Friday, November 8, 2013

Day By Day…

As I have stated before, when it comes to glioblastomas, I have been pretty lucky.  The original craniotomy was successful.  The doctors were pretty certain that they removed the entire tumor.  However, due to the aggressiveness of this type of cancer there is always a concern of it coming back.  What this means is that anyone dealing with a glio has to be tested for tumor regrowth on a regular basis. 

My current treatments/schedule put me in an MRI capsule every 8 weeks.  Seven weeks ago I had my last test.  Things looked good from what the doctors at MD Anderson could see through the scar tissue and radiation damage.

Typical Magnetic Resonance Imaging (MRI) Machine

I am scheduled for another MRI next week.  The nerve-racking anticipation as each new test date approaches can be overwhelming.  I feel that I do a good job of keeping these thoughts from consuming me, but I am sure they weigh more on me than I realize.  I am also aware of how heavy this is for Rhonda and the rest of my family.

If that is not all bad enough, the time between can also be worrisome.  A glioblastoma mass can double in size every 7 to 10 days.  So a new or undetected small mass can quickly become a rather troublesome size in the two months between MRIs.  Instead of focusing on what I cannot control, I choose to concentrate on the love and support that I get from friends and family.  This and a mindset of taking thing day by day helps me get through this in a way I never thought possible.  I know “taking things day by day” sounds so cliché, but that is exactly what it takes to stay sane through times like this.  Who am I kidding; I currently take things hour by hour.


Rhonda and I enjoying ourselves at the grand opening
of 127 SOBO Art Association in Winter Garden FL


Thursday, October 17, 2013

Glios, Resin and Fighting Real Monsters.


I want to begin with an apology for the long delay since the last post.  I am doing well, and will add another update in the near future describing my current condition and treatments.

Cover of the current issue of Amazing Figure Modeler
For the past 14 years I have been writing instructional articles for Amazing Figure Modeler magazine.  For the current issue I wrote the issues Editorial. Since the it hit the newsstands I have received a lot of feedback from our readers.  Many have reached out with encouraging words, others have thanked me for the inspiration and a few have offered help. 
One of the more interesting emails that I received was from Dr. Mark Glassy.  Mark is a huge collector, modeler and long time reader of the magazine.  Where it gets interesting is Mark has made a career out of finding a cure for cancer, and he is currently working specifically with glioblastomas (the type of cancer that I am dealing with).  More about Mark can be seen at The Doctor's Model Mansion.
 Dr. Mark Glassy - Notice his "I Fight Real Monsters" shirt
Because of the positive feedback I thought it would be worth sharing what I wrote to everyone.  Although it was written specifically for the readers of the magazine (and I am posting it exactly how it went to print), I think there are some things here that everyone can benefit from.  If you have been following this blog, some of the text will be redundant, however, I encourage you to read all the way through it.


