Closing In On Two Years

This all began April 2013 when the ER doctor came in and turned my life upside down with this statement … “The CT scan shows a lesion on your brain.”

Fast forward to today.  I honestly thought that I would be dead by now.  However, I am still here and if I make it one more month, I will be one of the less than 25% of Glioblastoma patients to survive this long.  Ten years ago the two-year survival rate was under 12%.  Apparently the research is paying off.   I am very fortunate to be on this side of the statistics.

Brain waves during seizure activity

However, this is where things get tricky.  Because surviving this long is a rare and relatively new thing, there is minimal research on addressing the various complications of the “long term” survivors.  In my case the biggest problem is refractory epilepsy (seizures that do not respond well to drugs).  The epileptologist whom I am working with is one of the best in Florida.  However, he is not very familiar with seizures as they relate to glioblastomas.  So Rhonda contacted specialists at Duke University and Mayo Clinic.  In both cases they agreed that there is not much else that can be done.  With the lack of research in this area, trial and error is our best course of action.

So my treatment consists of trying various combinations of pharmaceuticals  (this is typical for anyone with refractory epilepsy, we are just more in the dark in my case).  Going from one med to another can take months for the gradual introduction of one before weaning off another.  There are so many combinations and variables that it could take a year or more to find a blend that works.  Once found, the cocktail may only keep the seizures away temporarily, before they come back as my body grows accustomed to the drugs, and we have to start over again.

I feel better than I have in a long time on my current blend of drugs.  However, the seizure activity has not been controlled.  Furthermore, feeling better is a relative thing.  Last summer I felt great, more so than I had since this all began.  Last fall is when the seizures returned causing my health to go up and down like riding a roller coaster.  One day I physically feel pretty good, the next day I can hardly walk across the room without stumbling and bouncing off the furniture.  Mentally is a whole different aspect.  On good days things are foggy.  I constantly lose focus and catch myself blankly staring away.  Once I snap back I am not sure where I was or how long I was “gone”. 

Every day things that I used to take for granted have now become major tasks.  Remember as a little kid how frustrating it was to tie your shoes?  I often find myself in that situation.  Buttoning a shirt is a real task.  Untangling a knot.  Turning an inside out shirt right side in feels as challenging as a Rubik’s Cube.

My friend Tim once said… ”Several years ago I broke my foot and I remembered thinking how hard it was to make a sandwich with a cast on my leg”.  At the time I thought it was very funny.  Now I think of his comment several times a day as everything I do takes twice as long to accomplish. 

  

One of my magazine articles

For the past 18 years I have been writing "how to" articles for Amazing Figure Modeler magazine. I have also done a lot of commission jobs in this field.  A couple of years ago I started fading out this kind of work in order to focus more time and energy on my fine art.  Thankfully I was mentally prepared to stop working on the 3D pieces, since the coordination problems in my left hand create too much of a challenge to make this sort of thing feasible.  Last week I was reminded of this when I customized a  Disney vinylmation for our fundraiser (more about this event in my next post).

A recent self portrait

Luckily my left arm hindrances have not stopped me from working on my fine art.  I have had to make some adjustments to the way I work.  Like so many things in my life, it has slowed down what was already a time consuming tedious technique,  but I haven’t had to compromise my style.

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