I wrote this late last night after a LONG day, so apologies for any mismatched tenses or improper phrases. I’m also exhausted today, so if you don’t hear back from me for a while, further apologies in advance! As a spoiler update, I’m still in the hospital waiting for yet another test, but it looks like I’m doing okay.
—————————————————————————————————————————————-This was not my day. It seems like it should’ve been—I got great news at my appointment: my cancer responded really well to the immunotherapy and is significantly decreased. My chemo protocol stays the same (I know because I asked 3 times in case she changed her mind), but seeing how much of it was gone from my body was incredible, and such a relief. SCIENCE, guys. It’s crazy. So I went into chemo pretty excited—while my cancer responded well to immunotherapy, the rest of my body didn’t love it, and we’ve been closely monitoring chest and lung pains for weeks, with some really intense chest pains this weekend particularly. But most people on ABVD and AVD (the one I started today) have typical (read: rough) chemo symptoms they need to mitigate, but there’s less subjective monitoring with big consequences. In chemo, you take your temperature if you feel sick and you keep in touch with your care team about symptom management. I was relieved to hopefully enter a phase with less vigilance and fewer scary possibilities. I was ready to do this infusion, go home, take a medical gummy, watch some Gilmore Girls and just get some rest.
If you’ve spent any number of consecutive days with me, though, you’ll know that somehow things just go wrong around me. The phrase “this never happens” comes up a lot—and admittedly, sometimes this is due to something I did, some weird situation of my own creation. Sometimes it’s the day of a move and I haven’t packed a single box, I really just want to eat Wendy’s and look I can drive there because of the rental van, we only have the moving van for a few hours and didn’t really ask people to help us move, and suddenly I’m asking a stranger on the street to please parallel park the van holding 1/3 (so far) of my belongings for me because did you know those vans don’t really have rear view mirrors? What is that? IT’S FINE. I can admit that that was on me…and this is the most mild example I have. And I think we all know that some guy I was sort of seeing was embroiled in that somehow. I’m an impulsive person and some of these situations are funny and self-inflicted. But cancer has brought the other category to the forefront: just random, unusual accidents involving machine and human error that are in no way my fault.
Back to today, with that in mind: we went into the infusion room feeling pretty good—I had my favorite infusion nurse, J, and a private room. The office was running behind, because Mondays can be a little crazy, but we were fine with it. The lineup for the infusion is a set of “pre-drugs” which in this round includes several long-acting anti-nausea meds. Then I get three chemo drugs of varying time requirements—something like 20 minutes, 10, and then an hour for the last one. Partway through the last one, I started having shortness of breath and trouble swallowing. When your chest is all inflamed, this isn’t a shocking response, but they stopped for a bit, gave me some fluid and did some some deep breathing, then kept going. No big deal. A different nurse, not J, came in to restart the drug. By now there were lots of tubes from the many drugs and salines, and J came in and explained which did what, and then the new girl did some cleaning up of the tubes so they were less confusing. Fine, whatever. She restarted the drug, we turned Netflix back on, and I settled back in.
And then I realized my arm was kind of wet. And then I realized there was blood on said arm. In a brief out-of-body moment I wondered if someone spilled some blood? Whose blood could this be? Then I realized it was MY blood, obviously. It was just pouring out of my port, pooling in my lap, getting on the floor, the bed, and on my clothes. Then a lot of things happened at once. I’d love to say that Nico and my mom calmly handled this admittedly horrifying sight. Instead they leapt up and said things like “what’s happening?? (as if this was some secret crazy part of the protocol I’d kept as a secret surprise from them) what do we do??” and I yelled instructions to pull the nurse chord, go find a nurse, and when those instructions didn’t seem to inspire action I just loudly but clearly yelled, “We have a lot of blood and need help right now please!” The area is small, so the nurse crew was there and fixing things fast. I made my family members leave the room because I realized they were panicking and this wouldn’t get less scary for a bit and I needed to sit quietly while things got fixed. The more I freaked out, the more blood there would be, so I tried to just sit there. Working in a trauma unit for 18 months helped enormously. Their response was totally understandable—it was scary as hell and this is not an “omg let me tell you what my family members did” post, it’s just literally what happened. I think my mom not going into hysterics while her child had blood pouring out of her was pretty impressive. (Note: Nico would like to add that when he eventually took action, he ran down the hall with his laptop in his hand yelling “can somebody help us??” which I don’t remember because I was busy not panicking, but I definitely believe.)
