My double mastectomy surgery: 24 things about the first 24 hours

1. The hunger. I’d practiced intermittent fasting and weaned myself off caffeine in the weeks leading up to the surgery, but thanks to an early bedtime, a late surgery, and some delays getting a hospital room after recovery, I didn’t end up eating for over 24 hours. The nurses did give me some ice cubes. They were amazingly delicious. I declared in wonder: I should eat ice cubes more often.

2. Getting transported around the hospital in a wheelchair prior to surgery. It’s weird to feel like an invalid.

3. A very, very kind nuclear medicine tech. He injected radioactive dye so he could locate my lymph nodes. The dye is mixed with lidocaine, and even though he warned me that it was going to hurt, and injected the dye very slowly, it didn’t hurt at all. A+ bedside manner. Once the tracer dye was in, he used a gamma ray camera to take images of the lymph nodes. I got to watch; it looked like the world’s blurriest x-ray, and I have no idea how it was at all useful to anybody looking for my lymph nodes, but he assured me that it would be. Science is amazing.

4. So. Much. Waiting. I spent the better part of six hours sitting around after I checked in for my surgery. Nurses and techs would occasionally whisk me out to give me pills (Celebrex) or make me pee in a cup (pregnancy test, for real) or other various things. It was a long wait.

5. Pre-op. At this point, I actually had a surgery bed, and could see down the hall to the operating theaters. I met my anesthesiologist, of whose skill my breast surgeon spoke very highly, and he seemed both knowledgeable and charming. Two nurses struggled to get an IV started, and they eventually succeeded in the back of my hand. Ouch. A nurse also wrapped me up in an inflatable plastic bubble filled with hot air. It was stiflingly hot—I think the panel said 100º. I asked a nurse to turn it down and she did, and then another one came along and turned it up again. First they cook you, then they carve you!

1. 6. The operating theater. It was HUGE and sort of surreal. There were 3-4 buffet-size tables along one wall that were all COVERED in neatly-arranged lines of clamps and tools. It took a minute, but I was amazed when it clicked that those were

all for me

. SO MANY TOOLS.

7. The paravertebral block. As I understand it, the PV block is an injection of local anesthetic into the nerves in the back, around the shoulder blade. This was heralded to me as a miracle of modern medicine. My breast surgeon’s explanation was that by “shutting down” the nerves prior to the surgery, it had an effect of the nerves not “registering” the trauma, and that many patients who received the PV block got by without narcotic painkillers post-op (despite my best efforts, I was not to become one of those hardy patients). To do the paravertebral block, the anesthesiologist sat me up, lubed up my back, and located the nerves using ultrasound (he had some residents observing, so he was explaining it all as he went—fascinating stuff) and then in the needle went. I’m not sure what happened during the injection itself, but I started sweating something fierce and got dizzy. When I warned him that I felt like I was about to pass out, he dialed back whatever was causing me issues and I got better. I remember regretting all the sweat, since it was going to be a few days before I was allowed to shower. The only thing worse than a hospital gown is a soggy, sweat-soaked hospital gown.

8. Either I was pretty lightly sedated, or they just wake you up whenever they feel like it, or both. Like I vaguely remember the pressure of my surgeons cutting and stuffing and such. And I remember when my breast surgeon said that my sentinel lymph node was free of cancer cells. Weird.

 

1. 9. The recovery room. I spent

hours 

in there because all the hospital rooms were full. It was tedious. It was lonely. And it was depressing. There was a woman on the other side of my curtain who was, by the sound of her moans, having a much worse recovery than I was. I felt for her. I asked to see my family, and eventually the nurse allowed it and sent my boyfriend and dad in, one at a time. Have you ever woken up before your alarm and felt super awake, but instead of getting up, you go back to sleep and wake up later super groggy? Well, Felix told me I looked “radiant” when he came in. Then I napped for a while, and when he came in later for the second time, he told me I looked “tired.” The struggle is real!

Also, this is when they started feeding me those delectable ice chips.

1. 10. IV Tylenol. I know what you’re thinking. Tylenol?

Weak

. But IV Tylenol is a whole different beast from the pills you pop in the misplaced hopes that they’ll make your cramps go away. It’s a magical drug that I desperately wanted more often than the every 4 hours I was allowed to have it.

1. 11. The hospital room. Around 9pm, they wheeled my bed around the hospital for a while and then eventually found a room to put me in. I had my own private room, which was amazing for many reasons, not the least of which was that it meant Felix could stay with me (I offered to share my super-sweet hospital bed, but he opted for the pull out couch). I was also at the end of a hallway. My nurse, whose name I remember because it is also Ashley, told me this was awesome because it was quieter. I did not sleep at

all 

though. People come in all the time.

12. Seriously, just take the narcotics already. I started out determined to be one of those model patient, only-Tylenol-taking paravertebral block success stories my surgeon had raved about, but caved pretty quickly. I couldn’t really tell where the pain was coming from, but life was just generally pretty painful. I’m not typically sensitive to pain, so I wasn’t sure how to answer the “how’s your pain on a scale of 1-10?” question. In my perfect world, we’d just have 3 points on the scale: 0 (no pain at all), 1 (yeah okay I feel it), 2 (holy shit, ouch). But the rest of the world insists on the nuances of a 10-point scale, so I arbitrarily chose 6. The nurse commented that I always chose 6. I shrugged and accepted my oxycodone—evidently, 6 is a passing score.

