Mastectomy: How did it go?

A lot of folks have been asking me questions about my bilateral mastectomy surgery. So let’s talk about it.

What I had:

Nipple sparing bilateral mastectomy with immediate reconstruction and placement of expanders over the muscle.

My breasts were cut underneath and all of the breast tissue was removed on both sides. On my “cancer side” there was noticeably more “stuff” removed, and there was an additional incision in my armpit where four lymph nodes were removed and probably more tissue since that’s where my tumor had been.

The sentinel node was quite large and looked “concerning” to my breast surgeon (meaning, she thought it might contain cancer,) so she removed the next set of nodes. “Sentinel node” is the node that the breast drains to first. This is determined during surgery using a special dye. I am not a breast surgeon so if you are left scratching your head, maybe do a little Google research.

There was a bit of drama over the sentinel node issue. I came home from the hospital thinking it contained cancer. I was a mess. Eventually I got the news that it did NOT contain cancer, it had NEVER contained cancer (as far as anyone could tell) and I had a complete pathological response to chemo.

When the breast surgeon removed the breast tissue, all kinds of other cauterizing was done to seal the parts of my body that were left exposed by removing the breast tissue, (you can Google the procedure, it’s intense,) my plastic surgeon placed expanders under my skin but over the muscle. Some folks have expanders placed under the muscle and it’s my understanding that this is much more painful. It’s also a call that the doctors have to make during the surgery sometimes. Drains were placed to drain out the fluid that my body wanted to fill up these new empty skin sacs with. There are puncture wounds in my sides from the four drains, two on each side.

What was it like in the hospital:

I was a wreck the entire time in the hospital. I have had surgery before and I had an idea in my head of how it would go.

It did not go anything like I expected. Expectations not meeting my experience made me an anxious mess.

I arrived at the hospital with my mask on (pro tip: don’t get cancer during a global pandemic) with my husband. I was called back to a “bay” (a bed with a curtain) ALONE and told to undress and put all of my belongings in a bag. I felt like I was getting strip-searched for prison. My heart began to pound and tears began to run down my cheeks, despite my best and painful efforts to hold them in.

I tried to compose myself alone in my bay. I listened as the nurses and aides spoke to the people around me who were there to have elective surgeries. They discussed their procedures. Hip replacements. Knee replacements. I was the youngest person there by at least thirty years.

After a disturbingly long period of time my husband was allowed back and he held my hand while I waited. They asked me my name and date of birth about sixty three times and the nature of my procedure. My voice cracked through sobs every time I had to answer “bilateral mastectomy.”

It did not feel real. How could I, the skinny ballerina-band-nerd with small breasts, be having a bilateral mastectomy? Tears were flowing so hard and fast that I could taste the saltiness when they sloppily dripped into my mouth. I wondered if it was possible to ingest enough of my own tears to break the rule of “no drinking” two hours prior to surgery.

The last thing I remember is getting and IV and they must have pushed some meds to “calm” me down right away.

I woke up high, sobbing, and confused. “Is it over?” I asked, as if I had awoken from a concussion like Dorothy after her journey to see the Wizard. Unlike Dorothy, however, it had not all been a bad dream. I had cancer and I had a bilateral mastectomy.

I immediately demanded to see my chest. I saw two round mounds with nipples and some rippled skin. It looked pretty good all things considered.

I cried again when they made my husband leave the hospital and I was left alone. A nurse gave me some Ativan to calm me down, I took a quick nap, and decided it was time to TikTok all night high on pain meds. I eschewed my hospital gown and pranced around in my underwear and velcro mastectomy bra. I was happy and high until the sentinel node drama.

I was in pain, but I was able to walk, move my arms with a limited range of motion, and I could even touch my hair and put it in a pony tail. Being awake wasn’t too bad at all. Standing was great. In fact, I felt considerably less pain than when I had abdominal surgery two year ago. Having my breast tissue removed was less painful to the overall working structure of my body than healing from an incision that ran from just under my breasts to my navel.

Sitting was challenging. I could not lean on my arms at all so I mostly just laid on my back. Unfortunately laying down on my back was also uncomfortable. The weight of the expanders on my hollowed out chest was painful. Opioids helped. I kicked the hard drugs two days after being home and switched to Tylenol. I woke up in pain one or two nights and took the opioids again in the middle of the night.

What it was like week one:

I cocooned myself in a pregnancy pillow (Snoogle for the win) with a mastectomy pillow like a shelf on top to rest my arms and binge watched three seasons of the new Queer Eye. (Yassss Kween!)

I walked at least a mile every day, but I could not hold the dog’s leash. His jerky motions were too painful for my arms and chest wall. I slept a lot. My right side, the side which was preventative and did not contain cancer, was far less painful. The left side, or “cancer side” hurt much more. The expanders rubbed (and are still rubbing as I write this) against whatever is left behind in my armpit. The remaining skin is numb in most places where tissue was removed because the nerves connecting the tissue to the skin were severed, but the internal parts of my body that are rubbed by the expanders caused a lot of pain. Expanders feel like Tupperware underneath the skin.

