hurry up and wait

Sorry-I didn't mean to leave you guys hanging. (all 4 of you :-))

but it's been a WHIRLWIND.  Because the cancer was so (unexpectedly) aggressive, they wanted to get me to an oncologist. He's awesome, as is the oncology fellow that I mostly  deal with.

I recovered from the hyponatremia, and continue to recover from the surgery. And although I didn't feel ready, the chemotherapy was set up.  Met with doctors, medicines were chosen, insurance authorization was obtained (by the team, not me).
Last Wednesday, I got a port implanted. Specifically, a central venous access device (CVAD). In my upper chest. it's a no-big-deal procedure, outpatient, conscious sedation (yes, I still plan to tell you about the biopsy!), and was scheduled to start chemo treatment Monday.
As in, yesterday.

I'm told the port can be used immediately; yes, there were two small incisions. Yes, it was a big swollen. No reason to expect any complications.

*sigh*

There are almost always complications with me.
I tell doctors: I'm at one end of the bell curve or the other, never at the top.  I'll be your outlier. When you say, "that isn't a common side effect" to me, I respond: HOLD MY BEER, doc.

So I got itching, heat from the area around the port and incisions, and I called the doc on call (interventional radiology), as instructed.
They blew me off, said it's normal, said they'd have a nurse call me the next day to get a photo of it (spoiler alert: do I need to tell you if a nurse called me the next day?)

It got worse. More red, more hot, more itchy. Had an already-scheduled appointment with one of the oncology team to get info about chemo, ask a million questions (I only asked about 100k). They looked at it, said "It looks about par; let someone know if you see a rash."

I bet you can't guess....a rash appeared. It started spreading.  So on Sunday, the day before I was supposed to start chemo, I called the on-call doc (interventional radiology). If possible, they were even more dismissive.

I'm used to this. I'm Highly Sensitive (TM) I have stronger reactions to most to, well, everything. Medications, changes in environments, time changes, and especially big things like port placements. And I'm used to doctors rolling their eyes at me and tuning me out. WHEN I KNOW I'M RIGHT.
And at the very same time, since a chunk of my early childhood trauma has to do with medical crises (not mine, but important people in my family), it's extra hard for me to advocate for myself. I get frozen, and mousey, timid and anxious.  It's a fabu combination.

bookmark that.

I said to that on call doc, on Sunday, "I'm concerned I might not be able to start treatment." If they knew me, or had listened to me, or given me 2 more minutes, I would have said: I'm afraid this is inflammation, or an infection, and I'd love for someone to look at it now because what if I need steroids or antibiotics?"
They, frankly, aren't interested in my thoughts. They told me to call the office on Monday and make an appointment. Great. Thanks.

I pack for chemo: books, iPad, snacks, a cooler with ice and cold mittens/booties/caps to mitigate side effects. Chargers, airpods. I have been told these are helpful things to have.  For trauma survivors, new things-especially big surgeries or new scary cancer treatments-are so anxiety-provoking. When I teach about trauma-informed practices, one of the frontline practices is called 'enabling prediction'. Explain things, what to expect, what's going to happen, before it starts.
The only 'prediction' I have about chemo is icky side effects.

My mom and I get to the infusion center first thing in the AM, we have an intro class that everyone gets. (we got lucky, it was just us and the nurse, so we got a private training.)

You'll NEVER guess what happened. I showed her my chest: red, hot, some swelling in places, and a rash that seemed to be spreading as she was inspecting it. She took out her phone, snapped a photo, and ran off to send it to the oncology team.

She came back a few minutes later: "You can't start treatment today. They are calling in a script for antibiotics.  They will schedule you for next week." (my chemo is three consecutive days, with labs drawn in between treatments.)

If you don't remember what I said to the on-call doc the day before, scroll back up to where I said "bookmark that". 

{rolling eyes into back of head}

Part of me was relieved; I'm not looking forward to starting this.
Part of me was disappointed: I want to get on this! I have no idea how I'll be able to tolerate it, or how effective it will be. I'm in a Stage-IV-cancer-holding pattern.

I endeavor to make this found week without chemo a combo of getting stuff done and doing nothing. oh-and acupuncture, medical qigong, therapy, blood draws and visits.

What else can you do?