Saturday, February 28, 2015

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

Friday, February 27, 2015

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.




Thursday, February 26, 2015

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" 

Wednesday, February 25, 2015

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.




Tuesday, February 24, 2015

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.

Saturday, February 21, 2015

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!








Thursday, February 19, 2015

Funny? Or scary?

Saw this sign at the entrance of the Rehabilitation Center today. 
Seeing how stressed and discouraged Josh feels after speech therapy, I guess I can see the need for the sign.

Wednesday, February 18, 2015

Pain Meds Fiasco

Just make sure that you get plenty of pain medicines when they release you from the hospital. Trying to get my prescription refilled turned into a total fiasco.

Today I ran out of pain pills. Well. yesterday. When Fay went to refill the prescription, it wasn't on the narcotic tag. She had driven to Stanford on Monday to get a new RX so that I would not run out. But, last night at the pharmacy, she was told that it was not on the legal prescription paper used for narcotics. So, they would not fill it. Nights are my worst for head pain so I started to panic. She called the NeuroSurgeon On-Call but since it was a narcotic, they could not send the order electronically and it had to be hand delivered to the pharmacy! I was out of luck and out of pain med.

Seriously - we have reverted to a paper process in 2014 for pain meds!!! Read more...

First thing in the morning, Fay was on the phone trying to sort out the mistake which wasn't fixed until 2 today. We drove to Stanford, again, to pick up the new prescription that was written on the right paper.

So this was my first time out since surgery and it was back to the Stanford NeuroScience Center. NOT my first choice of places to go. Plus, fay was pretty worked up over the huge mess. Super mad!
Seriously, no joke!

At least we stopped for lunch at the Fish Market for clam chowder. But, being out in a restaurant was overwhelming. The crowd and the noise...sensory overload.


Luck O' the Mick

Josh and I decided to post some pix of something we call Luck O' the Mick. When bad, dumb, annoying or crazy things happen to us, we blame it on the Luck O' the Mick.
Here's a few "bad luck" things from the past few days.

1. Somehow forgot to be given pain meds in ICU after first surgery
2. Emergency surgery - drain in head
3. Extra scar - due to emergency surgery
4. Pain med re-fill screw up
5. Botched haircut
(she was told just to shave his face) Yikes!

Tuesday, February 17, 2015

Broken

Honestly, I recall very few moments of my recent hospital stay with any clarity - little of each of the 11 day stay.

Things I remember: moments of excruciating pain, laughing at Fay's inappropriate jokes, visits, drugs, etc. Trying to put it all in words is a tedious and overwhelming amount of work.

With my Physical and Speech assessments today, I am completely worn out - and feeling frustrated and discouraged.

This post was published in two hours and I'm calling it a night!!!



Monday, February 16, 2015

Long road to Recovery

This is certainly not an easy recovery. Longer post tomorrow but doing well considering brain surgery was 7 days ago. 

Saturday, February 14, 2015

Day 4 Recap

Better sleep, less pain, longer walks, less meds, etc.  Still working on my right hand as the brain swelling continues to decline.  

Top it off with a shower and fresh shave.


Friday, February 13, 2015

Best Call Ever

Some happy, amazing, awesome, wonderful, fantastic news....
Pathology results are back and the tumor grade has remained Grade 2.
This is a huge relief because there was talk about an increase of grade after 10 years.

Thursday, February 12, 2015

Twice A Day

Day 3 +

What its friday already?! Where have the ten days gone.

I will be focusing on my recovery and a little quiet on the blog the next few days. 

All is well and no news is good news.  




Day 2 at home by Josh

Making a lot of progress.  Slow and  steady it goes.

Been on a few short walks this afternoon. Feeling pretty good.  I would rather switch the brain trama for the feeling back in my legs. Not have both

First Night Home Went Well

I know the blog posts have fizzled out. I keep hearing from people how much they appreciate the updates. It just got overwhelming for a second.

Josh's first night home went well. I had to call my mom over to help me figure out his med schedule because it is crazy.
Right now, I have to wake him at midnight and 4am so sleeping is still interrupted.
His pain level is still not at the goal level which is the scariest part of having him home.
Also, at this point, he has to be supervised and cannot get up or walk on his own (without supervision).
Physical therapy, occupational therapy, and speech therapy have all been ordered for 3 times a week. 
A lot of his pain is in his leg muscles which hadn't been used for 9 days. So his legs are shaking and cramping.

