Radiation #2

Hey everybody, so I finally know I am doing right now.  (Many thanks to Marianne for reminding me.)

I will be doing Proton Therapy.  It's scary at first, so I have to keep a positive spin on this.  Dr. Gondi, my radiation guy, and Dr. Grimm will be my go-to neuro-oncologist.  They are all very nice.  My wife, Dad, and I had questions were answered, with the toxicity will be a foremost point I could raise.

Last Friday, bright and early in the morning (6:50!), I got fitted for my radiation stuff.  This time, I am sitting up on the chair.  Then last night, I had a practice run of all my stuff.  Today, have to taking my Zofran and Temodar for the second time, and right before my radiation 6:00 pm and go for broke.

With prayers to God, I am going to get though this.

I'm here.

I wish I had some good news to report.  Unfortunately, it's the bad news.  After my MRI, Dr. Raizer saw some slight tumor progression in my scan.  For right now, I am looking at re-radiation, and at least chemo (Temodar and Avastin again).

It sucks, to be honest, but I refuse to let this get me down!

I am going to start looking in to starting alternative therapies - Accutane, Cannabis Oil, and Resveratrol.  Cannabis Oil seems to be the most promising, if only I could legally find it.  Whatever I end up going with, I'll post findings here.

Happy Thanksgiving, everybody.

Chemo #2, Surgery, Chemo #3

Here's the update I promised.  This takes us to current day,

Chemotherapy #2:

After radiation, I was in another "sit and wait" period for progression.  I was certain that IMRT radiation would do the trick.  In the meantime, I had received a letter from Evanston Hospital, saying that Dr. Paleologos saying she moved.  I later found out that she went to Rush Hospital, but I had no contact with her again.

Instead, Dr. Merrick was managing my care at that point.  Within 6-8 months, the tumor was causing more problems.  He put me on CCNU, another pill.  I would take 1 dose every month, but I was warned, this would harsher on my body that Temodar was.  I didn't find that to be the case, purely on the physical level.  Inside my body, I was making fewer white blood cells, so I guess that's what they meant.

CCNU was hard to get in the correct dosage.  They weren't making 100 mg anymore, so it was divided up among 40 mg and 10 mg pills.  Chemo doses are based on weight, so I needed 180 mg (for my 140lb frame) each time.  So 4 of the 40s, 2 of the 10s.  Walgreens charged me double price. For 1 dose of CCNU, I was paying for 2 prescriptions.  Ridiculous.  Good thing I had insurance.

I was doing alright at the time.  I was working and getting by with all the chemotherapy.

Surgery #2:

Eventually, CCNU started to fail me, 6-8 months again.  I went in for a scan, and a new growth had formed, and was the dreaded "upgrade" I was promised.  At this time, I believed it was the grade 3 Anaplastic Oligodendroglioma, which was more dangerous.  Thankfully, my previous non-surgical brain had become operable again.  Dr. Merrick brought in another doctor who specialized in neuro-surgery.  He went quickly over the plan, which included the functional MRI.  This required another guy, who was there at the time, so we quickly set up fMRI, same day.  It was pretty much the same as before, in 2005, only I didn't think I did as well.  I had a lot of stress.  A lot on my mind that day, and I couldn't focus on the tasks at hand.

I called Summer, and I put her on the case.  I said a new growth had formed, and didn't know what do to about it.  Summer quickly ask around the neurosurgeons she knows.  At Northwestern University, Dr. Andrew Parsa was the one with the most clinical trials under his belt, and this guy was highly regarded in studying brain tumors.  So we set up an appointment.

Of course, I wasn't the right candidate for immunotherapy. I had prior treatment: surgery, 2 chemos, and the radiation. So, no experimental for me. They were going cut my head open and dig the thing out. Dr. Matthew Tate was the neurosurgery specialist that was handle the procedure. The doctor had been to France, and supposedly studied under some well known neurosurgeon, too.

I had issues leaving Evanston Hospital, mostly Dr. Merrick. Their staff was excellent,  they had a good reputation, but this my life I dealing with. Plus my mom had some good feelings about Northwestern, so I went there. I'm not going into the gory details, I'll just made it through. (My recovery picture in the The Love My Live post)

Chemotherapy #3

After recovery, they put me on Avastin and BCNU, which is working fine. For how long, I wonder?

