Visitors and Radiation Week 1-2

Week 7 of recovery from brain surgery and I'm officially RECOVERED - from brain surgery that is. I can lean all the way forward without the vice like pressure. I'm still working with Speech and Occupational therapies but that has been put on hold until I finish my Radiation Treatment.

Today, I'm definitely feeling the effects of radiation. I still plan to walk 4 miles everyday, but it will be incredibly hard. I'm exhausted. I slept about 10 hours last night and the night before and am still taking 2-3 naps a day. The radiation is a cumulative effect and I'm already this tired!

Julie and Chris were kind enough to read my last blog when I was complaining about my Doctor's order of a 1 beer limit. I said something about the Doctor not specifying how large of a beer. Well, they were awesome and brought me a fairly large beer.

Victor, Saori and Shoka came up for another visit from Southern California. It was so good to see them. Enjoy your trip back to Japan Shoka and Saori! See you again soon.

Saori, Shoka, my beer and Chris

It's been awhile since I have seen this view - Thanks Julie

One Mile Times - Just to see how I am recovering from surgery and how the radiation fatigue impacts me....

Week 4 - 8:51
Week 6 - 7:52 - Ran on 3/16 - Started radiation 3/17.
Week 7 - 7:19

I will probably rethink this 1 mile plan. Maybe like hours walked/run during the week. I need to think on it.

Many thanks to everyone that has helped keep me and my family's spirits up with cards, texts, email, visits, etc. I still have an uphill battle and my down days but as I write this post I can't believe how far I've come. Radiation and Chemo doesn't have anything on the horrible recovery process from surgery.  Mental State: feeling fortunate

For those that are interested, I've uploaded the entire video of the "Cancer Killing Machine". The machine takes two x-rays to ensure I'm lined up correctly then the radiation begins at 3:40.

Radiation Treatment & Check-In with Dr. Swift

Clink to enlarge - Hard to see, but the Pink Area receives 100% radiation

3 down! So far, so good. Although the mask is too tight, I'm happy with how the radiation is going. Really, getting our car back from valet takes 5x's as long as the entire time I am in the room. Actually, it takes more time parking than we are actually in the hospital.


The mask is put on, and then the entire cancer killing machine (my technical name) rotates around me. It starts above my face then moves to the left around my head. It's crazy to think that it is spitting out radiation the entire time it rotates. Then it stops, rotates the other way and then I'm done.

The door to the room is crazy thick. They tell me I'm not radioactive, but given the thickness of the door, you would think that I am. 

After my radiation treatment, we met with Dr. Swift to discuss how it was going and to see if I was having any issues. Fay asked him if I could shave my head. We were told by the nurse, after my first treatment on Tuesday, that I should not because it would irritate my skin too much. Thankfully, Dr. Swift said yes! I haven't grown my hair out for six weeks since I was 15. I can't imagine what I would look like. I'm UPSET that Fay asked how many beers I can drink per day during treatment. Dr. Swift said one. ONE. Can you believe that I am limited to ONE. Though, he didn't say how large of a beer....

We had to cancel all physical, occupational and speech therapy sessions this week due to the timing of the Radiation Therapy. But, I've been doing my homework and stretches at home and I have walked 4 miles per day. I've had to nap every day, but I'm trying to limit the naps to 1 hour.

I took a picture of my MRI's the day after my surgery, Feb 10th, to compare with the one from last Sunday, March 15th. Amazing how much of the fluid has been absorbed. 

After surgery on left, 5 weeks out on right

1 Down... 29 To Go

Today was Josh's first Radiation treatment. It was no joke!

The waiting room was NOT awesome. When you first get there, there is a waiting room like any other - chairs, tables, plants, coffee, water, magazines, etc. But then, there's THE waiting room. This one sucks. This is where patients wait in their gowns and it is depressing! Most patients looked pretty sick. Like the walking dead. I kept thinking, we don't belong here.That sounds awful to say, but it's true. It was sad and scary.

We sat there, among them, waiting for Josh's turn to be radiated.  I was so glad they let me go with him. I was actually scared to be left there.  I know it's not the right thing to say, but this Blog is about being truthful and sharing our experiences.

Once inside the Radiation Room, it was all business. No small talk. They had him on the table, mask on, lined him up, put stickers around eyes, and told him it would just take a few minutes. There was no easing into it. Next thing I know, I'm leaving the room with the technicians and he is left in there alone.

I was brought to another "waiting area" just outside the Radiation Room, which was like a cubicle. I hadn't even been seated but a minute when I saw the BEAM ON sign start flashing. It was SCARY. They were radiating my husband. I actually began to shake. The sign stopped flashing. Then a minute later the BEAM ON sign started flashing again.

