Chapter 16: THE Surgery

I hope everyone was able to enjoy Mother’s Day weekend. It made me so happy to see my Nana spending time with more family since she is vaccinated. Hopefully the light at the end of this long tunnel is getting closer.

It’s been hard for me to pick up a book let alone write a blog post during the past couple of months. I was back in the hospital recently and just haven’t been feeling myself. I started going into Boston for reconstructive surgeries at the end of November and everything has been going well up until a couple of little hiccups recently. I have one more surgery this coming Friday and once I’m healed I’ll have to start treatment for the Vasculitis again. I’m trying really hard to push forward but I feel like my body is at it’s breaking point. Luckily my doctors think I am fine to go through with this upcoming surgery since it’s minor and then I will take a much needed hiatus from the hospital. Moving forward, my surgeon wants to do everything in small steps. I really trust his process and just have to be patient. If you would have told me in 2019 that I would still be dealing with this wound in 2021, I probably would have had a mental breakdown. On the bright side, I’ve made a ton of progress and my back already looks 10 times better than it did back in the fall when we started the process.

I was a little nervous to get to this part in my mom’s journals. There was a lot of guilt that came with being in my position. Some days it seemed like I had the easy way out because I would go under anesthesia and my family had to sit and wait and hope and pray, especially on this day. My mom took a leave from her new job, my dad was trying to work from my hospital room, my brother ended up moving down to Charlotte from NYC, and my sister was flying in a lot from NY. I knew they were scared and stressed and I can’t imagine being in their position.

At 7:41AM on February 14th, 2019, I was on the way into the OR not knowing when I would wake up again and not entirely confident surgery was going to go as planned. If the flap didn’t take, then I would lose my right latissimus muscle and still have a wound. The doctor also was not positive which vessels he would use to connect the lat once it was covering my wound. The goal was to use the artery in my left armpit and if the vessels were too small he would try a mammary gland and possibly have to use an artery from my calf as a sort of extension chord. I had just learned this information the night before so the thoughts were swirling in my head. Luckily as you’re being wheeled into the OR you get “happy juice” through the IV (aka versed) which eases your nerves.

At 6:37PM my doctor walked into the waiting room to tell my family he connected the flap to the artery in my armpit 4 times but after about ten minutes it would flatten and clot off. He told my family he would try one more time and if it didn’t work he would have to try for plan B. At 9:45PM I was finally rolled into the surgical ICU (SICU).

Three days later, I opened my eyes and saw my sister and then immediately looked under the covers at my left breast and calf and saw no extra incisions. She told me that plan A worked! I was still on the vent and couldn’t talk yet but I was so happy. For the last three days I was sedated laying on my right side with my arm hanging up in a sling attached to the ceiling and I wasn’t exactly stable. My white blood cell count, blood pressure and temp were all very high so they put me on antibiotics. My sister told me my face was so puffy that I looked like I was attacked by “tracker jackers” from the hunger games. Thank you Megan (lol).

This plastic surgeon was willing to do anything to make sure this flap took. I was to be bed ridden in the SICU for a whole 18 days. I was now in a tiny room with barely enough room for the nurse to move around and only a little window that I couldn’t even see out of. Those first few nights awake were really hard. I couldn’t move, couldn’t speak, and 18 days sounded like a lifetime.

When I first heard my mom talk about that moment in the waiting room when the doctor said he would try one more time, it almost didn’t sound true. My whole life I’ve been pretty uninterested in religion but I was raised Catholic. My mom is very religious and told me they all held hands in the waiting room and prayed for my artery to stay open. Twenty minutes later, the doctor came out and said it worked. Hearing about this moment reminded me of the power of prayer. I definitely believe I had a few angels looking out for me that day.

Chapter 15: Anniversary Effect

The month of February brings up a lot of memories. This year around the anniversary of the big surgery, I felt a shift in my energy. I was tired, numb, and anxious all at the same time and I didn’t realize why until my mom brought up that it’s been two years.  Although February was particularly draining, looking back on the events from this time two years ago reminds me to be grateful.

The days leading up to the big surgery on February 14th, 2019 were filled with family and friends from out of town, food, IVIG, PT, medical jargon I was still trying to grasp, and anticipation. I wasn’t tolerating the IVIG well and PT was crucial before surgery, since I would be bed ridden afterwards. The goal was to keep me moving and gain as much muscle as possible so when it was time for me to get out of bed again, I wouldn’t be as weak as I was in the previous months.

