For the first two weeks that I was home I felt pretty miserable but everyone kept telling me I had just been through something extremely taxing on my body, I just needed time to heal. The headaches, nosebleeds, irregular cycle, fatigue, and anxiety would all pass with time.
I didn’t believe them. Something was wrong. I knew it.
I had just been through something pretty drastic but the pressure in my head had been steadily increasing as the days went by. My headaches now were worse than when all of this had started. I was unbelievably tired all the time. I was still crying for no reason and having awful nightmares. I was also ridiculously jumpy. I listen to music at work (granted it’s pretty loud so I don’t hear anything else) but one day I was rocking out to some vintage Britney while working on a grant proposal. I had just finished lip syncing “Oops I did it again” with the big finish where I throw my head back and imagine I’m at the 2000 VMA’s wearing a nude sequined bikini and belt out “I’m NOT. THAT. INNOCENT!!!”(you all know the performance I’m talking about. If you don’t YouTube it, you’re missing out.) When I looked up I saw my boss standing in the doorway with his arms crossed looking amused.
Normally I would have been momentarily startled and then burst out laughing at myself. That day you would have thought he was standing there with a Jason mask on and I was listening to John Carpenter in my headphones. I shrieked, covered my face with my hands, and shoved my chair away from my desk until it smacked the back wall of my office as far away from him as possible. What was wrong with me? Geez. Why was I so on edge all the time? Even when I was alone in my house slight noises would startle me enough to drop whatever I was holding.
Things weren’t getting better they were getting worse.
I decided to make an appointment to see Dr. O. When I told him about my headaches, fatigue, and overall anxiety he dismissed them like everyone else. Most likely the headaches were from swelling after surgery and I still had quite a bit of packing in my sinus cavity. As for the anxiety I just needed to relax. (I paid $225 for this visit by the way. This man went to UK medical school and did his residency at the Mayo Clinic and I paid $225 for a “you’re fine, just relax”) I was still not convinced. Something was off. I insisted on a follow up MRI which he reluctantly obliged. When I saw the scans my stomach dropped, there was a huge white mass that looked exactly like the tumor we had removed less than a month ago. I started to cry and Dr. O told me not to worry, “just because it lights up does not mean that it is your tumor come back to haunt you, it is most likely swelling and packing. Go home. Relax.” This guy was ridiculous. What did I pay him for again? Didn’t he know that in scary movies it was when the protagonist felt like she could relax that she was in the most danger? Go home Jamie Lee Curtis, we have Jason in custody. Just relax.
I went home and pulled both scans up on my computer to compare the two. They looked almost exactly the same to me. I sent Dr. M an email at the Mayo Clinic asking him what he thought I should do. He emailed me back within the hour with this response, “overnight the scans to me. It is entirely possible that this tumor can recur, and quickly. If that is the case you will need to come back and see me immediately.” I promptly packed up the spare copy of my scans that I keep at my house and it shipped that day. I went to bed that night still feeling anxious but better about the fact that Dr. M would know what to do.
That night I tossed and turned and had my usual nightmare thinking that I was drowning. My alarm clock went off as it normally does at 6:30 and because I am the worst morning person of all time I have to have it on a ringer that sounds like the fire alarm in elementary schools. It of course also startled me from my troubled dreams and I jerked awake with adrenaline surging. I fumbled for my phone on the night stand wanting to turn the horrible noise off but in my groggy state I grabbed the first thing my hand touched and wrapped my hands around the glass of water I keep by my bed.
It was a reflexive motion. I grabbed it and jerked it towards me.
As a result, the ice cold contents dumped out onto my face, the pillow, and the bed. I sputtered and groaned throwing the glass across the room in frustration. I was wide awake now and pissed off. What was wrong with me? Had I seriously just doused myself with a glass of water? Who does that? I looked at myself with disapproval in the mirror on top of my bureau across the room. I looked like a drowned rat, water dripped from my hair and down my face, and my eyes were bugging out of my head. I turned my head slowly to find my phone to turn it off and when I did I noticed that I disappeared from view in the mirror. I looked back in the mirror and saw myself just fine. When I turned my head again though I disappeared. I was losing my peripheral vision. Again. Just like before. My lower lip trembled and I bit it hard and told myself to pull it together. No use getting upset until I knew for sure.
Then the phone rang. It was Dr. M, “Stephanie you will need to come back to see me immediately. You’re tumor has recurred and is even larger than the initial mass. How is Friday for you?”
It was Thursday.
I want to take a break here to encourage anyone who is going through anything remotely similar to my experience to maintain copies of your own medical records and to be insistent on your quality of care. You are your own best advocate and no one knows your body better than you so do not be afraid to ask for copies of reports, scans, blood work, etc. They are your records and you have a right to them. The first copy should always be free, ask for them. Keep them organized by date and in a file at home so that if you need to seek a second opinion or send them to your surgeon at Mayo (like I did) you don’t have to wait or rely on someone else to do it. Lastly, don’t be afraid to be tenacious when it comes to demanding the quality of care you deserve. Doctors are people. They do not magically become infallible creatures when their white coats are bestowed upon them. Every now and then they can be wrong. If I had gone home to “relax” instead of emailing Dr. M….
Be polite but be demanding.
And most importantly if you are going through a chronic health issue like I am,
never ever ever give up.