It seemed like the minute I stepped on the plane home on Sunday (Frankfurt to LAX, flight time 11 hours) was the minute that my tumors registered they were being attacked by the treatment I had six days prior.
I was in pain. I ate-I threw up-I felt nauseous-I didn’t eat-I threw up anyway. The flight attendants kept asking if there was anything they could do (we have motion-sickness medication), while gingerly trying to think of excuses not to have to handle my vomit bags. I had my entire anti-nausea arsenal at the ready, but those drugs only work if they want to work. I slept as much as I could. It was miserable.
The only redeeming factor of throwing up the whole ride home was when were finally on solid ground and homeland security tried to take me into a little interrogation room because I was setting off every radiation monitor on the premisses, the officer looked warily at the vomit bag in my hand and told me to sit back down.
Over the past three days the nausea hasn’t gotten much better, except for a brief infusion of Zofran on Monday that was supposed to “break the cycle.” I ate dinner that night. I haven’t really eaten anything since. Thank goodness for TPN. Thank goodness for sleep, the only time when I don’t throw up.
Desperate, we saw my backup oncologist yesterday who tried to get me a standing appointment at the infusion center for fluids and more IV Zofran until this passes. He wasn’t successful yesterday so he called over to the ER and told them to fit me in for a quick hour-and-a-half round of fluids, anti-nausea meds, and labs. Naively we believed him.
I answered all the triage questions with little detail, saying repeatedly, “My doctor just called over here. It should say what he wants in the computer.” I was sent out into the waiting room to wait for a bed.
I got a bed after 30 minutes or so. I was given a hospital gown “for easy access to my PICC line,” and left with the instructions to get into it and wait for the ER doctor. I tried to argue about the gown. “You can access my PICC line from under my shirt sleeve if I take off my jacket–see?” The nurse grumbled. “OK so we’ll just get some labs, wait for them to come back, and then see what we’re doing.”
It sounded pretty simple, but the truth dawned on my whole family at the same time. You can’t just go into the ER with an order from your doctor and get IV fluids and anti-nausea meds. If your labs say you need potassium, you get potassium. If your labs say you need iron, you get iron. My labs are far from perfect. Also, no matter if you just think this nausea is a side effect of the treatment you just had in Germany. No matter if you have spent the last 2.5 years trying to get some doctor to “fix” the nausea by finding out what’s causing it to no avail. This ER doctor might think he can be the one to figure it out with a CT or a brain MRI or a freaking endoscopy (which I have spent 2.5 years successfully avoiding).
I already had an appointment at the infusion center the next day, and more than anything I wanted to sit on my couch at home with my pillows and stuffed animals and heating pads. Drinking tea to turn off the nausea switch in my throat. Dozing and watching TV shows. More than anything, I did not want to spent the next 5 hours at the ER pulling around an IV pole every time I needed to go to the bathroom. I could endure another night of not eating, feeling nauseous, and vomiting, and I would go to the infusion center the next day where my stay would truly be only one and a half hours.
I said, “No, thank you.” Put my jacket back on. Walked out.
It was the second time in a week I have said no to a doctor, and maybe the second time ever. I put my foot down once in Germany too. Every other time I have been to the ER (or to the hospital for that matter), I have been a very dutiful patient. I get annoyed at how long everything takes, but I do it. It’s the price you pay to feel better, right?
I have been sick for almost three years now. I am tired of being sick. Tired of everything medical. Tired of waiting long hours in healing places to not really feel that much better. I was just sick in Germany for 10 days. I like being at home in the States. No matter how bad I feel, I feel slightly better at home. So I exercised my rights as an adult, ignored the nurse reiterating how sick I am, and said no.
Interestingly enough, I actually felt slightly better today. I skipped my infusion center appointment too. I took a long nap. I ate more for lunch than i’ve eaten in the past week–and I enjoyed it. My nausea switch was turned off almost all day. Maybe my nausea just needed a firm “NO.” Maybe my pain will respond to the same.