Only 6 more days to go

I picked up all of my health records from Stanford Hospital this week. This consisted of 3,677 pages detailing my care and over 14,000 images from 2015 alone.

Click to enlarge

Here is one of the CT images - during my stay. The grid was placed on my brain during the first surgery and was removed during my third craniotomy a week later.

Crazy enough image, but if you look closely you will see the two prior tumor resection sights. They're in the upper right corner where the seizure grids bend in a little. This grid was placed on February 2, 2015, You can also see the 4 or so wires that are coming out of my skull and were wrapped up and connected to a seizure monitor for the week. They monitor each number on the grids for any seizure activity. This didn't go so well as I had to have an emergency surgery two days later to deal with bleeding in the brain. But, everything was sorted out by Monday of the following week when the grid was removed, a seizure focus sight was removed and 80% of my tumor was removed. It's amazing the pictures they can get.

I asked the radiation therapy technicians today if anyone has sneezed while in the mask (you cannot speak once you are in it because it locks in your entire head including your jaw in place) - they said yes, that it has happened a few times and assured me that I didn't want to sneeze. I didn't sneeze!

With six days left of radiation, I'm getting excited - as excited as one can be for ending radiation.  I'm trying to think of ways to smash my radiation mask - any ideas, submit below. I have times when I have some decent energy so here is a picture of me relearning front flip 180's. For those not familiar, yes, I'm supposed to be sideways. For those that know, I haven't landed a rodeo yet but I'm getting close!

I've been walking, skipping rope and even running in between my bouts of fatigue. Thankfully, other than that, the hair loss is the only symptom I've had since I started.  I'll start doing occupational and speech therapy again as soon as radiation is over.


Feeling good today that I only have a few more radiation treatments to go!

Spring Break

The kids are on Spring Break this week. Dylan is in Washington DC on an 8th grade school trip. Hayden is home with us and enjoying some undivided attention!
Hayden's week started off with Sundae FunDay with the Junios...delicious and so much fun. Golfland, MOD Pizza, the candy shop, and Peet's are all on his Spring Break TO DO list. Looking forward to seeing Esther and J&J too! As a bonus, breakfast on the way to treatment today with Ron & family.

                                          Commiserating after the bus left for Washington DC

           Fun in the sun with Lo                                                       Spring Breakers                           


Although it's Spring Break, Radiation Treatment and its effects continue.
We've definitely seen a lot of hair loss! Not just on one side, but on both sides now. Hairline is insane - it starts way past the midpoint of the head. The redness from radiation is now speckled with a lot of freckles. Fatigue is about the same. Naps and more naps. Not much of an appetite. Attitude and mood are good.

The countdown continues...

I've thrown in the towel and just decided to shave my head. I'm bald, but I look a lot less freaky. I WON'T wear a hat so this is my solution to patchy bald spots.  I'm still losing my hair but now I don't notice it as much.

I'm shocked at how much the fatigue has set in. I'm sleeping about 12 hours a day. About 8-10 through the night and the rest throughout the day. I still have energy at times so I'm still walking and even getting in some work-outs. It's a different kind of tired than just being tired and no amount of sleep will relieve it. Sometimes I have energy and other times it is too much for me to walk to the kitchen. Maybe best described by a light switch - sometimes it's on and other times it off.

Radiation doing it's job

I'm looking forward to the end of radiation. Only 11 more treatments to go.  I've seen other patients ringing a bell at the hospital.  All I want to do is drink two beers, smash my mask (yes you do get to take it home) and get on with my life. The radiation effects are expected to have a cumulative effect that can last at least a month. So, I expect I will be low on energy. I start chemo one month post radiation.

I haven't experienced any headaches which are a common side effect of radiation for a brain tumor. Seizures are another side effect of radiation and I've had none. I've been seizure free now for more than two months! It's awesome.

Thankfully the only effects that I have (besides fatigue) is hair loss and scalp irritation/pain /sensitivity. Though, this has subsided since my hair fell out.

I'm sure there are worse commutes. The 22 miles to and from Stanford has been a "mostly" smooth ride. Though, it's not for the best reason I can imagine. Still, the daily ride could be much worse - So I'll take it.

Thank you to Julie and family for the sushi dinner this week. It was delicious.

What a difference a day makes!

Well today it's much worse....
Radiation Session Day #16

It's Official - Halfway Point of Radiation

"Patches" 

It's been quite a first few months of the year - actually we are only a few days into the second quarter and I've gone through quite a lot. Three brain surgeries, a few seizures, and I'm halfway done with radiation, but who's counting? - We are! 15 out of 30 - DONE. Only 15 more to go...and then a month off.  Then a year of Chemotherapy.  I've done 12 months of chemo before (2007) and don't expect a large impact on my QOL.  Quality of Life - Who new they had an abbreviation for that? Every day when we get in the car and head to Stanford, Fay and I talk about how our days feel like that movie, Ground Hog Day.

My hair has started falling out. A little at first but, it's about to get a whole lot worse. I've nicknamed myself  "Patches".  I'm not going to let this get me down. Or slow me down - Adam, if you're reading this, and I know you are - I challenge you to a 1/2 marathon this YEAR!

"Patches", Hayden, Gio and my nephew Quinn

Aly, Lisa and Kim were kind enough to get our family tickets to the San Jose Earthquakes soccer game on Easter Sunday. My heart breaks for Kim and her young kids, she just recently lost her husband to a very aggressive type of brain tumor. She's so generous to be thinking of us even while she is dealing with so much. Thank you...

Dylan and Fay stayed home because they weren't feeling well so Hayden brought along a friend and I took my nephew, Quinn. We had a great time, especially Hayden!

Work Related: My boss is managing my departments, employees and projects while I am on leave. He was also kind enough to take me out to dinner and A BEER a few weeks ago when he was in town from "God's Country" as he calls it - Also, known as Southern California. I wonder how long this one beer thing will last...

My boss, Ron and Patches