the whole week in one post
This was also sent out originally as an email to the same list I sent the first one too. I’ve reformatted this one slightly to break it up a touch, as it’s seriously, seriously long.
Day 1 (Thursday, December 13th)
About one and a half hours after I sent that first email, I started feeling really achey all over. The nurse gave me 1000mg of ibuprofen. It didn’t really help and the aches got more severe, along with a new addition: shivering. A nurse brought me a couple of more blankets and took my temperature. It was mildly elevated at 37.5. The doctors came in a told me that I was clearly having a reaction and therefore not in the control group. This was comforting, as I expected them to just shoot me full of something that would make all the symptoms go away. They were going to give me tylenol immediately, but after hearing that 30 minutes prior I’d been given the ibuprofen, they decided to space it out some, so I’d have to wait 1.5 hours for the tylenol/benadryl.
The next 1.5 hours weren’t exactly fun. Lots of shivering. Lots of me wishing I had waited to complain about the aches so I’d have gotten the tylenol sooner. Anyway, they kept checking vitals, with my temperature inching upward. It was up to 38.7 (101-ish) when they gave me the benadryl (by iv) and tylenol.
At some point the shivering stopped and I started sweating. I kept the blankets on for a while because it felt so good to feel warm, but eventually threw them off. The next temperature check had me at 39.5 (over 103). They brought in ice packs to put in my arm pits and a cold rag for my forehead.
This went on for a few hours, with my temperature staying in the high 38’s/low 39’s.. I don’t really remember clearly what time it was when it broke.. It was after the infusion stopped, which was well after midnight. So maybe around 2am. I slept fitfully, and very little, that night.
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Day 2 (Friday, December 14th)
I woke up with a normal temperature and feeling really nasty. I asked if I could take a shower in the 1 hour between pre-labs and administering pre-meds. Showers in the hospital were a huge, huge help. Unfortunately I only took 2 the entire 6 days I was there, due to time constraints and just generally inability to get around.
The infusion for day 2 was meant to be larger and given over a much shorter timespan. The rate of infusion the first day was 24ml/hour. Day 2’s rate was 37ml/hour. I would be done after about 8 hours. We started at around 2pm, so I thought I’d have an early night of it. They decided to stay ahead of any reaction so I was given round the clock meds. Every 2 hours, alternating between large doses of ibuprofen and of benadryl/tylenol. This seemed to work, although the benadryl kept me from really doing anything but watching tv, talking to joelle, and napping occasionally. Next thing I knew the infusion was over and they were taking the bag away and hooking me up to saline. I felt a little nauseous, but that was it. Not even running a fever. It all went downhill fast, unfortunately. First was the headache. There was so much pressure, it was painful to even touch my closed eyelids. Moving my eyes also hurt. They asked the “on a scale of 1 to 10, 10 being the worst pain ever…” question every 15 minutes. It started out at about 4, and over the next few hours got up to a 9. Along with the headache was the nausea. I felt on the verge of throwing up for hours. They had a list of medications they could use to fix the headache/nausea, and chose demerol as the first to try - the thinking was the nausea was possibly being caused by the headache. get rid of the headache, get rid of the nausea. Trouble with demerol is that it has a somewhat common side effect: nausea. It wasn’t even 15 seconds after she injected the demerol into my iv that I started throwing up. Basically from the moment I felt any effect at all, I was turned sideways on my bed, head over the plastic tub. I stayed that way, with occasional breaks on my back while the nurse rinsed the tub out, for the next 5 hours. At the end I was just vomitting back up the water I was drinking. The doctor told me what I was suffering from was Cytokine Release Syndrome. They gave me zofran - an anti nausea drug usually prescribed for chemo patients (and sometimes for severe morning sickness). This fixed me right up, and I got to sleep as the sun was coming up.
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Day 3 (Saturday, December 15th)
A day off, after the previous night’s fun. I spent the day with a bad headache, for which they were now giving me dilaudid, which also worked like a champ, being apparently 5 times more effective than morphine. I talked a lot to the doctor overseeing my trial, and she let me in on some interesting happenings. The whole point of the drug is to lower your white blood cell count by killing T cells, but apparently the labs from the second morning had seen my white blood cell count increase (and not by a small percentage. It had doubled.) It had come down to my baseline level after the previous night, but that first night’s spike was (and still is) unexplained. Also one of my liver enzymes was elevated after the first day, probably owing to giving me too much tylenol. There was some concern about my ability to clot after this, and the amount of tylenol I’d be getting would be going down sharply - basically they would only give me any if my fever started going up (above 38.5), and would use dilaudid for the rest of the headache pain.
