Love & war in recovery.

Week 13 A.D.

I guess I hadn’t considered recovery from surgery to be part of the cancer fight. Treatment always came to mind as the fight-part. The surgery itself, chemo, radiation, whatever. But I’ve been fighting for my wellness every single day of recovery.

Friday the 13th started off with a notification in MyChart. It was my genomic test. I was terrified to open it, but there was also no way I was waiting until the 24th when I see my Oncologist. I don’t really know what I’m reading, but with the help of Google and ChatGPT, I think the gist is…it’s good news! Really good news. But I didn’t want to get too excited and risk getting disappointed.

Recurrence Score: 2

Distant Recurrence Risk at 10 Yrs: 4%

Chemotherapy Benefit: No apparent benefit

Ok. These are my likely outcomes if I’m on the hormone therapy. So, probably no chemo? But what about radiation? I guess I wait till my appointment with the surgeon this week to ask about that. And what the heck was the chart in the lower left corner? The sliding scale that represents my chances of recurrence at each ten year interval. I see 2% at 5 years, 4% at 10 years—then what looks like 10% at 20 years and 15% at 30 years.

I had the realization that I’m never going to be able to fully run away from this. I have cancer. I’ll always have a risk of recurrence. There is no cure. Despite the fact that my report is good or probably even great news, the pit in my stomach was still there. If I’m privileged to live to seventy three (since neither of my parents did), my chance of this coming back somewhere in my body is 10-15%. It made me feel sick. I began to wonder if this is what survivorship feels like. Having to always wonder and worry if and when recurrence will happen. I felt myself moving from one anxiety to a new anxiety.

I had a call already scheduled with my therapist for that morning. I honestly felt nauseous. I wasn’t sure if it was my thoughts around the results or if it was all the meds I had just taken. I had just swallowed like eight pills at once on an empty stomach. I texted Zach, asking for him to bring me an applesauce packet to get something in my stomach before the call.

My therapist jumped right into the surgery, asking about my anxiety going into it. I fessed up to breaking the pre-op rules and sipping little bits of water to help calm my anxiety calm down. But that I did it, and felt a sense of pride in myself for making it through that. What’s funny though is that on our call, I mostly shared how Zach has literally been the best nurse ever. Not only draining my drains 3 times a day, getting me comfortable, on point with my med schedule, helping me move about, shower, moisturize and dress, doing literally everything for the kids and the house, and tucking me in my chair every night. I was in tears explaining this gratitude I was holding onto, realizing I really needed to share that gratitude with him. I don’t know how exactly how one accurately and fully expresses gratitude for caregiving like this.

It was a beautiful day and I desperately needed more vitamin D. The golden Florida tan I got on my face only days after diagnosis has officially faded, so a little sun wouldn’t hurt either—no worries, I do use SPF moisturizer. As soon as Zach and Emma got home from getting her driver permit, we went on my second short walk outside, but this time I donned my pjs and bathrobe. I didn’t care what I looked like, I’m dealing with cancer over here!

Even with only two drainage tubes in, it was still pretty painful to walk. Until now, I never considered how much I use my arms and rib muscles to walk. And oof, the boob bounceage! Again, we only walked about halfway down the street and back. That’s all my upper body could take, even holding onto Zach’s arm. Only three more days to get the tubes out!

The weekend was low key. I was still in my head about the results, what treatment is next up for me, and what survivorship is going to mean and feel like. Valentine’s Day was uneventful given my condition, plus Zach had to take Emma to her softball club banquet that night. I was feeling all sorts of anxious feels I didn’t want to feel, so I was incredibly grateful to be visited by two wonderful friends from work. One, a survivor, who shared her story with me. From that conversation, I began to work my way out of my funk. I can’t turn off my anxiety, but like my therapist and I talked about—I should acknowledge my anxiety, give it space and grace, but I don’t have to sit with it day in and day out at full volume. I need practice turning the volume down so I can also receive positive thoughts. Just like I began to do only days before surgery.

Monday morning, bright and early, I went to the plastic surgeon’s office a nervous wreck. I was part excited to get my drain tubes out and also dreading the discomfort of getting the stitches removed. I kept feeling the memory of the burn in my ribs. I got nauseous in the car and began to feel faint in the lobby, so I snatched a couple Life Saver mints from the scheduler’s desk to calm my stomach (a little trick my sis had reminded me of only a week or so ago).

When the nurse practitioner came in, she went right to it. My drain log looked good and my fluids had decreased enough. The tubes were coming out today! I was a little concerned that I was still seated, only tilted back in the exam chair this time rather than lying back, like with the first tube removal. I braced myself for the sharp pain my memory recalled, but then…nothing.

Maybe the additional week allowed the stitch holes to heal more?

“You know the drill. Deep breath in and blow out the candles,” she said. Then the tube was out. I felt a little sting from the alcohol pad, followed by a medium-sized bandage. It wasn’t bad at all.