            Usually on page two of AFM the issue begins with the Deadatorial that focuses on a particular aspect of the hobby.  However this issue I would like to deviate from the hobby and talk about more important things.  Yes, there are some things more important than resin kits.  So for the 55th installment I would like to discuss life, mortality and other related matters.
A recent painting of mine that was
first shown at Monsterpalooza.
            I was in LA for the awesome Monsterpalooza show this past April.  While I was there I had a great time visiting with friends and just simply enjoying the show.  The day that I returned home I noticed numbness down the left side of my body.  After a few days of getting worse, my wife convinced me to go to the emergency room.  Within an hour of my arrival the doctor came in and told me that the CT scan revealed a tumor in my brain.  By the end of that day the neurosurgeon suggested brain surgery as soon as possible.
            I was in shock. How is this possible?  I went from feeling great, to having a brain tumor overnight.  I went through the surgery and was back home in a week’s time.  Next came the waiting for the pathology report.  That was the most stressful 7 days of my life.  Finally, the results were in and the verdict was exactly what I did not want to hear.  The tumor turned out to be a glioblastoma, an aggressive cancerous form of brain tumor. 
After surgery the doctors gave me some time to recover before starting me on the next wave of treatments.  This consisted of six weeks of daily chemotherapy and 30 rounds of radiation blasts to my brain.  I am currently on a month long recovery break.  At the end of the month I will start another year of chemotherapy.  To help my odds, I am also attempting a few alternative approaches to cancer healing (for more details you can follow the blog http://starvethecancer.blogspot.com).  The life expectancy with glioblastomas is not very great, so the odds are against me.  However, I am not giving up.  I plan on living a full life, and will be looking back on this as an annoyance that got in my way for a while. 
            So what does this have to do with the readers of AFM?  Directly, not a lot, but indirectly, everything!  I want to take this time to remind everyone of how precious life is.  You never know what is around the next corner, so never take anything for granted.  Within a month of my surgery, my sister-in-law’s Uncle Mike was killed in a work accident.  He died instantly without warning or pain. 
Another month went by before I heard the sad news of the passing of fellow modeler Steve Nagy.  Steve was relatively new to the modeling scene, but was quickly impressing people with his great building and painting skills.  He kicked butt in the contest at Monsterpalooza 2013, and made his first trip to Wonderfest this year.  Steve did not go instantly like “Uncle Mike”, but his end was almost as sudden, passing away from injuries sustained in an automobile accident.
Rather than depress you all with more bad news, I want to take the rest of this space to challenge everyone reading this to improve his or her life in at least one way.  Whether it is to stop procrastinating the next big project, or pursue a lifelong dream, please make a plan to get things started.  It is very easy to sit on the couch in front of the TV, maybe watching the Travel Channel.  With extra effort, you can go to the exotic places you learned about on “No Reservations”.  If you have children, make an effort to include them in as many things as possible (nothing is as important as family time).  Getting kids involved in building model kits is not just a great way to spend time with them, it also insures the future of the hobby.
If figure modeling is the most important thing in your life, take it to another level.  This could be in the form of setting the bar higher for your next kit.  If you have never made a custom base, give it a try.  How about getting into kit conversions?  There are endless possibilities from a simple repose, to a complete makeover that changes a kit into a custom piece of art that nobody else will ever have.  If these are all things that you have done in the past, maybe it is time to try your hand at sculpting.
Outside the hobby there is an endless list of things to try.  Learn to play a musical instrument, take up hiking, surfing, scuba diving, skiing, kayaking, photography…  Point is, for every person, there is a list of things that have been thought of, but never executed.  One of the many keys to a happy life is to not have regret over things that you could have easily done, but instead put off until later. 
If someone would have told me in March, that I was about to go through everything I am currently dealing with, I would have told them they were nuts, however, this bad dream is unfortunately real.  I still have a lot of things that I would love to do, and I plan on doing them.  Having said that, if this does not work out in my favor, I can honestly say that I will be leaving here with no regrets.  I know it is not easy to learn from others, but trust me, you will be happier trying and failing than never trying at all.



Saturday, July 27, 2013

Chemo Holiday


Me, my Dad and two brothers. Nice to all be together.

Chemo-holiday is what the medical professionals refer to the breaks a cancer patient receives between rounds of treatments.  The month of July has been my chemo-holiday. 

I had grand visions of feeling completely normal, back to my original self during this break.  However, the physical damage caused from the radiation, chemo and surgery has left me feeling a bit worse than I care to admit. I guess I am human after all. I do actually feel much better than I did last month, I just don't have all of my energy back yet.

I did have a great time during my chemo holiday.  The month started with my brother flying down for a few days.  We had a great visit with him and other family members. Thanks to my other brother and a friend of his I got to spend a day on the ocean fishing for cobia. I also had a couple of friends come in from out of town.  The three of us plus a local mutual friend had a great weekend, with the highlight being a day at the Salvador Dali museum.
Hanging with Christian, Dave and Jason at the Dali museum.
Next we visited Rhonda's family for a couple of days before heading to North Georgia to stay at the Second Wind Cancer Retreat.