Gearing up for surgery was extremely emotional because I knew I was about to leave the MPCU. Saying goodbye to all the nurses was really hard. I had grown to love and trust them over the two and a half months I spent in the unit. They assured me they would visit me in the SICU and then ISCU (the step-down unit from the surgical ICU where I would go once I was stable enough).

My sister flew in from New York and spent the night with me on February 13th. I didn’t want the night to end because I was so nervous for surgery. I had gone to the OR 27 times before this and the fear stopped probably by the 7th or 8th time going under. I basically told myself there was nothing I could do and the only thing I really feared about going under was how nauseous I was going to be when I woke up, but this time was different. I knew everything was about to change. Meg and I hung out with Destiny and DeLois (my night NA’s), probably watched something on Netflix, and eventually fell asleep.

When I woke up for surgery around 5:30 the next morning, I realized my wound vac stopped working in the middle of the night. I woke up in a puddle of fluid that was leaking from the vac and immediately panicked. Destiny cleaned me up and kept telling me it would be okay, but I was convinced they wouldn’t be able to operate for some reason.

We received the announcement that transport was on their way to take me to the OR. There was anxiety whenever transport came because I always wanted to make sure I was prepared. I normally would brush my teeth and use the bathroom, but this time was different. I knew I wouldn’t be awake for several days and I also knew I wouldn’t be coming back to this room or wing. It was almost too much to handle, but I said my goodbyes, got on the stretcher and rolled down to the OR.

Chapter 14: Repeat

As I go through my Mom’s memo books that she recorded this journey in, my mind is
back at UNC hospital. When I think back to January of 2019, it’s a blur of Doctors rounding, telling us what my white blood cell count was, pre-op, going under anesthesia, waking up from anesthesia, throwing up, Physical and Occupational therapy, repeat.

I had been hospitalized for over two months at this point and was struggling to see a
light at the end of the tunnel. I finally RSVP’d no to one of my best friend’s weddings
that was planned for the end of February, although I’m sure she already knew it was
going to be a no go for me. That was a hard conversation because as understanding as
this friend is, I was finally admitting to myself that my life was on pause and I just
needed to focus on the present.

February 1st was surgery #26 and I was the first case of the day. It wasn’t even 7AM
and I was dealing with another dramatic episode in my failing relationship. This
argument began because I wasn’t taking his advice about how to fix my wound vac over that of my nurses and my mom. At the time, I was so frustrated that I couldn’t even articulate a constructive response. I went into that surgery having just argued with the person I was dating. Unfortunately, this was not the first time. The stress that came along with this “rough patch” in my relationship is something that I should have been more open about at the time. As I read my Mom’s notes, I am mad at myself for not taking more control over what I allowed in my hospital room. When someone is sick, the best thing to do is to just be there for them and try as hard as you can to stay positive even if the situation is a nightmare.

Since we were 2 weeks away from the big surgery, the hard conversations kept coming.
I had been in the MPCU since December and the thought of leaving the unit was extremely upsetting. The nurses tried to reassure me that the Surgical ICU had great nurses and I had nothing worry about. They were honest with me and told me it was an older unit with less natural light and smaller rooms, and I immediately pictured a dungeon. Like I’ve said before, I became very attached to the people taking care of me and it was extremely emotional to leave units, especially the MPCU, since that is where I spent the most time. The plan was to stay in the MPCU right up until the morning of the flap surgery on February 14th. After surgery, I was going to be sedated for a few days. I started to dread that day and wished time would slow down.

Back in November of 2018 when I had the emergency lobectomy, I didn’t know I was going to have to have a major surgery, let alone have any time to think about it. I was now laying in a hospital bed with a huge wound, anticipating a surgery that would take a whole day, and wasn’t even guaranteed to succeed. The thought of this, along with waking up in a unit I had never been in after being sedated for multiple days was taking a toll on me.

The silver lining during this time was the conversation about skin regeneration. My
Doctor knew a rep that was working for a company called PolarityTE. The plan was to
try this product instead of skin grafts. It was exciting to learn I had another option besides grafts, but also scary to think about, since skin regeneration is so new and my wound was so big. I learned that there had been many success stories with burn patients who used this product, so that gave me a little hope, but there still was no guarantee it would work for me.

February 8th was the day of my 27th wound vac change. My case was delayed so my
Doctor came in my room to talk to me about the surgery that was happening in less than a week. He decided it was time for me to see a picture of the wound so I could better understand why he needed to do the surgery. The image I saw that day is burned into my memory forever. I was in total shock and couldn’t believe my eyes. It looked like a shark took a bite out of my left side and left nothing but the ribs. The wound started under my left breast and ended toward the middle of my back. When I would hear them talking about my wound, I pictured something big and bloody, but I didn’t picture exposed ribs with skin and muscle tissue nowhere to be found. By seeing that picture I finally realized why I had been in the hospital for 3 months and why I was constantly going to the OR. I also realized it was a miracle that I was still alive. In that moment, I felt as if my old life was gone forever.

