I Always Feel Like... Somebody's Watching Me!

Monday, October 30, 2023

About that rope... it snapped.

Two things: I joined an online writing group in hopes of stretching my skills and our recent prompt was "Write as if you are a rope about to break .." 

Monday was my first radiation treatment and I was scheduled to follow up with my oncologist before radiation - to talk about my blood estrogen levels and whether I'd get the shot to suppress my ovaries. 

We checked in at 9:45.... Waiting waiting.... 10, 10:15, 10:30, 10:35.... They've called literally every other patient back and my radiation is supposed to start at 11:15. I'm pretty sure this is how all radiation departments work - but they want you there on time, in the gown, ready to go. Plus my anxiety was THIS BIG, feeling a bit out of my element with yet another unknown. 

I was getting fired up and I gave my dumb little patient stickers back to reception and said I'm not staying - I don't understand why you've let everyone else in ahead of us. I have a radiation appt! 

First she argued that my appt was only at 10:30 (it's 10:40 at this point) and I reminded her that my appt calendar had us check in at 9:45. This is what time we got there after rushing to get our two littlest ones to school. Then she tried to say I still had a little time to get to radiation, as if I want to run to the other side of the hospital, nervous for my first treatment. 

I think my rope just snapped. Why is it acceptable for them to just change appt times, add extra days that we need to take time off of work, and have us sitting around waiting for hours!?!? I don't know how patients do this that are primary wage earners or have small, small children or rely on others for rides. What a f$&king mess.

My "rope" has been hanging on since February. Stretched one way through chemo, stretched through the long days of blood draws (and my needle anxiety with the damn port), then the oncologist, then back upstairs to a chemo chair - knowing that the side effects would hit full force a few days later. My rope stretches with my children and the worry that I'm dropping the ball times five. My rope frayed after what I thought would be a less invasive surgery turned into a mastectomy. My rope was pulled down for another surgery a month later. My rope has gone through spring, summer, fall and into winter with one treatment plan after another. 

 My rope wasn't made of stainless steel - it's made of fibers that need protection from the elements. My rope hangs with the weight of my family, my obligations, my love for this life. My rope frays with these extra hiccups- every extra appointment and every extra frustration. My rope is stretched between the expectations of "enjoy every moment" and "give yourself time to recharge". I can't do both all of the time. 

So as I was low-key raging at a reception desk, where I think they've become accustomed to late appointments and patients held captive by the care they need... I could feel a major strand of my rope break. I don't feel like being a nice patient all of the time, regardless of whether I am directing my anxiety in the right direction or not. 

Almost a week later and I've gotten through the first 5 rounds of radiation. Happy that my side effects didn't start day one, but also feeling like the train is about to hit me. 

I also did make up that appointment with my oncology team - they rescheduled it for me. I went into that office with more needle anxiety (it does not improve with time, honestly seems to get worse) about the potential shot to shut down my ovaries. Because my cancer was fed by hormones, the long term care plan is to get me fully into menopause. Which brings a host of unpleasant long term side effects to my body. Osteoporosis, muscle pain, joint pain, hot flashes, mental fog, etc etc freaking etc. My age is not my friend in this department, because even though chemo pushed me closer to menopause and I did experience a drop in estrogen and hot flashes... There's a very viable chance that my poor ovaries will start doing their job again. For now, my estradiol levels (estrogen in my blood) is *right* on the cusp. So if they stay where they are, I can avoid the monthly shot (into my stomach 🤮) and only take the other two unpleasant medications. 

My rope, it stretches! It strains with every unknown turn and disappointment. But it also relaxes with each horizon I meet and become familiar with. It endures. And it is strengthened by everyone that is helping to weave new strings. 


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