So then there’s a whole “chemo cleanup” protocol—which is used so rarely that the nurses seemed surprised by its contents. Because this never happens! We figured out that the new nurse had continued the drug administration, but removed the adjoining tube meant to test blood return occasionally, while somehow also leaving the valve of that now-empty side turned to an open setting by accident. So the drug was going in one tube, and the drug-infused blood was coming out of the opening for the old adjoining portion..spilling contaminated blood everywhere. Awesome! But luckily it all just got on the floor, the bed, and me, the person who needs to be contaminated anyway—at one point I looked at my bloody hands and thought “I hope I don’t have any small cuts that this could get in” and realized OH RIGHT IT’S ALREADY IN BECAUSE WE’RE INFUSING IT INTO MY BLOOD. I got a good laugh about that from the nurses (“yeah that ship has sailed” they joked) as they put on gowns and gloves to handle it—all except J, a selfless superwoman nurse who just got in there even when I was like shouldn’t you have a gown?? She was cool headed and calming and amazing.
Eventually the blood gets cleaned up, my habit of wearing all black is endlessly handy and you couldn’t see anything on me, I just seemed wet..until I sat on the new sheets and they also soaked through—but other than the blood stains when I sat down it was like nothing at all had happened. Then we finish off the infusion and start to get ready to leave. I’m not feeling great at this point. In the moment of crisis I was solid, but afterward I was feeling kind of light headed from all the drugs, my blood pressure was low, and my chest was tight and my breath short again. Possibly all from stress, but chest pains are scary in general and it’s hard to know.
We went home and I showered to relax (and you know, get that
blood stuff off of me) but raising my arms to wash my hair made the pain worse..and if you’re going to go to the ER, you want to go at 8 PM and not midnight. So I consulted a close doctor friend to make sure my instinct was correct, and then called my oncologist on the way to the ER.
Luckily at the ER I got triaged by another amazing nurse who immediately made sure I got where I needed to be. At this point, I was only worried about inflammation from immunotherapy. But they start doing exams in the ER and quickly ask about blood clot history. I am terrified of blood clots, but it was the one time I actually wasn’t thinking about them..so I thought they’d finally caught me on my heels and attacked. Because that’s how it works—vigilance is like a life condom, right? Science.
So they do some tests and we knew fairly soon from an ultrasound that there’s no fluid around my heart (an immunotherapy risk, also probably the biggest concern based on symptoms) and no major blood clot in my heart (great!). Then we move on to x-rays, a CT, and bloodwork. After a few hours, the male supervising resident comes in and says I’m all cleared on the blood clots, he talked to my oncologist, and we can go home. Excellent! Home! But then the attending comes in to give final sign off, and she explains that while they’re pretty sure, there was one test on the CT that wasn’t done properly and could have indicated a small blood clot in an area away from my heart and lungs, but since it didn’t come out they couldn’t 100% rule it out. Oh, and a blood test that is an indicator (though not a perfect one) for a blood clot came back slightly elevated, but she thought cancer alone could cause that. But again, no one had shared that info earlier. I alreaey had my IV out and my discharge papers in hand. She is providing a lot more information, is an attending and not a resident so has more experience..and she’s a woman. There are SO many studies showing that male doctors don’t really believe women when they describe what’s happening, so even though I’d had good interactions with the guy earlier, I was annoyed that he hadn’t explained the full story. So suddenly there’s a faulty CT and an elevated blood test in the mix? Cool.
I was going to do whatever my oncologist wanted—I don’t really understand how significant or not the error in the CT was, but assumed she did and had been given all the details to make an informed decision. I said as long as they’d been up front with her, I was fine..but it’s clear from the call I overheard at 1:30 AM after this talk that they had not. And I feel terrible that she’s gotten a million calls, but all he had to do was give her actual information instead of what he decided was the conclusion of that information.
Long story long, I’m at Northwestern in a private ER room, probably totally fine and without even an IV in, it’s 3:30 AM and I’m honestly just wishing for a bed in the cancer ward so I can choose what I want for breakfast (note from Future Nora: I still don’t have a bed out of the ER). I’ll get an echocardiogram sometime tomorrow..and then I’ll probably go home and revisit my evening plans, just at noon a day later. Same thing.
Welcome to my life, with or without cancer. Never boring! I’ll post again soon so everyone knows I didn’t crash all of the medical devices at Northwestern. Oh and that I’m fine, etc.The mama and me after the super fun blood incident. Nico cropped any evidence out of the picture, which was a classy move. My chest is all red from the tape they use over my port when it’s accessed–my skin does not appreciate it.