It’s milkshake day! The cold sensitivity hung on pretty long this time. My hands still get spikey when I hold a cold drink, but my mouth and throat are doing better. The frustrating thing is that I also have oral mucositis for which cold foods and treats are recommended. In addition, I am not eating or hydrating enough on Days 1-8, bc I can only have warm food/drink, and I don’t have much of an appetite those days. I plan to ask at my infusion tomorrow if they can give me an IV boost or something to at least get me through the first few days, but I don’t even know how long that would stay in my body. But I figure it’s worth an ask.
So we left off on Cycle 4, Day 2 with my chemo flushing. As I mentioned, I had little to no appetite Days 1-8. The things that I could make myself eat or drink were a cup of bone or miso broth, some crackers, a peanut butter foldover, a cup of decaf Earl Grey tea, a cup of peppermint tea. By Day 9, I have a bigger appetite but think kid’s meal appetite. Definitely better than Days 1-8, but still limited. It’s hard for me to eat food that I can barely taste or that has an off-putting taste now. However, I am planning to make some single serve portions of mixed nuts and dried fruit to get some protein and nutrients in. Unfortunately, almonds give me headaches. I love marcona almonds, but they are not currently worth the headache.
The good news is that I have lots of people around me willing to help me get nutrients. My MIL is doing an awesome job of keeping accountable to taking a bite of something and taking a sip of something even when I’m not hungry or thirsty. My sweet friend is there to make any of my culinary desires come to be, as evidenced by her quick action to get me miso broth and kimchi the same day as my last blog post. Another friend was at the ready for milkshake day today. I’m very sad that tomorrow I return to not being able to tolerate cold food or drink, but now I know to expect it to last longer than 5 days (like it had done the first 2-3 cycles). The full cold sensitivity to food didn’t go away until Day 12. Wonk, wonk.
The cold sensitivity to just the general air temperature is hanging on in different forms. Until about day 12, it hurt to breathe in cold air. And by cold air, I mean less than 70degrees. I’m still doing some shivering throughout the day, but I can currently breathe room temp air without pain. And of course, holding cold items is possible but for very short amounts of time. Basically if I have to hold something cold, I pull my sleeve over my hand. I haven’t resorted to keeping gloves in my pocket yet. It is such a bizarre side effect to experience, and I hope after Cycle 12 it doesn’t linger.
The other side effect that ramped up this cycle was hair loss/thinning. When I ran my fingers through my hair, I was getting not clumps, but handfuls of hair that had nowhere to go. I think if we gathered what was sucked up in the vacuum we might be able to make a baby wig. So, I decided to chop off more. It hasn’t necessarily helped with the shedding/hair thinning, but I’m not getting hair wrapped around my fingers anymore. There was a bit of trepidation for me around getting my hair shorter. But I’m also just feeling really practical about it. I am losing more than I thought I would with this specific chemo regimen, but I am also okay with it being part of the process. I’ll take hair loss over loss of taste any day…but apparently I get both! It feels weird to have such short hair. I’ve somewhat gotten used to it, but immediately after the cut, it felt like I had something put on my head not shorter hair. It almost felt like I had on a newsboy cap or a beanie or something. It was a bizarre feeling. Having hair above my ears is something I haven’t experienced since I was 3years old(yes, I was a baldy until 2.5yrs). But I’m adjusting. No one has whispered and pointed in front of me yet, so I must not look too shocking to others.
Days 7-14 have been busy. I’ve taken a nap each day, except for today. But I had something almost every day. Day 7: primary doc appt and 5 vials of blood drawn for upcoming cardiology appt. Day 8: haircut AND the kids’ Exhibition night, and a lovely yet tiring dinner celebration Day 9: prep for in-laws arrival, recover from Day 8. Day 10: In-laws arrival, and dinner out. And very thankful they are here. Day 11: Labs drawn for upcoming infusion, and watching clevercolette ice skate for a bit. Day 12: brunch out of the house. Day 13: A trip to Target with little miss shopper clevercolette, and family game time Day 14: Dermatology appt to make sure no new cancerous moles(none found, a few to watch) and for some chemo scalp irritation advice. Laundry room/my “office” clean up. cleverwilliam’s 504 meeting. And more family game time. PHEW! It may not seem like a lot, but I had to prioritize where to spend my energy, especially knowing I’ll be down and out Days 1-6. If you are in the chronic illness or disability world, you will know the concepts of spoons. I did a good job of recognizing how many spoons I had and using my spoons Day 7-14.
It’s 1:09am on Cycle 5, Day 1. I’m still suffering from the delusion that if I don’t go to sleep, infusion time won’t come. Alas, in 8.5 hours, I’ll be hooked up to my meds. Meds that are life-saving but that are going to have me descend into the abyss of increased chemo side effects: that damn chemo brain fog, the fatigue, the cold sensitivity, the GI issues, the neuropathy, etc… They aren’t the worst they can be, but they are enough to dread every other week. I’m grateful: for my caretakers, for my husband and his privilege to have a supportive company which allows him to support me and our kiddos, for my friends who check in on me but that also don’t require a quick response, a long response, or a response at all, for my friends who are experienced in chemo patient support and keep me accountable and do whatever they can to support specific needs/requests, for all that have been sending their prayers, good vibes, manifestations, and words of support.
Onward…
