Sarcoma, Pt 3.


*TW – graphic photos from the operation room

After my first surgery I thought that I’d have the wound VAC on for 2-3 weeks, minimum. My appointment to meet with my plastic surgeon was nine days post-op because it was clear after the first VAC change that my tissue wasn’t going to grow back on it’s own. That’s the thing about radiation; it doesn’t discriminate. Just because I’m young and otherwise healthy didn’t mean I got to escape the full force of radiation. My tissue was (and is) so damaged. Too damaged to consider any other alternative.

My plastic surgeon came highly recommended, with a last name that no one could pronounce. My oncologist told me everyone loved him and my nurse raved about him. I wasn’t sure what I expected but I suppose a counterpart to my older, very experienced surgical oncologist? Instead when the plastics team walked in I was surprised to note that they were all fairly young – and the Ativan I had taken prior to this third VAC change loosened my lips enough to ask if I should let them operate on me (OOPS. Remind me that anxiety meds are not my friend). They assured me they were (and to further comfort myself I did some background checks and yes my doctor was very qualified).

Dr. Sammy told me that I had a few options. First: I could get a tummy tuck. The location where the sarcoma had made its home was soft-tissue, not muscle, so taking soft tissue and replacing it would be the most aesthetically pleasing solution. However, the surgery itself would be long (~6 hours) and he would basically have to clear a whole day to do it. He said it would probably be another 3 weeks before we could do it, and worse, he said, was recovery. While I’d get the benefit of a tummy tuck after three kids, I’d also have to deal with the recovery which would be difficult and extra painful in an area that would otherwise be untouched.

My other option, he said, wasn’t so pretty. They’d make a long incision in the back of my calf, pull out one muscle, and fill the hole with the muscle. Calf muscle doesn’t belong in the front of your tibia, but it would do the job. It would be a lot less aesthetically pleasing, but recovery would be significantly easier. Either way they would take skin from my thigh or butt and cover the new area. The other thing? He would put me on his schedule the NEXT DAY.

The decision was basically made for me. The only reason to take the first option was for the sake of vanity. And yes, of course it was tempting…but knowing that I could get this gaping hole in my leg filled and the wound VAC off, and to get back home to my kids before the end of September, was so worth it.

I packed a bag, expected to be there for a few days. They said I’d probably say from Friday – Sunday or Monday. My mother-in-law was already staying with us so we didn’t have to worry about the kids. I tried to force my brain to get into fight mode, knowing that my first surgery was harder than expected and not knowing what the second would really be like.

I got to scrub down with that terrible surgical soap again, this time having an allergic reaction (because why not, right?). We were back at the hospital at 9 AM the next day.

This time around my surgery prep team was very on top of things. There was a huge flurry of activity, different people coming in and out, overloading me with information. This time I saw an actual anesthesia team – who informed me that I didn’t need to dump any of my milk (contrary to what the resident of my previous team had told me). They explained that they were going to put a catheter in my leg and it would administer local anesthesia to my leg to keep it numbed in addition to the general anesthesia I’d receive before going into surgery. They said they’d keep this pain blocker in after my surgery to help keep the pain under control. Apparently even after three babies I have great anatomy and the head anesthesiologist took the opportunity to draw some explanations out on one side of my pelvis for his resident. I took it as a compliment.

My plastic surgeon came in with an ultrasound machine to draw all over my calf to plan where he would take the muscle from. He told me that drawing it out he’d be able to minimize the incision to remove the muscle – I’d have a 6 inch incision instead of the usual 12 inch one. Then we figured out where we’d take the donor skin from: my right butt cheek, as close to my hip as possible. And then we were ready. It was a short surgery, they said. 2 hours max. I gave my stuff to the nurse to keep just in case someone forgot to call my husband. And waved goodbye for the second time in two weeks.

Once again they wheeled me away to the surgery room. For whatever reason I can’t remember it as clearly as I can remember the surgical room for the first surgery. I think it was a shorter ride over. The same process – moving to the surgical table, an oxygen mask and then blackout.

