An unfortunate discussion

A routine physical exam turns out with some questions– those questions turn into an MRI to check my pituitary gland.  Did you know that they pituitary gland is in your brain?  Did you know it contains a lot of functionality that your hormones use– ?  I didn’t until they went in and had a look.  That turned out to be perfectly normal… No issues– but while they were in there, they decided to have a poke around and they found a small tumor.  A TUMOR?  What?  Yeah, you are going to need to get that checked out.  He referred me over to Swedish Hospital, Cherry Hill Campus.  I called for three days straight and didn’t get anything– no calls back, nothing.  Then I tried one last time and I got ahold of a “Pam”, a nurse with the IVY CENTER FOR ADVANCED BRAIN TUMOR INSTITUTE.  Not really a name you ever want to hear.  She said she would get my MRI reviewed by a doctor and she would get back to me in a couple days…
“It can go one of two ways– either the doctor will review and suggest you make an appointment or the doctor will want to see you right away.”

She called back three days later– “Yeah, so the doctor wants to see you right away.”

Shocked, she quickly schedules an appointment for the next week– mid-week.  May 18th.  1pm.  The time trickles by like sand in an hourglass.  When we arrive at the IVY CENTER FOR ADVANCED BRAIN TUMOR INSTITUTE, I am one of the youngest people here, but not the only younger person.  The doctor is running at least an hour late.  More waiting.

When we finally do see him, Dr. Cobbs– he is bright, smiling– he wants to get to know me before running through the medical chart.  We talk for a few moments, I tell him my story– no symptoms, we were looking at pituitary issues, we did an MRI– standard and with contrast.  He nods– starts going into pituitary tumors– oh, those aren’t much concern– people have tumors there all the time, yada yada yada…. I gulp.

“I don’t have pituitary tumors– all clear there.”

His look changes from happy to concerned, off base. “Oh.  Well, we should look at your chart then.”

Silence.

More silence.  Scratching of the brow– confusion over the MRI images– there appear to be lots of them.

“Oh yes.  I recall this subject now.  Yes, this is not a Pituatary Tumor.”

In the end, a lot of scientific terms to describe one thing: unknown tumor.  Unknown what kind, what grade— everything… unknown… So many questions, none of them making it out of my mouth.

In the end, we need to schedule a biopsy to extract a small piece of the tumor to send to pathology for review.

The words just keep spinning by– my head is spinning.

Tumor, Tumor, Cancer, Cancer, Fuck, Fuck….

But look, enough agony here…. Today it’s June 22nd and I am still here right now.  I will be here for quite some time if this tumor has anything to do with it— the Pathology report is back and we met with Dr. Graber yesterday, one of only four Neuro-Oncologists in the region.  They have a weekly “Tumor Board” and he was happy to report that my tumor has the lowest score of any of the tumors recently seen– it is considered a very low grade Oligodendroglioma… Still, its a serious issue, but it’s not something that is going to kill me in the short term.  It’s so low grade that at this point, it’s not going to be treated and we will watch it with brain scans until it begins to show some changes.  Then, we will look at a number of very minor options == the expectation is that this could remain dormant for a number of years.  Once it does start to grow, the general life expectancy is about 13-15 years.  Most dogs don’t even live that long.

Life.  Here it is.  Like a ticking time bomb. Time to get living.

Here is a picture:

The white cloudy area on the right side is the tumor area– it is located deep in brain tissue and doesn’t respond to contrast, which means when it has an active bloodstream, its doesn’t light up, which is a very good sign.. More on this later.  Don’t worry.tumor