Just the Next Hard Thing: My Mastectomy Recovery Story
In January 2017 I went in for a routine mammogram. This was the year I planned to get all those nagging appointments taken care of, so January was the beginning of a new year and me getting up-to-date with all the things. So the next hard thing was now complete, check!
Then I got a call, they wanted me to have an ultrasound, ooooh-kayyyyy, oh no.
Then a call to schedule a biopsy, oh crap.
Then an MRI.
Then an MRI guided core needle biopsy, holy hell!
In February they called with the diagnosis. It was actually February 14, happy valentine’s day, yeah thanks!
Invasive Ductal Carcinoma. Stage 2B, ER+ PR+, Her2 negative. I was soon to learn what all these words and symbols meant.
March and April were more scans and tests. Then surgery to install a port. A little gizmo placed in my chest, with a flexible tube running up under my collar bone and stitched into a vein in my neck that would help me receive chemo and save the veins in my arms.
Chemo started the next day. Sixteen cycles over five months. Chemo is a stacking debuff if you are a gamer and understand that concept. You get hit with the first one, and start feeling sick, weak, and tired, then the 2nd dose starts where the first left off. So not starting at feeling good, starting at feeling awful. Then each dose stacks, the 3rd and the 4th and… and the 14th and the 15th and the 16th. By the end, you are pretty sure you aren’t going to make it.
Five months of poison. How is my body still here?
Then new scans. My hair started growing back after chemo #4.
Those first 4 Chemos are a doozy. One cycle every other week for 8 weeks. Those were called AC, Adriamycin Cytoxan, the red devil. Its called that because the bag of IV medicine is bright red (I still can’t drink red fruit punch), and the side effects are awful. The chemo nurses even have to suit up with special gear and face coverings and shields so as not to allow even a drop to touch them. And here I am getting the whole bag. I mean seriously, after the 2nd dose I sat there bald, nauseous and told my oncologist, I don’t think I can take #3. He said I could, so I did.
Then after dose #4 of AC, I moved on to Taxol. These were weekly cycles for 12 weeks. I felt a little better during this new medication. Not quite as nauseous and saw a little hair sprouting back in. After chemo is finished I had one month to get stronger and ready for what was next.
That was the mastectomy in September.
I tell you all of that not for sympathy but for context. Because by the time I walked into that surgery center on that Friday morning in September, I had already been doing the next hard thing for eight months straight. That’s what cancer treatment is. There isn’t one easy step in the whole journey. You don’t get a week off, a gentle transition, a moment where someone says okay the hard part is over now. You just do the next hard thing. And then the next one. And then the next.
So yes I was nervous walking in. You don’t look forward to surgery. But I was also just resigned to it in the way you get resigned to things after eight months of hard things. My sister was there. My husband was there. My sister had been a nurse and had walked me through every single step of treatment, helping me understand what was happening, overseeing my care alongside my doctors. She knew what questions to ask. I knew I was in good hands.
I just had to do this next hard thing.
My Mastectomy Recovery Story: Left Boob
Here is what greeted me at the surgery center check-in desk.
The paperwork said I was having a mastectomy on my right breast, um, no.
No, I had cancer in my left breast. I was having a mastectomy on my left breast. Had been the whole time. So before I could get my IV, before I could get anything to relax and calm down, before any of it, I spent my pre-surgery time making sure every single piece of paperwork in that building, and every doctor and nurse I spoke to understood, that my surgery was on my left side, Left boob. Just the left one. The surgeon drew an arrow pointing downwards just above my left breast with a sharpie. So reassuring.
It became my battle cry for the day.
To the left, to the left
To the left, to the left
Beyoncé knew
The charge nurse sat down with me, somber and apologetic, and assured me they would be doing my left breast. The plastic surgeon’s paperwork said bilateral, which means a double mastectomy, reconstruction on both sides. What? They had to get him to correct it before I could sign anything. I watched the nurses whisper with him across the room. Much discussion, then I saw her give me a small wink when it was done.
My breast surgeon came in next, she was the doctor performing the LEFT mastectomy, I didn’t want her unhappy with me in any way. I told her everything was great and I was ready and let’s just make sure it’s my left boob and do an awesome job. And off I went.
The last thing I remember is the mask coming down over my face.
Night night.
Coming Home
Surgery started at 11am. I was in the car by 2pm.
Three hours. That’s a mastectomy, port removal and expander installed at an outpatient surgery center. I woke up in recovery, barely awake, and then somehow I had my clothes on, thank you sister, and hubby was pulling the car around.
On the way home I got sick. We pulled over. Nothing more fun than having fresh stitches all over your chest and the old heave ho into the grass. Got home and got sick again. The anesthesia does that. My sister and husband helped me walk inside. Hubby’s parents were already there, having come up from S. Florida because at that point everyone thought a hurricane was going to hit their house, so they came to our house. So I came home from surgery to a full house.
No quiet room to recover in. No privacy. Just me on the recliner with the whole gang, pain meds every few hours, trying not to move the wrong way, watching weather reports.
My sister stayed as long as she could. But her family needed her. The hurricane was coming and she had her own house to think about. She didn’t want to leave me and I told her she had gotten me through the hardest part and that I’d be fine. I meant it. She had been my nurse, my advocate, my person through every terrible step of that year. Her family was her priority right now.
We gently hugged and she left.
I sat in my recliner with stiches on my right upper chest from having the port removed, and stitches across the left and two drain tubes hanging out from under my arm and waited for whatever came next.
What the Drains Were Actually Like
I want to tell you about the drains because nobody really talks about this part.
