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

Checking Back In...by Fay

Today I got a call while I was picking up Dylan from school.  It was Josh - telling me that his hair is falling out. We were told that it would happen, but it is still startling to see it happening.

What I'm about to say is negative. I know it. And, after I say it, I also know that we are fortunate. Things could be worse. People are worse off than us. I shouldn't complain. But, knowing all that, still doesn't make things any easier.

Things haven't been great. We are both on edge and snapping at each other. The drive to and from Radiation each day isn't pleasant. We hardly talk. Though we do laugh about the fact that not a drive has gone by that we haven't heard Taylor Swift's, "Blank Space" at least once and Maroon 5's "Sugar". It's OK for me but I think Josh might go crazy. 
The whole experience is really wearing me down. I can't imagine how it must be for Josh. You can't really imagine how much of a time sink it is. And, the emotional toll it is taking. Today was treatment #14 out of 30.
In an attempt to have something to look forward to, we plan one day a week that we get to buy lunch on the way back from treatment. So, on Wednesdays, we've been going to The Habit for burgers and fries.

Josh is definitely tired. When I came home from taking the boys to school this morning, he was already back in bed and asleep. He alternates between naps and walks.

If we haven't said thanks lately, please know that we feel thankful to have such supportive family and friends. The kindness does not go unnoticed. I feel like I'm just barely keeping my head above water - I always plan to send thank you notes but...
Thanks Mom, for the chicken pot pie, helping on the Rainforest diorama and for being such a good listener. We couldn't do it without you.
Thank you to Esther for taking care of Hayden.
Thank you to Monica and family for the beer. Josh really appreciated it. All the little notes and flowers mean so much, too. Monica - I guess he won't be needing your hair cutting services again any time soon.

After writing all this, I realize that I need an attitude adjustment. Starting tomorrow, I will re-set and start fresh. Wish me luck!

Here's a look back at that first shave after surgery.