13. Inflatable leg massager thingies. On my breast surgeon’s insistence, I was to wear these velcro sleeves on my calves any time I was not standing, which was most of the time. They were tethered to a car battery and they rhythmically inflated and deflated with the aim of preventing blood clots. I felt like these had the potential to be magical massage machines, but they were disappointing. Nurse Ashley informed me that once upon a time, the hospital had more portable calf massagers that you could wear while you walked around, but that too many people had walked right out of the hospital with them, so the car batteries were brought in as a theft deterrent.

14. The drains. I had four Jackson-Pratt drains, and of course I’d heard all the horror stories beforehand. Honestly, they weren’t as bad as advertised. Sure, it’s kind of horrific to watch your insides drip out of you, and the tube holes are painful. And the tubes themselves were a major player in my crippled range of arm motion, as I later realized. But I think the worst part of the JP drain is when you’re emptying it and you have to “strip” the tubes—that is, squeeze all the blood and chunks (yes, chunks) down the tube into the bulb. This is not only disgusting, but also makes for a terribly unsettling suction feeling at the end of the tube, which is burrowed deep inside you. Other than that, they’re fine.

15. Food. If you hate food and love not eating, hospitals are the place for you. Finally, after demonstrating ample proof that I could devour entire cups of ice cubes without barfing, I was finally permitted to consume a cup of Yoplait. It was not just the only, but also the best thing I had eaten in some 27 hours. I could have kissed my nurse, but I was too busy pouring yogurt in my face.

16. Getting up to pee and having the decency to put some shorts on afterward. I put it off as long as I could, because I felt pretty permanently ensconced in my hospital bed and moving seemed like an unwelcome challenge, but eventually I had to go for it. I’d learned the hard way in pre-op that having an IV in the back of your hand means that under no circumstances should you attempt to push yourself up off a bed, so that option was out. Plus, in the time that had passed since that painful discovery, I’d had my breasts cut out and a bunch of new stuff shoved in and stitched down to my pecs. Having established that using my arms in any way was of the question, it was an awkward wiggle to the edge of the bed and one giant feat of abdominal strength to propel myself toward the bathroom while I accepted my new life as a Tyrannosaurus Rex.

A T-Rex who pees blue. That’s thanks to the lymph node tracer dye.

I crowned this small victory of having gotten up to pee by putting on some underwear and shorts. The 12 or so hours of having my butt hanging out of a hospital gown had come to a welcomed end. Dignity was a faint light at the end of the tunnel.

17. For any number of totally valid reasons, I was completely unable to sleep all night. Mostly I read books on my iPad and ate snacks and alternately watched Felix sleep/watched the clock/waited for the next time a nurse was going to come in (the schedule was written on a whiteboard). Generally, insomnia might have stressed me out, but this was mostly fine, if boring—I had nowhere to be.

18. Getting discharged!  Even though I stayed overnight, my mastectomy was technically an “outpatient” surgery because I was discharged less than 24 hours after my surgery. I was in the hospital for something like 28 hours total. It was a joy to wriggle into a hoody and sweatpants (and pin up all those drains) and say goodbye to the hospital gown. I felt pretty stable, but I still got wheelchaired out of there. I had the same guy pushing me around as I had the day before on my way to the nuclear medicine room, so we got to catch up.

19. Getting driven home. I can’t say that the seat belt was comfortable (I’m grateful for no bumps or sudden stops), but it wasn’t that bad, either. The anticipation of pain and feeling of fragility was worse than the reality, in most cases. The hospital sent me home with a big roll of gauze and we stuffed it between the seat belt and the foobs as a precaution.

20. My amazing friends! In the day+ I was in the hospital, my dear, wonderful friends not only babysat my pets, but also returned them to my apartment for my homecoming, along with a personalized banner and a boatload of flowers. I cried when I walked in the door. It’s so amazing to be cared for.

21. Pillow forts. With the help of a foam wedge and 3 pillows (one under each arm), I was able to recreate the hospital bed experience in my own bed. On day 1 I already missed snuggling, but having Felix on the other side of my pillow wall was an improvement over the previous night’s separate beds.

1. 22. Charts and alarms. Between antibiotics, narcotic painkillers, and ibuprofen/Tylenol, I was popping pills every 2-3 hours. We (emphasis on we, as I definitely wasn’t quite up to doing it myself right away) were also emptying drains about every 6 hours. Felix wrote out a chart on the kitchen table so we could keep it all straight, and I kept painkillers next to the bed and set a silent alarm on my watch so I could take my 2am Vicodin without waking him up. Pro tip: don’t sleep through the 2am Vicodin; I was

very

sore in the morning when I did that.

23. Basic things are super hard. Opening jars: nope. Turning a doorknob while pulling the door open: nope. Walking the dog: fine, right up until the dog suddenly bolted and yanked my arm. What I wish I’d known, though, is that so much of my range of motion limitations and pain was due to the drains (and therefore very, very temporary). Just waiting it out and not pushing myself was the right move.

24. Waking up in my own bed with the worst behind me. Sure, I had 4 giant tubes sticking out of me and some lumpy, bruised, bloody, and deflated foobs tucked under piles of gauze and wrapped up in the most matronly of surgical bras. I couldn’t reach things above shoulder level or get into 99% of my shirts. But there was nothing quite like waking up in my own bed and reflecting on the gravity of what I’d just survived. Just letting it all hit me.

Holy shit, I did this crazy, terrifying thing yesterday, and here I am now.

Alive, home, and starting again, one day at a time.