The beautiful Second Wind Retreat cabin
Second Wind was the perfect closing to my "holiday". Earlier this summer when I received the news that I had cancer, we were forced to cancel our summer vacation plans.  Eventually Rhonda found the website for Second Wind. What a blessing!  This place is absolutely amazing.  Peacefully situated in the mountains of North Georgia. Located far enough away from everything to be completely still, quiet and beautiful, but close enough to several great little mountain towns if you need to see civilization.
Chilling on the front porch at Second Wind

We did some nice hikes where I pushed my body harder than I have since my surgery.  I was able to handle things pretty well, but definitely felt the fatigue.  Quite the humbling experience it was to have to struggle through a hike that I used to be able to do without breaking a sweat.  Unfortunately my son was unable to join us otherwise, the trip was perfect.

With the month coming to an end, I return back to my new "normal". Monday starts the first of three consecutive days of doctors’ appointments.  By the end of the week I will most likely be back on chemotherapy, but since I have learned to take things day by day, that is a story for another time.

Rhonda and Illiana on the bank of the Toccoa River

Sunday, July 7, 2013

Diver Dan at Central Florida Hyperbaric

 


Brain cancer cells are nasty little beasts.  They drag themselves through the brain, like “Thing” from the Addams Family, looking for a nice oxygenated spot to hunker down and start growing a big fat tumor.  Unfortunately, as they slink around they create a web of cancer cells that wrap around the areas of the brain that you might find pertinent, like the ability to ask for a cold Guinness or recognize your kids when they bring you one.  The goal is to stop the little monsters from running crazy through your brain, because once they do, it is very hard to control them.  Want to throw some Temodar (chemo) at them? Go ahead!  They just smile and mutate!  How ‘bout some Avastin (another chemo)?  They just creep gleefully deeper into the brain! 
Dan in hyperbaric chamber
HOWEVER, there is one option that seems to help stop them...OXYGEN…LOTS AND LOTS OF RICH PURE OXYGEN!  Now you’re probably thinking, “Isn’t that exactly what the little grim reapers want?”  Why, yes it is…but the greedy oxygen addicts aren’t expecting the overdose that hyperbaric oxygen therapy (HBOT) can cause.

 Inside a hyperbaric chamber, the body is exposed to air pressure up to three times higher than normal which means your lungs can gather up three times more pure oxygen than when you breath at normal air pressure.  All of this scurries through the brain giving the cancer cells massive amounts of oxygen which stops them from plundering through your grey matter looking for more.  Since the oxygen addicts are satisfied, they sit bloated and happy in one spot making it easier for the radiation and chemo to annihilate them.  

Super oxygen saturation also kills cancer cells in a second manner.  As stated above, they are addicted to oxygen BUT they are totally adapted to thriving in low oxygen environments.  When a brain cancer cell gets too much pure oxygen, because of its damaged mitochondria and adaptations to low oxygen, it basically has an oxygen overdose and dies.
Central Florida Hyperbaric

Interesting Hyperbaric Oxygen Therapy facts:

1.     Hyperbaric Oxygen Therapy (HBOT) is FDA approved for treating 14 conditions in the U.S.  Insurance will only cover the cost of HBOT for these 14 conditions.
2.     A single one-hour treatment at Central Florida Hyperbaric is $135.  The exact same treatment in a hospital would be between $1000-$2500 in the U.S.
3.     HBOT is approved for treating over 80 illnesses in numerous other countries.
4.     Pharmaceutical companies in the U.S. actively lobby against HBOT.
5.     Pharmaceutical companies in the U.S. are successful when they lobby against HBOT.
6.     See number one.



Tuesday, June 25, 2013

Considering the Big Picture, I’m Pretty Lucky!


Some days I still feel the shock of “I have brain cancer”.  However, when I look around me and see what many others are going through, I count my endless blessings. 

This is the start of my sixth week of radiation treatments, which puts me at the Florida Hospital Cancer Center at least 5 times a week.  Each time I am there I realize how fortunate I am to be able to walk in under my own power.  As any parent does, I worry about my kids every day, especially with this going on, but at least they are old enough to not need constant attention.

Waiting room full of friends and family while I was in surgery.
My bout with cancer has brought my family closer together, which is not always the case.  I am continuously amazed at the support that I receive from my wonderful friends and family (plus the extended network of their friends and family).

I honestly don’t believe in luck, so rather than doubling down, I simply give thanks that my situation is what it is and not worse