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.
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| 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.
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.
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| 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).
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| 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.
