The Love of my Life

The last time I ended a blog entry, I promised to talk about my wife a little bit.

In August of 2008, I decided to join Facebook.  I started adding friends and acquaintances, and she was listed from my high school, Minooka.  Now, she was a friend, not too close, but I definitely remembered her.  I remember her coming to band practices occasionally (I was in my first band) and being very cute.

Then I noticed her workplace was in Silicon Valley, California.  At the time, I was working for Creative Automation (now Valid USA), and doing database programming.  "Wow," I thought to myself, and briefly entertained the notion of us being in the same profession.  I whipped up a quick email, sent it off.

About a week later, I noticed and her reply.  It was August 7th.  There was an instant connection.  We talked online over Facebook, which eventually led to talking the phone for 3 hours at a time, to me asking her out on a date.

She's a nurse practitioner, by the way.  Which makes what I'm about to say to her a little more mind blowing.  I asked her "Does it matter that I have a brain tumor?"  "Not at all", she said.  She explained we were all going to die someday, what matters is the experience we are having right now.  With that out of the way, I fell in love with her.

She has been instrumental in my survival, and I am blessed to have her and my son!

Summer Watkins, April 17, 2010

(Gauze-headed picture of) Me and my wife at the Northwestern Medical Center, after my 2nd surgery.  November, 2013

First Seizure

Sorry guys!  I've been extremely tired this past week, so that's my excuse for not writing on my blog.  The BCNU and Avastin is working hard to keep me here for (hopefully) a long time to come.  There might be some little break now and then, but I will keep updating.

So anyway, I was mostly fine after my surgery.  There were deficits I learned to live with.

About 6 months after surgery, taking my Dilantin like a good brain tumor patient does, I had my first seizure.  As I was getting pills out, my right eye rolled back in my head, and I felt my right arm go tingly and numb.  It was, at that point, I went downstairs to tell my dad something was wrong.  Unfortunately he was sleeping, so I woke him up.   My dad was confused, repeatedly asking "What's wrong?"  I had lost the ability talk again, so try I was trying as hard as I can, but it was no use.  My neck started turning to the right, against my will, and my eyes were going right, too.  I just rode out the seizure, helpless, praying that it wouldn't turn into a grand mal.

By then, my mom was downstairs.  After I came out of it, everything was slow coming back.  I told them what happened.  (I think) My mom called the neurologist-on-call.  He urged me to calm down, and see my regular neurologist the following week.

It was a partial (focal) seizure, meaning it's not the grand mal seizure I originally it could turn into.  And it wasn't a petit mal (defined as "staring spells").  I was constantly aware what was happening to me, and it took me a long time to calm down.  My brain had just revolted, probably they had just been poking around in my head - which is known to happen after extensive brain surgery.  That first experience was a doozy.  I saw my neurologist that week, and I don't remember what happened to me, but am pretty sure that they upped my meds.

There's two schools of thought among doctors.

1.  It's okay to have some breakthrough seizures, as long as seeing you're seeing a neurologist and they are well controlled.
2.  IT IS NOT okay to ANY seizures.  EVER.

Situation number 1, which I thought was okay, allowed seizures to occur more frequently.  This led to called my nurse practitioner to report every seizure I had, who (in cooperation with my neurologist) kept raising my doses.  I did this over three years.

I got a new job, moved out my home into an apartment with my buddy Frank.  We were living there for 1 and a half years, and in that time I (re-)met bride to be, Summer Overman, in August of 2008.  That's a story for next time!

P.S.  It wasn't until I met and was under the care of  Dr. Nina Paleologos (a neuro-oncologist who that specializes in oligodendrogliomas, among probably others) that I changed my mind about seizures.  Seriously, if have a brain tumor and having break though seizures, it's worth asking your doctor about the damage it does to your brain.  I can't go back to situation number 1 again.  She is coming up in my story later.

Recovery

When I first became aware, I was lying down on a bed.  I thought about what just happened to me, and I decided must have gone fairly well.  I tried to move my right arm, and *WHACK*!  My face was in the way.  I tried to right arm again, which was a heavier that usual, and settled it into a more comfortable position.  At some point, I must have tried talking, and it was difficult as well.  Maybe my surgery didn't go as I thought.  I settled back and just wrote it off to surgery/anesthesia after effects, and into a fitful sleep.

They took be for a CT scan, to make sure there was no blood clotting issues, then I was wheeled to the ICU.  I remember my dad being there, as well my uncle Chris and my cousin Paul.  Sorry if I left some people out, but I remember those people being there.  I tried to talk, to say that "I'm okay," but I was clearly not.  Talking was futile.  As they left - it had been a long day - I remember going back to sleep.

