A week ago I got out of the hospital after a 4 night incarceration. Awful. I’m sorry that happened to me. What happened to me? I’ll tell you. But if poop things make you gag, catch the next thing I write and leave this space now.
The chemo that I’ve been on has a side effect, diarrhea. Gross. I can’t believe I’m writing this and putting it out there. Ok, so, diarrhea. It happens to most people on this drug. To counteract this, the doctors want you to have Imodium on hand. I, of course, have it on hand with no intention of using it, and if I did use it, I would only ever use it very conservatively. I have always held the belief that if things want/need to come out, they should, why do I want to trap sickness on my insides? How does Imodium even work? I just feel distrust. Once it’s stopped the diarrhea, does it back you up? You see, constipation from chemo is also a thing, and so is mega bloating. So, I don’t want to take something that I worry could back me up. This cancer lady prefers to keep things going and flowing rather than, not.
So, I had chemo on a Wednesday and by Saturday things were not great. I had no real energy and you know, side effects. I took an Imodium either that day or the next, who knows. Anyway, Sunday was the day the jig was up. I couldn’t pretend I was fine anymore. I was in pain. Fuck you stomach pain, fuck you. The night before I had a small fever, maybe, but Sunday was a day of pain and side effects. That must have been the day I took the Imodium, right? Of course, Sunday was my kids birthday, so that will haunt my fragile mental health for a good long while. To ease my wounded heart, Adam assures me that our kid had an amazing birthday weekend. It’s a good thing we had started the festivities Friday after school and kept them going and I had made him a cake. So, after a brief phone conference with my doctor in which Adam spoke and I moaned and writhed in pain in the background, we knew what we had to, of course, do. We called my Mom in to care for our kid and close out his birthday, and I ended up at my preferred ER with a fever and extreme pain.
So, emergency room, you probably know, not my favorite place. This time wasn’t so bad! Once I got out of the waiting room and into the actual ER, they tapped my vein and drew blood to check levels. Some waiting and pain relief later the results were in. Guess who was neutropenic? Hi, it’s me. Having ridden this bull before, I know that this alone gets me 2 nights at least in hospijail. Booooooooo. In the ER they sent me for a CT scan, trying to locate the source of my issues. They also shot me full of drugs so that I wasn’t suffering too much. That part is nice, I like that part. (Drugs while cancerous? Lean in!) Anyway, I somehow had my own private room space for all of this which is a nice treat from being with everybody in a curtain land of hell. After not too long, they found a bed upstairs for me, and my trip to the ER was over and my vacation on the 4th floor was just beginning. But not before the most lovely nighttime oncologist came in to tell me news about the scans they had just taken. Sweet, sweet lady, I can’t say enough good things about this doctor. However, she did not have world’s best news for me, and that made me all kinds of sad. Just a little disease progression, you know, cancer fucking sucks ass.
Up on the 4th floor I moved into my bed quickly. Adam stayed until late, I think, drugs, who knows. I had been warned that I would need to “poop in a hat” (hospital speak for pooping into this plastic thing that sits just inside the toilet, may you never have to do this) as they wanted to see if there was something growing inside my insides that they could identify and destroy. I was concerned about this for so many reasons, most importantly that I thought I was going to be responsible for the part that comes after the actual pooping. The collecting. Fucking, ew. I can not. Ok, true, I have done it before, maybe even a few times, and by now I have perfected my personal collection method. It includes safety or swim goggles, gloves galore, nose plugs meant for swimming and me yelling “pretend you’re on the challenge! you can do this!” and other affirming things, out loud, loudly. I didn’t have any of my supplies here at the hospital, how on earth was I going to do the collecting? My other concern was that I wouldn’t have to do the collection, rather the nurse would, but OMG that’s the most embarrassing, humiliating, horrible thing to know someone is doing. Not anonymous! If my nurse, the one who will take care of me for these 12 hours and then possibly again and again for days, is the one doing this, how will I look her in the eye after?
