All the things post double mastectomy
Good morning to everyone! I hope you are all having a great week.
I am going to split up my post op journey by weeks for this first couple of weeks. I would like to highlight the importance of a “can do” attitude, share some tips for things to buy or have for yourself or loved ones that go through this, and try to really decrease any worries someone may have that is contemplating this surgery. I swear, you got this girl!
So we left off on surgery day… I honestly don’t remember much of PACU post surgery except for ITCHING EVERYWHERE. Add me to the list of patients that itch after diluadid. It’s awful. I’ve been told at one point my husband said “We’ve killed all the mosquitoes in here, Sami!” Other then that I don’t really remember any of it except for what I’ve been told by family and friends. My first real memories are getting into the car (I went home after surgery with no overnight stay!) cause I could hear and knew there was a lot of family and friends behind me but couldn’t see anyone so … not so politely …. told everyone to get to where I could see them in the wheelchair and then invited everyone to my house for pizza. Thankfully my family and friends knew I would be asleep not long after I got home and didn’t all come to hang out … although I swore I wanted them too! (I did legit try to eat pizza when I got home and I could not swallow it well enough even in the tiniest bites to my dismay)
POST OP DAY 1 (5/3/19)
I was given flexeril and Percocet 10/325 for pain as well as”prophylactic Bactrim until drain removal”. The pharmacist in me still isn’t over the prophylactic antibiotics but my plastic surgeon is amazing so I’ve listened. I took and NEEDED flexeril every 8 hours, the Percocet I took half doses every 4-6 hours that first day. The worst pain of it all is truly the muscle spasms and cramps. If you have ever had a Charley horse in your leg in the middle of the night that shoots you out of bed to stomp around your bedroom like a one legged pirate – you feel that but in your pectoral muscles randomly. Also you have four drains – 2 on each side on your body sticking out to little bulbs to drain fluids. They are annoying. But, it’s all about a good attitude. So, post op day 1 – this was me!
I walked about a half a mile that morning, and another half that night.
I don’t remember much else from that day other than my good friend, Kacee came over and hung out with my family and I and watched the Florida vs Georgia baseball game! Baseball is always important. Also, if you have a loving support system and a bad ass nurse as a husband it makes the whole emptying drain situation much better if you aren’t yet ready to see yourself yet.
POST OP DAY 2 (5/4/19)
By day two I was still in pain yes but definitely manageable with the pain meds. I was already trying to decrease how often I was using the half tablets of Percocet at this time, and Justin was giving me extra Tylenol to help adjust for that. On this day we walked a whole mile in the morning, and in the evening I took my first car ride. On my post about things to buy I’ll add more about the seatbelt cushion my sister got – it helped a lot. But, car rides hurt BADLY. Not just your chest but every time the drains move it pulls a little and it’s just overall a sucky experience. But, worth it for sure if you want out of the house.
My family and I went to a local park where I walked a second mile that evening and then got ice cream, one of my most favorite things in the WORLD.
(I will post links to that awesome athletic shirt with the drain holders!)
The other big event of this day was trying to wash my hair … I have a mane of hair. That is not an exaggeration. My sister literally got into the shower while I flipped my head over into it and washed it for me.. she was soaked but I love her ! 😂
POST OP DAY 3 (5/5/19)
So, I may have been a tiny bit sore from the big post op day 2 and had to take it a little easy this day! Haha. Unfortunately my dad and sister had to head home to be back to work this morning. But I was lucky to still have Justin and my mom! I walked a mile and then watched / slept / watched the Gator baseball lose to freaking Georgia in a doubleheader all day Sunday! Here is Mandi and I before she had to head out, and a cool picture mom took of me on the railroad tracks near my house during our walk.
POST OP DAY 4 (5/6/19)
Well, I walked a mile of course! I also got the pleasure of getting my first two drains pulled out at the plastic surgery office! If you are going through this and are about to have this part done – it feels like a lot of pressure (the pulling) but it honestly doesn’t HURT that bad. It’s so much better having them out, just suck it up. You’ll be so happy to have half of them gone! After the office visit Justin, mom, and I went to Chili’s for lunch! Then over to Kohl’s to switch out some sports bras that zip up the front (and I ended up buying some pillows for my front porch swing cause when in Rome …)
We convinced mom that we would be okay so she headed back to Punta Gorda Monday afternoon. Starting this evening, I was down to taking flexeril and Tylenol around the clock and half a Percocet before bed.
