What being BRCA positive means:
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.
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.
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. ❤️
**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.