Chapter 20: Circling Sharks

Just when I thought it was safe to go back in the water...

Hello, everyone.  I know it has been a couple of months since I had a fresh post, and I apologize for that.  I've been terribly busy at work and home.  When I spend the majority of the day working on the computer, about the last thing I feel like doing is blogging!  But here we are.

First on the agenda, a tribute to George.  George lost his battle with cancer just a few weeks ago.  His wife, Barbara was a rock for him, and she continues to be a person I idolize.  George was a great man, and I can't match the tributes that have already been written for him.  So I just ask that you all pray for his soul and toss in a prayer for his family.  I know they all miss him terribly.

Second up, it is time for my quarterly insurance rant (which I could do weekly).  At the beginning of 2018, my insurance from my ODOT retirement had a subtle change.  The network for outside the SuperMed PPO service area changed.  I was notified by a letter that I would need to find a new radiation oncologist and a general practitioner.  I knew this was coming so I made a doctor appointment with my GP for the last week of December.  She said she'd be happy to refer me to somewhere with a doctor on my plan.  I haven't had the need yet for a GP but I will call her office when I do for a recommendation/referral and to have my records transferred.  She's been my doctor since I moved to Gainesville in 2009.

The worst part about the insurance change was the elimination of my radiation oncologist.  Dr. W and Dr. P (clinical oncologist) were both responsible for saving my life in my opinion.  So of course I was very dismayed when I learned she would no longer be able to treat me.  I filed the forms for "continuation of coverage" which would allow me to continue under her care.  The clause is there specifically for people in my situation who are under the care of a doctor for a continuing illness.  I filled out the papers, sent them in, and a week later got a denial with a list of approved providers in the area.  I was crushed.

Besides losing her, I had a brain MRI scheduled at a facility by North Florida Regional Medical Center where I always have gone for my MRIs. When I showed up the first week of January, they informed me that the facility was no longer covered under my new and improved insurance.   I didn't want to schedule elsewhere so I asked how much it would cost if I didn't use insurance to pay.  I was astounded when they said $400, and I paid it out of my pocket so as not to have to deal with finding a new place and getting the scan in the time frame for which the doctors had ordered it.  It was on this scan that the "dead zone" showed up in the back of my brain.  The immunotherapy drugs had successfully worked on all the small metastatic tumors (mets) on my brain, but the view on the back of my brain had an odd area that they could not tell what it was.  One hypothesis was that the area was dead tissue, and we decided to wait for 3 months and then have another MRI to make sure there was no growth of the dead zone.

Third: Flash forward a few months to April, and time for the MRI to check the growth or lack thereof in the dead zone, also looking for any return of the mets.  (Now I know it is baseball season, but I'm an Indians fan so not discussing the Mets here).  Dr. P referred me to Shands UF hospital, which had 3 different choices of locations for my MRI, and they were listed as a provider by my insurance company.  I scheduled the MRI for the Orthopedic center building, which also houses radiology.  I started the scheduling process about April 10, 2018.  The soonest they had was April 27 and the times available were limited to either 6:30 AM or 8:30 PM.  I took the 6:30 AM.  A few days later they called to get some additional information from me prior to the scan, and informed me that my co-pay was going to be almost $600, which they said was 25% of the total cost.  I hung up and called Invision to verify the cost, and to go there out of my pocket was still $400.  So I canceled UF and had the doctor fax the order to the Invision facility instead.

Yesterday, the 25th of April, Invision called me at 8:30 in the morning and said they had a cancellation for 10:30 and did I want to take that time slot.  I said abso-frigging -lutely.  I went later that morning and got prepped for the MRI.  For brain MRI's they have you wear what looks like a hockey mask before they insert you into the tube.  It takes about 20 minutes for the initial pictures, then they pull you out and inject contrast into  your arm.  My veins have taken a beating throughout my treatments, so the tech took several stabs at it (tee hee), before hitting the vein.  In went the contrast dye which he said was like the consistency of syrup.  It stung like crazy!  Back in the tube for another 6 minutes.  I'm not normally claustrophobic but being in that tube this time just about put me over the edge.

We were out to dinner when I got the call from the Doctor the same day as I had the scan.  That's always a bad sign when they call you that quickly with the results.  The dead zone had grown 2 mm since the previous scan in January, which means the dead zone isn't dead at all.  It's live cancer.  I stepped out of the restaurant to talk to the doctor and she outlined 3 options: 1. Keep monitoring the growth by scanning every 3 months.  Not a good solution just watching something grow.  2.  Gamma knife - a treatment similar to cyberknife in that it can target small, pinpoint areas and apply as needed to those places.  No guarantee that this would work or that they could get it all.  3.  Surgery.  The doctors will consult with the same surgeon who removed my brain tumor in August of 2016 and see if that is an option.  If it is, I will have the surgery in the hopes that the zone can be completely eradicated.

That's all I have for this post.  I will have another post, hopefully in the near future, that elaborates on what path we chose and the expected prognosis.