In my first cycle, Days 6-9 were headache days. This time I seem to be having GI issue days. While the GI issues aren’t keeping me constantly in the bathroom, I am having bouts of bloating, cramping, and gas that sometimes just dissipate or sometimes escalate into a bathroom run. Yep, you’re here for all the gory details. Anyway, at this point I’m unsure what level of ick is to be tolerated and what level is to be medicated. I don’t really feel like medication is necessary for the GI issues. They are definitely lowering my appetite, but they aren’t dehydrating me. It’s mostly uncomfortable bouts throughout the day. Staying laying down or sitting seems to keep them at bay until I eat something. So, is that the solution? Is that to be expected? I just need to rest and let those things pass? The medications I have or have been cleared to take don’t really address what I’m feeling. Of course, I will call tomorrow and inquire if there are options. At the very least, I’d like to get cleared for a probiotic if possible. All that to say…there is a certain level of ick that comes with this process. Here are the things I have experienced thus far:
Nausea: not vomiting, but walking around makes it worse. I do around the clock Zofran (3x/day) on Days 2 and 3. This week I did 2x/day on Day 4. That doesn’t take away all of the nausea feeling, but it’s enough to not make me vomit or feel that it is imminent. By Day 5, unmedicated, it’s kind of constant background noise, so I don’t medicate.
Sore mouth/tongue: doesn’t hurt to eat or drink, but I can feel a little constant sting. I continue to do my mouthwash, but as far as I can tell that’s to make it not get worse, not necessarily to make it all go away.
Fatigue: able walk around, have conversations. Days 1-3 and Days 6-14 there is a general fatigue. My level of exertion is limited, but it’s not impossible. I just have to be kind to myself and accept that my body is doing hard work even when I’m not in motion or being what one would consider productive. Days 3.5-5.5 are stay in bed days, with Day 4 being just a no go. I will be asleep most of the day, conversations are limited, and eating is limited and exhausting on Day 4, which at this point is every other Thursday.
Numbness, tingling, and tremors: constant but not bothersome. Days 1-3 is when I experience all three at the highest and disruptive level. There is not much I can do about that. The only medication that has been proven to provide some relief to those is Duloxetine, which I was already on pre-diagnosis. I take it every day. The tremors are very mild if any after Day 3. Numbness and tingling is mild after Day 3 as well, but it’s at a higher level than tremors. I can feel it as I type, but it’s not painful. It’s more bothersome. I know I can get medication for pain related to numbness and tingling, but I’m not to that point, thank goodness.
Cold Sensitivity: present but managed. Cold sensitivity hasn’t been as bad as many others have reported, but I do know that it can get worse. I’m not needing to wear gloves, scarves, or hats yet. I mostly just feel it Days 1-5 when touching metal, drinking cold liquids (which I avoid those days), touching any thing in the refrigerator, walking on tile, or washing hands with not warm water. I can navigate around those things pretty easily for those days. By Day 5 it seems to subside enough to notice but not wince. This cycle I’m still waiting to be able to hold a cold beverage. I can touch cold without wincing, but if I hold cold that’s when the feeling of tiny cuts takes hold.
First Bite: This is the one of the weirdest things and something I tend to forget about until it gets me. The first bite I take of any food my jaw clamps, locks, and tightens. I just have to chew through it. It’s about 15-30sec of pretty intense pain, but it just magically disappears…until I start eating something else later.
Tastebuds Change: All flavors are very dull to me right now. I had Jonathan and Colette get me a Nothing Bundt Cake bundlet since I can’t have cold deserts, and that’s what I usually go for. However, it just tasted fine. I’m usually a sucker for those. I was warned that my tastebuds will change, and well here I am. I might try some foods I don’t like to see if I can tolerate them with this change. Bring on the yogurt and fruit. Although, I’m fairly confident the fruit isn’t going to work. My tastebuds may have changed but the texture of fruit didn’t. But maybe a fruit smoothie? Gosh, maybe I’ll even see if I can tolerate a green smoothie…
Rash: I’ve shared my experience with the rash that I get on Days 2 and 3. However, with some Lacey persistence, I believe we’ve solved that issue. I have almost titrated off of the pre-diagnosis medication that was causing the issue. I’ll share the whole saga in another post.
I guess the list seems long, but I also guess it could be worse. The thing I was most afraid of was having my head over the toilet most of the days. Knock on wood, that hasn’t been my experience yet. I’m a little nervous for the next cycle given how much tummy instability I’ve been having the past couple days, but I also know the nurses are really good at doing their best to make sure I have enough medication to prevent the nausea and vomiting that comes with chemo. I’m still hoping for a reduced level of ick tomorrow through Sunday. We shall see.
Onward.
UPDATE: It’s Day 8 and I haven’t called the nurse. I’m still having GI issues and low appetite. The GI issues can’t make up their mind though. I woke up around 3am with intense reflux. I had taken my daily med for that around 12am, so this was some intense breakthrough acid. By 5, I finally rummaged around the house to try to find an antacid. I took a Rolaids, and I was back to sleep by 6. Jonathan brought home a chocolate croissant after dropping the kids off at school, and I tried to eat that around 11. I could eat about half. I ate about 12 Pringles around 3, and then around 5:30pm I decided I should try some CBD to see if it helped with my appetite. While I haven’t seemed to have much other benefit from the RSO CBD 25mg that I have taken before, I do think I can attribute being able to finally eat that St. Patrick’s Day reuben that I had to postpone due to GI issues. Jonathan made it up just right, but that tastebud change made it not quite as enjoyable as I had been dreaming of. I think I have to accept that I’m going to need to get calories in without relying on my appetite and knowing that I will have some GI consequence whether it be nausea, cramping, bloating, gas, or reflux. So yeah, that certain level of ick.