Wake up to reality.

Source: Nigel Tadyanehondo, Unsplash

Things had been going well with the new medications except for the GI issues which continued to plague me. Two weeks ago I went into the doctor for some hydration and a blood transfusion, and as they normally do, they check my vitals and take a little blood for testing. Everything checked out fine I spent a few hours napping in the hospital bed and took a Lyft home.

I was supposed to go in for another infusion that Friday for the new trial I am on, or at least that was the plan. Troy, my Mom, and I arrived at the hospital and we went through the normal procedure. Take vitals, wait for bed, nurse comes in and hooks me up. This time was different. I had been taking tincture of Opium to help manage my GI issues and the last dose I had was first think in the morning. Normally the impact is less than if I were to have a glass of wine but on that day I couldn’t shake the feelings of exhaustion and grogginess almost 6 hours after my last dose.

When we got to the room the nurse put me in the bed and I could feel my eyelids getting heavier and heavier. They wanted to take my blood pressure again because the previous reading seemed unusually low. I run low normally but this was really low. Same result. Some of the details that follow are a bit fuzzy but a number of nurses, including my oncologist came by to talk to me and see how I was doing. In my mind I just felt tired but still believed I could get up and walk to the car to go home. In reality I was coming in and out of consciousness and having imaginary conversations with people who weren’t in the room. I was in my own reality.

The consensus in the room was to send me to the ER to find out what was going on because what was happening to me was definitely not normal. When I was conscious I fought the idea of sitting in the ER for hours again because I always feel like a lab rat when I am there. I’ve experienced test after test to rule out things they already know and have documented before they focus on the actual problem. I didn’t want to go but everyone in the room made it clear to me that I really didn’t have a choice.

Troy and my Mom left to get some of my things at home while they drove me over to the other hospital in an ambulance. Then the long wait began. When you get sent to the ER it’s not as if they triage you and get you in front of a doctor right away. It happens in stages. For me I started out in the hallway with a number of other patients and drug addicts who were clearly in worse shape than me. About an hour later they moved me to a private room where I was supposed to wait for the on call nurse and resident doctor. As expected the main metric for the time being was my vitals given my blood pressure was so low so I was seeing the nurse hourly, all the while I was walking around and feeling normal, if not a little frustrated by the situation. By 4:00 AM the next day a room in the ICU opened up and they relocated Troy and me upstairs.

Normal is relative. My version of normal that weekend was full of intermittent hallucinations. Not the recreational kind, but more like this weird dreamlike state where I was in the room but imagining I was having a conversation with someone who wasn’t there. I would usually shake myself out of it once I realized it wasn’t real but to see it from my Mom and Troy’s perspective it must have been terrifying to see me randomly blurting out nonsense.

Turns out the GI problems were the culprit after all and “leaked” some bad bacteria into my bloodstream and caused a blood infection. Had they not caught it in the hospital when they did it is likely I would have gone into full blown septic shock which has a 40% survival rate. The bacteria grew at a rapid rate and was well on its way to shutting my kidneys down so the next few days in the hospital were spent hooked up to IVs for hydration and to kill the organisms blooming inside my veins.

The last big hospital stay was in June where I spent 18 days in recovery and nearly died in the process. I remember sitting in the bed when the palliative care team talked to my entire family about taking me off of the IVs and letting me go. I watched my brother’s eyes widen like saucers and Troy’s expression turn to a collected anger. I remember thinking to myself, “Over my dead body am I going to let this beat me. I’m not done yet.” After that, Troy managed to pull all of the medical teams together and proceeded to lay into them about their inability to communicate across teams. The experience as he described it to me sounded awfully familiar to managing people and teams in the business world. A terrifying thought if you really stop and think about it.

Troy’s benchmark for whether I was going to make it was if I kissed him back. He told the doctor’s, “When I go to kiss my wife she kisses me and I know she is still there. The minute that stops we can have another conversation but until then we keep trying.” In the weeks that followed that stay Troy kept talking about how this experience gave him PTSD. At first I couldn’t relate to it, nor did I understand how a hospital stay could create so much stress, but I also wasn’t living his reality. His reality has been riddled with hallucinations, medical scares, witnessing a 40 pound weight loss in less than a month, and managing neurological side effects. We both are incredibly fortunate that my Mom was there to help us because without her I think the trauma would have been that much worse.

This cancer experience continues to teach me lessons. Some more welcome than others. I think the lesson in this is that everyone has a different perception of what is presented before them and subsequently a different way of handling the stress that comes with it. What might seem perfectly normal to me (like talking to my imaginary friends) seems like a weird side effect to others, or in this case a symptom of a much more serious problem. The takeaway from this is that we caught it because my caregivers had the foresight to see that something was really off.

I know I am not going to be able to fix Troy’s PTSD about these hospital visits but the least I can do is listen. If I am really honest with myself I would expect that I too am going to experience trauma as the months wear on but I won’t know how that will look until it happens. There are still good days and bad days but it feels like the good is starting to outweigh the bad which will hopefully help us as we heal.

-Brynn