Brain Tumor Recovery Progress Report

I'm just past three weeks since my brain surgeries and I continue to improve in all areas. Since I am on short term leave from work, this blog has been a good outlet for me to stay busy.

Homemade torture device

Occupational Therapy: I didn't have occupational therapy this week. Though, at home, I continue to work with the Thera-Putty on strengthening my right hand. It's difficult to explain but I have to think about what movements I want to do. Do this: lay your dominant hand flat on a table with your fingers and thumbs together. Now "walk" each finger out starting with your thumb, then the fingers. I need to concentrate on moving each finger on my dominant right hand. It's very discouraging the amount of thought and energy I need to expend to do this simple process.Think about which finger I need to move, then engage, then focus on lifting it up, engage, move it, etc. See video below.

I've noticed my strength and accuracy getting a little better, I have touch typing back (with errors) but I still have a long way to go. I've also asked my father-in-law to build me my own torture device. I'm happy to report that I no longer drag the nut backwards.

Speech Therapy: Don't my speech therapists look nice - well once we get into what my youngest son calls "1st grade worksheets" (he's in 2nd grade) my therapists become...not so nice.  Just kidding, they are so nice. They are always smiling and always encouraging me but, I still can't stand the work. It's the most challenging of my therapies for sure. More worksheets completed and more homework assigned. Recently, they've started an exercise where they give me 4 words and I have to use them in a sentence and then at the end, recall the original 4 words. A week ago, I wasn't able to retain three words.  As the brain swelling goes down and since I've tapered off of the pain medication, I've noticed an improvement.

My Speech Therapists

Notice the clean face shave - I can finally handle a razor (with two hands) however, it took me quite a long time



Physical Therapy: I had physical therapy today as well. It's amazing how far I've come! I've gone from walking around our house in terrible pain to recently running a mile! The only thing is my head still hurts if I lean forward and I still have a right side droop. If I can get my core muscles back to normal and fix my lean I should be back on track. I'm anxious to get back to running and hiking to stay fit and keep my mind off of all of the other issues that I am dealing with. Including the new wrench in the puzzle, fatigue caused by radiation.

Finger strengthening exercises with "Putty"

State of Mind: I'm still struggling. The surgery and recovery process has been extremely difficult on my mind, no pun intended, and body. Radiation begins soon and I'm really worried about the side effects, mostly fatigue and memory concerns. I know I'm fortunate for someone in my position and have come through five surgeries "relatively OK" but, it doesn't always feel like that... Feeling defeated.

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

Up and Running

So, I attempted to run today. The plan was to run/walk for 1 mile just to get a new baseline. Of course it was dependent upon how I felt. It's only been a few weeks since my brain surgeries so I told myself I would take it slow - that went out the window. My headache went away in the first 100 meters so I was able to keep running for the mile.

Results of my track workout: 1 mile in 8:51 minutes. While this is far slower than I run, I was happy with the result. I was expecting somewhere between 10-12 minutes with a combination of walking and running. I was dragging my foot occasionally around the track so I expect I wasn't running straight the whole time.

Also, my max heart rate is 180 and I was running at 182 so I won't be pushing myself that hard again for quite some time.

Fay took a picture of my "lean". As you can see, I'm pretty crooked. My body is leaning and it's most noticeable in my elbows. My left elbow is more than an inch or two above my right. I still have some work to do!


On Saturday, I continued to work on my memory and played some brain games with my niece Lola and my oldest son, Dylan. Dylan is so helpful, too helpful - he won't let me do or lift anything around the house.


I showed Lola the 15 different occupational exercises I do with my Thera-Putty which is meant to improve my fine motor skills. Just trying to roll and shape the putty into a round ball is crazy hard, not to mention all the specific exercises I have to do.

I ended the weekend by meeting up with Chris and Julie for a visit and some drinks. They have been absolutely wonderful to our family during this difficult time. Taking the boys out, dropping care packages off, and making us meals.  I don't know how we'll ever repay them!


"Thoughts and feelings by Josh, organization and editing by Fay" 

Brain Surgery Recovery Report

I do this blog for three reasons. 1. It is a form of therapy for me. 2. To update friends and family on my progress and 3. To share with others who may be going through a similar challenge - An initial diagnosis of a brain tumor, cancer, or fighting thru the recovery process.

I received a call from my NeuroOncologist today. We will meet tomorrow and I suspect that we will review my treatment options that were discussed at the "Tumor Board". While I wait for the treatment options my therapy continues.

Occupational Therapy: Today was the first real day of therapy and was extremely frustrating!! I honestly just want to give up and just use my left hand for everything.  The gross motor skills of my hand are fine, but the fine motor skills of the hand are insanely difficult for me to train.

I was given some "Thera-putty" to use at home which will help to strengthen my hand and fingers.

Today, my therapist brought out a HORRIBLE device (see picture below) for some fine motor exercises. She had me pick up a nut and tighten it in place. This exercise was so irritating because for every turn of the nut my hand would "drag" the nut backwards a half a turn; My hand was shaking by the end of the session.

