgers schedule. Darling hubby made me some chicken noodle soup, it was heavenly. The Dodgers won and I went to sleep for a couple of hours until my meds wore off. Ugh. Oof. Ouch. Plus, the gas they pumped into my belly had me feeling like a bloated stuffed to the gills tick. GasX helps the bloat.

My husband got up and helped his stuffed tick to the kitchen for a snack of meds. My throat hurt from the breathing tube (thankfully I was knocked out for that part  because I’m pretty sure if they stuffed a tube down my esophagus while awake I’d throw up all over everyone) I don’t think that happened, at least nobody told me it did. Anyway, I sucked on a Ricola to soothe my throat and went back to sleep.

Day two. I hurt. Not totally unbearable, but achy, felt like super gnarly cramps after being in a street fight where my opponent pummeled the left side of my abdomen repeatedly and I didn’t block her punches. 

Ok, this blog post is getting unbearably long.

I’m on recovery day 3 and it still hurts, but not as bad. Most of my pain is localized around my left incision site. They said that would be the worst and they didn’t lie.

I’m going to end this by telling you what has helped my discomfort.

MEDS (They prescribed Tramadol, Motrin and over the counter Tylenol)

Peppermint tea – any tea will do, but the Peppermint was especially soothing to my throat and tummy. Add honey for extra throat soothing.

GasX – seriously your tummy will be pretty bloated and tight from the surgical gas. It’s quite uncomfortable.

Ricola – throat was dry and sore from breathing tube.

Hot Pad – it will be your best friend. Helps immensely.

Water – drink tons!

Pillows! Pillows everywhere. You’ll have to sleep sitting up. Way too painful to lie flat and then try to get up and out of bed. Some people use recliners, I’m in bed leaning on a bed rest pillow (below) with pillows all around me. Under my arms, across my tummy. They work for comfort and stopping small dogs from jumping on me.

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Walk around slowly, a lot.

Gentle stretch. Raise arms. Just move around. Don’t twist though because that will hurt and you will want to roll around on the floor crying in pain and if you do that you won’t be able to get up. You’ll be down there for days. People and dogs will have to just step over you. 

REST – be gentle with yourself.

I can’t drive for a week. Recovery is supposed to take about 2 weeks. I’m going to wean myself off the Tramadol Monday and switch to the Motrin and Tylenol. I think that’s doable. 

If you’ve made it this far congrats.

I’m relieved this first surgery is over. It’s a good prepper for my mastectomy and reconstruction in September. As Scarlett O’Hara says, “I’ll think about that tomorrow”.

This isn’t fun, but all in all it’s manageable.

Plus, the whole point is my once high risk for ovarian cancer is just about nonexistent now. Let that be your guide through the pain. 

If you’re BRCA positive I’m here if you want to talk. I’m no expert, but you’re not alone. I’ve got this and so do you. ❤️

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**Edited to add: Day 3 started fairly easy, but it ended up being the toughest day. Felt very sore, bloated and achy. Just do all the things I mentioned and you’ll get through it. I’m writing this early in the morning on Day 4 I’ve gotten out of bed by myself without a helping hand from hubby and the pain on the left side is noticeably less. The bloated feeling has way subsided, thank God, honestly that’s almost the worst part. Hopefully I’m on the other side of the very painful aspect of this recovery process. I’ll update each day just to let you know what to expect.

 

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The Long Goodbye – My BRCA Journey

Since the day I received the news I was BRCA2 positive I’ve run the gamut of emotions. I mean, I know that’s not an earth shattering declaration, I was told my lifetime risk of breast cancer is extremely high, along with a higher risk of other cancers including ovarian. So, yes, I’ve got feelings about it. A lot of feelings and not all of them noble and empowered.

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I can’t lie, I’ve never been big on going to the doctor, but in the last 7+ months I’ve been to the doctor more times than in my whole life combined. Physicals, blood tests, mammograms, MRIs, invasive (excruciating!) vaginal ultrasounds and consultation after consultation. I’ve spoken to a genetic counselor, an oncologist, a gynecologic oncologist and a breast surgeon. I’ve heard about my risk of cancer, I’ve learned about mastectomies and hysterectomies. I’ve also googled every medical term I hear. I’ve looked at before and after photos of mastectomies. I’ve followed women on Instagram going through the surgeries now and watched their process and recovery. During it all I’ve watched my mother battle and go into remission from ovarian cancer.

