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.
