Trapped in a cage.

Source: Unsplash

My Friday started when I went into the lab to give blood and the phlebotomist couldn’t find a vein in my right arm. He thought it would be a good idea to fish around my arm with the needle until I told him he needed to stop and use my other arm.

By the time I got home from the lab my upper stomach pain was a 6 or a 7 which was trending in the opposite direction of where I should be. I called the surgery nurse to let her know my stomach was distended again and full of fluid and that I was having trouble going to the bathroom. They were worried there was a blockage in my bile duct and said I needed to check myself into the ER immediately.

The ER is in a different hospital from where I had had my surgery so I already had reservations but went in to rule out the blockage. Once I was admitted they rolled me into a room where I was supposed to wait for another CT scan. The CT scan happened shortly after we got in and within an hour we had ruled out a blockage. What happened next was a blur of surgeons and doctors coming into meet with me and ask me more questions that have already been answered in my chart. One of the medicine team residents was particularly rattled by my age and the fact that there were massive tumors covering my liver.

At this point I had already switched back to a liquid diet the night before and had a jello for breakfast with my medication. We spent the next 5 hours in ER trying to get a clear answer from the nurses, surgeons, and residents so I could get out of there and go home. By 7 PM I was hangry and frustrated by the medical team here because I didn’t feel like they were reading my charts or even taking into context the reality of my situation which is that I had just had major surgery and everything in me was a little off.

The resident came back to check on me and he said he had talked to the medical team, including the oncology staff at the hospital and all advised that I stay overnight for monitoring. The next step from there would be to do pre-chemo tests, get a port put in and start in-patient chemo as soon as possible. I was not ok with this. I asked if they had even talked to my oncology team and they said they had sent a few emails and everyone agreed on this path. Something didn’t seem right and I didn’t trust what they were telling me. I felt like they were playing the telephone game and trying to do discovery on something that my experienced surgical and oncology team had already planned. They scared my family and I with my liver levels and said they needed to at least keep me overnight. We fought it. I just wanted to go home but they made it seem like my liver was on the verge of failure, so we stayed.

I know my liver is in really bad shape. I’ve seen the scans and I know how I feel but I also would have much rather laid low on my couch at home than to spend the night at the hospital. The oncology team’s plan was also really out of left field. Was I really so bad that they needed to start in-patient chemo now before I had had a chance to fully heal from surgery? Would another week or two make a difference? Everything felt wrong and with every conversation with the doctors I was growing more and more agitated.

Troy and I ended up spending the night in the hospital. The only positive thing that came out of it is one of my laparoscopic wounds started leaking ascites fluid (basically the internal fluid build up caused by bad liver function) and wouldn’t stop. And by leaking I mean there is a constant stream of fluid coming out of me and I now have a bag and a drain to deal with it. I’m ok with this because the more the fluid drains out of me the less fluid is building up in my body.

The next morning my oncologist called me from his cell phone. He and my other oncologist were both on a plane travelling to the east coast this weekend. He said the pain I was feeling was from my liver swelling and yes, chemo will help with it, but both he and my surgeon agreed that I need more time to heal from surgery and that I should come in and see them next week. He also said that it’s likely the resident team saw my age and state of my liver and started to get concerned and emotional about it. In other words, what my oncologist with over 40 years in this field was telling me was the exact opposite of what the hospital team were saying. He had looked at my scans and confirmed the pain and swelling in my liver were from inflammation and likely a bleed near some of the tumors which was normal and expected given my condition. I asked if I could go home, and he confirmed I should be at home resting and not dealing with this stress.

The nurse came by shortly after that and said the doctor’s ordered more tests because they were worried that my liquid bowel movements were being caused by C-Diff, which is basically a really nasty bacterial gut infection that is sort of like E.Coli and highly contagious. I know I didn’t have C-Diff because I’ve actually had it before when I was in college. It was miserable. What they were ignoring is the fact that my colon surgery team told me it would take nearly a month to be regular and produce solid bowel movements. But what do I know? They wanted to do another test to rule it out and as an extra precaution quarantine my room and make it so everyone would need to come in wearing special yellow gowns and gloves. A couple hours later they confirmed I didn’t have C-Diff….but had they listened I could have also told them that.

The medical team came by again at around 11:00 AM on Saturday and at that point I wasn’t going to give them an option. My oncologist said I could go home and there was no reason for me to be there and follow their plan. He also said he never spoke with anyone there and asked me to give them his number so he could also relay this message. I needed to be at home. I insisted on being discharged. They pushed back a little bit but I refused to take no for an answer. My medical team was at the other hospital and I didn’t feel comfortable with this team because I believe they lacked the experience or context with my case. I didn’t trust them.

So we got discharge papers about an hour after that and left. I was angry and fighting feelings of rage and frustration. I knew the only way for me to cool down would be to just be home in my safe space and rest. So I did that. We got home and I went straight to the couch and napped for most of the rest of yesterday.

I am just happy to be home again.

- Brynn