Waking up was as hard as it was the first time. I was super disoriented, I remember feeling super parched and exhausted. I told my nurse in my delirium that she was pretty. (She was, I stand by that). It took me an hour or so to do well enough for them to let Lucas see me. Once again, he came in looking more tired than I was. It had been another surgery that took two hours longer than anticipated. I went in at noon and when I saw Lucas it was already after six pm.

But, Lucas told me, had I seen Dr. Sammy? I hadn’t. And so Lucas told me that my surgeon had attempted something new. That I hadn’t been told about. He attempted – and succeeded – to move the muscle from the back of my calf to the front without making an incision. He had spared me additional suffering and an additional scar. That’s why my surgery took longer. Here are the pictures from my surgery that Dr. Sammy sent me, a week later.

Coming out of this surgery was hard. I woke up to another wound VAC on my leg, and a brace. I thought that my last hospital stay was hard; little did I know what was coming.

I should have known that the night would go wrong from the get go. It took them an hour to find my belongings, which should have been taking to a locker but that were somehow misplaced. Once they found my things, Lucas was too tired to stay with me – so I gave him my blessing to take Blaise and go home. Almost as soon as he left my nurses decided to take me to my room. My mother in law and left me some balloons that were a nice gesture but more trouble than they were worth and they made a few jokes about the balloons getting in the way. We got into the elevator and one of my tubes got stuck in the door. We were trapped, for a solid 30 minutes.

I took this in the elevator that we were stuck in. She is pretty, right? I cracked some jokes about how they should be glad that I wasn’t a smelly old man; they agreed. I’ve always been one for gallows humor, particularly during this time that I’ve had cancer. I remember them blaming the balloons.

We did eventually get out, thanks to the nurses on the other side who were able to cut the cord that had gotten stuck in there. We made it out and into my room which was a solo room (THANK GOD. It’s already bad enough to use a bedpan, but using it with another person on the other side of the room? Nah. No thanks.)

I was greeted by a very sweet older nurse named Bill who will forever be my favorite nurse because he made me a peanut butter and jelly sandwich when I hadn’t eaten anything in close to 24 hours; he tried to help me get comfortable and settle in for the night. Little did I know what would happen as the night went on…

Somehow, someone made a mistake. Well, multiple mistakes were made. The first one was that the catheter in my leg was disconnected after surgery; while the catheter itself remained in my leg, the actual drip itself was disconnected. I am not sure who decided that, but it happened before I moved out of post-op. The second mistake was that we took the heart monitors off. That would usually not be a big deal, but the hospital apparently only had a limited number and in order for me to be connected to the pain blocker I had to have the heart monitors on. So without those, I couldn’t be reconnected.

My pain progressively got worse as the pain blocker wore off; I had taken a dose of oxycodone when I first got to my room. Around midnight, Bill had left and another nurse was with me for the night, and my pain was becoming unbearable. She attempted to get a hold of the anesthesiologist on call to reconnect the pain blocker. She tried every 30 minutes to no avail. My IV was starting to hurt, so I got a new one placed. I learned to ask for the IV with the blue cap because that’s the one they use for children and apparently I have tiny veins. Another hour passed. Another. It was three AM and she wanted to give me another oxycodone…except it had been taken off of my chart. The one drug that I had been on since my first surgery had been removed from my chart in the middle of the night, hours after a second intense surgery. I was left to cope with Tylenol for the longest vigil of pain I had ever experienced in my life.

In those late hours of the night I recorded some Instagram stories. I messaged whoever was awake. I remember texting and the pain I was in was so bad that I would black out halfway through typing so the sentence would start out normal and would end like thisshwuejdnwh….

Somehow I made it through the night. I didn’t sleep. We could not get a hold of anyone. I did not get an answer from anesthesia or the plastic surgery team until nearly 9 AM the next day.