A minute later, Josh was walking out of the room and that was it. It was over...but only for today, 29 more to go. When Josh got to me, his face had marks all over it. The mask was so tight that it left severe marks. It made my stomach hurt looking at him. Next, we were brought to a room where a nurse told him what to expect, precautions to take and gave us the times for our next three sessions.

We were told to expect fatigue that will increase over time and will continue for about a month once treatment is over (there will be a cumulative effect).  Josh was told about avoiding sun (more radiation), using sunscreen and wearing a hat, moisturizing the area 3-4 times per day (treat the area like a sunburn), wash with only lukewarm water, use baby shampoo, and do not shave the area. Hair loss/patchy hair can be expected around week 3.

As we were sitting there, Josh asked if it was normal to feel nauseous. The nurse said that some people do experience it and that they would get him a prescription to use before his next appointment. I was thinking that this traumatizing experience was enough to cause anyone to be nauseous.

I know what I was thinking and feeling all day...the anticipation of the appointment, the drive there, the walk into the building, the waiting room, the radiation room, the waiting... I can only imagine what Josh felt.  He showed no fear. And, I don't know how.

I'm sure, at some point, he'll have something to say about it.

So Much To Say & So Many To Thank

Where do we begin? How can we possibly express how grateful we are to all of you? Thank you just doesn't seem enough. But...THANK YOU for all of the love and support you've shown our family - the cards, emails, texts, posts - all the kind words, the visits, the beautiful flowers, the meals, the groceries, the home baked cookies and apple pie, the Nothing Bundt Cupcakes, the thoughtful Care Packages from near and far, the custom made candles, for dinners, magically, from Ohio, for taking the boys out for some fun, to the teachers who care about and keep an eye on our boys, to Monica for carefully shaving Josh's head when I was too scared to, to my mom for squeezing onto that tiny cot with me in that horrible hospital room and our family for caring for and loving our boys, for driving the boys to & from school, for talks on the phone to keep me calm while Josh was in surgery, for walking with Josh, for Julie who somehow always swoops in at the perfect times, for the continual positive thoughts, for the generosity and for the gift of true friendships...
It has all meant so much to us and has been a huge part in getting us through these rough times.  It's such a good feeling to know so many people care about us - right here at home and from all over the world, including Josh's awesome Streetboarding family.
Thank you for keeping Josh's spirits up and giving him motivation to keep on...
Love,
Josh, Fay, Dylan & Hayden

Bran Tumor Surgery Recovery Progress - 4 weeks

Week 4 - Not much has changed with therapy sessions since week 3. 

Occupational Therapy: I requested my strength to be tested again because I've noticed a significant improvement. I was shocked to learn that I have only increased 5 lbs of strength in my right hand! I thought and expected my hand was nearly as strong as my left. I'm still at about 50% of my left hand!  Disappointed for sure.

Field of Vision Test

I took a field of vision test to rate my processing speed, divided attention, and selective attention. I was nervous to take the test as it could have a possible impact on my driving. A small car or truck would flash in a white box (very briefly) and I would have to click on which one I saw. Then, in addition to the object in the box, either a car or truck would flash somewhere on the computer screen (out of my direct line of vision - testing my peripheral vision). I had to determine if it was a car or truck and click on the area that I saw it flash (see picture). The speed of the flashing objects increased quickly and greatly. The test was really hard. Thankfully I passed at "normal" in all categories. 


I continued to practice at the fairly simple task (video below). The first video is my left hand compared to my right (dominant but weak) hand a week ago and the second part of the video was taken today.  I think I may have mistaken strength for dexterity.


Speech Therapy: I was pretty tired today and didn't do that well in speech class. I was having issues describing attributes of items, like a tree or house.  Needless to say, I was glad when it was over. I have some homework to complete when I'm not so tired.

I really wanted to use my left hand

Physical Therapy:  
Nothing new to report after my Physical Therapy session. However, my friend Julie, was kind enough to take me on my first hike this week. We made it much further than I planned - 5 miles at Rancho San Antonio. Barbara, a friend who is a physical therapist, offered to help me try and straighten up and walk better. The kindness of friends is really helping me get through things.


State of Mind: I've read everywhere that it's important to have a daily exercise routine in place before going into radiation therapy to help combat the fatigue. I will attempt to walk 4 miles every day and run at least 1 mile every week. I may need to adjust as necessary but I'm going in with this plan. I'll add a radiation section next week to keep everyone updated.

I feel for Fay for having to drive me to the thousands of appointments and I appreciate it very much. I know I don't make the drive any easier - sorry Fay!

We will also need to cancel all future therapy sessions and work around the radiation schedule. Occupational and Speech therapies are a priority -  in that order with Physical therapy being last.

Feeling "irritated" in moving into this new phase, which is an upgrade from last weeks feelings of being "defeated"

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay"