Brain Tumor Journey

2017-01-29-17-47-47

It all begins. 

This journey began on Sunday, November 20 at 5:15 p.m

It’s a journey no one wanted to take, but that’s just how it goes sometimes I guess.

We were all hanging out together that Sunday. Kate wasn’t working. Robert was home. We we just enjoying the beginning of Thanksgiving break looking forward to a relaxing week off, a lot of good eating and time with family . Kate, Christine, and I had thought about going wine tasting up in Amador, but for some reason, we just never got out the door.

I was sitting down at the end of the dining room where I always sit. Kate was standing by the refrigerator, Christine was near the sink, and Robert was standing on the other side of the granite island.  They were all talking about what we were going to have for dinner and before I knew it Robert was on the floor in front of the refrigerator in the middle of a gran mal seizure. Immediately Kate had him on his side and I came over to hold him down while Kate called 911. As a former neurotrama nurse at UCLA, she knew want was going on and exactly what to do.

The first responders arrived in about five minutes and soon Robert was on his way to Kaiser Roseville. Robert was still out of it and it was clear he was not fully back.

We all got over there as soon as we could and then the waiting began. First Robert had a CT scan and then they took him off for his first MRI. They initial diagnosis was that there was something on the MRI, but it did not appear to be a tumor. The Nemys, Stuart, Renee, and Jessica,  heard what was going on  and came right over – so great to see them. We all gathered in a closed  Target Starbuck’s as we searched for some coffee and a place to chat and meaning in all this craziness.

Robert got discharged and they put him on Kepra, an antiseizure medication and we scheduled a time the next week when we would meet with a neurologist after he consulted on what was seen on the MRI.

What I have observed about this whole process is the distinct ebb and flow and rhythm of it all. First you have an event or some bad news that has to be dealt with. Then you readjust how you look at the new reality and look positively and hopefully toward the next milestone looming in the future

New View of the MRI. 

When we met with the neurologist, the focus had changed. They were all beginning to  call it a tumor now. Yes, that’s right a brain tumor. A new obstacle we would have to come to grips with.

Dr. Chakrabarti is our man. 

As we progressed through the process soon a neurosurgeon, Dr. Chakrabarti, was called in and we met him at Kaiser on Morse Avenue and got more details on the upcoming surgery to remove the tumor. Within a week the scheduler called and the surgery was set for Monday, January 30.

This allowed us to be in limbo for nearly six weeks as we waited  for the day of the surgery to arrive. When you are in these periods of waiting, you pretend on some level that things are ok or getting better or at least the next milestone with bring something positive and things will begin moving in a better direction.

Ruth’s Chris. Never going back there again.

Robert had joked that he wanted to go to Ruth’s Chris for his presurgery meal. Zoe had come up to see him and so we all decided that their happy hour would be perfect. Which it was until both Robert and I got sick early in the morning of the surgery. I was actually a little worried that Robert had the flu and that they might actually cancel the surgery.Let’s just say that RC has left a bit of a bad taste in our mouths

Surgery Day- January 30

Robert had to be at Kaiser Morse for the surgery by 6 a.m. on Monday, January 30, the Jordan entourage was up and moving by four. At least we got a great parking spot. We got him checked in and we eventually talked with the aenestheolgist and Dr. Chakrabarti and he predicted the surgery which would start about 7:30 might go until 2.

Post surgery update

Remarkably the surgery was completed by noon and when we spoke to Dr. Chakrabarti, he was very upbeat about how he was able to get most of the margins and that every thing looked real good.

The pathology is in – Friday, February 19. The new “normal.”

Hundreds of people–literally around the world–had been praying for Robert throughout this process. Everyone was convinced that the tumor would turn out to be a low grade one (level 1 or 2) and that he could get back to living his life  – taking his welding classes back at ARC. And so were we.

As the neuro oncologist began telling us what he knew, it was clear that the results were not exactly what we had been hoping for. Anaplastic Astrocytoma. Level 3. Aggressive. Chemo. Radiation. None of these words were we prepared for.

The real blow for me was when I called Courney Gessford, the niece of Stuart and Renee Nemy, who has been through there tumor surgeries, to tell her all that we knew and I finally realized that she was just a level two. This is not good. Not good at all I thought.

Chemo. Radiation. Seven Weeks. Oh my!

On Thursday February 16, the Jordan entourage all trudged out near the Galleria to the Kaiser and Radiation Center to learn what treatments lay ahead.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s