Goble

Stephen was able to get off work early and meet me at Dr. Goble's office, which was a nice comfort. I was so glad to have company and to not be alone.

I filled out a bit of paperwork, but not much, as I am already an established patient.

I was called back and did the typical stats--weight/BP etc.  All that was fine.

I was asked about pain and other symptoms--how's my breathing, stuff like that.

We then moved into the exam room and waited for the doctor.  He walked in with a med student, and we said it was fine that he sit in.

Dr. Goble did an exam and questioning.  He kept asking about my breathing.  He checked my reflexes, my vision, (wanted me to remind him about my eye injury), and checked my strength in pushing against his pressure with arms and legs.  All that seemed fine.

Then explained that my MRI results showed tumors....the first I'd heard that word, and that's when it hit me...how real and scary this was.  He asked if we wanted to see the MRI, and Stephen piped up, "YES!"

As Dr. Goble was pulling up the files on his computer, he explained that the MRI basically cuts my skull into a "loaf of bread," in all directions, so they can scan through each "slice" and see what's going on.

When the images on the screen came up, and Dr. Goble began scrolling through the "slices," that's when I knew it was bad.  Stephen said something like, "MAN!" and just started crying.  The tears were rolling down his cheeks, and I knew that MRI was not good.  It looked like every slice of my brain loaf had multiple moldy spots...on both sides, and all over.

Dr. Goble was showing how neurosurgery wasn't really an option, as there were too many tumors for surgery to help.  We could do radiation and hopefully alleviate some of my symptoms and give me some relief from the headaches and nausea.

Stephen asked how much time I had, and Dr. Goble explained that it was hard to tell at this point because they don't know how I'll respond to radiation, but just from the scans, it would be 6 months to a year.

There's no real hope of a cure....it's just how much time am I going to get.

It's not supposed to be this way!

As Dr. Goble went back with his student in the hall to collect some paperwork, Stephen overheard him tell the student that I have a very aggressive type of cancer.

He came back and explained that I would do full brain radiation for 10 sessions, basically 10 days in a row.  Then, they would wait about 6 weeks to let everything process and scan me again.  At that point, they'd be able to see if and how well the radiation worked, which would give them a better clue of how to proceed.

The radiation shouldn't have too many damaging effects on my abilities.  I will probably just be fatigued.  The biggest thing is that I will lose my hair, and this time it probably won't grow back, as it will be fried off.

They will only be radiating my brain, so I won't have problems with my esophagus or other body parts.  I also shouldn't have any memory loss or other lessening of brain function, and to help with that, they are starting me on a drug used for dementia patients.  It will just give my brain extra protection.  I start off on a very low dose and work up to the highest.  They will keep me on the steroids, but will eventually start tapering those down to a place where I will still be comfortable, but not so reliant on them.  At the same time, the radiation should help with my symptoms, so that should even out.

We asked how this got so bad so fast.  He said that it's a great question.  A PET scan only shows from the bottom of the ears to the knees.  Its job is to scan for high glucose activated cells, which are most likely areas of cancer, which is a main reason why I do a sugar/carb fast for 24 hours prior to the test. The brain has a high level of activity all the time, so a PET scan doesn't differentiate between cancer and normal brain activity.  In theory, my body was doing so well in remission with the herceptin and perjeta, and I wasn't having any symptoms, so there was no reason to seek further studies.

Until this week when these symptoms came up, at least.

He didn't think this was here 6 months ago, maybe not even 4 months ago.  It's so aggressive, it just came up so quickly, and it finally just started putting so much pressure on my brain and affecting my 4th ventricle, which is what was causing the symptoms.

I could stay that day and get fitted for the radiation mask, which I chose to do.

I went back into another room and had to remove all metal.  I laid back on a table and had this wet, hot mold placed over my face.  It was hard to breath through and the tears made it hard to endure, as well.  We had to let it dry up and fit to my face.  Then, I was scanned in order to mark up the mask for the proper placement for radiation.  Before too long, she pulled that thing off my face and I was able to leave.

Then, it was time to go home and tell the boys.

That was NOT fun at all.

Kyle was quiet.

Ryan said, "I don't want Mom to die.  She's not supposed to die when I'm a kid.  She's not supposed to die until I'm an adult and have my own kids.  I don't want that to happen."

Evan was kind of clueless.  He just kept saying, "Don't cry.  Don't cry.  If you don't cry, it's all better."

I am so sad that they are all so young and it feels as if they won't remember me.  I've tried so hard to be a great mom, but those early years are so important, but fading in the memory as time goes on.

Kyle had soccer practice.  I took a bath.  I laid in bed an fell asleep.  It was a long, hard day.