Josh actually doesn't  look like he's just had 3 surgeries. The only clue he's had surgery are his incisions.
Last week when they changed his dressing, I was shocked to see an additional incision. It was planned that they would use the same site as previous years surgeries. But a new incision was made during Wednesdays emergency surgery - which Josh isn't thrilled about. Hayden said it's going to take a while to get used to Dad's new scar.

The smiles on the kids faces when we got home were priceless.

PS wish us luck today adjusting to this next phase.

Tuesday, February 10, 2015

Dr. Chang visited today

Dr. Chang dropped by to see Josh this afternoon.
He said he was more pleased with the tumor resection than he had imagined. He was actually able to get more tumor than he had thought he was going to based on what he saw on the mapping before surgery.
He said the tumor hit right up against the motor cortex and he was able to clean it all out without touching any motor function. He explained that the reason Josh cannot use his right hand (yet) is because he took out pre motor cortex (basically the tumor) and the pre motor cortex tells the motor cortex what to do. He says the motor cortex is lazy and needs to be trained to do things on it's own.
The seizure spot that he was able to remove was about 5mm from the tumor. The other sites were in another area, too deep.
Dr. Chang was very pleased with how things went.
Pathology results come in a few days.
I asked when he thought Josh would be going home and he said as soon as he could check the 4 boxes on the
"4 Checks to Discharge" board (see below), he could go home.

Post Op - Day 2

Out of ICU and doing OK.
A lot of pain, but trying to get it under control.
He's a bit grumpy.
No more private room and no more nurse.  She's nowhere to be found???

On a good note - no longer tethered to bed and no arm restraints. 
Plus Physical Therapy started so he was allowed out of bed for the first time in 9 days.

Monday, February 9, 2015

Doing Fine

Sorry to be brief, but I'm so tired.
I just wanted to say that Josh is doing fine.

Surgery Is Over

The Surgeon says it went well.
The tumor has been resected and one seizure site as well.
He's awake and can talk, but he's very sleepy. Right hand is looking OK so far.
He's in ICU for at least 24 hours.
He looks pretty good for someone whose brain was just tinkered with.
I can finally see the light at the end of the  tunnel.

Official Start Time 12:17

Surgery was pushed back because there was not an operating room available.
He was taken from Pre-Op around 11 to operating room to start anesthesia.
Expected to start around noon and last until about 4.
Spending at least 24 hours in ICU.

Holding On

Sunday, February 8, 2015

I love these guys...

Check, please

D Day has come.
Tumor resection tomorrow at 8am
Unfortunately, after everything Josh went through this week, including an unexpected surgery, they will not be able to remove the seizure sites.
The Doctor said that they could try laying down some more electrodes and look in other areas but it's all very risky. Especially since Josh has already had two previous craniotomies.
He said instead of having a nicely, tightly made bed where everything is nice and neat, Josh has a wrinkled, messy bed - making everything more complicated.
However, after hours of functional testing, the surgeon now has a good road map to use to make for a safer surgery. He has a better idea of where Josh's motor and sensory functions are so that he knows boundaries better.
The surgeon may decide to do additional mapping/testing during surgery if he finds it necessary.
All I keep thinking is, get us the hell out of here.


A Very Special Little Visitor

Saturday, February 7, 2015

Seriously? - post by Fay

Small quarters, cabin fever, pain, stress, etc... This tiny room is beginning to get even tinier after so many days stuck in here, together.
He's getting grumpy and bossy and annoying.
He says to me tonight, "can they get a spare room for you?"
Can you believe that? Seriously, he said that!
But, I'm so glad. I'd take his totally annoying behavior over the way he's been for the last week, any day.
He's awake and communicating and not scaring the life out of me with his nonsensical mumblings and that's what matters.
I can't wait for all of this to be over and for us to be home.

