I’m somewhat emerging from the fog today, Day 7. My fatigue is definitely better than Days 4, 5, and 6, but I’m starting to wonder if my current level of fatigue is a new normal.
On Day 4 I had my appointment with my medical oncologist, Dr. V. As I’ve mentioned before, she’s a pretty good fit for me. She came in the room, sat down on her wheeled chair, and slid right up to my knees as I sat on the patient bed/chair. She touched my knee as we went over how the first two cycles went. She was privy to most of the events, she just needed me to fill in some of the finer details. She wasn’t aware of the difficulty with the port, but also seemed relatively unconcerned. She said it just happens with some patients. We did get to clarify that finding the source of the flushing/rash that I have on Day 2 is of less concern than preventing it or treating it. We decided Zyrtec daily, but Benadryl on Day 2 if and until that doesn’t work. It’s really hard for my brain to trust that finding the specific source doesn’t matter as much in this circumstance. I kind of get it though, because if I pinpointed it to a specific chemo med, maybe that would change my regimen or maybe my brain would play tricks on me with the infusions. So for now, I am sitting in knowing that Benadryl has seemed to be enough thus far, while trying to not freak out that I’m going to go into anaphylaxis.
Two notes to come out of this appointment: 1) I will continue on blood thinners for the next 6mos. It is possible that my implanted birth control and chemo/cancer got together to make a clot, but I am not currently willing to remove my implant due to what a drastic difference it made in my PMDD symptoms. I do not want to be that low again, and definitely not throughout this treatment. I will reconsider if it causes more problems. 2) I have oral thrush, so she put me on an anti-fungal tablet for 5 days. My pharmacist called quite alarmed and hesitant to fill the prescription, because there is a critical interaction between that med and Zofran, so I promised I’d stay off Zofran for the duration of the anti-fungal. Oral thrush looks and feels gross on the tongue. I don’t have painful sores, just a little bit of stinging. However, I am unable to taste anything really. There is flavor but there is no depth of flavor. I’m really hoping the medicine helps, because it is incredibly difficult to get my nutrients and calories when I can’t taste anything, my stomach hurts, and everything has to be warm. I could chug down a nutritional shake, but that’s only when I can have cold items. Due to the gastrointestinal disturbances and other symptoms, I have lost weight since my surgery and at an increased rate since I started chemo, however, I am very neutral about that loss. If it continues at the current rate, I’m sure there will be a dietician referral. It is a whole other conversation to have when it comes to my mentality on the health of weight-loss, intentional or not, under normal circumstances, so understandably, I haven’t fully wrapped my mind around it in the context of cancer treatment. I suppose in both circumstances my general sentiment is proceed with caution.
Back to my appointment, one moment that I felt affirmed was when we discussed that I am experiencing all the things but at a tolerable level, and that with chemo there is just a certain level of discomfort to be expected. I said “Yes, I just posted on my blog about that—A Certain Level of Ick.” So yes, I’ve had my PE, rash, and port setbacks, but what I am experiencing isn’t alarming or out of the norm. She said I seem to have a good attitude and am tolerating it all well. While I am not looking forward to the next 5 months of this certain level of ick and more disruptions, I do feel like I can handle it. I’m sure there are oncologists that I might vibe better with on a teamwork and latest research level, but Dr. V is good at understanding my perspective and answering my questions. A la Baymax, I am satisfied with my care.
Day 4 is usually my crash day. I sleep most of the day. This time it definitely could have been that day, but I pushed through the fatigue, that, retrospectively, probably set me back a bit. I slept for a bit in the morning, but also felt I needed to be at the ready for my 3pm appointment, so I stayed still more than slept. After my 3pm appt, we did a little 70th bday celebration for my mom over Zoom with my siblings. I believe it was much appreciated and very special to her. Then our plan was to get out to the desert for Spring Break week. I was pretty darn useless. My brain was scattered, and it took an immense amount of intention to make my body move. It was difficult to watch as Colette, William, Jonathan, and my mom tried to get the car all packed up and ready to go. I am usually the one that leads that charge, so being benched and accepting that I was benched was a struggle. Eventually, we all made it into Loki for his first voyage to our home in the desert.
Day 5 was my bonus crash day. My body was very angry that I did not take Day 4 off completely. I was uncomfortable and exhausted. I was a bit lost in time, but also aware that the next day was Easter. It’s been easier as the kids get older not to put so much effort into making the day go according to tradition, but the level of my ability to create a typical LaCour Easter was 0-1. I made an online pick up Target order to have some things for Jonathan to lay out on the counter (not even in containers). Chocolates, sidewalk chalk, bubbles, and Pokemon cards were the best I could do. The traditional bathing suit happened for #cleverwilliam but #clevercolette got stuck with only bikini bottoms. Toothbrushes and other outdoor-focused activities and items didn’t make the cut this year. Aside from that I moved from bed to couch uncomfortably throughout the day. I tried to eat food, but as I said, the thrush on my tongue makes me unable to actually taste food. When you can’t taste food, and you are putting it on an upset stomach, eating is quite uninspiring. I’m not even one to love food, as I’ve mentioned before, but it’s been very difficult to nourish myself with food this week. Remembering back to Day 5, it feels like somewhat of a lost day. I think I was in a daze when I wasn’t asleep, so maybe I’m absolved of culpability for anything I did or said that day?
Day 6, He is risen, me not so much. There was no pretending that Easter this year could be anything like our typical celebration. My energy level was low. My stomach was bloated, gassy, acidic, and whatever other symptom you want to add in there. I couldn’t taste food very well. Nonetheless, we managed to eat our resurrection crescent rolls for breakfast, provide an egg hunt for the kiddos, eat smoked pork shoulder and deviled eggs, dye eggs (usually happens the night before, not this year), and have an egg battle. All of those things were done with as much enthusiasm as I could muster, which was very little. We didn’t force any of it. We followed the kids’ leads and asked what they wanted to include and help make happen. #cleverwilliam woke up excited about the resurrection rolls, and thankfully I had put the crescent rolls and marshmallows in my instacart order the day before to make sure that could happen. Their expectations had been set with Easter baskets this year. #cleverwilliam also decided he wanted an egg hunt, and I had prepared for that as well, thanks to a local Girl Scout troop fundraiser selling filled eggs. #clevercolette did the hiding. #cleverwilliam did the hunting. Then, they switched. I somehow managed to learn how to play a game of Pokemon TCG with #cleverwilliam Time slipped away from us, so egg dying didn’t even start until 8pm. We watched an episode of The Amazing Race while the eggs dried, then at 9:45 we were battling. It was a very short battle this year. Two eggs each, and Jonathan had the egg of all eggs that suffered no damage. It was another day taken at a very different pace and with a very different attitude than I am used to, but it ended up okay. It’s not something that I wish to make a tradition, but I accept it for what it was: LaCour Easter 2024 The One Where Lacey Has Cancer.
Onward.