You know those moments of pure surreality when you aren’t quite sure if you are dreaming or not?
When my girlfriend winked flirtatiously at me as blood dripped down her chin with a dazed expression while sirens were screaming all around us and paramedics running up to our car… yeah, I guess I’d call that the mother of all surreal moments.
On May 22, 2021 life changed forever. My then-girlfriend (wife now) had a grand mal seizure while we were driving. Fortunately, she was a passenger and not the driver, or I probably wouldn’t have been typing this. We most likely would be residing under some grass and a carpet of fallen autumn leaves and a block of Missouri Red granite with our names and dates would be squarely at the head of the little plot of eternal real estate.
Instead, we spent the evening at the ER and worrying about how to pay the medical bills (she had just begun a new job and wasn’t eligible for their insurance yet. So like many low income people, she took the gamble of no coverage for the two month window because “what’s the worst that could happen”
We declined the more expensive tests and procedures and just did the bare basics to make sure she was stable.
And I will spare you the litany of medical experiences, tests and appointments and give you the highlights:
It was a brain tumor that caused the seizure. Wanna know how we found out this little golden nugget? Some tech uploaded the information into her MyChart account before we had a chance to hear from a doctor. Isn’t that a delightful way to learn of your life threatening situation? 10:30 at night getting ready for bed. Her phone dings with a notification and she looks at the information in utter disbelief.
“I have a brain tumor.” Her tone was flat and lifeless.
Then came tears and panic and anger and a very sleepless night. She kept saying “I don’t want to die. I don’t want to die” and all I could do was try to hold her and comfort her while trying to wrap my own mind around what had just occurred.
(A side note: I’m still very angry at the doctor’s office for this. And to this day, we have never received a call from that office with an explanation, an apology or even an acknowledgement… I will be dealing with them for the nightmares they caused)
That little incident led us to immediately switch doctors and we found an AMAZING care team at SLU Hospital, but I jump ahead…
Prior to the seizure, we had just begun discussing getting engaged and talking about the wedding we wanted to have in a couple of years. After the revelation of the brain tumor, we realized that we didn’t know if we were going to have a couple of years or not so on July 25, we had an impromptu wedding under a tree with just our immediate family in attendance. Our hearts had wanted a fall wedding (our favorite season) but we didn’t have the luxury of a guarantee of that choice. A fellow crafter made her a beautiful fall-colored headpiece (and wouldn’t accept a dime in payment) that she wore that day bringing a touch of fall to that hot summer afternoon and a VERY emotional ceremony for us.
A week later we had a informal “reception” with some friends and family at a winery where my best friend’s band was playing. We received one of the most beautiful gifts: my friend and his bandmate learned our favorite song and played it for us to dance to. I half sang and half cried along with the lyrics as we danced, thinking the whole time that I didn’t know if we would ever dance together again. And as I hugged the man afterwards (who has been my friend for 40 years or better), I realized that he gave us the perfect treasure of a memory. I hope that you have a best friend like my best friend.
Fast forward to surgery day. Another almost sleepless night as we both contemplated the egg sized tumor that was going to be removed from her brain. She held herself together until a resident doctor whipped out electric clippers and unceremoniously started shaving her head. The panic in her face and tears in her eyes made me ask the doctors for some anti-anxiety medication to help her. And as they wheeled her off to surgery, I wondered if I would see her alive again or if my last minutes with her just passed with her absolutely terrified and crying.
I can’t put into words what that felt like.
The surgery went well, but it took 2 months to get the final diagnosis.
Oligodendroglioma. Try saying that three times. A type 2 to type 3. Not a doom tumor but a nasty one nonetheless. The kind that is known to regenerate even after removal.
Now we go every morning to the cancer center for radiation and she takes chemotherapy meds when she first wakes up. Side effects from the meds have landed us in the ER more than once.
Seeing her and her hairdresser cry together as they talked about shaving her remaining hair off…
And yet through all of this I am thankful.
I am thankful for the kindness of a dozen friends who sent us gift cards for restaurants. I am extremely grateful for our very generous, kind and understanding employers who have supported us WELL BEYOND the level that anyone could ask from an employer (We love you Austin and Misty). We are thankful for family who check on us and help us when we need it. I have been shocked by the kindness of perfect strangers who donated wedding gifts to us and or money to our Gofundme. I am thankful that she and I have chosen to live life much more fully and completely since the diagnosis.
Most of all I am thankful that she is sitting on the couch behind me with our cat Chuck on her lap, drinking a healthy smoothie and knowing that we have just a few more days of treatment before a one month break. I’m grateful that I have to go to a cancer treatment center instead of a cemetery.
I thank you for reading this. May this Thanksgiving hold some reasons for you to be grateful as well.