Perfect Timing

"Hello Josh and Fay - I ran across your blog somehow, I hope you don't mind a stranger reading about your situation.  I just wanted to say thank you.

We have a dear friend who had brain surgery in December (different type than yours) and still suffers from seizures and disorientation.  We don't really understand what she is going through and it's quite scary especially as we are geographically distant from her right now.

So I appreciate being able to read your blog as sort of a proxy to help her through her situation.  I hope your words bring comfort to others going through this, and that they provide a way to help you heal.

Your family is beautiful and clearly they support and love you very much...  And very clearly, you are strong and determined!  Hugs and I wish you the very best in your recovery.  - Jen"
*******

Your message couldn't have come at a better time for our family. We just found out today that I will be proceeding with Radiation followed by one year of Chemo.

One of the reasons I am posting about my surgery and recovery process is to provide insight into what it's like to suffer from seizures and a brain tumor in the most open and honest way (for the internet - anyway) for others to see. I'm grateful that any of my words provide insight into what your friend may be going through. 

I do know that the seizure meds alone are enough to cause MANY issues, let alone the trauma of a brain surgery and resulting impact that may result. 

You are doing the right thing - reading and finding out how best to help her. Please feel free to reach out to me directly and I will answer any questions you (or she) may have. 

I appreciate your email so very much and I wish you and your friend the best. 

Josh

Update & Plan - post by Fay

We met with Josh's NeuroOncologist today.The plan is to do Radiation (5 days a week) for 5 weeks followed up with a year of Oral Chemotherapy (Temodar).

The Tumor Board met today to discuss Josh's case and came up with treatment plan options.

The three options presented to us were:

1. Wait & Watch - follow with MRI in 3 months
2. Begin Chemotherapy for 12 months (a few types to be considered)
3. Begin Radiation and follow up with Oral Chemotherapy for 12 months

Ultimately the choice is Josh's, but it was recommended that we act aggressively and promptly. There is concern because the tumor has grown so close to critical areas of the brain. The idea is to catch/stop the tumor before it grows into these danger areas.  It has started growing down and back (deeper).
Josh is on board with moving forward aggressively.

I'm not sure what he was thinking, but I was completely caught off guard when I heard the Doctor's words.   I felt like I had been punched and knocked down. As I sat there, I concentrated on not crying.
He's just barely through the surgeries and he's struggling through recovery and now he still has to go through this.
I don't know what else to say right now.

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" 

Post Surgery Check-up: Good News & Bad News

Thoughts and feelings by Josh, organized and edited by Fay.

Well, I received some good news and some bad news today... and waited an extremely long time. What gets me through the wait is knowing that the doctor is taking extra time with people in my situation.

First the good news. The surgery was a success. The grid monitoring that was done proved to be a huge aid to the surgeon in guiding him safely during surgery - though it was a terribly painful and stressful process, it was well worth it.

During my final surgery, they were able to "shock" the electrodes to guide them through surgery to remove as much of the tumor as possible.  In addition they removed a small seizure focus point. The seizure focus points that remain are far away from the tumor site and would have been difficult to track and remove. The other GOOD news is that the pathology of the brain tumor shows that my tumor has remained a Grade 2 Oligodendroglioma - it has NOT upgraded. 

Oh, and my staples are out and I can finally wash my hair... tomorrow! Only about 10 of the 54 staples hurt when the came out. They do not provide pain medicine and the pain was only a few seconds for each one. Also, one stitch was removed where the drain had been placed during the emergency surgery.




Now the bad news: Approx 20% of the tumor remains. It is too deep and too close to the motor cortex to safely reach. This is where the mapping helped, they could see how far was safe to go before permanently leaving me without the use of my right arm or worse. He pushed it as far as he could while ensuring that I didn't come out of this with any deficits. Dr. Chang (picture above) said that the Neurologist who was present during surgery was scared about going any further because when they touched certain areas, my hand and face twitched.

The 80% of tumor that was removed had well defined, clear boarders. The 20% that remains has roots and branches that are not well defined. Dr. Chang explained that the if you picture the tumor as black and the healthy brain as white, the part of tumor that is left is gray - blending or mixing with the regular brain and therefore, inoperable.

My case will be presented to the "Tumor Board" this Friday.  This is when teams of experts meet and discuss patient cases. My Surgeon, my Neuro-Oncologist, a Pathologist and Radiologist will all attend to discuss my treatment options. My latest MRI, day after the final surgery, as well as all of my case notes will be presented. There is some disagreement of treatment plans with a slow growing tumor type. We were warned that disagreements will be had and that I will receive a call with all of my options. We were told that there is no single right answer - there is some controversy over what treatment is best.

Since surgery is no longer a safe option for me, we are looking at chemo, radiation, or the wait and watch plan.

Other items: I am now allowed to lift up to 25lbs - carefully, I've developed a rash caused by one (or all) of the medicines, my brain is still swollen, it hurts to cough, and I can exercise as tolerated. Now that I have tapered off the steroids, as of this morning, I'm anxious to work off the more than a few pounds that I've gained.

My tumor, thankfully, is still slow growing. I've come to know so many families absolutely torn apart by this disease. A family friend passed away just last night and it actually hurts to think of his family...his wife and his two very young kids.

So, while it is hard not to feel depressed, I know I am fortunate.
For now, I will enjoy my first beer with my father-in-law and focus on my recovery.

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.