Diagnosis...

After two weeks of not really knowing what was going on and going off of what the residents told me in the hospital, I finally got some answers.  Yesterday, September 11, 2013, I finally got to meet with the neurosurgeon, Dr. Richard Schmidt from the University of Utah hospital.  In filling out my paperwork beforehand, I went ahead and referred to Wilbur as Wilbur.  Mercedes and Danielle were both going to the appointment with me and I figured if I didn't say something upfront, we'd just constantly end up having to explain what we were referring to.  The nurse who showed us back to the room initially, Rob, asked how Wilbur was today right off the bat! (which of course we all laughed about)

When Dr. Schmidt came in, his question was "Why Wilbur? Why not Arthur, the astrocytoma!"  I informed him quickly that my Dad's name is Arthur so that name was not an option! (And anyone who knows my Dad would agree).  He later suggested Ollie the Oligoastrocytoma, but when I think of Ollie the only thing that comes to mind is Oliver Queen and since he's a hero who kicks butt and takes names, Ollie's not a good name for a tumor either.  Wilbur is Wilbur. Done.

Dr. Schmidt started out by explaining where Wilbur has made his home in my head and then went into the grading system of brain tumors.  Grade 4 is the malignant type usually cancerous that has spread from other parts of the body; also typically seen in people 60+.  Grade 1 is the most benign but typically develops in children and young adolescents and is caught and removed before adulthood.  So Wilbur is currently classified as a low grade tumor (probably a Grade 2 though they won't know for sure until they can biopsy the tissue.)  If want to read more, here are a couple of links Danielle sent me.

http://www.abta.org/understanding-brain-tumors/types-of-tumors/astrocytoma.html

http://hope.abta.org/site/DocServer/LowGradeAsx.pdf?docID=301

http://www.cancer.net/cancer-types/brain-tumor

Don't get freaked out by the last link!! It's just a good information source.  They DON'T think it's cancer!!!

The rest of this post is the (mostly) serious and (sometimes) scary outline of what is to come:

Step 1:  Because Wilbur has set up shop in a highly functional area of my brain that they have to be super careful with, I will be needing another MRI.  This one is called a Functional MRI, it's the one with fun colors that lights up when different parts of your brain are used.  This will be used to create a "road map" for Dr. Schmidt so that he knows where Wilbur has pushed things (since they're not in the right spot...I guess I can say I'm not right in the head now, can't I?)  Getting this scheduled and the results analyzed will probably take around six weeks to happen.  The stick in the spokes is that I have to make the financial arrangements to pay for the MRI before I can schedule it.  Let's hope I can perhaps get on short-term Medicaid so I can get this scheduled.

Step 2:  Surgery.  Despite my Momma's prayers that Wilbur would just go away in the two weeks since the diagnosis and I'd never have to go under the knife, surgery will happen.  They can't determine for certain that it's completely benign until they have tissue to biopsy and since they're in there anyway, they might as well take as much as they can while I'm there.  The tricky part is going to be using the road map to make sure that they don't paralyze me or make me lose my speech.  This is where the things go a little science fiction on me.  Dr. Schmidt plans to WAKE ME UP in the middle of the surgery and make me answer questions and move my right arm so he can know how much he can remove without doing more harm than good.  Momma said something like this could happen.  I think I literally put the phone down, put my fingers in my ears and started saying "I'm not listening to you!"  And you wouldn't you know it!! THAT's the procedure the doctor want to use on me! Part of me is completely freaked out at the concept and part of me is like someone better have a video camera handy because it's going to be WILD!!  If I remember ANY of it, there will be one crazy post about that!!  Holy Toledo, Batman!! Not sure I'm ready for that part...not gonna lie!

But the supposedly good news about doing this high-tech type of surgery is that my recovery should be reduced in the short term and any deficiencies that are present immediately after the surgery (say if my speech is somewhat slurred) should go away sooner.  So the therapy after surgery is technically Step 3. I will more than likely have problems with my speech and right-side mobility for awhile immediately following surgery but Dr. Schmidt seemed to think I would like recover those abilities completely.

Step 4:  No matter how much of Wilbur they manage to remove, chances are high that some part of him will remain with me.  That means that I will also have to undergo radiation or chemotherapy to shrink him down to size in the short term.  I may have to face the fact that after all this, Wilbur may still be with me for the rest of my life.  Even though he's slow growing, they may never be able to completely "evict" or "assassinate" him.

The timing for all of this is unfortunately still up in the air.  Assuming I can figure out how to get the MRI this fall, the earliest they can do the surgery would be December.  At that point, I'd probably end up waiting until January.  I know it may not be a popular issue right now with some people reading this, but the Affordable Care Act (Obamacare) may end up being the only way for me to get this surgery and avoid medical bankruptcy.  I haven't seen an actual bill for anything yet but just reading through the steps, all I see are $$$ adding up.  The way things stand now, if I don't qualify for Medicaid, I would have a hard time finding insurance at all.  And if I did find insurance they could charge me out the wazoo for it!  Under the Affordable Care Act, I can no longer be denied coverage or charged more because I have a pre-existing condition.  I want to have at least another 50 years with this brain and in this body.  So love it or hate it, right now the Affordable Care Act is working in my favor!