There, that's my story. Today, Summer, Warren, and I took a vacation out to  California. Now to enjoy it!

Radiation

Last time, I went over Temodar chemotherapy.  Just to sum it up, it was 24 months worth of cycles, and then, it would be monitored every 3 months.  By the time I made it to the end, I was thankful to be done.  There wasn't a guarantee how long it would last, so I was hoping for it to last as long as possible.  You know, being "optimistic."  Inside my head, I was hoping on 2-3 years, but really it was more like 1 year or less.

I went in for my MRI, following up with Dr. Paleologos.  There was new growth of the brain tumor, which was more aggressive then usual.  Blast!  Dr. Paleologos tried had me try Temodar again, but I had no such luck.  It was then the doctor recommended radiation and chemotherapy for a conjunctive use. Temodar, only a lower dose, for 40 days straight.

There are lots of different radiation therapies that doctors use, depending upon which cancer it is.  In my case, in which the tumor had upgraded then to an Anaplastic Oligodendroglioma Grade 3, I was afraid they were going to old school radiotherapy.  Intensity-Modulated Radiation Therapy, Cyber Knife, Gamma Knife, and Proton Therapy are the major ones I looked into.  Now oligodendrogliomas are an infiltrating type of brain tumor, so the last three are sadly inapplicable to me, as they are known for being "too exact."  Oligodendrogliomas have "fingers" with grow into your brain, making appear fuzzy on the scans.  That means that brain tumor and actual brain matter can be hard or impossible to separate.

So after consultation which with Dr. Stutz, my radiation oncologist at local Good Samaritan Hospital, and Dr. Paleologos, my neuro-oncologist, IMRT was chosen to be the best for my tumor.  I was to get 40 sessions of it, after they prepared a rather tight mask out of a semi-flexible, plastic material.

IMRT is a relatively new form of old school radiation.  What is does first is CT scans my head, allowing them to make adjustments to my treatments.  (40 CT scans...scary, right?  I figure I already got cancer from God-knows-what, what's a little more radiation?)  Then, it shoots modulated x-ray beams though my head roughly the shape of my tumor, plus a margin to get any cells, or "fingers" I called them above.  20 minutes and I was done.  I had no side effects except losing my hair (which NEVER came back, thanks gene pool) and extreme tiredness.  Which went away, eventually.

Long term effects?  I am not as sharp as I used to be.  I remember having the memory of an elephant.  Now, I am slower.  I feel dumb.  Oh well, at least I am alive, right?  Of course, the radiation didn't last, either.  It was just a little part of the process which led me up to more chemo and eventually my second surgery in November of 2013.

I got to say thanks for getting though my story so far.  I promise to post an update though current day soon.  Then, I don't know.  I am open to suggestions (leave them in the comment below)!

Chemotherapy

Greetings from a rainy, Chicago day.  I have been going out walking at least one mile every morning, since it clears my head, wakes me up, and makes me feel energized.  But because walking is not ideal on the stormy morning, I'm posting an update to my story.

Summer had been with me about 3 months at that point, and I was the happiest that I've ever been.  This is the one, I told myself, and I started thinking about getting married.  Unfortunately, my brain tumor decided it wanted to start growing again.

I had been having MRIs every 3 months.  Dr. Melian, the oncologist who was reading my MRI along with the radiologist, had been going back to 6 month scans.  Both did not realize they needed to go back further that to see the subtle change.  Dr. Melian realized this, and decided to go back to a year's worth and before, and spotted the change.

This caught me by surprise.  I had been stable for about 3 years.  Not now!  I was doing so good, I had a girlfriend, and life began turning around for me, and my brain started wreaking havoc again.  My doctor was a radiation oncologist, so after the tumor board met, and recommended RT (radiotherapy).  From all the stuff I was reading, is it generally not wise to do brain surgery again, knowing that the surgeon got as much of it that he could, leaving me with two choices: radiotherapy or chemotherapy.

