Sarcoma, Pt 2


trigger warning: cancer, surgery + graphic images ahead, not for the faint of stomach ⚠️

I have known for a while that it is necessary to write this post, not for you – my readers – but for me to process the significant trauma that my mind and body has gone through. The past month and change has been a grueling marathon of pain and I don’t think that I can properly transmit my descent into the fire, ie, my surgeries and their aftermaths. This verbiage may seem dramatic but the only possible way for me to recall and transmit this is by narrating this as if it was not my own story. I was not prepared for the extreme suffering that my body went through and I don’t think I have properly processed it yet – but I don’t want to forget it, either.

My first surgery was scheduled for September 10th. My understanding was that it would be a quick surgery, that I’d be in and out in two hours. My mom drove up to help me and I told her I’d need her for that one night that I’d be in the hospital because my oncologist told me I’d be there for one night and go back with a wound VAC on my leg but otherwise I’d be fine. I had the pleasure of scrubbing down with surgical soap the night before and morning of that was itchy and left my skin feeling raw. I packed an overnight bag with very little besides my breast pump, some granola bars and a toothbrush – mom essentials, right – and went in that day thinking positive thoughts. We actually arrived an hour later than our “arrival” time because of Boston traffic and I should have seen that as some foreshadowing that this whole ordeal would be a much longer process than I expected.

I went in ready for surgery and they handed me an outfit I hadn’t worn in seven months – a Johnny and those mesh undies you get when you’re at the hospital for L&D. I sent this picture to my friend Elysa who was waiting for her second baby to arrive and jokingly asked if we’d be matching that day.

They brought me into triage and said it would be quick and my oncologist assured me that he would call my husband as soon as surgery was done. I handed my wedding ring over to Lucas and said I’d see them on the other side. The team wheeled me into surgery, my oncologist chatting nonchalantly to me about this art exhibit he had seen at RISD that had a significant amount of modern female artists. Somewhere he had read (pretty sure, notes from my social worker) that I painted and thought it would help me get my mind off of what was about to happen. They moved me to the surgical table, put an oxygen mask on and piled a few blankets on me. The room was cold enough that no bacteria could possibly survive, I joked to the team. They warned me they were about to put me under, and the last thing I heard and saw was my oncologist telling me to think of a painting. Lee Krasner’s Gaea was the last image in my head.

As I sit here writing this I‘m having a hard time remembering how or where I woke up. I don’t react well to general anesthesia and it knocks me out for longer than it should. I remember a few things: trying to look at the clock, the nurse bringing me some crackers and water, wondering where Lucas was. I remember not being able to move my leg and that there was a huge machine connected to it. I remember laying there looking at the people across from me who had also gotten out of surgery. Everyone looked like they were half in the grave.

When the nurse finally brought my husband to me he looked as bad as the other surgical patients, his face lined with worry. Apparently no one had called him to tell him that my surgery had gone as expected or that I was ok. I was brought up to a shared room with a woman who looked (and acted) like the witch from Snow White.

Looking back, my memory regarding this first surgery is barely a whisper, like my brain couldn’t process what had happened and decided to let it fade like a bad dream. That first stay was a day longer than I had planned and I learned very quickly that I was not going to resume normal life right away. I was in constant pain and the resident on my oncologist’s team was calling the shots re: my painkillers. She had me on half the normal dose of OxyContin and said that since I was breastfeeding I couldn’t exceed 30mg a day without having to dump my milk (this was not true). It was not nearly enough considering that I had a huge hole in my leg and a wound VAC inside the space where the tumor used to be. I found out the next day when Lucas demanded to finally talk to my doctor that they had removed the tumor but that they had had to scrape my bone in the process which would mean more pain and delayed healing. The pain from that, he said, could potentially be chronic.

My first hospital stay is a foggy rotation of sleeplessness and pain and annoyance, of asking if there was anything I could take and forcing myself to move my bed and pump at 2 AM to keep my supply going. My struggle to sleep was heightened by my roommate who got up to go to the bathroom on my side of the room every 45 minutes and was constantly, constantly complaining about her situation. More than once as she passed through my side of the room she made comments about the fact that I was allowed to eat (by the way, I puked every day that I was there). The fact that I had just gotten a huge chunk of my leg removed was clearly no big deal to her. She was probably as terrible as the nurses who kept refusing me proper pain medication and almost as bad as the nausea.

I lived for the moments Lucas would come to spend time with me and for the time I would get to see my happy, sweet 7 month old who was clueless about the pain his mother was in. I lived in anticipation of going home to my kids. They were the light at the end of the tunnel.

They kept me there an extra day so that they could change my wound VAC. They told me that it would be painful but did not prepare me for how bad it would be. They gave me an extra shot of something and some Ativan; the Ativan made my head foggy and my lips loose. Apparently I asked if my neighbor had left while she was still in the room because I really didn’t need her listening to what was about to happen…

There are no words for the pain I felt during that first VAC change. If you’ve watched a war movie and seen a man get his leg blown off? That’s really the closest I can get to describing the mind-numbing, searing fire of pure agony. The way that the VAC works is that it puts negative pressure on the wound while removing excess fluid from the wound. Because I had a hole in my leg, the sponge of the VAC was placed inside the hole rather than on top of a surface. To change the sponge, you have to turn off the machine which first removes all the pressure on the wound which caused a first wave of pain. I gritted my teeth and squeezed Lucas’ hand as hard as I could. Peeling the tape off caused full body shakes and I could not fight the tears from pouring down my face. But as soon as they touched the sponge my whole world was pain, it felt like someone was stabbing me with a huge burning knife. I screamed.

I would rather push out another 15 babies than experience that again.

Lucas has a stomach of steel and took this picture during that first VAC change.

I went home thinking I’d be able to hobble around on my own (false) and that it would be less painful as time passed (also false). I had two VAC changes before my second surgery, both of which were awful…

At my follow up appointment my oncologist told me what I had expected, but had hoped would not be the case: the radiation had damaged my tissue too much and no new tissue was growing. I’d have to have plastic surgery. He told me it would be 2-4 weeks that I’d have the wound VAC because my plastic surgeon would need time to schedule me in…

I had an appointment to meet with the plastic surgeon on September 19th. And man, I did not expect what was coming then…

(To Be Continued).