The next day, I got to sit up in a chair.  They had put me on 200mg of Dilantin, which basically slows my brain down and makes me feel like poop, so I was getting to used to that.  I tried talking, and I could get several words out - yes, no, and thanks.  It took a lot of effort just getting these words out.  My brain was functional, but I had Apraxia.  According to Wikipedia, "Individuals with AOS have difficulty connecting speech messages from the brain to the mouth.[2] AOS is a loss of prior speech ability resulting from a brain injury such as a stroke or progressive illness."

Basically, I sounded retarded, or mentally handicapped.  I was injured in my brain.  What if I was like that for the rest of my life?  The way nurses blew me off and didn't even tried to understand me, was a scary prospect indeed.

My parents got there, as well as my sister, and I was glad to see them.  I seem to remember them cracking up at my speech problems.  The fact that I just say curse words with little issues, but I had trouble getting conversation out at the time.  This was my funny to them, because they realized I was still there, I just had problems with my speech.

Eventually, Dr. Prahbu came in, and said my tumor was Oligodendroglioma, Grade 2, which had a good prognosis (meaning "life expectancy").  They were able to get 60% of it.  The other 40% could not be removed without damaging me further.  My tumor also had the 1p and 19q deletions, which meant likely to be treatable with chemotherapy.

I was initially disappointed at that result, but lived with it.  After all, "Close follow-up with regular MRI scans is recommended following the successful removal of low-grade oligodendrogliomas," which means that further treatment would be not necessary until I showed tumor progression on my MRI.

The need for therapy was a given, especially for my speech.  90% came back over time.  Occupational and physical, I had deficits as well, mostly minor.  All in all, one year later, I was feeling back to my normal self.

Thanks for reading the first part of my story.  Any feedback would be welcome.

By the way, my last MRI scan came back stable!  Woohoo!

First Awake Cranitomy

Thanks for all the birthday wishes.  Yesterday was my birthday.  I can't believe I'm 35, with all I've been though!  One thing that helps is I try to take day by day - no what-ifs.  Go with the flow.  It keeps me sane.

So let me get back to my story.

The day before my surgery, I was admitted to Loyola hospital.  They shaved my head - no, actually, bits of it - so they could glue little sensors dots to my head.  This was to avoid any "excessive" shaving, so I still look sexy...

Wait a minute, I am a GUY.  I'm not supposed to look sexy or beautiful!  I had been letting my hair grow out, Shaggy-style, and if they were going to do that, I would have went in with a shaved head!  So I'm sitting there, dots on my head, probably looking fit to be tied.  They then told us to head up to University of Illinois of Chicago for my fMRI.

The fMRI (functional magnetic resonance imaging) to help them avoid the critical areas of my brain.  As opposed to typical MRI, in which you can just sleep if you want, I was to take a more active role in this.  I had to answer multiple choice questions, all by pushing buttons a little remote control hooked up to a computer.  In addition, I had to make movements, such as opening/closing my right hand, or moving my right foot.  This was all to retain function to my brain; to prevent paralysis, to make sure I could still talk and think as I normally did.  The test went very well, and we drove back to Loyola.  A nurse wrapped up my head and said I was to sleep with the dots on my head.  Great...

Some time later, around 7:30pm, Dr. Prahbu came in to talk to me.  He asked how I doing, if I was nervous, etc.  Then he explained to me the risks involved.  My right hand could be a little weak, and I might trouble expressing myself.  He also went over standard surgery warnings, I could die, and all that jazz.  So be it.  I was ready to get this thing out of my head.  He left, my parents left, and I tried to go to sleep.

I remember a normal, pre-op MRI being done with the little dots on my head.  I also remember a male nurse trying to get an arterial IV started and he was having trouble for half a hour or so.  I finally remember that a anesthesiologist was doing his thing, hooking me up.

All that was on my mind is I could die.  I said a little prayer asking that God spare me.  Blackness.

Then suddenly after that, my awake part began.  I was immobile, resting on my side, in the sort of "twilight" phase of sleep; half awake, and half asleep.  

One of the guys asked me, "What is this?" 

"A pen," I said.

"What is this?" that guy again asked me. 

"A pen," I repeated.

"Say your name."

"Joshua Watkins."

"Say what these are."

"Scissors."

So on and on it went, until I could hardly I say my name again.  I knew it, and I could hardly say it.  

"J..." I said.  It just wouldn't come out right.  "Johhh..."