“These can come off in two days. It’s a regular bandage, not waterproof. But you’re good to shower in them,” she explained, right before my plastic surgeon walked in.

“Wow, you look great! How are you feeling?” he asked, before realizing the door was wide open and my chest was fully exposed. “Oh shoot, I’m sorry about that.”

“You’re fine. It’s not like anyone’s going to see anything,” I responded almost immediately.

It’s strange how my breasts have already lost their real breast clout to me. It’s as if, because I don’t have nipples, I’m already not qualifying them as actual breasts, worthy of privacy. I flagged that in my brain for the future—noted for the future so that I don’t create a habit of that kind of thinking. It can’t be a healthy perspective.

The second tube came out just like the first one. Once it was all over I joked that wearing cream colored pants might have been a bad choice, as the nurse wiped off a bit of fluid that dripped. Apparently, my breasts still have a little swelling and bruising, but otherwise all is good. Next visit in one month.

It was literally the second the nurse and surgeon walked out of the room, I started sobbing.

Relief. The relief was immediate. And my sense of humanity was coming back. I was almost a whole person again and didn’t feel like a science experiment. The tubes I had been feeling under my collarbones were gone. For the record, the tubes did indeed actually go all the from each lower rib, up the side of the boobs, resting along the lower edges of my collarbone. That pain, this lumps, were finally gone. My upper chest and underarms already felt better. The ribs felt better. Not 100%, but any percent was a vast improvement from 0. I even walked all the way to the end of my street and back that night.

It was a wonderful feeling while it lasted. The next 48 hours were tough.

I started to wean off the pain medication while tube site soreness had set in, but that was nothing compared to the nerve pain and neuropathy. I think it was probably there this whole time, but the pain meds masked it and all of the discomfort was overruled by the pain from the drainage tubes and mostly drowned out by the meds I was on. The skin atop the new boobs felt like it was on fire. I’d get the occasional zap and needle poke feeling too, but it’s the sensation of a blistering sunburn or a burn from a hot pan across my chest that sucks the most.

The neuropathy is mild, but hits me at night. It comes in the form of restless legs and arms. My hands take turns feeling like they’re about to fall asleep. My right side, where the lymph nodes came out, feels it more than the left. I didn’t sleep for more than thirty minutes on Tuesday night. Zach’s snoring didn’t help, it only made me grumpier.

I went to my post-op appointment with my breast surgeon on Wednesday morning. I wasn’t nervous for this one. Probably because I was too tired. At least I was able to squeeze in a nap in the car.

“Oof, damn speed bump,” I mumbled as Zach drove over the first one entering the parking lot.

“Do you remember saying ‘Just fucking go!’ after your surgery each time I drove over these to leave?” he asked.

I giggled, “Vaguely.”

The breast surgeon walked into the office where I was waiting in my purple kimono shirt. She wore her pink sparkly clogs again.

“Well you look great! And your results were amazing,” she beamed. “Are you happy with the reconstruction?”

“Yes, you both did a great job. Even getting all the accessory breast tissue on the side,” I responded. “So…what about radiation?”

“Nope. And no more mammograms,” she replied.

Big exhale.

“This is why you chose this treatment route. Now you only have to see me annually. There’s really no breast tissue left in there, so we’ll do a physical exam when you’re here. If at any time we feel something we’re curious about, we’ll order a CT scan,” she said.

I asked about the nerve pain and neuropathy. I was bummed to hear that it’s normal, considering all the nerves were severed. She reminded me that surgery was only a few weeks ago and that my body is still healing—and the nerves lag behind. What sucks is that there is a possibility that it may not all go away. (Cue the Google search for post-mastectomy pain syndrome or PMPS)

“It’s a great post-op appointment when your breast surgeon tells you she doesn’t need to see you for another year.” She gave me another hug before smiling and saying, “You’re gonna do great. You got this early.”

When we got home, Zach suggested I do the new exercises the surgeon assigned to me.

“Are you fucking kidding me?!” I gasped after he explained them to me.

I had been doing my stretches, three times a day as assigned, since surgery. But these new ones. These new ones seemed impossible. I was in tears after five reps of my first front, full arm raises. My arms felt like they were tearing off at the arm pits. Tears were streaming by the time my hands had to go behind my head as I did five slow, partial wing flap motions. A full sob was going as my palms were flat against the walls and my body leaned into the corner of our front entryway. Recovery hasn’t been easy so far and these new stretches were another example that I still have a long way to go.

I got in a long nap after that first stressful stretch. To boost my spirits, I had Jillian walk up and back our entire street. I was slow and winded, but I made it and didn’t even have to grab for her arm. When we got back inside, I had to do the stretches again. I cried through it too. I had already pre-warned Jillian to make sure she wasn’t worried.

By evening, my last stretch of the day, I had managed to breathe through the pain. And thanks to noise-cancelling AirPods, I slept a full night. If recovery isn’t going to be easy, I just need to get scrappier.