It’s been quite an experience lately. I can describe the current common experience of my body radiating pain from the inside of my thighs, hips, lower back, and hands and arms. It’s not neuropathy since it’s not a tingling sensation on my fingertips. The neuropathy has been the doctor’s primary concern, given my age and frequent side effects of the chemotherapy, so I’ve been extra vigilant about this sensation. Added to my experience, it feels like I am covered by a weighted blanket (a 20lb one, since it feels similar to my 20lb weighted blanket), but it’s heated. The persistence of the hot flashes has been so unpleasant, and I am still a bit annoyed that this wasn’t emphasized in the chemotherapy education session before starting. I’ve also been gaining weight, which is better than losing weight during this time, but now that adds to the body dysmorphia. I wish more funding and care were given to women’s issues within health. I’ve been making sleep a priority and my evening routine now consists of me focusing on doing a nice shower, moisterizer but with my lavendar oil throughout, a light yoga routine that leads into my transcendental meditation practice, and then journaling for 20 min, and then reading for an hour – then finally lights out. I’ve been able to read with some rain sounds, and it’s been enjoyable. I am getting seven solid hours, but I still feel tired in the morning, and the jaw tension and tension headaches persist in the morning. My fatigue, along with the tension headaches, has contributed to me feeling like a fussy baby. More prone to crying and weeping. There’s not much on my end to mitigate these events, I have to go through them and not stop these weepy moments. Soon they will become less frequent. They’re not tied to sad feelings, just feelings of being tired.
At least I am making steps to solidify a good routine after this treatment. That’s how I’ve been treating this period. Just really taking an audit of everything and seeing what I can rebuild and redo. I don’t know what caused the cancer, but if there’s one thing that may be the culprit (aside from genetics), it’s the stress. I don’t know, but that seems like a big part. Epigenetics tells us we have specific genes that make us predisposed to certain ailments, but the environment turns them on or off. Maybe the incessant stress I placed upon myself turned the gene on. Who knows. Perhaps I’m just trying to rationalize it. You would have thought that by now I would have become well-versed in the cancer diagnosis.
I haven’t. My peers who went through this ordeal read the current research and discussed with the doctors, ensuring they understood how treatment works, their chances of recurrence, treatment intensity, and variability. I haven’t done that, and to a certain extent, I feel guilty as if I haven’t done my due diligence, focusing too much on my day-to-day and trusting what my doctor has recommended and stated. I do have a high regard and trust for my doctors. I’ve mentioned their names; they’re known throughout and highly regarded in Tampa. I do trust him and I know I’m in good hands. It’s not just the trust; part of me also feels overwhelmed. Like I need a whole academic course with homework to understand the cancer, it seems just too overwhelming, and I don’t think it will bring peace, which is the primary thing I am trying to surround myself with right now. It’s also a weird sense of not wanting to know. And not in a willful ignorance, but in how I want to focus on the good. If my education in behavior has taught me anything, it is that behavior goes where reinforcement flows. If I focus too much on this, it may not be as productive or helpful for me. I know myself and am proud of the restraint I’ve demonstrated with the spiraling. I’m sure I have mentioned this plenty, but I wonder if my medical anxiety was my body alerting me to this growth in me that needed attention. Here I go rationalizing it again, but I will say yet – indeed it was because, since the diagnosis, the medical anxiety has been on a decrease. I also choose to refuse the “know thy enemy” mentality. I don’t want to. I want to live and take back my peace from this situation.
I took a brief course on ayurveda for preventative health, which my meditation group promoted, and I’ve found it informative and not at all *~out there*~ as I had thought. The recommendations are easy, and I have implemented them throughout my day. My morning routines mimic my evenings, which include waking up, hygiene routines, yoga leading up to my meditation, journaling, and then breakfast with no distractions and focusing on mindful eating. Granted, I just finished the course and have less than a week of applying these routines, but they have been pleasant and easy, and I hope they help manage my stress.
I read through my file for my TMJ diagnosis, and the doctor had written, “poor stress management”. That just struck me. I always thought I was doing my best, but I wasn’t – hence this whole thing. In reflecting on it, I wish I had known better.
Shoulda, woulda, coulda.
It’s not much help now, but the best I can do is move forward, integrate these new routines, and be honest about what I can manage stress-wise. I’ve always had to work twice as hard to get half of what I’ve wanted in terms of career and finances. That stress continues as I face medical debt on top of the student loan situation. And I have to be honest with myself. Being rich or at the very least financially stable/ well off isn’t in my destiny. But the very least I can do is have my health and keep trying. I appreciate the (albeit wrong management of the situation) to the extent to which my psyche has dissociated itself from academic and career being a reflection of ME, as it has been beneficial in this time that I am now having to come to terms with. I don’t want to fight; I want a soft life.
I’ve been taking my pulse, and it’s been so high. I don’t recall if I have updated on this aspect. Still, two weeks ago, it got so high that I called the hotline, and they told me to monitor. They said there was no need for the emergency room, only to be told by my oncologist a couple of days later that I did indeed need to go to the emergency room if it did not go down. He recommended I get a watch monitor, like the Apple Watch, to monitor my heart rate. He also ordered me to get an EKG done, and later on, I have to see a cardiologist. This has been a bit anxiety-inducing because I am feeling like I haven’t done enough for my heart health. The next time my heart rate spikes to that level, I have to head to the ER to make sure we address it and get the evidence that I experienced it to get a diagnosis. I had a previous doctor ask if I had a heart murmur, and previously I experienced a panic attack, which landed me in the ER, to which they later suspected some heart arrhythmia. Maybe this is it, making this condition itself known? Who knows. I know I have to take it day by day.
Today is a good day, and I will have a great event to see a band at the end of the day. I am now at the point where I need to mask up as all my health indicators are low. It will be hot, but I gotta focus on hydrating and enjoying the show.
Some things that have brought me joy lately:
- Finished four books in the past month!
- Seeing dear friends
- Friends sending me hype texts
- Rice crispy snacks I’m not allowed to have (hehe)
- Some good ass barbecue after my chemotherapy yesterday
- My family showing up for me in ways I could’ve only dreamed of
- Following my therapist’s advice with work
- Minimized experience of acid reflux!!
Some things I want:
- Increase sleep from 7 to 8 or 9 hours
- More hydration – I feel like I haven’t been doing enough on this end
- M&Ms
- Some Taco Bell (this will be tonight though!!!)
- Declutter my closet again
- A massage for my back
- A hot dog maybe two
Some things I am looking forward to:
- Seeing Lilo & Stitch with my mom on Monday and no work or chemo! (chemo got moved to Wednesday)
- Celebrating my brother’s birthday in the next few weeks
- The Future Islands concert tonight!
- Celebrating my boyfriend’s birthday
- Going to watch Mission Impossible on Saturday!
- Starting physical therapy soon!
- A trip to Epcot for the Flower and Garden Festival!
- Planning to go to an Orlando City soccer game soon!
This is my update for now.
Liminal Leisure 
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