POST OP DAY 5 (5/7/19)
I finally got to speak to my surgeon who said all the breast tissue has been looked at etc. I was negative in all lymph-nodes for cancer as well as having great margins majority of places around the tumor. My tumor overall ended up being 1.5 cm and there were 2 satellite spots right outside the tumor < 1 mm in size. Other then that no other cancer was found in any of the other tissue!!!
Justin and I went and saw Avengers in IMAX ! I loved it, he swears the last one was better than this one. It felt so good to go on a “date”.
Tip: if you or a loved one go through this my sister found it really helpful to roll up bathroom towels and place one under each arm while I was sitting on the couch or even when laying in bed.
This was the first day I was able to not have those towels and use regular arm rest height chairs without pain. (I had 3 lymph-nodes removed with my breasts so this may be a result of that I am not sure)
I of course walked a mile that day with Justin, and two of my friends came over to hangout a little bit that night and watch tv etc. 😊
POST OP DAY 6 (5/8/19)
No more narcs! Starting day 6 I had switched over to using only meloxicam once a day along with flexeril and Tylenol. Sleeping that first night was rough, I don’t ever sleep on my back so that in itself is weird but without the Percocet to make me fall asleep it was a long night. But you get use to it!
I started an awesome 90 day devotional called praying through cancer that a friend sent me 💖 It has been a blessing each day since. I also got completely hooked on the Netflix show All American. I am a sucker for any tv series about sports and helping at risk youth.
I walked a mile that morning and another that evening and Marissa came over – she then too had to watch All American and she had the job of washing my hair!
My husband has been so amazing through all of this I can’t even put it into words and he puts my hair up for me every morning in a pony tail, which is not easy! I was excited to get to share some of the hair pain with someone who was more use to it!!
POST OP DAY 7 (5/9/19)
I decided enough was enough of “not being productive and got out my MBA stuff to finish up the final paper for my first class. That took basically all day and I am happy to say I am one class closer to having a MBA in healthcare management.
Also that day I got a phone call about getting a STAT ECHO done. Mind you, thus far I had no follow up from any oncology – I had only spoke to my surgeons. Since I’m a clinical pharmacist I am very aware an ECHO is something you would need to do prior to your first chemo treatment. I am also aware you can’t do an ECHO when you have just had a double mastectomy and have drains. I told them to call me back in a week and reached out to my chemo oncologist about the game plan – asking if they have results from ordering something called an oncoptype (used in stage 1/2 hormone positive breast cancer to give you recurrence risks and if additional chemo benefits the patient). I figured the result of this test must have pushed me needing chemo.
To my disbelief this was never ordered because it was felt it “was not indicated” and I would “need chemo no matter what”. I still don’t know the game plan and what treatment is warranted for me but I do know I am a HUGE patient advocate as a pharmacist every single day at work – I was very frustrated that this test was never ordered and that I was being instructed via the phone that I would be doing chemo without discussions of risk vs benefit etc. or anything with my husband and I in person.
Justin took us to outback for date night. I talked almost the whole time about patient advocacy. I’m still heated about it.
I’ll finish post op week one with this.
We are all welcome to our beliefs and opinions about treatment plans not only for cancer but for all diseases. As a patient or as the loved one caring for a patient you ABSOLUTELY have the right to understanding all treatment options and discussing all risks. If a doctor won’t have that conversation with you, find someone else. I had a different doctor order that oncotype test for me because for my own piece of mind I want that information. It’s your body, you know what is best for you.
(Except if you believe you shouldn’t vaccinate your kids – please keep reading and come to the conclusion that you absolutely should vaccinate your kids. I’m talking risk vs benefit of juggling treatment options – not of if you should or should not allow your kid to have the measles or polio.)
Until next time,
Sami
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