Luckily, I had a new tool in my arsenal.  Summer asked people she worked with, and someone gave her a name Dr. Englehart from Chicago University (I think?).  He was the neurosurgeon, and as I said, surgery wasn't an option, so he referred to to Dr. Paleologos and Evanston Hospital, who is a oligodendroglioma specialist, and the first neuro-oncologist I ever had.  We called for an appointment, and everybody was very nice to me there.  A woman called a "nurse navigator" helped me out, getting my medical records from the very beginning at Morris Hospital all the way to current day.

Dr. Nina Paleologos put me though a full exam.  She explained the dangers of radiotherapy, and we would to prevent from getting it for as long as possible.  We decided was best to use Temodar chemotherapy.  It came in pill form, and I was to take a set amount of dose for 5 days a month, over a span of 24 months.  So we decided that felt like the right path to go.

We did a lot of living at that time.  I was still working, we got married, we had a baby, we went to California and Hawaii, attending family functions.  I was living though the chemo.

At first, it was easy to tolerate.  Within 6 months, it had reduced the size of the tumor, and the doctor was happy with the results.  After that, it stopped reducing the size, and held it steady for the rest of the time I was on it.  About a year into it, I was tolerating it less and less.  It had a funny taste to it, my food tasted weird for about a week, the taste made me nauseous, and eventually led to me throwing up the pills.  I made though the 2 years worth of cycles, then I was done.

I truly can say it was a relief, but the relief didn't last past a year.

The next step is radiation, or radiotherapy, and I tell you guys about that next time.

Music

At first, I played the flute, all the through 12th grade.  My uncle Tim gave me then first flute I ever owned, and I still own.  It has an interesting tonality, being a nickle coated, as opposed to aluminium coated or solid silver (and the annoying fact that it had to me wiped down after playing it).  It's had a dark metal appearance, which I prefer being the only male flutist.  That's me...always somehow different.

As a side-note, my private flute teacher, Bobbi, pointed out the fact that I wasn't to completely close my airway.  She wanted me to work it, but I could never overcome it.  Could it have been an early sign of my brain tumor?

It a shame I didn't stick with it after all these years, because I actually very talented.  By high school, I never practiced or took my flute home...just showed up to band practice, played, and move on.  Being that age, I was desperately wanting to get away from it.  Teasing was the main issue, and the fact I was quiet or shy.  I ended up in symphonic band as a 2nd chair, second only to a best flute player I have heard at the high school age level...and I didn't give a crap at that point.

Meanwhile my dad picked up an electric guitar - which I took to in a big way.  I started strumming and strings, learn chords, and eventually learn my first riff, "Man in a Box" by Alice in Chains.  I practiced guitar for most of the time I should have been dating women!  I was even in a band.  "Four Cold Seasons," the band was called, featuring Matt, Dave, Jeff, and me.  We practiced only a few months out of the year (which my future wife attended).

It was later on, after I was out of high school and in college, I was in my first serious band (around 1998 - 2000).  We were called Believe at one point, and later, Pantheion.  There were six of us - John, Justin, Joe, Kenny, Mike, and myself.  We were all confused about the style of music we should be playing.  Three of us are metal heads/rock addicts, our keyboardist loved pop rock and alternative, our drummer loved 60's and 70's music, and we had a singer who sounded like Frank Sinatra.  We played a mixture of the classic rock, metal, alternative, pop, and progressive rock.  It sounded like mix of those styles and we - frankly - couldn't pull it off.

I quit the band, about the time I started my career in computer development at Speigel.  Any music I wrote would have to be on the part time basis.  But, of course, working a 40+ job schedule and having to drive one hour back left me little time to do anything meaningful.

Why am I going on about this?  After diagnosis and resection, I lost use of my right hand.  As much I tried, I could not reliably open and close my hand.  Forget about finger independence.  It hurts so badly that I can't play anymore, both my guitars and my flute.  Music is having a major impact in my life, but I just can't play how like I used to, and because of this, I am very hesitant to play in front of others.  I can't explain the "hurt" feelings I have on the inside.  That you have to take my word on.

I traded all my ability to play for my beautiful wife and my son, after all.  I don't think it was a bad trade.  :-)

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