Ray’s Blog

By early Tuesday afternoon I was leaving the hospital having completed the in-patient stage of my chemotherapy. I was sent home with a portable pump full of 100ml of 5-FU to wear for the next 46 hours. So far, so good. Part of the regimen requires taking a steroid which made me feel invincible; like I could run a marathon. My post-surgical pain melted away and I was feeling better than I had in weeks. There was a downside though. My jaw hurt when I chewed, I was sensitive to cold in my mouth and on my hands, I was coughing and had a runny nose, and my hands were spasming. But, on balance, considering all the drugs that were just injected into me plus the one still going in, I felt pretty good. That would be in stark contrast to what would happen just twelve hours later.

Because of the steroid, I was wired. I knew I was going to be awake for a while so I decided to play some Halo to pass the time. While playing, at about 11:30 I felt a sharp pain ripping through my abdomen, right under the skin in bars shooting all over. It subsided within about 10-15 seconds so I didn’t think much of it except that my pulse always runs a little higher when I play and given the chemo, the steroid, the lateness it made some sense. So, I started taking some deep breaths, trying to play a first-person-shooter game in calm repose to keep the pain at bay should it want to come back.

At midnight I quit Halo and tried to sleep but couldn’t so I went downstairs to watch some TV. By 2am I was ready to call it a night when the pain came back, this time, with a vengeance. It felt the same at first but instead of dissipating after a few seconds, it continued, and at an ever increasing intensity. It got to the point where I was moaning, then screaming in pain, feeling like I was being ripped open from the inside out. I was in complete shock and totally surprised; this was definitely not one of the standard side-effects that were explained to me.

By now Christina was downstairs trying to help me but had no idea what was happening to me and I had also awoken the kids who were already scared and crying (luckily, they remained upstairs). My only thought was to stop the 5-FU from pumping into me but in my panic, I couldn’t shut the pump off. In excruciating pain, I was trying to remember how the nurse explained to me how to clamp the tubing off but couldn’t, and the off button wasn’t working. Then I heard the pump go off again which meant that more 5-FU was on its way; that’s when I broke the tubing connecting me to the pump. Instantly, I felt the pain receding.

So there I was, standing, recovering from the worst pain I had ever experienced in my life, having brought my own cancer treatment prematurely to a complete stop, holding my thumb on the end of the tube I had broken, which was connected to my portacath, so blood wouldn’t come pouring out of me. HOLY SH*T!

Luckily, there was a clamp on the tube I was holding which I engaged so I could remove my thumb. That small, cheap plastic clamp was the only thing between me and bleeding out. Needless to say, sleeping would not be an option now. Christina told the kids I had had a bad dream and woke up screaming which they completely identified with. Christina called her mother, a retired nurse, and her parents decided to come over and watch the kids while we went to the emergency room. But first, we called my oncologist’s office who has a doctor available to talk to 24/7. We were told not to go to the ER but instead to show up at 8:30 when the cancer center opens and have them take care of me since they were more equipped. It made sense since he agreed that the reaction was to the 5-FU and since I had unplugged myself and was feeling better, we could most likely wait.

We sent Christina’s parents home since we weren’t going to the ER and Christina started working (she has trouble getting back to sleep) and I tried to sleep on the couch next to her so she could wake me up if she happened to notice a large pool of blood under me. Then, it happened all over again at 4:30. Same pain. We waited to see how bad this time. It was getting bad. Not knowing why it was happening again after being unplugged for two and a half hours, we called 911. I have NEVER called 911. In about three minutes after dialing 911, a fire engine showed up. About two minutes after that, the EMTs.

By this time, Christina’s parents were called back into action since of course I was going to the the ER this time. After being looked over by the EMTs and explaining my situation, we decided I should just wait it out at home. There was a pattern emerging. Every 2.5 hours the pain would come. The hope was that the intensity would decrease the further away we were from the unplugging. And that is exactly what happened. To be continued …

Related posts:

1. Another Chemo Setback Part II
2. Another Chemo Setback Part III
3. Side Effects From First Chemo
4. First Complete Chemo
5. Halloween