I have had a few people approach me who are BRCA positive and ask about whether I would do a preventative mastectomy. I would have done anything to avoid a cancer diagnosis and IV chemo. A mastectomy is hard, but it is much harder on my cancer side. When surgeons are cutting tissue out in an emergency to save your life they can’t be as patient or delicate as they would be if the surgery is preventative. They also have to remove lymph nodes, and as any breast cancer survivor will tell you, this has a lifetime of implications. I could go on and on about the differences but that is a post for another day. Suffice to say that having had a cancer tumor in my breast tissue made the recovery on “the cancer side” harder.

My plastic surgeon took out three drains on day six post mastectomy. The drains are really annoying so I was excited. It felt pretty weird getting them removed since they were stitched to my skin. My husband was horrified at how much drain tubing was actually under my skin. It was not really painful, but it was a weird feeling.

Our kids stayed with my parents so we could isolate from any potential covid exposure from the hospital. Thank heavens, because we could not have managed at home with the kids. I could not lift the baby for over three weeks and I was useless with household chores.

TikTok-ing the day after I was discharged

What it was like week two:

I was still very tired and had a hard time feeling like myself because of the discomfort of the expanders on my raw chest, loss of sleep from the same, and the last drain I was dragging around everywhere.

I got the call about pCR and that changed my mental state dramatically. The kids came home halfway through week two and we were happy. I continued to walk a mile or two each day. At the end of the week my last drain came out. I met with my oncologist for the last time (she is retiring.) I met with my breast surgeon for the last time (she is leaving.)

I focused on healing. I showered at the slightest hint of perspiration to avoid infection. I found out that my cancer treatment was over and I was allowed to move on. I moved into my seventh month of surviving cancer.

What it was like week three:

We went back to the insane work from home life we had been living since the second week of March. Poor Terry had to do just about everything around the house because it was still painful for me to use my arms. Motions like cutting vegetables, leaning over to load a dishwasher, fold laundry larger than the baby’s, and washing dishes were too much for me. I could load the washing machine, but not unload it, or carry a laundry basket. I could not drive a car. He did all of these things while we worked from home. My folks and friends took the kids for a few days so we could continue to lawyer.

I was still waking up most nights in pain and taking ibuprofen. I walked every day at least one to two miles. I held Ozzy’s leash for short periods of time. I pushed the double stroller.

I missed our family trip to Sea Isle City, New Jersey for the first time since my cousin Marty died in 2005. I struggled with the gravity of it in my heart, and tried not to think about how cancer ruined another family vacation for our household. The kids could use a vacation after what they have been through this year. Terry and I could use a break that doesn't involve a hospital stay or chemo.

What it was like week four:

On Monday we went back to the office. I was well caffeinated. I sat in a quiet office where I could focus on my clients. I ate lunch without retrieving ketchup or thirty-four snacks.

I felt alive again.

This was really the last week that I was not supposed to lift the baby. Aunt Cathy stayed with us for a whole week, cared for our kids, and sang post-war songs while she rocked our baby. I still could not run, but I walked every day.

The holiday weekend ended, (Saint) Cathy returned to her home after hosting a houseful of guests for two weeks at the Shore and helping out Terry and I (mostly Terry,) and we attempted to settle back into a routine. To the extent one can “get back” to a routine in a global pandemic.

I tried to put the baby to bed on Sunday night and she was in a foul mood. None of my usual tricks were working with her. I picked her up and she bucked her body against me. I winced in pain from the impact on my chest wall behind my reconstructed breasts.

I decided to lay down with her in my bed. I always laid with my older kids when they were babies to nurse them. They would snuggle into me and fall asleep in my arms. My sweet third baby did not experience the bonds from these moments because the chemotherapy drugs that ran through my body would have poisoned her.

I laid down on my side with the inside of my elbow cradling her head. Fresh from a bath, she smelled perfect. I held her facing me and tried to soothe her. Her face turned red and she sobbed harder. I tried to sing. Her sobbing persisted. Desperate, I grabbed my reconstructed breast, finally empty of cancer and chemotherapy, and considered the most obvious and natural action I could think of, jamming it in her mouth.

But I felt the hard, rubbery surface under the skin of my numb nipple, and realized that was not going to help either of us. She choked on her tears. I choked back my own.

Until I couldn’t any more.

Every mother feels inadequate at some point. The outward demands of society combined with the inward urge to create a loving and nurturing relationship with our children overwhelm us. The inability to do the most maternal function in the animal kingdom is the side effect of breast cancer that continues to sting the most.

What it’s like now:

I feel good. I have started to lift my eight month old Penny Lane on a regular basis again. She reaches for me and I kiss her chubby baby cheeks and I almost feel whole.

I awoke in the middle of the night a few days ago. Instinct kicked in, and my body tried to roll to my stomach, my preferred sleeping position. Suddenly I felt the hard Tupperware-like expanders rubbing on my healing chest wall.

I remembered.

My breasts are gone. I had cancer.

I tried to find a comfortable position and soothe my mind.

The mastectomy was the easy part.

Penny Lane 8 months old