Ok so I warned you in my last post that post and this one would be TMI. If you read my last post, you are probably thinking – yeah, she wasn’t kidding. Well I am not kidding with this post either. If my last post was TMI, then this post is WTMPO – Way Too Much Personal Information, but there is no way to share this experience without WTMPO.
What on earth is necrosis? I am guessing that most people, aside from medical professionals, have no idea. I know I used to have no idea what it was and part of me wishes that were still true. Necrosis is essentially when tissue dies. Typically, from a loss of blood supply.
The first time I ever heard the term – Necrosis – was during a pre-surgery obligatory disclaimer conversation with my surgeons. Since my mastectomy required two surgeons, I had this conversation twice. Each quickly ran through the litany of possible complications. Followed by the assurance they would do everything within their power to prevent said complications.
Since I chose a bilateral nipple sparing mastectomy my chances of necrosis at the nipple area were heighten. In part because I had recently had a lumpectomy with an incision around my areola. And in part because my breast surgeon was removing all of the breast tissue behind the nipples and only preserving a thin layer of skin.
I was told by my breast surgeon that she had never had a patient with necrosis. Still, she warned me, the more petite you are, the greater the risk. She then jokingly told me to feel free to gain as much weight as possible over the holidays in preparation for my forthcoming mastectomy in January. I laughed and responded – Chances are if I did that, I would gain weight everywhere but my chest.
My disclaimer conversation with my plastic surgeon went in a similar fashion, but without the joking. He was much more poised and serious. My impression from these conversations was that, even though necrosis (and a whole long list of complications were possible), they were highly unlikely. The surgeons were just covering their bases. I thought wrong.
Week two post-mastectomy brought follow-up visits with both surgeons. That is where I began asking the question – is this normal? At the start of the week, both nipples and areolas were completely scabbed over post-mastectomy.
On Monday, when I asked my plastic surgeon about the likelihood of my nipples surviving, he told me it was too early to decide. On Tuesday, my usually upbeat breast surgeon had a very serious conversation with me. She was very blunt and to the point. My nipples might not survive but look on the bright side when we get the pathology report you should be cancer free.
What?! Hold on here. This is not what I signed up for. I was banking on going through this ordeal with my breasts completely intact and hidden scars. If I had wanted Barbie Boobs, I would have opted to not spare the nipples.
I asked when I would know if I my nipples were lost. She said that my plastic surgeon would make that decision. I suddenly knew why she had never had a patient with necrosis – it wasn’t her call.
My conversation on Tuesday with my breast surgeon left me incredibly discouraged. Wednesday I decided to call her and ask a follow-up – Was there anything I could do to help prevent necrosis? My surgeon was back to her bubbly self and recommended I apply bacitracin to both nipples daily. I felt encouraged by her comment and dutifully set about slathering on the bacitracin.
Necrosis conversations aside, that week did bring some good news. My drainage from my drains finally reached an acceptable amount to consider removal. Finally, something good! Let’s keep this momentum. I was so eager to have my drains removed and be done with that. I scheduled an appointment for Thursday afternoon with my plastic surgeon, just four days after our last Monday visit.
I remember sitting eagerly in my black robe on the exam table. When my surgeon entered the room, he introduced a young woman whom he said was considering plastic surgery. He asked if I was ok with her presence. I agreed. We then discussed my drainage records and he agreed we could remove them. He had me lie back on the table to take a look.
When I opened my robe he immediately focused upon my right nipple. That was the moment he called it – necrosis. I am sure that poor woman shadowing him got quite the introduction to Plastic Surgery. What made him finally call it? In four short days my skin had gone from scabs to black. Lifeless leathery charred black.
He told me he needed to determine how deep the necrosis went. With his gloved index finger and minimal effort he dug into my flesh separating the necrosis from the healthy tissue next to it. The good news – it was just skin deep; the underlying muscle was not damaged. He applied bacitracin and bandaged my fresh new wound.
He sat back down to explain he needed to remove the necrosis to prevent it from spreading or causing an infection. He instructed me to not touch or remove my bandage. He would remove the bandage in surgery.
Another surgery? Ok, I can handle another surgery in a week or two. But when my husband asked when we would schedule the surgery the response was – tomorrow. What? That is really sudden. Then the plastic surgeon stepped out to ask his staff to find an available OR for the following day.