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Day 4 (Sunday, December 16th)
We were back on the job, starting earlier than on either of the 2 previous infusions. Initial labs were drawn at 5am, and the infusion started around 8am. It was to be done at the same rate as Day 2. With the dilaudid for the headache I was pain free all day, and benadryl was still being given to me every 4 hours to help combat any allergic reaction. They were also giving me zofran as often as possible to help with the nausea. I felt sort of a itchy all day, and chalked it up to wearing the same clothes for multiple days without bathing (also, I smelled awful). In retrospect I should have mentioned this to my doc. After the infusion stopped, and just before Joelle was heading home I remember telling the night nurse that the tops of my feet and the backs of my hands were really hot, almost burning. So much so that I couldn’t have them under the sheet. She looked at them and didn’t see anything wrong and didn’t do anything. This was probably mistake #2 (mine being #1). The nausea was also starting to creep back into the picture, even through the zofran, which alarmed everyone to the point where they gave me compazine (I just looked on the wikipedia page for this … an antipsychotic. cripes.) Anyway, back to the hands/feet. The doctor came in to check on me after the nurse had administered the compazine and had the nurse bring up the lights to look at my hands and feet. She looked at my face first and said “oh”, and touched my neck and asked if it felt hot. I said no, just my hands and feet. I looked down at my feet and they were an angry red, with some odd blanching on the insides of them. Hands were similarly tinged. She turned my right arm over and my entire inner forearm and upper arm (except, oddly, my bicep) was bright red. she lifted my shirt and my stomach and chest were red. She sat me up and she and the nurse lift my shirt to expose my back. They said things like “oh, yes…” and “yeah..” It was 2am. She called the oncall dermatologist, woke him up, and had him come over immediately. He did an examination, they used a lot of big words talking about classifications of rashes, he asked me a long list of questions to rule out serum sickness. That’s about all I remember. They gave me more benadryl and I passed out.
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Day 5 (Monday, December 17th)
Day 5 was looking to be another day off, while we waited to see what the rash did, and while the doctors did conference calls between the other study sites and the NIH to decide if I’d receive the 4th dose at all. I was given benadryl every 4 hours via IV throughout the day, and so was incredibly doped up all day. Several more dermatologists came in to see me, with one doing a skin biopsy to determine if it was a drug reaction or something else. The biopsy site bled pretty amazingly (soaking through the bandaid and the hospital gown in about 45 minutes). I guess the whole liver clotting factor concern was well founded.
The doctor came in some time after noon to tell me they’d decided not to give me the 4th dose. I was more than a little relieved, and likely would have opted out had they decided to go ahead. My reactions, contrary to expectations, were getting worse as the trial went on. In fact in most ways I was atypical as far as this study went. The study author (another UCSF doctor) called me later in the day from his vacation to talk to me about things. He said my results might cause them to go back to the drawing board as far as the protocol goes. Not exactly something you want to hear, but if it saves other people from my experiences it’s probably worth it 
The plan was to draw labs the next morning and see how I was doing, possibly leaving Tuesday afternoon.
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Day 6 (Tuesday, December 18th)
I was hopeful I might be going home today, and even though I was still feeling kind of out of it, the headache was gone, the rash was gone. The edema in my feet from all the saline was mostly gone. Everything looked good. The doctor came in to talk about my lab results and told me again that I was an oddity. My white blood cell counts, which had doubled after day 1 and remained stable at my baseline thereafter, had *finally* dropped. It was 2.6 (2.6 x 10^9 white blood cells per liter of blood). Normal is 4 to 11. Below 2 is bad news. This was wonderful news. It means that the 3 treatments got me to where I needed to be, so the lack of the 4th dose wasn’t going to change things much at all.
That said, the sudden drop had the doctors feeling a tiny bit uncomfortable, so they resolved to take more labs in the afternoon and if they were lower, they’d keep me one more night.
They changed their minds at some point during the day, mostly because apparently the last guy to get the thymo went home with a much lower wbc count (much closer to 2) and he turned out ok. I was given a ton (no really) of medication. Ibuprofen and tylenol to last me a decade, calcium carbonate to correct for my lower-the-normal calcium levels, acyclovir and trimethoprim as prophylaxis against viral and bacterial infection, respectively. I was also a little anemic, so they suggested a steak for dinner (I had a big hamburger instead).
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Even walking out of the hospital to the garage was more activity than my body had seen in 6 days. I was originally planning to drive myself home, but that was me just being dumb. Joelle drove me home and made sure I was okay.
I still feel pretty out of it. Feels similar to when I first got my glasses a couple months ago: It feels like the distance from my head to the ground (or the distance from my finger tips to my shoulder, or the distance from my hips to my feet) is different. My body just feels wrong. Partially due to drugs I assume, partially due to being bedridden for almost a week, partially due to losing 7 pounds in 6 days.
Thanks for the visits, those who came, thanks for the emails, those who sent them. It was a rough, rough week, and I definitely couldn’t have made it through without your help. I love my friends.
yay for MMTT.