It was a mistake, they said. The tall, blonde plastic surgeon with a high ponytail and the hipster, less attractive plastic surgeon with the round glasses. They said they didn’t know how it happened. The anesthesiologists apologized too as I sobbed and asked how the actual fuck everything had been removed from my chart and that there were no heart monitors to put on me to reconnect the pain blocker. I had spent the night feeling like someone had taken my leg muscle and was twisting it like a loaf of Babka and then stabbing me with a knife. My donor site, which I was forced to sit on since they ended up flaying the skin from the middle of my butt cheek, was barely a nuisance compared to the severe anguish I felt from my leg. They told me that usually people can’t handle the pain from the donor site, so that gave everyone some perspective. The fact is that radiated tissue is severely damaged and sensitive; and I had just had my bone scraped not even two weeks prior. Of course that pain was tremendously worse than a sheet of skin that had been removed like roast beef from my ass.

They put the pain blocker back in and put oxycodone back on my chart. I could take up to 15mg per dose, every 4 hours…which is what my previous team had told me I could take in 12 hours if I wanted to nurse. Apparently not everyone is informed when it comes to pumping and that dumping is really a thing of the past. I managed with 10mg for the most part, every 4 hours, with the pain blocker.

When I saw my surgeon later that day he was furious. FURIOUS. I mean, he was angry enough that he repeated multiple times that he submitted an incident report. What had happened to me, he said, was not acceptable. Someone would reap the consequences of their actions – but really, I’m the one who reaped them. He apologized so many times. He wrote his cell phone number on my board for me in case anything happened – and as a warning to everyone else that he was watching.

Dr. Sammy also gave me a new healing and pain regimen. A long list of vitamins (a prenatal, vitamin c, calcium + magnesium), some eastern medicine and this powder called Juven to dump in a drink and chug. He said I needed to be on a high protein diet. Whatever it took to get me to a place where I could start healing.

He also explained a little about why he did what he did in the operation room. He wanted to practice on a corpse first but he didn’t have any time. And really, what he did on me he wouldn’t do on an older patient. But it could change the lives of young sarcoma patients. Sarcoma is only 1% of all cancer. There’s not a lot of funding that goes into it, and not a lot of experimenting. Usually, Sarcoma has two peaks: children under 15, and adults over 60. To get someone in their late 20s is extremely uncommon. But that made me the perfect person to try this out on. The success of this surgery, he said, would change the lives of children with sarcoma. They wouldn’t need to get an incision the length of their arm or leg to move muscle around. They could do it with some cameras and pull it over and know that it would work. This is something that I am still blown away by, a month later.

The rest of my stay was hard. My pain was bad, very frequently. I missed my kids. I hated using a bedpan or the portable toilet that they’d place next to my bed. I forced myself to keep pumping for Blaise. I struggled to sleep because even when the pain subsided, the narcotics gave me nightmares.

I realized then, those first few days out of the six I was in the hospital, that I would not be walking out of there like I had thought I would. The pain was no where near leaving. My kids were not going to have their mom back just yet.

This was the hardest thing I’ve ever done. Emotionally. Physically. I was alone so much, alone with my pain and my thoughts and wondering why, why had God allowed this in my life? To baptize me through fire? Because I’m sorry, but the whole “God never gives you more than you can handle” thing is not true. God gives you more than you can handle so that you lean on him and not yourself. And I can tell you honestly that I had a lot of conversation with God during my time in the hospital, although a lot of it involved swearing…

The sixth day came. At 6 AM they came and took the wound VAC off. They told me they’d work on my discharge papers and my meds. And I was officially free, not “cancer free” because they don’t use that terminology if you’re like me and have a 20% chance of recurrence. But free to go home and free of any more surgeries, for the time being…

I got home and laid down with my kids. And thanked God for letting me be there with them. I hoped then that I would be walking in a week. Well, that wasn’t the case. But I made it. I freaking made it home.