My last entry was on July 29, and so much has happened since then. I finally finished chemotherapy on August 4 and have been recuperating from this whole process now, to be healthy for when radiation therapy starts.
The Sunday before chemotherapy, I went with my family and my boyfriend to a soccer game, and it was an afternoon and incredibly hot. I felt okay, hydrated, and ate the food there (you can’t keep me away from hot dogs!!!). We went up to our seats as it was getting time for the game to start, and as I sat down, an incredible wave of fatigue washed over me. I felt agitated, tired, and out of breath. I didn’t think the simple act of going up the stairs would affect me as badly as it did. My chest tightened, and I instinctively felt the need to take deep breaths as it felt like I couldn’t breathe, and I could not catch a restful breath. Voices sounded muffled, I became incredibly sweaty, I felt an intense pain throughout, I felt nauseous, I felt terrible, and worst of all, my vision was turning black and tunneled. I was afraid, and I didn’t know what was going on. My mom sprang into action and started fanning with the fan lent to us by a lovely woman who saw what was happening. My nephew, his friend, and my boyfriend began to fan me with the paper plates and cold water bottles placed on my neck to cool me down. I came back and tried to get words out, but apparently I hadn’t said anything. I was finally back, slurring my words and trying to make sense of what had happened. This was incredibly scary, and I still don’t have the words or knowledge as to what happened.
Apparently, my lips turned purple, and I had dead eyes and was unresponsive. My mom became concerned when she saw me slump backwards onto my seat. In hindsight, the paramedics should have been called, and they should have assessed me. We didn’t know. Instead, I was escorted inside the big room where I saw the game on the TV instead of outside. I am guessing the heat and humidity were the culprits here, but also the chemotherapy drug. I had gone to games before under treatment and did fine, so why now? I am under the working theory that this new chemo drug really has been doing a number on me, and the combination of the heat and humidity created the perfect storm. I checked my Fitbit, and apparently, my heart rate jumped from 95 beats per minute to over 165 beats per minute. I was so thankful because I was wearing a heart monitor, so the device presumably captured this instance. At least I hope so. I have since returned the monitor and am figuratively pacing back and forth, waiting for the cardiologist’s assessment of the data. I have yet to hear back.
Mentally, I felt terrible; I just ruined the outing. I just ruined their enjoyment of this event. And I felt stifled, like I couldn’t cry. I was reassured I did not ruin anything, but I didn’t feel that. Once home, I showered and slept. Monday was another day – an important day.
Monday was the longest day ever. There was so much waiting again for the chemo and then for lunch. I was so excited! This was finally it, and my friends and family showed up in person and via FaceTime to see me ring the bell.
I was sitting in the chair trying to recuperate from the last chemotherapy infusion (the one that gives intense facial and sinus pain), and I saw the nurses put out the poster that said it was my final chemo session. I started to tear up – this was finally happening. I tried a FaceTime call, and it was semi-successful – we got most of the people on it, and I’m thankful. My brother captured most of it so that I could share the video. I am so blessed to have individuals who shared their love and lifted me from miles away. Their commitment to seeing me at this time was lovely, and I am so thankful for the friendship and care. The nurses congratulated me, and I finally rang that bell. I am horrible at counting, so I’m sure it was more than 3, but I was so happy! This was in the treatment room, where only two people were allowed with me. Having my mom and brother next to me was so lovely. They are the best individuals, and I am glad they were there with me. They were literally with me day in and day out. Their commitment and sacrifice of time and project opportunities in order to care for me have been monumental, and I could not have done this without them. This was a powerful demonstration of unconditional love. Then I walked out to the bigger waiting room and got ready to ring the bell with my friends and family. I was filled with tears and so much love in seeing everyone who came out wearing the shirts and all sitting together. I got the opportunity to hug everyone, and it filled me with love and gratitude and, above all, just joy that I had this beautiful gift of community to lift me at my lowest.
I got to ring the bell surrounded by the love and care that enveloped me during the worst time of my life, and I am so grateful. What a beautiful affirmation about how loved I am and an affirmation that all along, I have been enough. What a beautiful truth to feel in my bones.
We then went to have lunch at Bar Italia, and man, that lasagna tasted like metal, but the hunger was a lot, and despite the chemo coursing through my veins, I was ready to enjoy my meal with my loved ones.
Since this time, I have been going on my rollercoaster of symptoms. Each worse than the last, and isn’t that so cruel? I understand the drugs are cumulative, but my goodness, the violent waves of nausea that leave me in tears, the dread when I start feeling the pain in my bones, the pain in the surgery site, and the anxiety brought on by this have been brutal. And brutal isn’t even the best word to encompass this experience. I am happy to not have any more drugs in me [technically, it’s still in me, it’s just being flushed out]. I recognize this treatment has been aggressive because the cancer is aggressive, but I take no pride in surviving the symptoms. I take no pride in taking this beating. I needed to do what I needed to do to survive. And I just want this to be over. It feels never-ending.
“You’re so strong.”
Well, there was no other option.
Now I am sitting two weeks out, sitting in these thoughts, sitting in what feels like a further unraveling.
The diagnosis – I unraveled
At surgery, I unraveled
At chemo – I unraveled
Post-chemo – yet again, and this time it feels more emotional.
This unraveling feels like a confirmation of a universal truth espoused by Shrek – we truly are like onions because look at just how many layers.
I am unraveling, and it feels like it’s due to my chemo-brain symptoms alleviating, along with the recognition of how much the chemo impacted my behavior and mood. It feels like, as the chemo drugs’ presence lessens, I am left stripped of a mental strain. It feels like when you tense your whole body and then relax – that static feeling, especially in my mind. A relief paired with a welling of frustration and sadness. Is it me, actually, finally processing what has happened to me? Maybe a better description would be that I’ve been stuck in a riptide, and I’m finally crawling out.
I am tired and want to rest under a tree with someone caressing my face.
I try to write to convey my feelings. But it’s so isolating because, as much as I write and as much as you read, you won’t know what it is like unless you’ve been through this. I still feel endless tears wanting to come out, and I want to be held as I cry. But the opportunity hasn’t come up. I still feel stifled.
Liminal Leisure 
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