The floor opened up and I keep falling

Yesterday, I began a new chemotherapy drug combination.

In the days before, I was feeling positive and had a good level of energy. Low, not to the same energy as before chemotherapy, but enough to give me a sense of normalcy amid this storm. It’s like the eye of the hurricane. It may not be a suitable comparison, though. I will get better at this writing thing. I was feeling good, and only the creeping anxieties of the new chemo drug were slowly percolating. Additionally, my eyebrow hair has fallen out, which has added to my self-perception concerns – I feel ugly, and I haven’t quite found a way to style or feel normal without it. I made the mistake of watching those TikTok videos about the red devil drug and its side effects.

Yesterday, we arrived early and had a meeting with the doctor, who reviewed the information and discussed the new side effects, as well as the previous 12 infusions I had with the old combination. With this new drug, he told me to expect that fatigue would creep up faster, decrease appetite, nail bed changes, lose hair if I haven’t lost it already (the arm hair persists!!), and increase nausea and hot flashes. He also noted that I was now able to get one long-lasting growth factor shot instead of the two I was being given – thank goodness! I asked my questions about the chemo port and inquired about what would happen if it didn’t work. In the previous four infusions, the port has caused issues with blood withdrawal. He said that if there was no blood withdrawal, I would need to be assessed and have images taken to see if it was a positional kink or something else, as the port needed to be used. This chemo-drug combination could not be administered via my arm or hand since the chemical is too hazardous – even a small leak could lead to necrosis of the surrounding tissue. Well fuck! Aside from that, I asked my other questions and felt as confident as I could, given the circumstances.

The nurse I was assigned did her best, and we found out that we needed to use the largest needle to access the port; thankfully, it all worked out. I was so relieved because the last thing I wanted was a delay and the increasing stress about how I would respond to the drug. I was marinated with the pre-meds, all my anti-nausea, anti-acids, and steroids, and then I was given immunotherapy and then the red devil drug. The nurse suited up in a bib smock and pulled out two large tubes containing red liquid. She had to manually push the two syringes over 10 minutes, repeatedly checking in on how I was feeling and ensuring no reactions occurred. The most I had was a hot flash. She had me chew on ice as she said this was a way to minimize the likelihood of mouth sores developing, a side effect of the drug I wasn’t aware of, and part of me felt like it was also a distractor task to get my mind off of the drug and onto a the coldness of the ice in my mouth.

After the red drug, I was given another chemotherapy drug for about 45 minutes, longer than typical, again to ensure I was being monitored for any reactions. I went to the bathroom during this, and I peed Gatorade orange. I freaked out and asked the nurse right after I left the bathroom and sought her out; she laughed and grabbed my hand, saying this was a side effect she had forgotten to mention but that I could expect it for the next 24 hours. I couldn’t even take a nap; I was too jittery. Then, finally, she flushed the port, and I could immediately taste the yucky taste in my mouth – bonkers how something fed into my port could have a taste a mere seconds later. I’m in awe of the human body and the horrors that come from existing within it. I got my shot in the arm, and I was ready to go. I was SO relieved that nothing severe happened; I wasn’t whisked away in a stretcher. My biggest fear did not happen. I can count on one hand the number of infusions I have left. I noted the slight stress that set in, at least, as I considered how I would respond, given that I had been given so many things at once. The immunotherapy, the two new chemotherapy drugs, and my shot. I made it a point to hydrate even more in my attempt to flush everything out as much as possible. We left around 1 pm.

After I was given the green light to leave, I checked out and then went in search of food. We decided on Panera Bread, and I tried a new sandwich (the Spicy Fiesta Chicken Sandwich), which hit the spot somewhat. My mom has a saying, “La hambre es canija” – hunger is something else, as in, regardless of how the food tastes, it’s still good because you’re hungry. It was only after the last bites that I regretted it – the acid reflux was setting in. Between hot flashes, I tried to chug more water and eat anything else I could to mitigate the damage that sandwich had done to my stomach.

Once home, I worked for a couple of hours and called it a day. I was extra communicative with my supervisor to let her know some things would fall from my plate due to the symptoms. She was accepting and praised me for my honesty – I am so happy my direct supervisors are incredibly supportive. I took a shower and watched Mamma Mia. The fatigue hit hard around 5 pm. It was severe to the point I had to take slow steps and calculate every single step I needed to do my tasks safely. I was concerned about falling and the delay in my reactions – this distrust in my body wasn’t foreign, but it also wasn’t expected so soon after treatment. My nephew was home, so he was available in the vicinity in case of an emergency. I lay on the couch, feeling so deflated and heavy. My eyes closed in as if I had a weighted mask on them. I loved watching Mamma Mia! – it’s a nice, comforting movie, and when ‘Dancing Queen’ is sung, I burst into tears. I loved it so much.

Once it was done, I had some food – feeling that my stomach could tolerate it. I went to bed at 9:30 pm and didn’t wake up until 7:00 am. I woke up tired and still concerned, as I genuinely couldn’t gauge how I would work or what to expect. This ambiguity is nerve-wracking.

This morning, I had an okay time. I tried my best to pace myself, but it was very present in my delays, just how profound the fatigue was in my bones. I left for the clinic around 1:30 pm to receive my growth factor shot, and after getting it, another wave of fatigue set in. I joked with my mom, ‘Next time you drive.” I felt so tired that I was on the verge of tears. I am glad I made it home safely, but now I am considering asking a friend, or whoever is available, to pick me up from home, take me to the clinic, and then bring me back home. I was genuinely concerned again for my ability. Once home, my brother asked me to complete some impromptu tasks, and I straight up told him no – I was too tired. I managed to take a brief 30-minute nap before returning to work. I finished my work okay, leaving tasks for tomorrow. I washed my face and tried to finish this update. I will be watching a soccer game, but even as I am typing this from the sofa, I may not last. The acid reflux today has been unbearable, and the bone pain paired with fatigue has left me frustrated. I am so proud of myself for being able to work and function as close as possible to a new normal, but I mourn the lack of choice in this situation. I would love to nap; I would love actually to eat what I want right now. The mental dam feels like it’s getting more cracks.

Some things that have brought me joy lately:

• My dear friend who lives in Seattle coming to visit me
• Honoring my body and canceling plans when the bone pain got to be too much
• Getting a nice mocha latte from Lineage
• My warm and cozy blanket
• A delicious croissant

Some things I want:

• Increase hydration
• I would love to eat a hot dog or hamburger soon
• A compression massage tbh

Some things I am looking forward to:

• Sleeping
• My next OT session to work on my upper body strength
• I am seeing a friend on Saturday (hopefully health-willing)

This is my update for now.