Well, I guess that was an adventure...
I was released from the hospital on Tuesday thankfully. I will give you the run down.
Evening 1: My fever was a high 102 that flirted heavily with a 103 until going down to low-grade. This being said I was advised to call my doctor who made me go to the ER on a Friday night. Of course the hospital was hopping with emergencies and I waited longer than normal for a cancer patient on chemotherapy but I eventually was brought in. It was the usual shenanigans “What size needle does your port take?” This question always flusters me, shouldn’t they know? I don’t. “Oh, we’ll just use the small size...Okay, not getting any blood return...” AND so on. They ended up putting a janky IV in me, it wasn’t quite right either but it worked. The ER doctor finally came in “So, I didn’t look at your chart, fill me in on what’s going on...” Ummmm... This actually was my experience all weekend, I kind of felt like I was doing their work but whatever. My blood tests came back and the doc said in a surprised tone “Your labs are great!” Though ultimately the decision was to keep me for potential abscess surgery. Food and water were denied to me at midnight. Sleep was virtually impossible.
Day 2: No food. No water. No information. Well, not really. I did find out I had a bonus abscess deeper inside and behind my uterus, close to the tumor. I waited to go into surgery...and waited...and waited...Finally my nurse comes in flustered “The doctors have changed your orders so you can eat and drink but there is no reason why.” 😳 This was around 3pm. My nurse called the surgeon and he claimed to be too busy to give more info but said they were changing plans.
Day 3: Sleep deprived I welcomed 3 surgeons into my room. They had decided to do a procedure called a CT guided drain which is something another team does. Keeping me in the hospital gave me a better chance of getting the procedure sooner than later plus they were giving me IV antibiotics. They were told I might not get in until Tuesday but that they would plead my case. I found out later that they got me in for the next day, again, no food or water after midnight.
Day 4: I found out my procedure was at 1pm, a suggested time, surgery has never been exactly when it has been scheduled in my experience. Some dude with paperwork came in and told me all the bad things that could happen but I signed the release anyway. Around 1:30 my regular surgeon came in, he looked wretched “I hate your cancer.” He started, I agreed cautiously. “Have you been in contact with your palliative team?” I was startled by this question. “Ummm, yeah, I talk to my social worker if that’s what you mean.” He continued “These abscesses you have, they are coming from your leaky tumor. I can keep draining them but one day you are going to get tired of that. Quality of life is important, some people are okay with living a terrible life. Ultimately your cancer is going to win. I can keep doing the procedures but your oncologist won’t be able to administer chemo... I mean, you’ve made it further than some people with your condition...” Luckily my husband had called before my doctor started talking, it was nice to feel the support, though Charles was mostly quiet taking it in. I told my surgeon that I was aware of my diagnosis and that he didn’t know my future as did I. Charles spoke backing me up, stating that we know my situation has always been daunting and basically his left field speech was not needed. He finally left. I cried, not because he said anything that was a surprise but that he said that shit at all. There was an authoritative, god-like attitude behind the conversation and I was fucking exhausted.
Transportation came and got me, taking me to the bowels of the hospital. I was to be awake but drugged “You won’t remember anything.” I was told, that actually is not true. I was taken into a room with a CT machine where I climbed on, belly down and ass up. I had to pull down my pants and they did the first scan. Then came the drugs which I felt but was not sleeping. Then came the needle 😳 The doctor seemed really kind as he shoved in the apparatus, the pain was excruciating and I cried like I was 3 years old, sobbing as the nurse comforted me. The doctor said he would wait until I was ready for the last shove. “Okay.” I sobbed. They attached a rather large plastic bag to the catheter in my butt cheek and sent me back up to my room.
Day 4: My pain was not too bad. I was pacing in my room trying to get in some movement when my surgeon walked in. “Hi.” He said. I answered in kind and he said “Your eyes are shooting daggers at me.” I then responded “Because I am not ready to die.” I then went on to tell him that his timing was as inappropriate as what he said to me and that I am just doing all the things until I determine that I am done. When I am ready to die, whether it is from this cancer or something down the line, I am going to do so like a fucking rockstar. I continued to say that he only knew a small part of me, that my mom, though I had a difficult relationship with her, had cockroach energy and lived longer than she should’ve with her lung cancer. I said I had that energy as well and he was not to pretend to know my story that has not been written yet. I told him that I had experienced my share of death in this life and I was not taking anything lightly nor was I stupid but you never really know what’s going to happen. I said a lot of things, all while pacing and watching his wide eyes as he took it in. At the end I asked him if I could have a smaller bag (one of his partners earlier had told me no.) He told me yes. For a surgeon, even though I feel he overstepped, I actually like him and think he has a heart. “Are we good?” I asked him. “Are you good with me?” He asked back. I said I was and indeed I did feel better. I felt I had set my boundaries and took my power back. Before he left he said “Most people that get the procedure you did can’t get out of bed.” I felt pretty good about that. Shortly thereafter I got to go home.
The next day I had my oncology appointment. She was appalled at the talk my surgeon had with me. She said that she was the one who knew my whole picture, that my cancer is stable and that the abscesses actually have kept me from having sepsis. She went on to say that medicine is an art and that a lot of doctors don’t think outside of their boxes. I can tell you that my oncologist has never sugar coated anything, I felt very supported and listened to. This is what is needed in western medicine but often hard to find.
I am going to quit yammering but I hope you get the gist. I feel better but I have to do this one day at a time as cheesy as that sounds. Nobody knows the whole story until it has been written, I look forward with anticipation and a little fear but forward I go.
Until next time ❤️