Side Effects

About this time last year I started having seizures, which I talked about in a previous post.  It took several months, but we found the right pharmaceutical cocktail to terminate the seizures.  In the state of Florida, once you have a seizure you lose your driving privileges for six months.  Six months and two weeks from the day of my last seizure, I have another.  So after a whopping two weeks of driving, I am once again without a license.  Since then I have been having seizures on a regular basis.  These are not as intense as the ones I had previously, although they do take me longer to recover from. 

Not knowing what is causing this new activity my oncologist Dr. Nick decides it is time to get an epilepsy specialist involved.

3D rendering I created as reference for
a new painting about pharmaceuticals. 

Enter Dr. Ania, who orders several tests and doubles the dose of Vimpat, one of the anti-seizure medications that I am on.  The next day I am home alone when the pins and needles feeling starts creeping down my arm again.  I call Rhonda who drops everything and races home from work.  She gets in touch with my doctors who after hearing my symptoms tell her “call 911”.  She says, okay “I’ll take him to the hospital”, and they tell her “no, call 911”.  The house quickly fills up with the local paramedics.  Eight hours and several tests later, the ER doctor comes in and tells me they are doubling the dose of Vimpat.  I say, “We just did that” and to my disgust hear, “Yes, but we need to double it again”.  Vimpat has a long list of side effects and unfortunately I am affected by many of them.  In 48 hours I go from a daily dose of 100mg to 400mg of this “wonderful” drug.  The very next day I start feeling that dreaded sensation again.  Luckily I am not home alone and it is small enough that I am able to ride it out.

Rhonda enjoying a moment when she doesn't have
to drop everything to help me out.

Now I have seizures regularly; an average of 15 a day.  The good news is that the new dose of medications is kind of working.  Although I still have seizures they rarely feel like more than a slight pressure or tingling of my left arm.  We continue to search for the right combination of drugs to completely suppress the seizures.  It will be a slow, uncomfortable process, but we will get there. 

Doctor Ania’s diagnosis is “drug resistant epilepsy” which if he is correct means that I will not only continue to have seizures the rest of my life, but they will proceed to get worse over time. 

Me working on a new painting.

When I was diagnosed with cancer I thought, if I can survive this, my life will go back to normal.  I was also familiar with the saying, “If the disease doesn’t kill you the cure will”. Fortunately neither the cancer nor the treatments have killed me.  So far I have been very fortunate with the cancer.  My bi-monthly MRIs continue to be stable which is much better than expected.  With that said, I can handle a life with seizures much easier than life with cancer.  Best of all, I have been able to work on my art way more than I was ever able to in the past.  Who knows, maybe that is the “silver lining” to this whole freakin’ predicament.

Funny Things About Glioblastomas

There are many funny things about glioblastomas, well maybe funny is not the correct word.  Peculiar, abnormal, unpredictable, deadly, heinous, I guess I could go on, but you get the picture.  One thing in particular about glio cells is their way of lying dormant before showing their ugly heads again. 

I was recently at a convention where I saw a lot of friends whom I usually see about once a year.  Everyone was surprised to see how “normal” I look.  For that matter, I feel pretty normal as well.  Except for the side effects of the anti-seizure meds I actually feel great. 

Annual Wonderfest Party

This doesn’t mean I am cured or in remission.  It really means that the cancer cells are stable.  In fact they never actually say that someone with glioblastomas is in remission.  Reason for this being that: A) there is not enough long term survivors to compile the necessary data to make such a claim;  B) most of the people who have been able to survive ten to twelve years have done so with multiple surgeries to remove new tumor growth.

What Are The Odds

So far I have been fortunate, I am an exception to the norm, beating the odds by making it through the first year with all MRIs showing the tumor area as stable.  I continue to get MRIs every two months, and stay positive that they continue to be stable.  I plan on being here for many years to come. 