When he returned we focused on removing the drains. The plastic surgeon cut the sutures holding each drain in place on either side of my chest. He then instructed me to take a deep breath and exhale. As I exhaled, he pulled. And pulled. And pulled. Like clowns in a clown-mobile, the tubing just kept coming. How much was in there anyway?! It was a strange and painful sensation. Then we repeated the process on the other side. I realized then that my drains had been coiled around each expander in either breast. Never had I imagined there was so much tubing inside my chest.
When he was done removing the drains, he instructed me to wait in the lobby for a surgery location and time the next day. He also instructed me to stop taking all medications, pain killers included, until after the surgery. Ideally, I would have ceased taking ibuprofen for two weeks prior, but in this instance, we would have to settle for 24 hours.
Walking into the lobby I was greeted by my friend who had driven me. She was anxious to hear if my drains had been removed, eager to celebrate with me. I sat down and told her we needed to wait. In as few words as possible I explained they were scheduling a surgery for the next day.
As I sat there the disappointment sank in. I wanted to cry. This was not what I had expected. What happened to “I have never had a patient with necrosis?” Was I really the first? My hopes of perfectly reconstructed breasts were dashed. I sat in silence not wanting to talk about it. Trying not to cry. Suddenly very aware of the lobby full of other patients.
My thoughts were interrupted by my name being called. They had found an available OR the next day at 7:30pm. I was to arrive at 5:30pm. No food or liquids for 24 hours prior.
Did I mention my appointment had been that day at 4:30pm? As I glanced at the clock, I realized it was almost 5:30pm, my cutoff for food and liquids. Man I hate not eating. It makes me feel nauseous (I know everything makes me feel that way) and honestly a little hangry.
The next 24 hours were difficult. No food. No liquids. NO PAIN MEDS. I tried to keep myself distracted with movies. My husband took the day off work to be with me. I asked him not to eat or drink in front of me. I spent the majority of the day motionless in my recliner in an attempt to lessen the pain. It was rough.
We arrived at the hospital, checked in and sat in a completely empty waiting room. When the nurse called me back to pre-opp she told my husband to come on back too. As she was getting me prepped, I commented on how quiet it was. She said the OR has to stay open 24/7 for emergencies, but scheduled surgeries ended at 5:00 pm.
As she reviewed my surgery history with me, I realized I was averaging one surgery a month for December, January & February. A pattern I did not want to continue. My husband commented that just a few months earlier this would have been a big deal, now it just felt like another day in the life. Great.
I was so relieved when she got an IV going. Finally, something in my system. I had a ripping headache from what I think was dehydration, because I started to perk up after some time had passed with the IV in place.
For every surgery I have had, the nurse has asked me to verify the procedure I was having done. When this nurse asked me that day, I said necrosis removal. She tilted her head slightly as she examined my records and said – “Your paperwork says nipple exploration?” We burst out laughing. Ok I guess that works too. The necrosis is at the nipple. Maybe that is the official term – “nipple exploration.” I think I will stick with necrosis removal.
I have to admit I felt terrible being a 7:30 pm surgery on a Friday night. Who wants to be in the OR on a Friday night, least of all me? Some things you just can’t help; it needed to be done. My husband told me not to feel bad. It’s their job, but I knew my surgeon had a family with two young children. Who wouldn’t rather be home with their family on a Friday night?
My surgery went well. I felt the best I had felt since my mastectomy. Thank God for those hospital strength pain meds in surgery! Of course, after 24 hours without any pain meds, anything was an improvement. That Friday night was probably my best night’s sleep since my mastectomy. The meds continued their magic on through Saturday as well. My silver lining – I got a much needed and appreciated break from the worst pain of my life.
As my recovery progressed, I must admit I really struggled with the loss of my nipple. I had had such high hopes for my reconstruction. A mastectomy is traumatic enough. There is real loss, but in my mind the idea of keeping both my nipples had been a glimmer of hope in an otherwise bleak journey.
There were many nights when I felt the sting of this loss. When I couldn’t hold back the tears. When I questioned – why? Wasn’t the mastectomy enough loss? Why this too? The loss of my nipple was a blow I grappled with repeatedly.