Actually written approximately June 25, 2011
On June 15, I had my first radiation treatment, and everything seemed to be going well. I lay down on the sofa to read email for a bit. At 6:30, I had an excruciating headache. I attempted to eat dinner at 7, and took my steroid pill (protecting my brain from swelling after radiation) - but immediately vomited. It was a hellish night, with pain and vomiting.
This next part I only know because Brie told me. Apparently, I had trouble communicating overnight and we both got very little sleep until 9 a.m., when I finally dropped into a heavy sleep. Brie woke me at 1:30 p.m. to get ready to go to radiation, because we needed to leave at 2:00. She tells me I was disoriented, had trouble forming sentences, and unsteady. As we got ready to leave and then walked to the hospital, I became increasingly confused, and Brie was concerned about my speech slurring - she feared I'd had a stroke, though my speech cleared by the time we got to the hospital. Brie told the doctors what had happened and we were whisked up to urgent care, where they did a CT scan and gave me pain meds and fluids. The CT scan showed no stroke, no bleeding in the brain - the lesions had increased in size slightly, but that was it and didn't explain what was happening. The medical staff suspected it had been a complicated migraine, and my radiation oncologist agreed, reassuring Brie that radiation would not cause this to happen again. And we walked home from the hospital, feeling relieved but still a little nervous.
Thursday night was good. With additional drugs for pain and nausea, I was able to eat some dinner and go to bed and sleep well. Brie was relieved that I was coherent every time I woke up, which wasn't often, and we were both feeling pretty good about 8:30 in the morning, assuming I'd have radiation that day. But by 9:45, my head was pounding, and I tried to nap. When I woke up, Brie couldn't understand anything I was saying, and I kept returning to bed. Finally, Brie got me up at 12:45 to see if I would regain coherence before going to radiation, and I didn't. Instead, my inability to communicate was clearly distressing both of us, and then I started vomiting and we headed to urgent care, and we ended up at the hospital.
Brie was overwhelmed and called gattagrigia to come support her. Gattagrigia and her partner both came and provided emotional and practical support - at urgent care, and then later at the hospital. Brie was able to ride in the back of the ambulance with me, so John drove our car to the hospital and Gattagrigia drove theirs. It was already 7 when we got to the hospital, and they informed Brie they wouldn't do an MRI until morning. Meanwhile, they started fluids with some nutrition and gave me pain meds that apparently calmed me a bit.
Even on pain meds, I was still uncomprehending and unable to communicate. Gattagrigia and John stayed with me while Brie went home to take care of the cats and grab a few things to take to the hospital for what proved to be a long, worrisome night.
I was a little clearer by morning, but still didn't seem to have any idea where I was or what had happened. My family had been coming to town for the weekend anyway, so my mom and sister arrived pretty early in the day, followed by my other sister and a whole slew of family members.
There were a few hurdles, but eventually they did an MRI, which showed cancer progression that the CT scan hadn't shown. Over the past couple of months, the cancer had been spreading, with multiple mets in various areas of the brain - all small, but the cause of the nausea, pain, neck pain, leg tingling, and other symptoms that had plagued me since I went off chemo. Among other things, the meninges were involved, which is why my neck had been so stiff. The oncologists recommended proceeding with brain radiation to alleviate those symptoms and restore lucidity - Brie and my family readily agreed, but I was still unaware of any of this.
Happily, I regained lucidity late Saturday evening and was much clearer by Sunday morning - and I have been pretty much myself ever since, though it's the cranky version of myself because I've still had a lot of pain and nausea. And steroids make you cranky, too - and hungry!
I started radiation on Monday and I'm over halfway through the treatments now. Each day, I've been at least a 7 on the 1-10 pain scale, and as far down as a 2. Sometimes it gets better and worse multiple times, which makes it very unpredictable. If I have the energy, I've got to write about this hospital - because it's whacked out.
So far I have no certainty when I'm getting home. I assume I'll be here for the entire ten days of radiation, which would get me out of here on Weds or Thurs. It is unbelievable the amount of pain meds I've had - Toradol, Dilaudid, morphine, fentanyl patch, compazine, ondansetron,reglan, ativan, liquid Tylenol, oxycodone.