Another Reminder Of Glioblastoma's Evil Power

Right after I got out of the hospital, almost everyone I know had stories of meeting or hearing about someone else with a glioblastoma.  The reality is there are many types of brain cancer, and when someone hears the word glioma, it is usually not the same thing.  However, I did hear about two people who actually had the same disease as myself. One was the young nephew of our mortgage loan officer.  He died in his mid-twenties, just months after finding the tumor.

The second person, who is a friend of my parents, was diagnosed earlier than me.  She too was one of the rare people who made it past the two year mark of diagnosis.  She was doing great until one day her husband came home to find her confused and unable to speak. A quick trip to the hospital was all it took to find out the tumor returned, reminding me that I can never let my guard down.  She is back in treatment and at this time we can only hope the best for her.

After hearing this I asked my neuro-oncologist how he handles having to tell a patient that their cancer has come back.  He said he has individual relationships with each patient and tries to figure out the best way to approach the situation.  He continued to say that he had to go through that several times on that particular day.  I know a lot of people have a hard time stepping away from work each day, but I can’t imagine how to shut that out.  More power to him!

Now onto my latest news.  As far as the cancer is concerned, I am doing surprisingly great with no reoccurrence.  The seizures on the other hand are still causing problems.  Because of my amount of seizure activity my epileptologist, Dr. Ania, feels that “I am like a volcano ready to explode at any moment”.  I, on the other hand am too stubborn to add more meds.  However, the longer that you have any type of seizure activity, the greater the chance of going into status epileptics, which could be very hard to get under control, and sometimes fatal.  We had a trip planned to the Sierra Mountains so I could fulfill a lifelong dream to see the ancient bristlecone pine trees.  Everyone was concerned about me going because of the high altitude, over 11,000 feet and the remoteness of where we would be.  I decide that it is worth the chance, I'm not going to let this disease completely control my life.  We rented a satellite phone to be as prepared as possible.  Dr.  Ania also prescribed a very powerful breakthrough med that Rhonda could administer in case of emergency.  Even with the phone it would take an hour or two for the paramedics to reach us.

The trip went well and now that I am back home we have to figure out what to do about getting control of my ongoing seizure issues.  I was supposed to add a new drug before the trip, but after picking it up from the pharmacy I decided against it.  So my next move is to do a 24 hour lab test to see exactly what kind of activity is going on.  I will be stuck in a room all day wired up like “your humble narrator” Alex, from A Clockwork Orange (sans the eye clamps).

I am hoping for miracle test results that show I won’t need more medications.  However, I think I am kidding myself and the hunt for the right pharmaceutical cocktail will start all over again.

Meanwhile, Rhonda continues to look for more answers or options.  She again called several doctors at top university and research centers.

Their theory is, if I am able to walk, talk and basically function, I am doing great and should count my good fortunes.  I am 100% aware of this fact, but it doesn’t make things easier.

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.