"Let's finish up," I heard Dr. Prahbu say, then blackness surrounded me.

---

I still have a long way to go yet!  

Tomorrow, I'll be getting MRI again (9 years of them!  Ugh...).  Thoughts and prayers are welcome.

Dire News

My first hint a bad result from my MRI was technician saying "Have you ever had a MRI before?"  I knew from her tone of voice, things had not gone well.  She said that they were trying to called my doctor and get an appointment tomorrow.

Out in my car, I started panicking.  An internal panic, as I always do.  Was it a brain tumor?  Was it some kind of hemorrhage?  Was is LUPUS??? (Seinfeld)  I drove home thinking all worried about of my result, knowing that I had to wait until tomorrow.  

The next day, my dad came with me, and thank God for that.  "You have a lesion approximately 6cm by 7cm in your head," the doctor sadly said.  "The next step is finding the hospital of your choice, and then get a hold of a neurosurgeon."  He then gave some examples; University of Chicago, Rush University, Loyola University.  Luckily, my dad was there, because I completely shut down. My life had changed, drastically, for the worse.  My dad finished the appointment for me, while I lamely said "okay" at a doctor's every word.

Then, I blanked out.  This was big lesion, about the size of a deck of playing cards.  A number of things became painfully obvious; my right-sided droop of my face, my repeated dropping of my coffee cup from my right hand, my right-hand "hesitance" of playing guitar.  I made excuses for everything.  The drooping of my face?  I had a case of Bell's Palsy.  My dropping of my coffee cup?  I need to hold on tighter.  The so called "hesitance" right-hand, the picking hand...I had fallen out of practice and needed my picking hand in shape.  I had been playing for close to 10 years.  Why did my picking hand fall out of shape?  I was stupid, and these are the lengths I would go to prove that I am okay.  Unfortunately, they were all signs of the brain tumor.

My first move is to talk with my parents.  My dad, always looking and the bright side, told me that whatever it was, I could get it cut out, then I'll be fine.  My mom put up a tough front, and agreed his assessment.  So together, we picked a hospital, which turned to be Loyola University.  I made an appointment doctor, who was Neurosurgery Department Chairman/kind of big deal guy, for sometime later in the week.

I should mention at some point, my friends are all supportive to me, especially one in particular, Bill.  He dropped everything for me.  He called up and asked what was my favorite kind of beer.  Killian's Red, I said. He said he would pick up a six-pack for me and be over soon.  It was early evening, he came over, and we talked for a couple hours.  I don't know what about, whatever stream of consciousness I had, but I remember thinking "what a guy!" (Red Dwarf)

A few days later I was at my appointment with the head surgeon (I'm sketchy on the details).   He confirmed it was a brain tumor (low grade, grade 2 or 3) and referred me to Dr. Vikram Prahbu.  He was the best awake craniotomy surgeons they had, and he specialized in these low-grade tumors.  "Don't drive," he said, since I was at risk for seizures.  It's a scary thing, knowing my brain could malfunction at any time, and get myself and other people killed.

I was worried about my insurance, so I held off a month.  It was March in 2005, I didn't want to be stuck with the bill in case something happened between my employer's insurance and Cobra.  Always cautionary, I waited until April 29, 2005 to have my first, awake, craniotomy.

That's it for now.  It is really exhausting, brain-wise, blogging on my memories.  Stay tuned for more.

Here we go!

Hi.  I'm Josh, and I have a Brain Tumor (Grade 4, Glioblastoma Multiforme).

It all started approximately 9 years ago, when I was 25.  As I was getting laid off my job in Computer Information Systems, I had a choice: to Cobra, or not to Cobra.  I went in to primary care doctor, who declared me to be in Good Health(tm), except for a funny little bump on my chest.   "No big deal," I thought.  "My doctor will give me a referral to a General Surgeon, I will get it taken out, and I will be GOLDEN."  As it turns out, it was a Pilomatrixoma, which is a benign tumor, mostly consisting of hair cells.  *WHEW*.  I am cancer free.

That was, until I felt like I should talk to my surgeon about something else bugging me: my drooping face.  More exactly, the drooping right-side of my face.  He put me though neurological exams, with a worried looks on his face, he recommended to go back to my doctor and ask for a MRI.  In my "infinite wisdom," I didn't.

One day, I got a call.  It was my doctor.  It turns out that my received a call from my General Surgeon and he reiterated the worrisome news.

A week later, I was sitting on the exam table with dire news:  I have a brain tumor.



This blog represents my thoughts, good, bad, and ugly.

More to come soon!