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" 

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" 

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" 

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.

Math drills

Progress: only missed 4

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!