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" 

Radiation Oncology Appointment - 3/4/15

The appointment went as well as could be expected. A lot of information, in a short amount of time. Speaking of time, we were called in ON TIME - no waiting!

Below are some answers to some of the major questions that were asked in my Radio-Oncology appointment.

Dr. Swift

We will be using Intensity-Modulated Radiation Therapy  (IMRT) for 6 weeks, 5 days a week. I guess tumors stop growing on the weekends?? (Thanks Julie)

The beams of radiation will rotate around my head, 360 degrees, and every beam is slightly different. The focus being on the tumor and little surrounding area. After the initial 30 minute treatment visit, they will then last about 15 minutes. The actual radiation treatment, once the beams are on, is less than 2 minutes. In addition, I will meet with Dr. Swift once a week so he can check in to see if there are any problems.

What side effects can I expect given the location of the tumor, type of tumor and amount/duration of treatment?

Short Term Effects:
Fatigue, possible patchy hair loss, nausea, sore skin, possible headaches from swelling. If I develop headaches, I will be put back on steroids to control it.

Long Term Effects:
Two long term risks were mentioned:
*Possible new tumor (about 15 years on average) could be a benign or malignant brain tumor (1/300)
*Less than 1% chance of needing surgery to remove healthy cells that were damaged by radiation.

What is the sum of radiation that I can expect over the course of my treatment?
The dose is unknown until mapping and CT scan are complete. But for my type and grade of tumor, the dose range is 54-60 unit gray.
A personalized mask will be made (see picture) to ensure I do not move during treatment. I have an appointment to have this done this Friday, March 6.

 


What did the Tumor Board recommend?
Everyone at the Tumor Board agreed with being as aggressive as possible so that we stop the tumor from growing into some very critical areas (motor cortex) and we can prevent serious, permanent long term deficits.

Damage to the Hipacampas?
The Doctor said that they try to spare it if they can. He said that the location of my tumor is above it and not touching it. Therefore, in my case, radiation will not involve this part of the brain.

Will radiation cause difficulty in future readings of my MRI's?
All teams are familiar with reading MRI's of people who have had radiation. No concern.

What, if any, impact will it have on my seizures? Radiation treatment can cause seizures. However, since I already have a history of seizures (I am currently taking two anti-seizure meds) it would be impossible to know if the radiation treatment was the cause.
The ultimate goal is to be taken off of all seizure meds after treatment is completed.

All in all, this was a very informative discussion and I'm proceeding as recommended.

Tumor Location - Click to enlarge

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

Radiation Concerns

I'm feeling very nervous that radiation might impact me more than I expected. Especially, after talking with a family friend whose husband just passed away from a brain tumor.

She was more than generous to take time, even though she is going through so much, to talk with me about some things that she wish she had known before her husband started radiation. She gave me some really good information and good questions to ask the doctor. I'm so thankful to her for our talk.

There are a lot of factors that come into play - there are more than 120 different brain tumor types, different grade levels (how aggressive), types of radiation, amount/length of radiation, and the location of the tumor in the brain that effect treatment outcome.

After learning more about it, I'm really apprehensive about starting radiation therapy. I'm anxious about tomorrow's meeting with the Radio-Oncologist.

National Brain Tumor Society Support

Many thanks to the National Brain Tumor Society for featuring my blog, on Facebook, the morning of my third brain surgery. I've been involved with this great organization now for 10+ years and plan on helping them for many more. 

I wound up having an emergency surgery, which meant that I had three surgeries in a week's time. I'm home now and struggling through physical, speech, and occupational therapies. I am also about to face 5 weeks of radiation followed up with a year of Oral Chemotherapy (Temodar) to address the remaining 20% of inoperable tumor. 

I intend to continue raising funds to fight brain tumors and will be at their San Francisco Walk on May 2nd.

Thank you NBTS - Josh 

"Northern California Brain Tumor Community: While you can't see it I'd like to share the incredible support that was shown to Josh because of each of you...his message reached over 20,000 people, over 100 comments of love and support were posted. Josh we are all pulling for you this week! "

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"