The Incident: Part 3

Samantha continues her story from The Incident: Part 1 and The Incident: Part 2.

I arrived with my mother in Atlanta on Monday, October 28th.  My birthday is Halloween (October 31) and I planned on turning 40 without holes from the gamma knife.  I didn't want to actually look like the bride of Frankenstein.  But, we were still unsure of metastatic cancer or something else.  If the cancer crosses the blood-brain barrier, I definitely have to come off my current targeted therapy and move on to a newer one.  The newer one is somewhat scary.

Meeting with the radiation oncologist

Upon arrival at my main hospital, I first met with my radiation oncologist.  Since he is the Chief of Radiation Oncology, I knew I was in good hands.  He used the images from my MRI that was done in June 2019 and compared them to the recent ones.  He made them available for us to fully see what he saw.  On the MRI without contrast, the area looked like a black lightning strike.  The one with contrast looked like a bump, not a tumor.

After reviewing his findings with us, he didn't feel like it was metastatic disease at this time because of the swift growth and the way the image presented.  However, he assured me he would take the findings to the tumor board.  My oncologist also wanted a review by the neurosurgeon and neurologist.

Meeting with the neurologist

The buildings are one exit apart.  In Atlanta traffic, that can take 30 - 45 minutes.  We arrived as quickly as possible because it still felt like we didn't have answers.  If I only knew that all along, I was the problem.

My old neurosurgeon retired so I was seeing a completely different neurologist.  The neurosurgeon had already seen my films and agreed it didn't need surgery because it didn't present as a tumor.

I was pleasantly surprised by my new neurologist.  She explained that she felt like she knew me even though we hadn't met since she worked with my old neurosurgeon so much.  They often used me as a case study.  My original craniotomy was in the visual part of my right brain, deep within the brain.  The current abnormality is in the left hemisphere directly below the skull on the top of my head.

What could it be?

After performing the usual tests, we began ruling out what it could be.  First, we ruled out a tumor.  Then we began talking about the medications I was on.  I suddenly remembered that my blood thinner was lowered to 2.5 mg twice a day.  Once I told her, I started to confess all of the medications I quit taking because I didn't think I needed them.  Two of them, neurontin (prescribed for restless leg syndrome that resolved) and clonazepam (prescribed to help me sleep), shouldn't have been stopped.  It was the ultimate storm.  Stopping the medications cold turkey and lowering my blood thinner had caused a stroke.

I have to say, the medical field interests me so much.  I had no idea those prescriptions were also doing other things, such as preventing a stroke. She made me feel like I was contributing to the mystery that was my brain.  She put me back on them and I got new prescriptions.  It makes me a little sleepier throughout the day, but I don't ever want to feel the way I did again.

I guess the moral of my story is to never stop taking medications even if you think you're fine.  I had no idea those meds were also working in different areas of my body. It would have been great if I knew ahead of time.  But, I do know it's my fault for not asking the proper physicians.

At the end of November, I will have another MRI.