After a mastectomy you come home with surgical drains. Tubes that go into your body and are wrapped around the newly installed expander that needs “fills” every other week that allow my skin to prepare for the implant surgery coming in December. The plastic surgeon takes over after the breast surgeon has finished the mastectomy. He installs the expander and drains. A thick and a thin drain. Both pulling fluid into a small bulb, about the size of a grenade, that hangs at the end. You have to empty the bulb and measure what comes out several times a day. You have to track it. When the output drops below a certain amount the drains can come out. (A story for another day).
To drain them properly you have to milk them. Starting at the top of the tube near where it enters your body, you pinch it off with your fingers and gently slide down toward the bulb, pushing the fluid along. We figured out using a pen and your thumb instead of just fingers was easier. You go slowly because if you’re not careful, you yank the tube and the tube is stitched into your body and yanking it hurts in a way that is hard to describe politely.
Hubby did this with me every couple of hours. Every single time.
We even were doing this in the dark during a hurricane.
The Hurricane
Hurricane Irma hit on Sunday September 10. My surgery had been Friday, September 8th.
The power went out around 3pm Sunday and didn’t come back until Tuesday. Two nights. Two full days. In Florida. In September.
If you have never been to Florida in September let me explain. It is not just hot. It is a physical thing. The air is thick with moisture. The heat doesn’t lift at night, it just gets slightly less terrible. You sweat sitting perfectly still. You sweat lying down. The humidity wraps around you like something you can’t take off. The photo at the top of this article was from that first night after the power went out.
👉 If you’re squeamish skip the next photo. If you’re about to go through this, it might help to see it.
Now add tight bandages and stitches and two drains and pain that you’re managing around the clock trying not to let it get ahead of the medication.
I sat on the couch in the dark with no shirt on because that was the only way to breathe. The pond behind our house was overflowing from the rain. It’s funny what you worry about during a storm. Sinkholes open in Florida after storms. Trees come down. You lie there in the dark listening to the wind and wondering what’s happening to your roof while you’re trying to time your next pain pill and your husband is getting ready to milk your drains again by flashlight.
The second night, at around 3:30 in the morning we decided to find out if the Waffle House was open.
It was.
Because refrigerators being off and food going bad, they only offered hash browns and waffles. We got an order of hash browns and a waffle and sat there in the air conditioning for as long as we reasonably could and it was one of the best meals I have ever eaten.
The Flat Tire
We got home. We slept a little. The next day we went outside and found a flat tire on Hubby’s car.
And that was it. That was the thing.
Not the diagnosis. Not the port surgery. Not sixteen cycles of chemo. Not the mastectomy with the wrong-side paperwork. Not throwing up on the side of the road. Not two nights sweating in the dark with surgical drains. Not the hurricane.
A flat tire.
I stood there looking at it and I started to cry. Not delicate tears. The real kind. The kind that had been building since January and had just been waiting for a flat tire to finally show up and give them permission.
Here is the thing, hubby had his hands full taking care of me all these months. He is brilliant with computers. He is patient and kind and he had milked my drains by flashlight during a hurricane without complaint. Automotive repair isn’t what either of us wanted to deal with in the aftermath of a hurricane. And I stood there crying because I was done, I was over the whole thing, I could not take one more thing to be worried about. Not one more thing.
He changed the tire.
And then he came inside and said let’s find a hotel with air conditioning and spend the night. My hero.
I could not pack the car fast enough. I even packed the cats. It was too hot for them too and I was not leaving them behind.
We found a room for a hundred dollars and it was worth every penny before we even walked in the door.
Hurricane Tax
We loaded the last of our things into the car, walked back into the house and noticed, the lights were on. What? The electricity had been restored, right then.
We stood there for a moment. The air conditioning clicked on inside the house. Everything was fine. OMG! We tried to cancel the hotel. No luck. We called our friends to see if anyone wanted a free night in a cool room. Everyone was fine. Nobody needed it.
So we stayed home, turned the air conditioning up, and chalked the hotel fee up to a hurricane tax. The cost of surviving a particularly difficult week.
I have thought about that word a lot since then. Hurricane tax. The thing you pay when life sends everything at once and you just have to get through it. The unexpected bill that arrives after the hard season. You don’t get to argue with it. You just pay it and move forward.
That week cost me a lot more than a hundred dollars. It cost me a year of hard things, a surgery, a week of pain in September Florida heat, a flat tire, and one really good cry in the driveway.
But I’m still here.
Still knitting. Still living. Still getting my mammograms.
In fact, since then, I get 2 mammograms, 4 chest x-rays, 2 ultrasounds, and 1 MRI EVERY YEAR for the past 9 years. So don’t put off the thing you think you hate to do, because you might just get to do it every 6 months for years to come.
Go Get Your Mammogram
I mean it. Stop putting it off.
I went in for a routine mammogram in January 2017. I wasn’t worried. I was just doing the thing you’re supposed to do. That mammogram is why I’m sitting here writing this. Caught early, treated aggressively, here to tell the story.
I know it’s easy to reschedule. I know it’s uncomfortable and inconvenient and easy to tell yourself you’ll do it next month. I know.
Go do it this month. Book it today if you can.
You want to be the person writing the ridiculous hurricane story from the other side. Trust me. The Waffle House hash browns taste so much better from over here.
P.S. Coming this September, just a few months from now, I’ll hit my 9th year in remission, the surgery and chemo took care of the cancer and I didn’t need radiation. Feels so good to have all that behind me. Go make your appointment.
Follow my journey and stories and see what it was like going back to visit my Grandma’s House after 50 years had gone by.
