It's the day of my follow up with 😎 my Neurosurgeon.
I'm sitting there waiting.
Nervous?
Expecting the "abnormal" results
Hoping it's still some odd infection or one-off thing....
The nurse comes in the room to take my vitals and look over my skull incision.
She lets me know that I don't need to have the sutures removed because they're the type that dissolve on their own.
Cool. But my appointment in MyChart is literally titled "Suture Removal" 😝
In strolls 😎 - "Hey there [hands me the paper pathology report]- so the good news is, it's not cancer!"
Me: [awesome]- as I hold the printed pathology report and I start to google information....
First, I read the report from Cleveland Clinic:
In the moment, I'm not sure what to do or think-
The nurse said that she hasn't experienced this diagnosis before, and my 😎 agrees that it is rare. He asks who I've talked to about cancer treatment/who is my hematologist/oncologist?
Me: "This is confusing- why treatment for cancer if I don't have cancer?" [-maybe it's related to the lytic lesion presentation -again- all studies support the use of radiation]
I let him know that I consulted with a local guy and 😎 responds, "Yeah- I know him well- that's who I would speak with because he is good with rare and enjoys researching new options."
🟢- here slides another moment of faith-
the nurse is from my home town
we went to high school together
she is compassionate
She starts to search for meaning and implications of my Dx before I have to ask.
She is immediately aware that navigating this journey is going to be difficult so she prepares me with mild coaching "you've got this."
In the moment where I can't think, she is functioning for me💕
I ask 😎 where I go from here? My second lump is larger now and it hurts more. In addition, I've been throwing up my food and experiencing a ton of bone pain in my legs....
I'm listening to 😎and I'm getting nervous because I'm not going be given clear next-steps.
Let me google:
I leave the office and call my kids to let them know "the good news".
I don't have cancer.
Once home, I call the oncologist's office to see if he is planning on giving any treatment recommendations. I leave a message with his nurses.
8:15pm, my phone rings- it's the oncologist.🥸
🥸: "Hello, Samantha. I'm calling you because we reviewed your results and unfortunately you have a very rare form cancer.".....
Wait. What?!?
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