Having this mutant BRCA gene is a head trip above anything else, at least for me. I spend my days thinking about cancer, I watch my mother battle cancer, I sit in waiting rooms with people battling cancer – I don’t have cancer. I feel guilty about my self-pity because – I. Don’t. Have. Cancer. I should be thankful every second that science has allowed me to take steps to prevent cancer and in many ways I am.

I must also admit I’ve got some self pity. I want to go back to life before cancer seeped in. Before my mom got cancer. Before I laid awake nightly wondering if cancer was growing in my breasts or ovaries right now. Did the tests miss it? Am I taking too long to get the prophylactic bilateral mastectomy and hysterectomy? Am I giving cancer time to grow as I say goodbye to my breasts and ovaries? My sister (who is on the same BRCA journey as me) and I had a bit of a laugh yesterday realizing we were running out of tests and doctor appointments, the time for surgery is rapidly upon us. No more stalling. We laughed because that’s what we do. I hate she’s going through this too, but we lean on each other, and that’s invaluable. 

I sat in the treatment room yesterday with the breast surgeon as he told me how he’d lower my cancer risk from 87% to something like 5% I just have to get rid of these dangerous breasts and replace them with some safer ones. He kinda bragged about his success rate and how good he was – I liked that about him. Although sometimes when he was talking I heard the teacher on Charlie Brown Wa Wa Wa Wa Wa. I tried to listen to every word, but my brain wanted to go somewhere else. I tried to absorb as much as possible. I left and walked through the waiting room full of women wearing bright scarves waiting for their chemo appointments.

I don’t have cancer. I’m lucky. This isn’t where I want to be with my life, but here I am. I want to be brave like my mom. I want to be empowered like the previvors on Instagram. Their strength and courage is awe inspiring. I want to be like them. I want to get on with life. So, as the endgame of surgeries is approaching I just want to have the courage to move forward and beat cancer before it even has a chance. I want to be strong.

If you’re out there reading this because you’ve googled BRCA after getting your results, just know you’re not alone. Message me if you want to talk to someone who has no idea what the hell she’s doing, who feels some self pity, has doubts and yet is still moving forward because that’s what I must do. I don’t have cancer and god willing you don’t either.

The long goodbye to my ovaries and breasts is coming to an end this year and I’m going to try to face it with the same hope, faith and courage that my mom battled cancer. I’m getting the chance to beat cancer before it even enters the fight and that is a gift.

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First Love

DAY 22 of the Flashnano Challenge. Flashnano is a challenge that involves writing 30 stories in 30 days throughout the month of November. A new writing prompt every day. As a reminder, at this stage I don’t edit these it’s simply raw, off the top of my head writing. Later, I’ll go through any that have potential and edit them. Thanks for reading.

FLASHNANO 2018 – 30 Stories in 30 Days

PROMPT 22: Write a childhood story that you’ve never written before

848F5613-8752-4FF5-87E4-508C2C064E6AThere are so many things about my childhood I simply don’t remember. Time and age will do that to you. But what I do remember is my first love. I remember the exact moment I left part of my childhood behind and discovered the wonderfulness of boys. I always liked them, I was a tomboy myself. I liked to punch them, race them and play baseball in the streets with them. Outside of that though, I wasn’t sure what they were good for – until Scotty.

I was twelve years old, and played the flute in the junior high school band. I was atrocious. I practiced and practiced, but was simply not that good. I spent a lot of time fake playing during rehearsals so I wouldn’t ruin the endless repeats of “The Blue Danube”. 

Then one day our band teacher said the band from the nearby junior high school was coming over to play with us. We were all excited for something new.

Soon after the new kids began shuffling in and took seats in their instrument sections. Brass here. Woodwinds there. Drummers in the back and so on. The room had a combustible, exciting energy.

My flute section sat directly across from the trumpet section and I noticed him the second he sat down. He was wearing a green t-shirt, Levi’s and white Vans sneakers. He had a messy mop of blonde hair. His skin was tan which gave him a golden hue or it appeared golden through the stars in my eyes – either way this boy was golden. But the thing that knocked my socks off was he had a slight overbite. Ever so slight, but that overbite did my young heart in.

