This week has tried my patience and challenged my internal sense of self and perseverance. I felt like I had been faring well, considering what some of my peers have been experiencing, and this week has just been a brick wall I cannot get past. The fatigue and the pain have been too much, and to describe the pain as fastidious doesn’t fully encompass the full extent of incapacitation I have experienced as a result. I feel so bad for complaining, considering it’s been “so good” in comparison. Yet, this has been terrible. The bone pain is surreal, and the body horror is so subtle and stomach-churning. The pain is all over my body; my hand joints are in pain. I have a decreased appetite, and smells are impacting me adversely. I am in so much pain in my lower back – it feels like the menstrual cramps I had in my life have been SO gentle. I’m crying almost every day, and it’s not even from the pain right now – it’s from the exhaustion of dealing with it. There’s also a concerning pain in the bottom of my jaw by my neck. It’s not the thyroid but the upper neck. It feels like something is lodged there, but there’s no lump, and it’s not where lymph nodes would be impacted/notable. I am also at a slight loss here. I should have gotten my TMJ mouthguard a while ago, but the price was too high. It’s still too much, and I can’t get it since $250 is due when scheduling the appointment, $650 is due at the time, and $650 is due when picking up the mouthguard. I’m frustrated because this isn’t covered by insurance, and my financial commitments do not allow this right now. This mouthguard would be SO helpful right now and could help mitigate the pain I am experiencing.
I know my perspective is skewed, and I am experiencing some gaslighting in this experience coming from myself. I also feel like this is fed by my desire to calm my family’s concerns, yet somehow, it feeds into their perspective that “I’m fine and dandy” – I’m not. I didn’t realize so much of my pain would be dismissed like this. Maybe dismissed is the wrong word – maybe miscommunicated is best to describe it. There’s such a gap in experience – I don’t think people my age or anyone, unless you’ve undergone this experience, know the pain. How do I describe this and the distressing sensation that something is wrong? I need help and comfort at the very least, and yet the pain is *expected* and *regular* part of treatment. I am being thrown into the fire, and someone who has never felt this just goes and says, “This is going according to plan” – what the fuck? Even discussing this with other people undergoing the same treatment seems moot. Like we KNOW. Our commiseration comes from looks of knowing and understanding that no one else understands this pain. Speaking to each other about the experience is helpful, but not the intended audience, and it isn’t necessarily beneficial or what we need. It feels like preaching to the choir. I only share what I am experiencing at work because I am asked and don’t want to mask it. Their faces are contorted to that of expressing worry and sadness. I don’t know much else to do other than continue to share, knowing that my words are insufficient but that I refuse to say, “I’m okay.”
I have begun to be scared of what radiation treatment will be like. I was told that it would be the same symptoms as chemo but to a *lesser* extent. I am still scared.
I’ve been sleeping more, and it’s been an uncomfortable experience. I am a side sleeper, and feeling the port shift under the skin and tissue has made sleeping very uncomfortable. Given that I can now sleep without the pillows lifting me – I thought I would get some reprieve, but that port is so trippy. That port will likely be removed after February 2026. I want to reach the point where I forget about this experience. I hope I forget it and live a long, healthy life. For now, I have to take this one day at a time. The pain from the surgery site is still persistent, and I just have to be patient navigating through that process.
Despite the abyss in connecting over shared experience and language, I appreciate everyone who has reached out to check in—particularly those who actively and intentionally ask.
I have begun to distinguish between my peers who have shown up for me, those who haven’t, those who have asked, and those who have texted me, only not to address the elephant in the room. To have people communicate with me completely ignoring the elephant has been disorienting. Do you not see it? It has made me resentful. My world has become filled with more boundaries on who gets access to me, and regardless of their reasons, it’s not my job to resolve this situation for them. Honestly, the whole friendship situation has been eye-opening. I remain so thankful I have had people who genuinely care and that the *fallout* I have experienced has been *minimal.* Though, it still brings so many sad feelings. My therapist has urged me not to “amputate” those relationships but to instead recontextualize where these relationships fit in my life. That process I won’t engage with until after I am done with treatment. I am feeling so overwhelmed with everything. Again, what was the reason for this? Why?
I feel like I would gain lots of insightful knowledge if I saw a psychoanalyst again. Unfortunately, the fee is too expensive, but I often do wonder where I would be if I had continued that modality of therapy as opposed to the current therapy modality I am in right now (CBT).
Now that I see the end of chemotherapy and have heard the bells ring for others, I’ve started thinking about how I want to celebrate. I would love to go out to a nice dinner, dress up, finally wear my bald head out, and have a wonderful time. My bald head has brought up many mixed feelings I didn’t even think I would have. My scarf fell off in front of my boyfriend, and when I tell you I wept – I wept with such a visceral reaction. It was honestly terrible. He was kind and patient with me, but honestly, I did not expect this reaction from myself. I haven’t worn my scarf with family, and I’ve been fine – but this experience was heartbreaking, and I hated every second. I have to work up being seen without a scarf. I had some introductions at work with people I’ll be working with, and seeing their responses to my head has been visceral. I noticed their unease and curiosity. This experience, since losing my hair, has been yet another thing bloated with meaning. Again, why must I be experiencing all of these things? I have noticed that I’m not necessarily dismissed – but I am made invisible. Invisible in the way that people do not want to address me. I am that elephant, and people refuse to see me. This should bring resentment, but honestly, since I don’t know these people – it is liberating to a certain extent. I am left alone, and at the end of the day, that’s all I want sometimes.
My hair is growing and then falls out after a few days. I still have my arm hair? I was told receiving the red devil infusions would make my hair fall out. Well, we’ll wait and see. I am excited to see it grow, although I must cut it off after 3 months to ensure the hair comes out consistently. Chemotherapy can change the texture and color of my hair. We’ll see what happens. At the very least, I’ll be happy to have something on my head.
Okay, back to the point about how to celebrate: I would love to have a little party where I get people to write notes of support and appreciation and deliver them for patients to grab as they need. I would also love to find a way to have a packing party where we pack items for chemo patients. I received a box prepared by volunteers from the National Breast Cancer Foundation, and it really moved me to tears. It was a lovely gesture amid shittiness.
Some things that have brought me joy lately:
- Seeing Future Islands with a friend
- Sleeping in to honor how fucking tired this body has been
- Nice warm showers
- Delicious tea helping my stomach
- IT’S FRIDAY
Some things I want:
- Sleep more
- Continue hydrating
- Some Cheetos
- I want a pizza with prosciutto on top omg
- A massage for my back
Some things I am looking forward to:
- Watching a soccer game tonight on TV
- Celebrating my boyfriend’s birthday tomorrow
- I’m seeing Lilo & Stitch with my mom on Monday, and there’s no work or chemo! (chemo got moved to Wednesday)
- I’m going to watch Mission Impossible on Saturday!
- Starting physical therapy soon!
- A trip to Epcot for the Flower and Garden Festival!
Liminal Leisure 
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