Is it the Vent?

Yes- as a Catholic, some assume I’d be superstitious by nature. Perhaps. Yet while at The University of Michigan, I’m staying in the MOTT children’s side for chemo—- and my bathroom keeps clicking. The space doesn’t have a vent blowing and no paper towels- but it sounds like someone keeps trying to open the cabinet or pull down paper towels. That click of a congested towel holder is distinct.

As I start to feel crazy looking for the cause of the noise, my nurse hears it too- WHATEVER is causing this noise?!?? We have no idea. I’m surrendering all hope of catching the clicker and trying to ignore the thought of a kid ghost in the cancer wing. Every 20-30 minutes I have this urge to give the damn kid their paper towels so they can go to the light….. yeah okay- I’ll own the superstition title, it’s better than having a hallucination. 🤷🏼‍♀️

The potential ghost is not the reason for the update.

In this moment, I’m coming down after another reaction ❌to dexamethasone/steroid. Now, I need to vent because while I LOVE the hospital Doctor, my Nurses, and the care of my current team- I’m once again torn between trusting my body vs protocol.

The build up to my annoyance-is the level of weight gain, pressure behind my eyes, and fire crawling on my skin with these steroids. Yet, I found myself having to take them last night to avoid delaying my treatment. Let me break it down so I can get over it——

• U of M put me on this med right after my surgery in November of 2023 and I had gained 88 lbs by my radiation ☢️ date in January. I went through fire and HELL getting off of them.

• When the Cleveland Clinic saw me taper off the med, even the lowest dose caused my face and eyes to swell and my joints to hurt even more 🔥🔥🔥 every doctor agreed that I should not have them.

• Months later, the infusion center in Toledo gave me steroids for two reactions before they agreed to mark it as an allergy because they saw my body didn’t handle it.

• Now, I’m told it’s the treatment map and all chemo patients get it (presented as a requirement to avoid a reaction). BUT- I have never had a reaction to chemo.

• My simple request was to hold off on the steroids unless I needed them- met with the speech of non compliance I felt forced to swallow.

Here’s the tea- and my actual VENT….

I’ve been to some of the BEST hospitals and doctors. My conclusion is….

• Protocols can be a money grab and bullshit.

• Every patient is different

• Many cancers and drugs are different (duh)

• Being told they have never seen an LCH patient presented in the same conversation they push the steroid (with confidence in which they presume a response) is NOT science.

• I do not know one doctor or specialist that has required the steroid, but U of M is STUBBORN in their mapping and when they aren’t the experts, maybe deferring is the most appropriate response!

• I’m over rules- comfort levels- and the desire to help clouded by an ego.

In the end- I’m still grateful- trying to be nice- and willing to move on.

The prayer is still that the ghost finds their paper and this headache and face throbbing stops soon…..because my poker face is going to crack 💯.

P.S. I attempted to post this as the PA walked in and agreed to stop my steroid!!!!!!

That Is a win! But I’m petty enough to post this anyway…. and if anyone knows Connor Stalions, tell him to swing by room 1 because I’d still like a fan pic.