Chapter 13: Answers

Much like the end of 2018, the beginning of 2019 was painful and confusing. Different Doctors were rounding, I would now have two wound vacs, and relationships were being tested. On January 3rd, I was in pre-op for my 19th surgery, answering routine questions and signing consent forms, when the surgeon who was going to be working on my left hand came over. She explained that she would need to cut away some scar tissue and then try to close it up as much as possible before covering the rest with integral shark skin. 

Later that day I woke up in the PACU with two wound vacs; one on my left hand and one on my ribs. Four days later, I would go back to the OR for both vacs to be changed, which would be my 20th time going under. For the rest of January I would be going to the OR twice a week for wound vac changes.

Friends and family were visiting a lot and it was a great distraction from what I was dealing with. I barely had time to be alone with my thoughts, which was probably for the best. The first time I had a panic attack was at about 4:30AM on January 21st. What started out as a bad dream turned into a full-blown meltdown. I remember 4 nurses rushing into my room to make sure I was okay. Since I was hooked up to monitors and there was a camera in my room, it wasn’t long before they realized something was wrong. At the time I was so embarrassed, but now when I look back, I can’t believe it took me that long to start noticing the effects the trauma was having on my mental health.

On January 22nd, I was in pre op when the surgeon who oversaw my hand came to talk to me again. She explained that the hope behind the integral shark skin and wound vac was that my own tissue would eventually heal, but if it didn’t, I would need a skin graft. The surgeon explained that the grafts would most likely come from my thigh, since that’s what the other surgeon would do for my upcoming surgery to cover the wound from the lobectomy.

No one had had this conversation with me yet and I was totally shocked. I had no idea they would need to use skin grafts to finish the job. I guess I never thought about it since I hadn’t seen the wound myself. I was devastated and confused. The surgeon apologized because she thought I was aware of the plan. I went in for surgery and they were able to change both wound vacs and take out my chest tube.

Even though all of this was going on, I still was able to work with PT almost every day. Cate and Grant would take me up to the rehab gym and we would try new exercises. It was nice to escape from my unit for a little bit. We would go up in the wheelchair and I would try to walk as far as I could before throwing up. Cate and Grant were used to me getting sick so we would always bring a pan up to the gym just in case. Britney Spears, Ke$ha, and Lady Gaga really helped me through those workouts (poor Grant and Dad).

On January 23rd, some med students had planned to come in and interview me about what happened. They were really nice, and I didn’t mind at all. I was so used to talking about it when new teams rounded that it was second nature by that point. On the same day, the plastic surgeon who oversaw my wound came in to talk to me about his plan. At this point, I didn’t know when the “flap” surgery was going to happen. He talked to me about why it was difficult to time it because it would take at least 6 hours and he wanted the wound to heal as much as possible before he took the vac off. When he told me it was scheduled for February 14th, it seemed like a lifetime away. I was upset because I realized I was going to be in the hospital well into the Spring, and I hadn’t mentally prepared for that.

I will always be grateful for this surgeon because of how honest and straightforward he was with me. The plan was to take my right latissimus muscle from my back and cover my left side wound with it (“flap” surgery). He then planned to connect the vessels under my left armpit and if that didn’t work, he would use the mammary arteries. He would then need skin grafts to cover the flap.

To everyone else it was the obvious solution, but to me everything was confusing because I hadn’t seen it. He didn’t think I was ready to see the photo and I didn’t argue with him. He explained that he would not take skin grafts until he was positive the flap was successful, so he had time to brainstorm about different options. Skin regeneration was and is up and coming, and he and my mom were going to research it. I felt a little better even though it was a hard conversation. My surgeon did tell me that if I were to gain weight, it would help with the healing process and hopefully result in less grafting. That advice was frustrating, because as much as I wanted to gain weight, I was constantly throwing up.

During this time, not only was I dealing with going to the OR twice a week, nausea, and hard conversations/realizations, I was trying to maintain a relationship that was crumbling. I felt guilty that I couldn’t be totally present because my room was basically a revolving door, and during the times we were able to be alone, I was tired. I realize now that it wasn’t my job to take care of someone else during that point in my life. I am appreciative of everyone who supported me, but certain arguments and conversations have a time and a place, and at my bedside in the hospital wasn’t it. Additional stress was the last thing I needed, and unfortunately, I couldn’t seem to get away from it.