A Small but Invaluable Portion of My Support "Team"

Silent Auction Fund Raiser 

I believe that the reason that I am doing so well is due to a combination of factors.  I have received so much support from friends and family (spiritually, financially and morally).  I went through the standard modern medicine treatment even though I am skeptical of western medical practices.  I have tried many natural, holistic and alternative supplements, treatments and diet, many of which I would not have been able to do without the financial support of so many people.  The funds that were raised are still helping pay the medical bills and alternative care that the insurance companies don’t cover. Thank you all!

Moving on, my first oncologist told me, “Hope for the best and prepare for the worse”.  As ridiculous as that sounds it is really all I can do.

I Can Almost Smell
the Lavender From Here

As part of preparing for the worse, we decided to take an adventure from my “bucket list”.  Rhonda was able to use part of her student loan to pay for a trip to Italy and Spain (helping her pay this off is one more reason for me to stick around).  We leave next week and will be posting some stories and pictures of our adventures on another blog that can be read here…

http://colonnatour.blogspot.com  

Unfortunate Surprises

For the past 10 months I have had a numbness sensation over my left arm.  Sometimes it is worse than others, but it never goes completely away.  One Saturday morning as I was walking home from the farmer’s market, the feeling got very intense.  In fact the numbness turned into a burning feeling and continued to escalate as each moment passed.  After about 3 minutes my left hand started uncontrollably convulsing, turning in on itself.  This last a long minute or two, then as the convulsing stopped the burning slowly went away too.

I called my doctor who was not 100% sure what caused it, but reminded me that I was supposed to be taking Keppra twice a day.  Keppra is an anti-seizure drug that they put me on as soon as I was diagnosed with brain cancer.  I stopped taking it because in my opinion the side effects were worse than the chance of a seizure.  At Doctor Nick’s suggestion, I did start back on the Keppra and within hours remembered how horrible that stuff made me feel.  I tried to stick it out, but once again decided to take my chances without the meds.  A month later I had another incident with my hand that was exactly like the previous one.  It was almost time for my next MRI, always a nail biting time, and never more than this one.  Could these incidents be caused from the forming of a new tumor?

Still From The Movie "Dune" Of Paul's Hand In The "Box"

MRI results looked good, so the worries were put at ease.  Another 6 weeks went by uneventfully.  Then one morning I became aware of that dreaded feeling setting in on my arm.  I called Rhonda over who was thankfully home.  I told her it was happening again.   I laid on the couch as the pain escalated, then the convulsions started.  After a minute or two things were only getting worse, my hand felt like it was in the Bene Gesserit’s “Box” from Dune.  Finally, my whole left arm contorted inhumanly over my head.  I told Rhonda to watch out because I couldn’t control it, and did not want to hit her. 

About 30 minutes later I started hearing voices.  Rhonda was talking to a paramedic.  We were all in the back of an ambulance on our way to the hospital.  I heard them say something about cancer.  I was still very confused. Were they talking about me?  I thought I might have cancer, but maybe it had all been a bad dream.  I looked at Rhonda and asked “Do I have cancer?”  Before she could answer, I remembered and stated, “Oh yeah, I have brain cancer.”

Some Doctors Liken Seizures To An Electrical Storm In The Brain

During the previous 30 minutes that I consciously lost, Rhonda witnessed me having a Grand Mall seizure.  During that time I was twitching, convulsing, moaning and I even appeared to stop breathing for a moment.  Never having seen a seizure, Rhonda thought that she was watching something far worse, possibly me dying.  Shortly after the seizing stopped, I opened my eyes.  At that point I was in a postictal sleep where I had amnesia like symptoms (not uncommon after a Grand Mall seizure).  I can only imagine what Rhonda was going through with me laying there “lights on, but nobody home”.

Fist Full Of Seizure Meds That Look Like Easter Basket Treats

After a few tests in the ER, I was sent home.  I have had two more seizures since then, as we try to find the right combination and dose of meds high enough to keep the seizures away, but not so high that I turn into an extra from “The Walking Dead”.

I still hate the seizure meds, but I guess the negative feelings of the meds are better than the paranoia of another seizure creeping up on me. 

Oh, and did I mention, cancer SUCKS!

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

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.

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