It's Thursday. I'm getting released on my son's actual 18th birthday.
One year prior, I had a one-time seizure-like event where he was tasked with calling the ambulance.
Upon finding out the group was coming to take me home, I scrambled to get his surprise together.
He ilwas getting his car this year and our family friend was adding a custom paint job with stripes. We texted and arranged to stop there on the way home to take pictures.
He's excited - but under is breath he says, "how come something bad always happens on my birthday."
I respond by reminding him that his sister is referred to as the "Angel of Death" because for a solid three years a close relative died around and ON her birthday.
That satisfied his question and we moved back to the focus of him and his big day. We kept it cool that night, ordered the dinner he chose from DoorDash, and celebrated with our little family.
It was nice- we didn't talk about the surgery or next plans. It was just us.
Day 5 post-op came and went. No preliminary report. No biopsy results.
Presuming day 5 was Saturday, with the surgery on Monday, I waited until Tuesday, November 7th, to inquire.
Still nothing.
On the 8th, I contacted the oncologist through the hospital because I had a scheduled follow up the next day with a new hematologist/oncologist. I was concerned the appointment was pointless without the pathology report.
The hospital's NP stated she saw a report in the system from the Cleveland Clinic that she could not pull up.
That information caused me to call the Neurosurgeon back. As the ordering physician, their office would get/see the results first and I hoped to have results for the hematologist (get me treated and fix whatever is wrong with me).
The Neurosurgeon's office did not have any information, however, they called pathology and let me know that due to it being a bone sample, the processing would take longer. They shared the the neurosurgeon had called himself and they let him know the sample was sent out for testing.
On November 9th, the hematology/oncology team had me scheduled for the initial appointment which turned into me just going through a play by play of the hospital encounter without the pending results.
That appointment was a sneak peak into what I would need to prepare for the next two months
cyclical conversations
Admission of a lack of familiarity with what they had seen or read
A need for more information, before treatment
In that moment, the last fact bothered me the most....
how much information does one doctor need to do something?
Here I had one lytic lesion that was removed. Now, there was a second lump, becoming more prominent, and it's hurting.... do something!!!
Every study I read continued to support the use of radiation with the skull presentation, regardless of cause- yet none of the local specialists would discuss strategies or approaches with me.
Wait for the results.
Wait.
I practiced waiting and distracting my mind with kids and work. I had to manage others questions and stress- then began building thick boundaries with who would get my energy or time.
At work, they were gracious and kind. Almost making me take time off when I was only trying to get my groove back. Eventually, this led to a candid discussion where I admitted the quickest way to kill me would be to make me quit working.
Quickly, I noticed who added to my energy and who drained me. Something we typically have the capacity to ignore was evident and required action.
By day 13, the day before my Neurosurgeon follow-up, my results were in and I was ready to hear what the hell took so long.....
Nope. One more day- the Neurosurgeon will need to discuss it with you in person.
Yes, of course.
"Let me lean on my backbone so I'll still have my backbone when they lay me down."
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