So, I’m hanging in there, some days by a thread. Chemo is no joke. I mean, I knew I would have fatigue and nausea, but I don’t think anything could have prepared me for the other lovely side effects that would come along as well.
I am doing a chemo regimen that is specific to colorectal cancer, known by several cute names, including Xelox and Capox. It is a combo of two different poisons, given in rounds that are 3 weeks long. On Day 1 of the cycle, I go into the infusion center at the hospital and get my port accessed. The first time it was accessed was super painful for a few seconds, as the nurse jabbed the 18 gauge needle through my skin and into the rubber interior of the port. After that I got a prescription lidocaine cream to put on the port site about 30 minutes before getting to the infusion center. The subsequent times it didn’t hurt AT ALL! Score one point for me. However, almost all of the remaining points will go to chemo, as you will see (it doesn’t play fair). After the port is accessed, the nurse draws labs and sends them off. If your blood counts are too low, they may delay your chemo for a week or two. This hasn’t happened yet to me, and all labs have looked good (I guess that’s another point for me). Then the provider (my oncologist or the PA) comes in and sees how you’re doing. The first visit was just going over potential side effects etc, what to expect. Once the labs come back and they look good, they get the go-ahead to start the infusion. The medication is oxaliplatin (the “ox” in Xelox/Capox), and it is given over a 2-hour time frame. Chemo medication is toxic, obviously, so the nurses don full PPE when handling it, so they don’t get exposed to it inadvertently. While it’s infusing, I watch a movie on my tablet, watch tv, or take a nap. The infusion center is super nice with private rooms with big windows. When the infusion is done, the IV pump beeps an alarm, and I ring for the nurse to let her know it’s done. Then I go on my merry way to await what is to come. This was me as I got my first infusion:
The other chemo medication is called Xeloda, or capecitabine (generic), which makes up the front part of the Xelox/Capox acronym. It is an oral medication, what I affectionately call my “poison pills”. I have to take 4 large pills twice a day. I start the night of the infusion, and take it for 14 days. Then I get a week off with no chemo, then on Day 22 go back to the infusion center and start all over again.
Now, for the really unpleasant part (at least for me, you probably won’t mind reading it). The side effects. The most prominent one which starts right away (while I’m still getting the infusion) is cold sensitivity. Doesn’t sound like much, but it is debilitating. Imagine not being able to touch anything cold with your hands, otherwise you get a sensation of instant frostbite, like your hand is being zapped by an internal lightning bolt. Kinda like touching liquid nitrogen that is used to freeze warts. While getting the infusion I usually have to use the bathroom halfway through, and touching the cold IV pole to drag it along with me is electrifying. I have to use the sleeve of my sweatshirt pulled down over my hand to touch it. Now, think of everything in your day to day life that is cold (or even slightly cold). Anything in the fridge: off limits unless wearing winter gloves and even then it is unbearable. Forget taking anything out of the freezer. The stainless steel handle of the oven or dishwasher. The metal drawer pulls in the kitchen. The doorknobs. The wooden banister on our stairway (which apparently I run my hand along when I go down the stairs). Any drink, in a cup, can, bottle. Dishes taken from the clean dishwasher to be put away, especially silverware. The flush handle of the toilet. An egg taken from the fridge. And not only is the cold sensitivity in your hands, but in the skin of your entire body. The air conditioner cannot blow on your face in the car, that feels excruciating, even with the heat wave we have had this summer. It feels like instant pain/burning/freezing. But the real kicker is this: The worst location for the cold sensitivity is in your mouth and throat. So no cold drinks, or even room temperature. Otherwise you get the simultaneous sensation of your throat swelling shut and being stabbed in the throat with knives. It is not a pleasant feeling. But you’re thirsty, because you aren’t drinking anything except hot chocolate, due to the cold sensitivity. So you yearn for a nice cold lemonade, but you can’t have it. Therefore, you get dehydrated pretty quickly. Add in nausea (which anti-nausea meds zofran and compazine were not even touching) and an absolute lack of appetite, and 4 days into my first round I was absolutely miserable and had to go to the ER for fluids. The fluids didn’t seem to help (although they probably did?), and I went home to wallow in my misery yet again. That first round I was probably eating less than 200 calories a day for the first week, forcing myself to eat a corner of a graham cracker and loathing every minute of it. I lost 5 pounds in 4 days. I laid on the couch for most of the first week. I checked in with my online colon cancer support group for any suggestions. For some, the cold sensitivity is minor, but I couldn’t tolerate even room temperature liquids until probably the third week. Based on suggestions from others who had been through it, and some research on my own, I called the oncologist’s office and asked for a few things to be changed for the second cycle. We’ll get to that in a minute.
