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"

Recovering From Brain Surgery

Here are a few really good articles about the horrible recovery process after brain surgery. Isn't the brain remarkable? I'm also going to touch on a few of the items I'm having issues/difficulties with.

My brain after 5th surgery. One side is NOT like the other

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

http://www.everywhereist.com/20-things-you-can-expect-after-brain-surgery/

• When I lean my head forward, it feels like someone is squeezing my head in a vice. There is fluid on the inside and the outside of your brain after surgery. When you bend over, it creates an uncomfortable, painful sensation.  The more I bend down the tighter the vice gets. This makes things difficult - like putting my shoes on, sitting down, and picking things up. A little more than four weeks out and I'm almost able to bend over completely with no pain. I expect in the next week or so this will no longer be an issue.

• It HURTS to open my jaw. I've noticed this in past surgeries and always dread this. They cut the muscles that connects your mouth to your hairline during surgery. Put your finger on your temple and close and open your mouth and you will see what I am talking about. Eating has been fine, but yawning is painful and the dentist today was excruciating. 

  

  No fashion comments - Notice the lean

  
  
  "If your operation was near your temple (between the side of your eye and your hairline), you may find that your jaw is stiff and painful a few days or weeks after surgery. You may find it difficult to open your jaw. This is because the surgeon had to move or cut the muscles of the jaw during your operation. The stiffness gets better by itself in a short time. Making chewing movements or chewing gum helps." http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/surgery/after-brain-tumour-surgery#wound

• Sneezing and Coughing: I think the body knows that it is damaged. My first sneezes were on 2/28, yes I recorded the date because I hadn't sneezed since my first surgery on 2/2. Oh yeah, it hurt. I was finally able to blow my nose without pain on 3/6. Coughing is a different story. It still hurts.

• Bumps: Driving over the smallest bumps on the road hurts my head like crazy. The drive from Stanford to our house was the worst 22 miles. I would cringe when I would see the car in front of me hit even the smallest of bumps in the road. This subsided about 2 weeks into my recovery.

• I can count the number of T.V. shows I've been able to watch on both hands since my surgery. The effect of the brain surgeries on my attention span is very REAL - it's been getting better with time, but it has been slower than I've experienced with my last two surgeries.  

We had a follow up with my Epilepsy doctor on Tuesday. I have physical, speech and occupational therapies on Thursday and Friday, an MRI on Sunday and Radiation Therapy begins this Tuesday, 3/17.

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

Seizures - 4 Weeks Out

Seizure Update: I'm extremely happy to report that I haven't had a seizure since I left the hospital, and I don't really remember those ones. I am on two anti-seizure medicines and the ultimate goal is to be able to go to zero.

March 26 is Epilepsy Awareness Day - Wear purple and most importantly read what to do if someone is having a seizure:

 www.epilepsy.com and www.epilepsymichigan.org.

I think I have said this before, but seizures are the WORST part of my life. Worse than the tumor, surgeries, prior recovery, current recovery process, past and future chemo, radiation and anything I have to go through in my life.

I had a major seizure just before this past Thanksgiving. So, I was put on a second anti-seizure medication.  Between November and my recent surgeries, I was having about 3-4 Aura's a week, a type of seizure (also called simple partial seizures). Fortunately, I can sense one coming on and I take an Ativan (in my case, used as a rescue med), lie down on the ground and wait it out. Occasionally, my right arm will start moving uncontrollably, my head will pull to the right, and I cannot talk. During Aura's, I don't lose consciousness and they typically last only a minute or so. Because I can sense them, I have time to put on calming music and I feel like I can stop them, sometimes, by concentrating on the music and deep breathing. I'm very fortunate that I usually feel these seizures coming. Once I get through radiation, I hope to get down to one medication and then over time be taken off  both. This is a huge goal of mine since I don't like the way the medications make me feel.  Thinking and functioning is hard.

In 2012, I fractured the transverse process at C7 in my back when I fell during a seizure at work. I was alone in my office and  was unconscious for about an hour before coming to. My neck was extremely sore for a few weeks and the nerve running down my left arm was sore for nearly a year. Moving my arm at all during the first month sent a sharp nerve pain down my left arm and was unbelievably painful at my elbow. Also, my finger tips were numb. I finally regained the feeling of my pointer finger after about a year.

The fall also impacted my left shoulder. I had been going to physical therapy for about two months up until my recent surgeries. My shoulder was constantly hurting me and I was unable to move it in certain directions. I have about 80% of the movement now. The only benefit of my recent hospital stay was that my shoulder was not used and was rested. I remember being surprised that it wasn't aching like it usually does. It felt a lot better - either that or I had larger issues and was just unaware of the shoulder pain. Now that my right hand is only functioning at about 50%, I'm over using my left arm which has caused my shoulder pain again. I plan to mention this to my physical therapist - I'm clearly broken and what better time to work on my shoulder too.

I have no idea how others deal with the recovery process AND having to deal with seizures. I'm not sure that I could do it...

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

The Making of The Mask - Pre Radiation Set-Up

Well, today was the start of my radiation therapy. I had to fast for three hours - I ate at exactly 3 hours before and RIGHT after. Fay made sure to pack me lunch.

I checked in and was brought back to get my IV line put in - ON TIME again - awesome. It wasn't like the hospital experience where one nurse missed my vein a total of five times. The nurse today got it on the first try and I was all set to go....then we were told that they were running an hour behind schedule... ugh. So much for on time.

After a few more questions for Dr. Swift, my Radio-Oncologist, and an hour wait we were brought into the Computed Tomography (CT) room where Fay documented the entire process with pictures and some video.


They brought the "mask" out and I was shocked. It was a thin piece of flat plastic about the size of a piece of binder paper. It was placed into a bath of hot water for several minutes and was pulled out with tongs.

The technician then placed the mask around my face and head. Stretching it and molding it around my face. Then attaching the flat piece to the table with plastic clips.

It felt like a very hot blanket on my face. For someone with claustrophobia, it would be their worst nightmare. It's crucial that I don't move my head when I'm inside the radiation machine, so the mask will ensure that I am still.

Before

The plan is to merge, on a computer, my MRI before surgery, my MRI just after surgery and the two CT scans from today in order to identify the exact location and treatment for my tumor. Then Dr. Swift creates a map that the radiation machine uses to "zap" (technical term) my tumor from 360 degrees every day, except weekends, for 6 weeks.

CT scans are pretty quick compared to MRI's which can last 45 minutes to one hour.  After the mask hardened, the technician left the room for my first scan. Since I was asked to keep my eyes closed, and stickers were placed on my eyelids, I couldn't keep track of time but the first one felt like no longer than 5 minutes.

I was brought out of the device, eyes still closed, connected to the CT contrast material and sent back in the machine for another scan, this time with contrast.

After

It started with a voice, over a loud speaker, saying that the contrast was being put into my veins.  Then, I felt a warming sensation all over my body. It slowly got warmer and warmer and then my body got down right hot! It only lasted a minute or so. It was the opposite of the MRI contrast, which sends a cooling sensation. Then after approximately 5 minutes I was done and the Mask was FINALLY removed!

I was in the mask for approximately 15 minutes. As time passed, I became more and more panicky. Especially, with my eyes closed.  I have no idea how someone who has any difficulty with claustrophobia handles it.

We were then given a date for our first radiation appointment (Tuesday, March 17th), my IV was removed, and I was told to drink eight 8oz glasses of water to help flush the contrast from my body, and we were allowed to leave.

The entire experience was surreal...

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