Heart + Eye + Brain issues = One body not put together right

This summer has been filled with doctor appointments.  It started with my neurologist who was very happy with my current (fingers still crossed) seizure control.  She is letting me decrease my Keppra by very tiny increments every 3 weeks.  She did not seem to think it would work as my seizures have been very difficult to control.  I even feel silly attempting to mess with something that it working, but I have wondered for years (damn it has been years) if the Keppra is causing many of my problems.  I would like to figure out if my memory issues and fatigue are from the surgeries or the medicine.  If it from the surgery I can let go of the idea that I can change it.  It has been three weeks on the lower dose of Keppra (from 1000mg to 750mg) and no seizures!  I am shocked that this is working.  I am also much more fearful being on the lower dose.  I am disheartened that on the lower dose I have not seen any improvement in my memory or fatigue.  My neuro-oncologist thinks it will take more time to notice a positive change, but I have a few more doctors to get through before I talk about that appointment.  My neurologist urged me to return to the cardiologist as my irregular heartbeat sounded even more irregular.  She was the one that jokingly said that with all my medical issues that I was "put together funky."  Damn right I was.  I envision a  funny looking Tim Burton-like cartoon doll stitched up all wrong.  With my sense of humor it makes me giggle a bit.  I was going to blow off this recommendation, but she was the second doctor to recently tell me this.  I ignored my GP's recommendation (that appointment was just a physical for work).

...So off to the cardiologist and of course he recommended a dreadful holter monitor.  It is nothing compared to the other tests I have had, but it is embarrassing to wear in public.  More so I had to wear it in the summer at a new job.  The only place that I have been in a long time that does not know about my brain tumor.  I got many funny looks, but no comments or questions from coworkers.  

The test showed that my PVCs have increased from 10% to 25%.  The cardiologist sent me to another specialists (I am starting to think there is a doctor for everything!).  He was very quick to say that I was too young to be put on more medicine if I was not bothered by the heart irregularities.  I do not feel the palpitations, so why treat them.  Yet I am to return in a year for a check-up.  Another doctor to add to the long list.              

I had a visit with my eye doctor (retina specialist).  He very quickly looked at my eyes and gave me the boot out the door.  As we were in the doorway he told me to return in 6 months, I questioned him asking for an annual visit and he half-heartedly agreed.  He put me on an annual visit schedule last year, but then changed it because I had a minor eye issue.  He is not a doctor with a warm bedside manner, but he is an amazing doctor so I have been with him for 9 years.  I instantly regretted asking for the longer wait between appointments, but I can always make an appointment in six months if needed.  I guess I am not adjusted to having my eye disease as I thought.  I had to promise his to check my eyes weekly with the Amsler Grid, which I NEVER do.  This visit brought back a lot of old fears even though it should be a positive step into the future.

Then there was the BIG visit to the neuro-oncologist and MRI.  My mom insisted on coming with me for my MRI since K is away.  I was more anxious about her coming then I was about the scan.  I try to keep my mom away from my brain tumor life as much as possible.  It is always the elephant in the room, but only partly by my creation.  Everything in my family is secretive and hushed.  It has been like this for as long as I can remember.  To be honest some of the "secrets" are very silly things.  I do not think I ever heard any of my family members discussing my brain tumor or seizures.  I wonder about those family late night conversations when I was first diagnosed because I was in the hospital away from it all.  I often wonder how my brain tumor affected my family and friends, but no one wants to bring up the subject.  My mom takes on all of the family's worry and responsibility, so I attempt to help lighten the load by keeping my health issues out of it.  But there was no way that she was letting me go to this appointment alone.  We were a few minutes late for my MRI, so I had to wait over 1.5 hours.  That is when I started to get more anxious because I had nothing to distract me.  When I was called in I had the same nurse from last year and remembered me because of our shared astrological sign.  My guess is that he really remembered me because if how young I am, but he did not say that.  The good thing was that he did not treat me like a 10 year old getting their first MRI, as most nurses/technicians do.  He even allowed me to wear my well prepared metal-free clothing into the MRI!  I took my usual nap in the machine only waking up for the contrast dye.  

Since my MRI was done so late (and they were super busy) I had to wait over 2 hours for NO.  The anxiety really set in when I was waiting in the exam room for an hour.  "Why is she so late, is there something wrong, it must have grown, she must need a second opinion, maybe she is getting the surgeon"- were all the fears running through my head.  A new fellow finally came in and did a very thorough neurological exam.  She asked me so many questions that I questioned if she even read my chart.  Between the neurological exam and questions I was convinced that my tumor was not stable.  As she left the room she casually mentioned that the MRI "looked good."   How dare that b***h let me freak out for that long knowing the MRI results?!  My NO came in with the happiest face that I have ever seen.  She was raving how good the MRI looked and how happy she was that I gained seizure control and was getting on a lower dose of medicine.  She was always very upset that the second surgery did not completely remove the tumor.  I feel she really is concerned with my quality of life and thinks if I used her surgeon he would have removed it all and I would not be dealing with seizures and AEDs.  I appreciate that she shows sincere care about my quality of life, but there really is no way of knowing what could have been.  She then told me what I knew she would say at this appointment if all was well- come back in ONE YEAR!!  I know this is a good thing, but it is also so scary.  I told her of my hesitations.  She repeatedly explained that this is a "slow growing process," so I do not need such close monitoring.  Another part of not needing to see her is because I go to my regular neuro for seizure related issues.  What helps calm my fears the most is that she is very responsive to email.  The one time I emailed her about an increase in headaches she replied hours later with a sooner MRI date.  Knowing that I can contact her easily (unlike my neurologist) makes the wait more bearable.

So out of these four doctor appointments, I now have to return to three of them in one year- August 2013.  Boy it will be a busy month, haha.