I’ve had chemo multiple times now. I’m pretty lucky that it works pretty well on me. I had a doc break down the chemo effectiveness into 4 groups. In 5% of patients, the chemo is very effective. in 45% of patients, the chemo is somewhat effective, but slow acting. In 35% of patients, the chemo keeps the cancer from growing, but does not reduce the size. The remainder, the chemo has no effect.
So, it sounds like I am in the 5%, and yet it’s still horrid. Though not really in the ways I imagined. And yes, every chemo has it’s quirks, but I’ve talked to a fair amount of other patients about what they experience and it seems there are base commonalities. I’ll first talk about the commonalities and then the quirks for the different ones I’ve been put on.
The big issue with chemo that is hard to explain to someone is that it is literally killing you and takes you fairly close to death. Now, that is a little bit of hyperbole, but it is and isn’t. It hit me after my last big round of surgeries what it feels like. To me, when I was in the hospital for weeks, it feels like it takes you down to how you feel 2-3 days after a grueling surgery. After surgery, your body is trying so hard to fight and stay alive that it’s like you’re in a daze, all bodily resources are being utilized to repair the damage. This makes you feel like you’re in a daze and just trying to cope minute by minute. THAT is what chemo feels like, you know that you are on the mend, but your body is in full recovery and it sucks. Just to put it more practically, I will put the TV on, but I can’t usually comprehend what I’m watching, but the noise helps pass the time. It was that way after the surgeries and it is that way for days after chemo.
Nausea is the next big one because the body wants the poison out and your brain just hits you from all sides. For me, I hate throwing up. I do anything to avoid throwing up. However, on chemo I dry-heave anywhere between 5-30 times a day. I’ve only actually puked twice. For me, I feel the nausea is manageable. I do not like the anti-nausea medicine because I feel like all it does is puts you in a weird foggy state and the nausea is still there but it’s dissociated. I can’t work or drive on it, so pass.
The next common factor is Neuropathy, which basically means you feel tingling in fingers and toes. Mine is in the toes and feels mostly like I’ve been walking around in snow for an hours with sneakers and my socks are soaking wet. That feeling when you go inside is very similar to how it feels all the time.
You get lots of Mucous and a terrible taste in the mouth that doesn’t go away. The body is trying to get rid of it every which way it can, so it like having a cold, there’s just lots of mucous. Blowing the nose, clearing the throat, even tearing of the eyes. The chemo will even come out in sweat. I usually have to wash my sheets after the first three days. I honestly want to burn everything in my room after I’m done!
After Months of Chemo (I’m on month 8 of the current treatment) I just am tired of the cycle of being kicked in the teeth, writhing for days, going through recovery where I start walking again, then I finally start feeling better only to be kicked in the teeth again and start the cycle again. I understand why many bail and accept fate. I would do the same if it weren’t working. It’s not really living constantly being sick.
Particularities to the chemos I’ve been on have also been similar because they are based on the same base drugs. I recently learned these base drugs are common among many of the chemo drugs for different cancers. Anyway, the first they put me on was Oxaliplatin. The biggest issue was cold sensitivity. This is especially a problem with eating. And just to elaborate what it feels like, it’s kind of like putting your tongue on a nine volt battery, however, it’s everywhere in the mouth and throat. I nearly had a choking incident eating something that was room temp and it seized in my throat. That was pretty scary. I tried to deal with it by putting my hands in ice and drinking and ice drink during infusion. BUT, that is also terrible. When drinking, the body is revolting against liquids going in, then you are fighting the cold sensitivity that is trying to set in. While the cold treatment was pretty effective, all the drinks I used while doing infusion have likely been ruined for life. I had to change drinks with each infusion and can’t stand them to this day.
My fingers got super raw and sensitive. It got so bad, it hurt to hold a steering wheel. I tried golfing a couple times using gloves for both hands and it was just a miserable experience.
I did not lose hair, but the nausea was way worse than my current chemo. Almost every store caused me to dry heave like crazy. I was hypersensitive to dirty stores and cleaning chemicals used in the stores.
One of the weird side effects that may have been unique to me, is for a day or two after infusion, if I rubbed my eyes, my vision would black out completely for 30 seconds to 1 minutes and then slowly come back. THAT was incredibly freaky, especially the first time.
For Folfox, I’d say the hardest thing has been it destroys my tongue. It’s like the absolute worst time that you’ve chemically burnt your tongue and it’s split. This has happened when I’ve had too much sour or salty treats. But on Chemo, it is 4 times worse and doesn’t get better. It hurts all the time. anything spicy is terrible. I made a mistake and got tacos and thought I put a mild avocado salsa on, but it was mislabeled and was their spicy sauce and I felt like I was going to die it hurt so bad. So I try to stay away from spicy and acidic foods. Salty can be bad in quantity.
The other issue I’ve had with it is more mucous and my nose always bleeding. So every time I blow my nose, it’s like I’ve been punched in the face. This also leads to headaches. So I generally have the worst headaches about 5-7 days after treatment. It only stops bleeding a couple days before the next treatment.
Hair loss. Yeah, I lost a lot of hair. It would just cover my hands in the shower. Thankfully, my hair’s pretty thick and it wasn’t that noticeable. I’m off the main drug that was causing my hair loss, but my hair still just feels weird. I’m not sure if it will ever go back to the way it was. But that may also partly be aging.
I have pretty altered taste. It especially effects artificially flavored and sweetened foods which end up tasting kind of oily and metallic. It’s not pleasant.
I recently had a vision issue like I had on Oxoli, I was coughing during the night and suddenly my vision started to go red. It got more and more red till my vision was completely gone and instead of black it was all blood red. I did everything to stop coughing, changed positions in bed and my vision returned, but, again, freaky.
I think the hardest part for me with all the chemo is that I didn’t need surgery. If it weren’t for the nurse and her completely incorrect treatment, I may have gotten through all this without even surgery. It’s pretty crushing. I still blame myself though for listening to her when I had researched what needed to be done. It just sucks. Even the latest surgery, they were overly aggressive trying to help, but the cancer had spread and so they cut and cut pretty much for no reason. Now that it’s in an inoperable area of the liver, it’s like, hey, let’s keep going with the chemo… great, thanks. I went from being no trusting of medical at all, to overly trusting, back to highly skeptical, which is where I think most should be. Know your plan and find a doc who actually listens. My first oncology doc didn’t listen, but my surgeon did. He ignored the surgeon and me and I went along with “standard” procedures which was NOT the right course specifically for me. My problem is I shut my brain off once I was in the thick of it.
So here I am, having gone through two major rounds of surgery, with the second necessary after the first. I’ve also been through intense radiation, which the techs said was radiating the largest area they’d seen that year, all just to be back on chemo. And chemo being the thing that is working. What do you do?
