We went to UCLA this past week to get some follow up scans done on their MRI and PET scanner and then had a follow up appointment with Dr. Liau.  We did this down there because their PET scanner is more sensitive to low grade glioma cells, which is what we assumed my tumor was because it has presented and acted that way for so many years.  We wanted to see if that was truly the case and the PET scanner at the local hospital here wouldn’t show that.

Well, the news we were dealt was shocking, to say the least.  I really felt like we would be walking away from UCLA with the recommendation to do further surgery to debulk what had subtly grown over the past few years to hopefully decrease my visual symptoms and seizures and then to continue on the Temodar to either keep the tumor stable or try to get some regression if there wasn’t any, already.  When Dr. Liau walked into the room to greet us, she put down a piece of paper that was clearly a copy of my PET scan.  My eyes were immediately drawn to the glaringly large areas of bright red on my brain scan.  Hot spots.  I knew that wasn’t good.  Not only had my tumor continued to grow since the prior scan, which was only two months ago, but the tumor has now become more aggressive, which is logical considering the amount of tumor growth since last August.  So is it a grade 3 or a grade 4?  We’re not sure.  The only way to know for sure is to operate and get some pathology on the tumor.

The tumor board had just reviewed my scans prior to my appointment with her.  There were several recommendations.  One was to go straight to radiation to slow down the increasing growth and aggressiveness of the tumor.  Another was to do an IV chemo, which has much more severe side effects, similar to what one imagines when they think of chemo (i.e. hair loss, vomiting, etc).  The one that we have decided to do is surgery so she can take out as much as she can and then follow that up with radiation.  If you read my past post, I talked about putting off the radiation card because my tumor wouldn’t be that responsive to radiation because the cells weren’t abnormal enough and we weren’t at the point.  We’re there now.  How quickly things can change.  Surgery is scheduled for February 17th.  Almost exactly 3 years to the day as my prior surgery.  This will be surgery number four.  I can’t believe it!  We figured out from these scans that what we thought were two separate tumors is really one large tumor extending into different portions of my brain.  It’s the original inoperable tumor that has made it’s own path into a deeper part of my brain and created another cluster of cells.  I asked her what she thinks she can get out.  She said she thinks she can get out most of the hot spots, which is so important.  There are some that she can’t touch, though.  If these hot spots are grade 4 cells, it would be devastating.  That renames this tumor to a Glioblastoma Multiforme.  It is a horrible diagnosis and I don’t even want to entertain the thought of that by going into detail about implications of it here.  After about a month of healing from surgery, I will begin radiation either in Salem or up in Portland.  It’s 5 days every week for six weeks.  Ugh.  If there is still tumor after all of this, then IV chemo will probably be next.  The fact that my tumor is inoperable and a high grade puts me into a completely different treatment regimen, now.  We can’t just wait around and see what the tumor is going to do.  We have to keep treating the tumor until it’s gone on the scan.

These tumors are notorious to recur within weeks.  It’s going to be a tough battle.  I knew this day would most certainly come when the tumor upgrades.  I guess I just thought after being stable and low grade for seven years, that it wouldn’t all change so quickly.

We really need prayer for peace and comfort right now.  Our kids will be away from us for awhile while we’re down at UCLA for surgery.  Tyler is older and will understand a little more and be able to see by looking at my head how serious my sickness is.  We don’t talk about it much with him.  We know God’s grace is sufficient.  It’s brought us this far.  But I won’t lie.  We’re scared.  It’s really scary to think of what might be.  We try to rest in God, but we’re human and our emotions are strong.  Thank you for loving on us and continuing to pray for us.  We appreciate it more than you’ll ever know.