He was the best trumpet player in the group and the teacher fawned over him and often had him play solos. He’d tell the band to stop and say, “Scotty, play that part again”. My teenage brain burned his name into my memory never to leave. 

Scotty.

I couldn’t stop staring at him, to the point where he finally looked at me and half smiled. I was done. That half smile and little overbite told me boys were good for more than just punching and sports. The band practice was mostly forgettable, we played the same songs over and over again, I mostly faked it, but with a bit more gusto in case he looked over at me. Every so often he did and I could feel my cheeks burn hot. This was all new to me, but I knew in that moment I was in love like only a young girl can be – full of imagined angst and drama.

Then it was over and they packed up their instruments to leave. I casually began circling him like a shark. An awkward, lovestruck shark. As he headed toward the door with the rest of his group I stood near the chair he’d just left and stared. He glanced back, said something to his friends and came back. He looked around his chair, then under it as I stood there unable to move.

Then he straightened up, looked directly at me and said, “What’s your name?” My heart stopped beating, I wasn’t breathing, but I managed to say, “Jody”. He half smiled again, nodded and walked away to join his group. I stood there and watched him leave. Someone began playing “The Blue Danube” on a clarinet in the back of the room and at that moment while the wistful clarinet serenaded I fell in love for the very first time.

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The Chandelier’s Revenge

DAY 21 of the Flashnano Challenge. Flashnano is a challenge that involves writing 30 stories in 30 days throughout the month of November. A new writing prompt every day. As a reminder, at this stage I don’t edit these it’s simply raw, off the top of my head writing. Later, I’ll go through any that have potential and edit them. Thanks for reading.

FLASHNANO 2018 – 30 Stories in 30 Days

PROMPT 21: Write a story using only 5 sentences

Still playing catch up, but I will catch up!

48CA9545-6023-4786-A4ED-562491FD59FA.pngHer cold, blue eyes surveyed the room, it was opulent to the point of vulgar just as she’d designed it.

She lied, stole, cheated, and yes, even killed to acquire everything she ever dreamed of and to the victor goes the spoils.

She reached for her glass of champagne and as she brought it to her perfectly plumped lips she smiled. 

At that moment she looked up as the massive, ornate chandelier above her head began to quiver, its crystals making a symphonic tinkling sound.

The earth began to shake violently and the last thing she saw was the ceiling splinter and release the chandelier – it chimed giddily as it came crashing down upon her.

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And Then It Was Over

DAY 20 of the Flashnano Challenge. Flashnano is a challenge that involves writing 30 stories in 30 days throughout the month of November. A new writing prompt every day. As a reminder, at this stage I don’t edit these it’s simply raw, off the top of my head writing. Later, I’ll go through any that have potential and edit them. Thanks for reading.

FLASHNANO 2018 – 30 Stories in 30 Days

PROMPT 20: Write a story set in the year 2020

CB0C446F-66A4-463A-832E-35C1085C7E3ETuesday, November 3, 2020

Tuesday night at 11:58pm, November 3 the year 2020 – Election Night.

The sky was thick with pollution gone unchecked for far too long. Fires burned half the drought stricken country and hurricanes relentlessly battered the other. The creature didn’t care. He was rich, stupid and ruled the land. Until tonight.

The creature slowly dragged its bulbous form onto the stage. It licked its lips with quick lizard-like motions. Its pockmarked skin was spray tanned orange, except around the eyes where large, purple hued bags hung heavily. It wore a long, oversized suit in attempts to conceal its immense and ever growing size. The creature’s vanity even surpassed its ignorance. With tiny sausage fingers, the creature patted its elaborately coiffed yellow hair. Always fearful a gust of wind would lift the flap that covered its bald head. Clearing its throat it began to speak.

“Look at this crowd size,” it began, but before it could finish its sentence a large, over ripe tomato hit it squarely in the face. Then another. And another. And another. The crowd began to cheer wildly as each tomato hit its mark. The creature stood stunned as tomato pulp dripped down its face leaving a trail through its fake tan.

The crowd began chanting, “Loser! Loser! Loser!”