Love

Friday's Functional Mapping, Not So Fun - post by Fay

The Functional Mapping was totally exhausting. It lasted for several hours and Josh couldn't even keep his eyes open. He was so frustrated but he hung in there. I wanted to tell them it was enough when I saw his discomfort but they were determined to get the data so Monday's surgery can be as accurate and safe as possible.
From what I could figure, they sent shock waves to the electrodes on his brain. They asked Josh to read out loud, repeat sentences, perform instructed movements and tell them if and where he felt a shock.
I'm sure Josh will be better able to describe it another time.
During the testing he had so much brain activity, they had to give him Ativan twice during testing to try and quiet or calm the brain activity. This made Josh very sleepy and testing really difficult for him.
As soon as it was over and the doctors left the room, Josh started talking nonsense to me again. He was completely out of it. Plus he lost all improvement in his right arm. It was totally limp again. When I called the nurse, she immediately got the doctors and he was sent for a CT Scan within minutes.
Fortunately, the preliminary results do not show any blood or brain shift.
So they said his behavior was most likely due to the Ativan and seizures during testing.
Josh slept the entire night and woke up much more himself .  Arm, speech and confusion have all improved but not as good as before testing. So, another scary set back and another scary night.
They have decreased his seizure med again because without a big seizure, they won't get the data they want. The small seizures they recoreded are not enough.
All night I waited, in fear, for that big seizure.
If it doesn't happen soon, plans will have to change. The grid cannot safely be left in for much longer.
This morning we're waiting for the doctors for an update.

PS 
When they changed his bandages, I noticed that he has an unexpected incision.
So, new scar - another unexpected development. I'm assuming that during emergency surgery, they made a new incison in order to release the blood and insert the draining tube 
(which we found out had a leak and has since been removed).

Friday, February 6, 2015

Special Delivery for Josh Mick - post by Fay

Josh and I want to thank everyone for their kind words and for all the love and support.
So many of you have sent well wishes and positivity our way.
Thanks for the cookies, treats, plants, flowers, and generous offers to help.
It means so much and makes us smile (and cry).

Room Without A View - post by Fay

This is our new room. 
You can see my cot crammed in the corner. 
Not the best view.
At least it's a private room!

It's Friday - post by Fay

Back up to the Epilepsy Ward yesterday.
They had to add back his seizure med before the emergency surgery, so they had to start over with decreasing it.
We're anxiously waiting for seizures so that data can be gathered to help determine where the seizure activity is and to help guide the surgeon during tumor resection.
Today, they are planning to do functional mapping. Which is where they will have him do certain tasks (talk, write, etc) and look to see which areas of the brain are being affected. Dr. Chang emphasized the importance of the data in guiding him so he doesn't get to near vital functional brain parts during surgery.

Josh felt an aura around 3:30am but besides that, he has not noticed any seizure activity since Tuesday.

One of the nurses noticed that the drain they put in during the surgery to remove the blood, is leaking. So we are waiting for this problem to get resolved.

Josh is becoming irritable and extremely frustrated with the lack of control he has of his right hand.
He has been bedridden since Monday and he's feeling very uncomfortable. He has asked about getting out of bed but, I doubt that will happen. He's also longing for a shower.

We're waiting for the doctors to come by and give us information and tell us the plan.

Thursday, February 5, 2015

I just have brain surgery

'3 times' and one more on the way

New Day, Fresh Start - post by Fay

I'm happy and amazed to report that Josh is back to himself (as much as possible after 2 surgeries and all that he's been through).
He is awake, eyes open, alert, speaking, eating, and even smiling.

Draining the accumulated blood has relieved the pressure on his brain and has eliminated most of his symptoms. Though his right hand is still weak, he can now lift his right arm.
He is properly medicated to be sure his pain in under control.

He doesn't remember anything after 3am on Tuesday, when his seizures started. Which is lucky in some ways because it was so horrible. I tried explaining to him that there had been a complication due to surgery and that he was being taken for emergency surgery because I didn't want him to be scared. However, he remembers nothing. In fact, today he said he didn't even know what happened until I told him today! This morning he overheard the doctors discussing it but he didn't know what had happened! He didn't know he went in for emergency surgery.

We've been through two brain surgeries before and I knew something was wrong. He was almost completely unresponsive and when he did mumble, it was nonsense. SCARY!
The only thing that he said that made sense was when the nurse asked him (during his hourly neuro exam) if he knew why he was in the hospital. His response was
"Crani-fucking-otomy".

In the past, by day 2, I could see some resemblance of Josh, but not this time. Josh was nowhere.

Today, every single doctor, nurse, and technician that cared for him yesterday says what a dramatic change he's had from yesterday. I can't believe he's OK. He was so bad off yesterday that I was worried there would be permanent damage

He may stay in ICU overnight but eventually, we are headed back up to the Epilepsy Ward and moving forward with the original plan.
It's going to get harder before things are better but, I'm looking forward to a happy ending...and soon!