I'm not patient.
This is probably karma to some capacity
A majority of my career involves making others wait. Covid didn't help that situation for healthcare. I have kids waiting for a Dx for their meds, schools for help with behavior needs, - even my kids for dinner-
Regardless-
I'm in my new room- it's nice but idgaf
I'm in PAIN
my attitude isn't great- crossed between begging, manipulative, and pleading for some relief.
Dilaudid .5 iv
Given slow, works!
The bone pain is gone in seconds.
2hrs of relief
I sleep.😴
❌ Allergic Reaction 4?❌
WTF? I felt so good-
Why do I have to do this again?
More puke, pain, hunched over
Now I feel the pain in my side/liver
Zofran:
At this point- I've taken it 4xs
Both iv and oral
No direct response
They give zofran through the IV and I drink the numbing GI cocktail
❌ Allergic Reaction 5-6?!?❌
Weirdly- my liver enzymes keep going up and now I'm responding with this puke pain to things I've tolerated
Medical:
they're talking biopsy of my liver
ICU transfer? - please no
More scans (full body)
Palliative team was added due to medication response
Every MOTHER FUCKING SPECIALIST is telling me different things- with the exception that everyone agrees to the surgery so that is spectacular (I'm picking my battles)
Enter my😎Neurosurgeon-
(now my buddy- but in the moment we were NOT friends)
it could be anything-we don't know
it looks like Pac-Man took a bite -but behaves like infection.(bite shown in the image below)
It doesn't look like there is brain involvement
Pain? Ice should be fine
Time- if your MRI will be back in time, we can get the room- and do it tomorrow (Saturday)
Start NPO
Infectious disease🤓-
definitely not infection/no evidence
Labs are fine
Cultures are clear
Wait on biopsy
We are concerned about some of the soft tissue writhin the skull.
Pain? I would wait- avoid ice and heat
Hematology-Oncology 👨⚕️
Waiting on the biopsy
Tight lipped on any thought for treatment
Maybe avoid ice for blood flow due to the surgery
Neurology🥸-
there is an area in your occipital region that looks affected /brain
we may want to start anti-seizure meds?
Exam: always asks about my headache/I always reply "it isn't like a head-ache- it's a knife/shard of glass pain."
Pain? either ice or heat- whatever helps
ENT- 🤡
he's back
Looks at my ears and throat
Signs off on my case ✌🏻
Palliative 🤕
Let's get you a patch for the nausea
Try the Dilaudid again with meds to contradict the response (GI cocktail, and Benadryl/whatever is needed)
Added another injectable option for nausea
This allergic reaction keeps getting worse-
I'm hunched over all night.
They don't end when the drugs burn off..it goes on all night
The pain shifts from my head to GI
Decision Time: Pick one + Deal with it.
head pain
Puke/GI pain
My choice: Head- and begin a long line of refusals
This is when I learn the most- I have to research what the fuck is going on-
call my buddy Mark out in Delaware and get him pulling/reading/researching
Pool all my local resources- my friends- family, doctors, nurses, psychologists, med research prof, and neighbors.
Get some great advise mixed with others requesting my HIV status, potential infection tests to run (we do them- all negative)
I need to be very direct with each person because time feels amped- I'm sure it's the pain...
start looking for longitudinal studies on treatments most affective for lytic lesions of skull (occipital region, similar appearance, potential systemic response, ect...)
look through about 70 MRI studies and find the 17 closest to mine-
study them
Read a lot- through the pain-
Noted ties to lymphoma/bone/blood system cancers and have to recognize that my dad died from NH Lymphoma (way too young) and uncle recently beat his (another version)- still--- the odds of that not having any genetic factor?!??🫤
Shit news-
Cases are slim - presentation matters and I'm not under the age of 20 or over 90
I don't have other cancers (usually lymphomas) that are often present with lytic skull lesions
This doesn't "look" like other's cases
lytic lesions/pre dx aren't the easiest to address without people who agree
Biopsy is a given (great)
Long-term- all studies speak to getting to 3-5yrs in lieu of 3-6 months- this timeline gets talked about more candidly with 2 of the docs.
I'm not paying attention.
Ignore time lines immediately
NEW GOALS:
ALL cases where the patient lived more than three years (and had no other system involvement) had the best outcome with localized radiation (regardless of cause) and removal of affected areas. - I NEED THAT ASAP
Don't forget your liver- and these allergic reactions- ALL of this is weird and something may be happening elsewhere.....make sure each specialist has the same information.
-Side note- the UK study with the best outcome didn't even wait for the biopsy report to complete radiation due to the amount of success. FOR TIME SAKE -THIS MATTERS!!!!
Next goal- figure out which specialists will get me that radiation and kiss their ass-
Emotions-
no time for feelings (said the psych)
too much time needed for studying- to emote
Stay tough for my kids
Here come the tears 😭 the pain is more than I can handle-
Nurses and Yup 🟢 more meant-to-be moments-
🟢 a travel nurse from the Philippines 🤹♂️ rubbing my back all night as I puke. Sharing stories, jokes, making fun of doctors, and enjoying the good dry irony of it all. Definitely spoke some life-lesson shit that will come up later as I'm reliving it.
🟢 a nurse called 🦸♀️ for safety - knows my people, my friends and work-partner - also, worked with her- best friend, lives in the same town- she too is riding the puke/pain wave- with the humor and the care- never bothered and always close by for the big stuff. She is ready to correct the doctors when they don't listen. She reads me my scan results- I sneak pictures- it helps- it's HUGE!
Both become my favorite voices and both are on my team. Taking me to midnight scans and making sure I was their patient (charge nurses) - even taking their lunches with me💕
I thank them- order them DoorDash- all the things .......as I'm quickly observing a pending shit storm of symptoms and wait times-
In this moment - what do I know?
- after the studies- and what does my gut say?
WORST case- it's infection that is spreading. It doesn't get stopped with my liver going bonkers and I'm out.
BEST case- I had some injury that caused an autoimmune response (I've had weird autoimmune measures for years with new allergies in my late 30s) but they get rid of it and I'm golden / maybe some steroids ect.
Mid-road SHIT version- it's some malignant thing but at least the pain made us catch it- I can get treatment and be okay.
SUPPORT:
Update work
Let family know there is weird stuff happening
Try to tell my mom some (but not all the stuff ) to quell that panic
Set boundaries QUICKLY- and open doors ASAP.
Get my friends here- if I don't laugh at this shit then I will definitely die ☠️
Focus:
Eat real food- order Pizza Cat bc I'm NPO at Midnight.
Try to party with my nurses- ignore the pain.
Try to enjoy the view- I do have a great room.
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