Speech Therapy: Memory, picturing scenes/places, naming categories and word recall continue to be a challenge for me. Fay has noticed an improvement, though its not nearly fast enough for me. I know my therapists are there to help me through this, but I can't help but feel ashamed and embarrassed when I cannot provide answers. I'm glad the sessions are only 1 hour because, I leave with a headache every time.

Physical: I'm now walking consistently 5 miles a day, in 1 mile increments, with little to no pain. I'm used to running about 30-40 miles per week, so this is a huge physical setback for me. I need to start some light workouts to strengthen my core muscles. My right side is still very weak and I am still slightly drooping to the right. My therapist has shown me some stretches and says this will improve once I strengthen my core and my muscles loosen up.

It still hurts my head to bend down or lay flat, so I need to take it slow. The fluid and pressure in my brain is still a limiting factor. It's getting better, but slowly.

State of Mind: I have bouts of depression and I'm pissed at the speed of my recovery. I get discouraged and mad at myself for not being able to do and say what I want to.

"Thoughts and feelings by Josh, organization and editing by Fay" 

Two Weeks Since Brain Surgery

FYI - It takes me hours to type each post and it is a collection of random thoughts that I want to share. Fay spends time each night helping me edit into what you see here....

Still trying to figure out which therapy is the worst...

Occupational Therapy assessment today - Just over two weeks since surgery, I've gone from not being able to use my right hand completely to now being able to actually use utensils while eating. I think it's an improvement however, I still find my right hand laying limp and I've started using my left hand instead. So, I need to remember to challenge the right side.

They tested me on pinch strength and hand strength. As I expected, my right hand was a little less than half of what is normal. So I have a lot of work to do. They also timed me on a  peg game (place 10 pegs in holes and then remove them as fast as I can). My right hand took twice as long as my left. We also practiced opening and closing different sized jars. It turns out that I have already started automatically using my left hand to do these tasks. The therapist told me to make sure I do not do this because the brain can get lazy and then my right hand won't improve. For example, during the test, I held the jar in my hands but used my left hand to twist the jar rather than turn the lid with my right hand. I also took a typing test test. The homework that she gave me was to move a ball (size of a golf ball) from my palm to the tips of the fingertips and back - over and over again.
See below 

Speech Therapy:  My therapists compare it to going to the "Brain Gym".  Fay calls it Mind Therapy. It's still very difficult and probably more frustrating than anything else that I am dealing with. While holding a conversation is generally OK, my ability to picture scenes, describe items or even form a sentence using three related words (and then recall the words) is so difficult. Speech Therapy isn't what you might think. It is not correcting my speech, it is meant to help me formulate thoughts, find words, recall information and communicate what I might be thinking but cannot articulate. For example, they ask me to name 5 things that I would find at a park. I could only come up with slide and swing. Another exercise is when I'm given 3 words and I have to use them in a sentence and then repeat the original 3 words. It may seem easy, but I am really struggling with it. So, I'm given trees, trails and hill. I have to make a sentence and then give them the 3 words.
It will take me quite some time to get my speech back but I think I am on track. Especially after such a short time since surgery and considering all the seizure meds I'm taking.

Physical Therapy: When I was finally up and able to walk, it was so unbelievably painful that it was worse than the pain in my head. I wish someone would have told me that this would happen and I would have known what to expect upon release from the hospital. I only found out today when the therapist told us that the impact of a typical hospital bed stay on muscle loss is typically 3% of muscle mass per day. I was strapped down and unable to move for eleven days. My legs are stiff but with light stretches, so much better.
The other issue that we are working on is my right side drift. I was told that my core strength has weakened and that my entire body is leaning or drooping right. So, besides concentrating on balancing while walking, I'm told to concentrate on straightening up.

Science Daily --> http://www.sciencedaily.com/releases/2009/10/091027162011.htm

As of today, I'm off of all pain medication and have worked up to about 5 miles a day which is great recovery.

Follow up and staple removal with Dr. Chang at Stanford is tomorrow.

Recovery Progress

Recovery is still at a mind numbing, slow and frustrating pace.

Speech: It took me 15 minutes to write the alphabet with a pencil today. The only letters I forgot how to write are a lower case "f" and "k". I guess that is progress. The little one (Hayden) is such a help when it comes to my nightly speech therapy homework.

Physical: The pain in my legs has been absolutely horrible - even just standing straight takes monumental effort. Two weeks of laying in bed caused the muscles in my legs to atrophy. 

I have a slight lean to the right side so I'm supposed to try and correct that which isn't as easy as it sounds. I'm already concentrating really hard on just walking and now I need to work on fixing the right side drift.

Thankfully, the leg pain has somewhat subsided the last two days and I have been able to do some light stretching and walking. It was a nice day out and I made my first "unsupervised" walk around the block! And, I walked around the track at Lincoln High School and went up and down the bleachers.

Spending time with the puppy has been good therapy too.

Occupational therapy starts next week.

I've been slowly tapering off the steroid that helps with brain swelling. I'm so glad I only have four more days on it. I cannot stop eating. Everyone laughs at me when I get to my meal. But, I can't control it.  It's Crazy!