Some of the other side effects are also horrendous. “First bite pain” is a weird phenomenon that causes extreme pain (for lack of a better term) when you first take a bite of something. It’s like someone shooting a lightning bolt through the salivary glands in the back of your jaw on each side. It hits you so suddenly, and it surprises me every time (you’d think I’d learn to anticipate it). The pain is super intense, and dissipates after about 10-15 seconds. The first time I ate after my first infusion, I took a bite and froze instantly with the pain. My teenage daughter looked at me with concern. “Are you going to throw up?” All I could do is shake my head no, I couldn’t even speak to tell her what was happening. The first bite pain gets gradually better over time, and goes away completely in about a week. Yowzers.
Another major side effect is neuropathy. Tingling and pain in the fingers and toes. This is one of the reasons I haven’t written a blog post until now…it hurts to type. The neuropathy is triggered by cold sensitivity. I have to run my hands under hot water to make them feel temporarily better. It takes our hot water about 30 seconds to get hot once you turn it on at the faucet, so I am constantly turning the faucet on well before I need it. Yes, I’m wasting water over here. So sue me. I have to keep my feet in socks and slippers at all times to keep the neuropathy tolerable. Otherwise it is super painful to walk. The pain is real! For a few days after the infusion, even the seams from my pants rubbing on my skin hurt my legs. My nostrils feel tingly and they hurt when I blow my nose.
I also got a weird side effect during the first round that my oncologist had not seen before. Starting on Day 8, my eyes really hurt when I moved them. Like looking side to side was painful in my eye muscles. I couldn’t focus when my daughter would scroll through Netflix looking for a show, I had to close my eyes. I got a headache because it was hard to focus my eyes. And of course, being the medical professional that I am, and having access to information about drugs, I found out that oxaliplatin can cause optic neuritis. Yikes! An inflammation of the optic nerves. My symptoms were spot on for optic neuritis. I called my oncologist and although it’s not something they had dealt with in any of their patients, they sent me to an eye doctor. Thankfully, he said my optic nerves looked normal. By the time I saw the eye doctor, the symptoms had pretty much gone away, but it made me feel a lot less anxious knowing that there was no damage to my eyes. I kinda need them.
And last but not least, everything tastes bad. Everything. I put something in my mouth and chew it, and it tastes almost normal for a second, but quickly starts tasting like garbage. Drinks taste like dishwater. This is inconvenient, especially if you are nauseous. Ugh. My mouth feels like it is burned, like I’ve been careless with hot pizza. And there is a film in my mouth that never goes away. Oh how I long to have something taste good again! I’m told it will get back to normal once I am done with chemo.
I have to do 4 rounds of this, which I know could be worse, but it is still pretty bad. Misery has its degrees. I am currently on Day 9 of my third round, one more to go! Some things were changed after the first round, and the second and third rounds have gone so much better than the first (which felt like a total disaster). Starting with the second round, they reduced my oxaliplatin dose by 20%. As my oncologist explained, I must metabolize it more slowly than other people, since I had such severe side effects at the full dose. So reducing the dose is in effect giving me the same amount of medication that other people get from the full dose. The second thing they added was an infusion of a med called Emend, right before the oxaliplatin infusion. This is an anti-nausea med. Bring it on, the more the merrier! Thirdly, I am now pre-scheduled to get fluids two days after infusion. I don’t know if it really makes a difference, but it certainly can’t hurt. I go into the infusion center and they give me a liter of fluids through my port in about an hour. Finally, they added olanzapine. It is an anti-psychotic drug that has the weird benefit of helping cancer patients with nausea! It also increases appetite, which was huge for me. I take it at bedtime starting the night before infusion. It makes you sleepy, so has the added benefit of helping me sleep. Olanzapine has been a life-saver! I take it every night until I’m done with the two weeks of Xeloda. I tried going off it earlier than that and I was much more nauseous the next day, so I know it is working.
So, although I’m limping along this summer with chemo, I am finally staring down the last round and looking forward to feeling better! Some of the side effects, notably the neuropathy, could be permanent, but should improve over time. One notable side effect that DOES NOT occur with this regimen is hair loss, so score one more point for me. After my last round of chemo I am going to have a CT scan, and then follow up with my surgeon to discuss reversing my ileostomy in the fall. After the reversal surgery, I am potentially in for a whole ‘nother experience, as many people have bowel control problems for a period of time (or permanently). I will cross that bridge when I come to it. For now I am seeing the light at the end of the tunnel, and ready to feel better.
If you are 45 or older, GET YOUR COLONOSCOPY!
PS. Update on the kidney stone: I passed it! Although I never saw it. I felt like I had a grain of sand in my urethra for about a week, then I felt normal again. It was really hard to push fluids since I couldn’t drink anything cold, but the little bugger is gone!
Life in the Outside Lane 