The following is an account of the events that led up to my diagnosis. I wrote it as I was awaiting the results of my pathology report. It is a bit long…
My mind had been made up. My decision was final. I want the surgery and I want it yesterday. I told my doctors.
I waited for the surgical scheduling assistant to call me.
I waited for the Physician’s assistant to call me.
No one called.
A couple of days past. Then more. Then a week had gone by.
I checked my healthcare app. It seemed to know more than myself or anyone else did because according to the information in my chart (funny enough the application is called MyChart), I was scheduled for surgery in less than a month and had a couple of follow-ups, a blood test, and a COVID test in the coming weeks. But no call. No information from my doctor’s office.
Wait a minute, I thought, did an AI BOT take over my life and program everything for me? Like, what is going on?
Initiate phase II….
I called. I called. I called.
I left messages.
Then I left for vacation, and I decided I was going to let it go for a couple of days then re-group and If I did not hear from anyone then I would go to the office and not leave until someone told me what heck was going on.
On my last day of vacation, I visited a spa. I left most everything in a locker, including my phone which I put on silent and do not disturb.
And you guessed it. BAM. Missed calls, voice messages, and multiple updates.
I laughed and cried.
Surgery was scheduled.
Tell the people. Make the plans. Do the tests. Visit the PCP for surgery clearance. Go. Go. Go.
…
I woke up to the sound of the nurse’s voice letting me know she was removing the catheter and emptying my bladder, “this might be a little uncomfortable for a moment, but the surgery is over.”
As they wheeled me to recovery, I had a thought. Well, if I had a catheter in, that means the surgery took longer and it wasn’t just a biopsy. Right?
My surgery call time was 5:45am.
Gail, the nicest, kindest, sweetest woman showed us where we’d be staying that day and gave us a small tour of the first floor of the hospital. She stayed with us for a moment to encourage us that we were in good hands, and she wished us only the best. I’m pretty sure she was an angel!
Five years after we arrived someone who had authority over getting the ball rolling came to see us. I lasted 2 more authority figures after that before I got overwhelmed and needed both my boyfriend and my sister to talk me off of my metaphorical ledges every 2 minutes.
What if my potassium was high and they couldn’t do the surgery?
What do you mean the plans have changed and if it’s malignant we’re doing a full U-turn?
At the last minute I decided I needed to pee.
When you pee before surgery it is the only time that you can (1) be alone and (2) have complete control over yourself. So, if anyone would like to know why I go pee so much before surgery, you know now.
As they wheeled me around the tight corners, they explained that I was late because I had to pee. But, really, I was late because perhaps that was the last opportunity I would have to experience freedom of the unknown.
When I was younger, I always wanted to know everything. I devoured books, learned how to research effectively, and never hesitated to ask questions. I sat in the front of the class and paid no mind to people who called me a nerd. If there was a question, I tried to answer it.
While I still enjoy learning and gathering information. I’m now inclined to find myself more at peace with not knowing. Because knowing might mean I have to confront mortality. I’ve lived with this fear since I could understand how miraculous it was that I kicked cancer’s ass the first time and that my treatment opened copious doors to new cancer opportunities. I was 12.
When they asked who I would like to come and see me in recovery, I said to send my sister. I wanted to say, my boyfriend, but I needed her because she was medically trained and I felt she could help me get in the know the quickest.
I remember her looking at the nurse (the nurse who had seen hundreds of moose during his time in Alaska…yes I grilled him about this) and asking if she could tell me.
Initial pathology was benign, the hovering cloud was gone.
…
Then the ping-pong games began.
I got a call from the doctor about a week or so after the surgery about the final pathology. They needed to do more tests. The results would take more time than initially thought. (Ping)
I could tell that wasn’t exactly the plan we all thought would be ahead of us.
Really benign had turned to, we’re looking to make sure it’s not cancer, but we didn’t know anything yet and we needed to wait on the test results. I mean this still looks benign, but there’s just something.
At that point I wasn’t shaken. Every time I’d had something removed, they were reasonably cautious given my history and always went with the more tests just to be sure option.
Then came my post operation visit with my surgeon and he put Malignant Nerve Sheath Tumor on the table. (Pong)
Wait, what?
Was this just more information than the doctor on my team had shared with me on Friday, or was there new information?
The appointment ended with still waiting on the results, but all I heard was cancer. They thought perhaps by Thursday afternoon we’d know more since they had tumor board then.
Since my surgeon was a surgeon, he said my other doctor would know more and I could get an appointment with him. But my surgeon’s assistant didn’t have the number for my other doctor’s assistant, so my boyfriend and I walked downstairs ourselves.
The assistant informed us that my doctor was away from the office and there was no one there to help guide her with how urgent the request was and what to do. She’d give me call back.
On the car ride home, I got my answer. “Nothing had changed, and we needed to wait until Thursday. He said he’d call you then”, she reported. (Ping)
By Thursday the only information was it didn’t look benign anymore, but they still weren’t sure. He said the pathologist would report without the additional data they needed to confirm anything, and it would likely say cancer. He said, however, that they honestly weren’t sure and that only the tests could say. (Pong)
A few weeks later, the results weren’t good. Cancer. And less than a month after that, it was confirmed. Malignant peripheral nerve sheth tumor, a type of sarcoma.
