The last thing that that the nurse said before we hung up after the news of “you have a mass on your brain” was that I needed to have another MRI done, this time with contrast to better see what was happening inside my brain. The last MRI took forever to get insurance approval and I was clearly very anxious about having this second one done, sooner rather than later. The onslaught began of way too many phone calls to my insurance company and the doctors office. This is also when my anxiety really started to ramp up. The not knowing what is happening is absolutely maddening. Sadly, I am no stranger to anxiety. I struggled terribly most notably after the birth of my second child. I suffered from severe postpartum anxiety, looking back I probably should have gone on meds, but I was too stubborn. I was 100% committed to be the crunchiest, granola mama on the planet, (insert eye roll here), and hence I suffered way more than I needed to had I just given into a temporary bout of anti anxiety meds. I know better now, and the amount of anxiety I am already having lends me to believe that will soon be a reality for me.
I guess I should address why I had the original MRI. I had been having pain in my neck for more than a year, pain that was so chronic I was beginning to understand how people can become addicted to pain pills. I also have been suffering with some memory issues. I had also been complaining to my husband about tripping while walking up stairs. The original doctor that I went to see was a neurologist that specialized in memory issues. On my first visit he asked me to differentiate between a horse and cow and because I could draw the face of a clock I was sent away with a clean bill of health. So I made another appointment with the P.A. and after she really listened to me decided that maybe an MRI was reasonable to at least rule out anything major. I was half expecting them to call and tell me that I had early onset dementia. There are family vacations I have no memory of, I never have a clue as to whether I have already watched a movie or not, did I read that book already, not sure.
Obviously that was not the call I received, I was instead told that I had a mass.
I ended up going back for my second MRI, the one with contrast on December 19, 2019, 6 days after the initial MRI results were given to me. Yes I did take 5 doses of CBD oil to calm my ass down, and no I am not claustrophobic until I get into an MRI machine to tell me what this mass in my brain is.
I was told when I left the MRI that I would be called the following day if they saw anything, so I waited by the phone with baited breath. They didn’t call and it was a Friday so at 3:30 I called and asked for my results. A nurse pulled up my chart and said “oh” and then told me someone would call me back. 30 more minutes and no call. I called again, I waited on hold for 20 minutes and then the nurse who answered accidentally hung up on me. I called again, this time I waited 25 minutes on hold and when I finally got through I nearly lost my mind. The nurse explained that my second MRI showed an enhancement of the mass and that I should have another MRI repeated in 3 months.
That was it, no sense of urgency, no concern, nothing.
I asked why the doctor did not make the call himself and she had no explanation, she did however hang up with me and called back 5 minutes later to say that the doctor would meet with me on December 24th to review both of my scans.
I work in health care and I have to interject that I could not image a scenario where treating a patient like this would be acceptable. There is no excuse for not calling a patient personally to give news of this magnitude.
This is when my angry phase kicked into gear. Elizabeth Kubler Ross talks about the 5 phases of grief, her research is actually about one facing their own death not when you are grieving the loss of a loved one. The 5 phases are denial, anger, bargaining, depression and acceptance. Anger was in full force for me for about 12 hours straight. I was so mad at the doctor for not calling, I was mad at the universe, I just wanted to be mad. While the house was empty I was vacuuming and I started to yell and scream at the top of my lungs and smashed the vacuum right through the kitchen molding around the base cabinets (no one said this would be all unicorns and rainbows right).
The fact that this was all happening around the holidays was both a blessing and a curse. The upside is that this is a busy time of year and there are lots of activities to distract oneself from the mental chatter. The downside is that is is that the holidays and you don’t want to be Debbie Downer in front of your loved ones, or burden them with this new information which feels really big but you don’t have enough information to really share because you don’t even know what to say yet. But you are scared and need to process. Do you see how the spiral begins..