The creature bellowed, “YOU’RE THE LOSERS! ALL OF YOU! This election was rigged!”

In frustration from the jeering, the creature turned around and began wiggling its oversized rump at the crowd. 

At this moment, five large police officers walked on stage and dragged the creature away to a waiting patrol car. Before the creature was shoved into the backseat one last gigantic tomato hit it squarely in the face. The crowd roared in delight.

With the creature firmly restrained in the backseat one of the officers reached roughly into the creatures pocket and pulled out its phone. He waved it to the crowd, dramatically dropped it to the ground and stomped on it repeatedly. The crowd went wild and began laughing and hugging. The officer tipped his cap and drove away with the creature thrashing about in the backseat never to be seen again. 

And then it was over. At long last it was over. 

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Weekend Getaway

DAY 19 of the Flashnano Challenge. Flashnano is a challenge that involves writing 30 stories in 30 days throughout the month of November. A new writing prompt every day. As a reminder, at this stage I don’t edit these it’s simply raw, off the top of my head writing. Later, I’ll go through any that have potential and edit them. Thanks for reading.

FLASHNANO 2018 – 30 Stories in 30 Days

PROMPT 19: Write a story set in a hotel room

As I play catch up on this writing challenge bear with me as I just write whatever comes to mind from the prompt. Perhaps less “stories” and just more thoughts and memories.

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Downtown Ventura, CA

Years ago my mom, sister and I used to take weekend getaway trips. More often than not we just went to Ventura and stayed at the hotel on the beach. We used to live in the area, so there was always a feeling of nostalgia as we drove through our hometown of Oxnard on the way to Ventura. We’d check into the hotel and stand out on the balcony overlooking the ocean. The sea will always wash away the stresses of day to day life. When you look out over its expansiveness your problems seem smaller and the sea breeze clears your mind. 

We never stuck around the room for long, we’d head down to Main Street to shop and eat. Main Street in Ventura has a quaint beach town vibe with none of the hustle and bustle of Los Angeles. Most of the shops are just little artisan shops selling beach themed jewelry, art and clothes. My sister would always have to try clothes on. She’d head into the dressing room with blouses and dresses draped over her arm and my mom and I would wander around waiting, as neither of us were big on trying on clothes.

We’d look at funny little trinkets of seashells painted like crabs and laugh. I always remember those little moments of laughing with my mom. Periodically my sister would pop out of the dressing room and we’d tell her how cute every outfit looked on her, and they did. She can literally wear anything and look adorable. I have to work much harder. Such is the story of sisters though. After shopping we’d head to the pier for lunch. I can’t think of much that’s more relaxing than having lunch with the waves crashing around you and just enjoying fresh seafood, a spicy Bloody Mary and two of your favorite companions. 

As I write this little stream of consciousness story, I’m thinking my mom, sister and I need to plan a weekend getaway. It’s been a helluva year, one that altered the path of our lives forever. A weekend at the beach with my two best friends is definitely in order and the sea is calling.

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This is Fine

DAY 18 of the Flashnano Challenge. Flashnano is a challenge that involves writing 30 stories in 30 days throughout the month of November. A new writing prompt every day. As a reminder, at this stage I don’t edit these it’s simply raw, off the top of my head writing. Later, I’ll go through any that have potential and edit them. Thanks for reading.

FLASHNANO 2018 – 30 Stories in 30 Days

PROMPT 18: Write a story involving smoke

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Here’s the thing… today is the 25th day of November. There are six more days of this writing challenge and I’m seven days behind.

Look, I simply can’t eat all day, every day and write compelling stories. Apparently at one time Thanksgiving was a time to give thanks and spend time with family. Now I did that stuff, but I also ate mashed potatoes. So many mashed potatoes. I swear mashed potatoes are my vice like smoking is with some people. Notice how I used smoking in the previous sentence? Well, there ya go – Challenge 18 complete. I just used smoke in a story. I also added my favorite “This is fine” meme because 1) it’s the story of my life in two cartoon panels and 2) there’s smoke in it which also checks off the write a story with smoke in it box. Just humor me.

So, my dear readers there ya go. I’m one step closer to completing this challenge and I will finish it. My catch up stories may be lame, but I ain’t no quitter. So, see you in story 19.

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