During this 4 nights, 5 days in the hospital they made me poop in the hat three different times. You guys. Gross gross yuck yuck gross. Luckily, the humiliation I had to suffer was the latter, not the former so I didn’t need my gloves and goggles and nose plugs and affirmations after all. But when my nurse would “collect” I would cower under the covers hiding my face and yelling to my nurse something along the lines of “if we can’t see each other it’s like it’s not happening!” through the bathroom door.
Between all the drugs and activity in my hospital room, and time being meaningless on the inside, my memories are fuzzy. What I do know is that I was hooked up to IVs of all sorts, fluids and broad spectrum antibiotics mostly I think. At some point a doctor comes in and says, “Abby, good news, something grew in one of the samples.” Wait, what? This never happens, they found something?? A cause, a reason, a thing?? All that hat pooping was not in vain my friends, for the fine people at this fine hospital had a diagnosis. Drumroll please … … … I had campylobacter. A food borne illness! Someone, I think not me, I wish I knew who, wrote a song about this fun named bacteria during our “don’t make people sick” lesson in culinary school. I remember it being very funny. So I had campylobacter, what the what!?! Just like the side effects of chemo, the main issue with this particular bacteria is, I think you know, of course you know, it’s diarrhea. You know what’s not great for when you have diarrhea for a reason that’s not chemo but is campylobacter? Imodium. Lols, super glad I took that this one time, the time I had the bacteria wrecking havoc on my insides. Because, of course I did. LOL. Not. How did this happen? We’ll never know. I’m just lucky I guess? Why did this happen? The reason I fell to the camp is because I had no immune system to fight it off, whereas most people exposed would not know or would have some quick diarrhea and then get through it easily. Not neutropenic me!
After locating the source of my pain, the doctors were able to give me an antibiotic that was more targeted and less broad spectrum and after 4 long ass nights in hospijail I was released to my family on the 5th day. THANK GOD.
Now I’ve been home a week. I have to say, my stomach feels significantly better. I’m not going to go so far as to say it’s normal, doing normal things, cause that would be a lie, but I am not in pain like I was. A gift. That’s what that is. Since my homecoming, I’ve been mindfully resting. Not an easy thing to do if you’re me. If I feel good I typically want to do all the things. This time post hospital I don’t want to be tricked (by me) into thinking I feel great and that I can do all the things only to find myself wiped out and feeling shitty. It’s hard to make yourself rest when there are things you want to do and people you want to see and places you want to go. But I know I have to value rest in order to feel my best. Cancer sucks.
Cancer sucks. That will always be facts. Also facts is that today I can say I’ve felt pretty great this week and it’s been some time since that felt true. I am grateful for this feeling. I am grateful to be at home. I am grateful for my family and my doctors and my nurses and my medicines. All of them. In chemo news, we’re gonna switch meds. It makes me nervous to try something new but it’s happening. What I’ve been on isn’t stopping disease enough and it keeps making me super sick. I’m hopeful that the new medicine plan will cause less neutropenia, maybe even no neutropenia, wouldn’t that be dreamy, and more good and great days. I love good and great days.
Hey I just subscribed to you! I cared for my husband when he went through his chemo treatment and it was awful. He’s a retired cartoonist / journalist and he decided to share his chemo story through a cartoon series, he drew the cartoons while going through his chemo. It’s pretty awful at times 😆and if you’re interested here’s a link to his Chemo Freak posts. No. 1 is out this morning. Laughter the best medicine... let’s beat this. I Hope you’re feeling better.
https://open.substack.com/pub/chemofreak/p/ratzo-worlds-n1-influencer?r=2dzpj0&utm_medium=ios&utm_campaign=post
Nobody tells you about all the extra side stuff that you’re going to encounter thanks to your immune system being shot. Glad you wound up with a diagnosis and are on the other end of this particular indignity.