Well this will come as a surprise to no one, but chemo sucks. I'm only two days into this, and I feel pretty miserable. But it's also (so far) not as bad as maybe you think either. I don't plan to give a day by day rundown of my treatment going forward, unless something out of the ordinary happens. In fact I may not update this blog much during treatment as I'm guessing this one will cover the mechanics of chemotherapy. But you never know, maybe I'll feel like writing as a way to deal with some of this.
Julie & I had a pretty nice weekend out in Ocean City leading up to treatment. We saw my cousin and her boyfriend (we see them often when in OC), but mostly watched movies, drank beer, and ate poorly. Sort of a last hurrah before treatment. On Sunday we drove back to DC early and spent the day making a huge pot of chicken soup for the week.
I slept pretty good Sunday night, and we got up and did a 5 mile run Monday morning. I showered (showers are a breeze now with almost no hair) and had coffee and breakfast at home, then packed up a bag with my various electronic gadgets, snacks Julie had prepared, a PB&J, some hard candies, and a bottle of water.
The first day of chemo I had the IV line run in the my arm (twice actually, the first time they couldn't hit the vein) then received a 60 minute drip of saline, followed by a 30 minute drip of a steroid that helps keep my kidney clear (that is, it makes me pee a lot), followed by a 30 minute drip of anti nausea medicine. Somewhere during those drips the doctor said he wanted to chat with me soon, and that he'd come by in a bit. I wish he had stopped by at that point because the next drip I received was a 30 minute drip of benadryl.
Benadryl knocks me out. Even when I have to take it at home when my allergies are particularly bad, I take just 1/2 a pill and generally need 30-40 hours after the pill to feel like myself. This 30 minute drip was a big dose going right into my blood stream. The doctor came by after the benadryl drip was over and I was getting another saline flush, and I could barely talk. I was completely out of it. As soon as he left I sent myself text messages of what he had asked me to do and honest to god I had to review those texts when I left for the day because I had no memory of the conversation.
Anyway after the benadryl I received a very small syringe of the bleomycin. That's the "B" in the BEP chemo I'm getting. Bleo (as it's called) can have severe side effects so they give out a test dose first to see I have any reaction. After that syringe is shot into my IV line I get more saline flush, and then the cisplatin.
Cisplatin is the "P" in BEP, as it's a platinum based drug. This is the big one, the drug that causes most of the nausea, fatigue, and hair loss. It's an hour long drip followed by an hour long saline flush. Also I should note I'm recounting all of this as best I can because in reality I was in and out of consciousness for most of the day after that benadryl drip. Most of the day was passed in a buoyant state, like I was floating on water. I'd become vaguely aware of the beeping of the machine my drip ran through noting that a bag was empty, which would alert the nurses to that it was time to change the bags. I somehow managed to eat, drink, and get disconnected to go to the bathroom throughout the day.
After Cisplatin came Etoposide, the "E" in BEP. Again an hour long drip followed by a flush, although I think just 30 minutes this time. The Etoposide was followed by the real dose of Bleomycin (since I'd had no reaction after the small dose hours earlier) and then a 30 minute flush. That was it for day one, I'd arrived about 8:30 in the morning and left about 4 pm.
I had to drop off some paperwork at the office although I was loath to do so. I'd mostly come out of the benadryl coma, but I wasn't in great shape. Still I did drop off the documents and stopped by to say hello to my coworkers. From there I went home and ate soup & toast (had trouble swallowing) and slept until Julie got home, then took the first of my anti nausea pills as I could feel the chemo effects coming on. I told Julie about the trouble I had swallowing bread and she told me she had read about that as a side effect of chemo. No more PB&Js for lunch as it was the bread that was hardest for me to get down. I went to bed early and slept pretty well until about 3:30 am. Once up I took another pill and then read on the couch for a while before falling asleep again.
At 5 am the alarm went off and by 5:30 Julie, Bica, and I were out for our morning run. I didn't feel too bad and hadn't experience any vomiting or diarrhea so we didn't shave the run back too much. 3 miles instead of our normal 5, I was feeling a little fatigued and winded (I assume from the Bleo which can have negative pulmonary effects).
After a shower, coffee, and breakfast I again made it to the doctors at about 8:30 feeling ok. My original IV port was still in my arm (the last thing I received on Monday was an anti-coagulant to keep the port from sealing) so they just had to connect a 60 minute saline drip and the day began. Without any benadryl I was wide away for the day and spend my time watching a not very good movie, reading a few books, and listening to music. It's very boring, and even with all the saline drips you still get pretty thirsty, so you spend a lot of time snacking, drinking water, and peeing. Everyone is very nice, the chairs are set up in an L shape against the walls of the room, the nurses have station opposite the L and in the middle of the room are various saline bags, drip lines, gauze, tape, needles, and other supplies.
I got the steroid again after the drip, but from there I received the Cisplain, another 60 minute drip. At this point it was already noon so I ate some grapes Julie had packed for me followed by a cold bowl of the chicken soup we'd made Sunday (I have a soup thermos now, so no more cold soup). Still it wasn't bad cold, and it was easy on my stomach.
Next up was the Etoposide. After the Etoposide I had another 60 minute saline flush, but needed to use the restroom. When I got back the port had sealed up, so I had to have that one removed and a new IV line put in. That set me back quite a bit, I was on course to be out of there by 2:30 but ended up not leaving until 3:45.
Although I looked better today, I felt a lot worse. Still no severe nausea, but I started hiccuping around noon and it was really unpleasant. These were not the cute "I had too much champagne" hiccups, but more like "any one of these hiccups could turn exorcist ugly" hiccups. They've come & gone several times since, I just got over a bout a few minutes ago.
Julie stopped by to see me this morning, I know it pained her not to be there for the first day but I'm glad she wasn't. She'd have only seen me sleeping. My primary care doctor (also in the same building) stopped by to say hello as well.
I also continue to receive calls & emails from my urologist who is (as I've mentioned before) just a hell of a guy. The most empathetic doctor of the bunch, I know he's really upset that none of the other treatments took care of this in 2010 or 2011. I mentioned in an earlier post that he had done all he could to get the slides from my original surgery for me on that Monday we were flying to Indianapolis, but I don't think I ever followed up to note that he did come through for me. At 3 pm on the Monday we flew out I was metroing to GW to meet with the person in pathology to pick up the slides, and I was able to deliver those to Dr Einhorn prior to my meeting. I won't ever forget how he came through for me.
Anyway I was told to stay away from fried, fatty foods during chemo. So today on my way home I promptly headed to a burger joint (Ollies Trollies, for those of you in DC) and got a double cheeseburger and fries. Took me about 35 seconds to eat it. Apparently nausea from chemo is just like nausea from radiation. Makes me hungry and sick at the same time. For my penance, I took Bica on a walk immediately after eating up to TD bank, since they allow dogs inside. I needed to deposit a check and Bica loves the attention and dog treats she gets inside the bank.
I expect this to only get worse this week, and then to slowly start to feel better over the next two weeks before treatment begins again. Of course I don't know how much the Bleo I get every Monday will make me feel, so perhaps I won't get much of a break on feeling lousy.
I will try to post at least once a week, but I'm not sure how I'll feel or if I'll have anything worth posting. I've received lots of cards and a few gifts, I hope you all know how much those mean to me. It might be a while before thank you cards are sent out, but they will be sent.