“It was twenty years today” was the famous quote from the Beatles Seargent Pepper’s Lonely Hearts Club Band. My twenty years ago today has a slightly different meaning.

This is the day (2/19/04) that I was released from the hospital…for the second time. I was back in the hospital to have a re-resection I might add.

Two weeks earlier I had the most extraordinary five day stretch of my life (1/31/04-2/04/04). Day four was the day that I had a cancerous brain tumor resected from my head. The surgery was deemed a success.  

This day had been scheduled since the beginning of January after making the appointment with the surgeon, Doctor Ghassan Bejjani.  

Let me explain the five-day period. Day one was the craniotomy…cracking the egg. Day two was motor mapping…testing that all bad and only bad tissue would be removed. Day three the surgeon had another surgery. Day four was the surgery, and day five I was released from the hospital.

Yes, I was released from the ICU to the car to have dinner at home that night. I don’t know if he had that much confidence in me or himself.

It was great to move on and deal with the next step. However, the next step was a step back. I went back to get the staples removed and was told “it’s worse than we thought”.

And that is why I had that second surgery. That original surgery was not quite the success as first thought. But the second one was.

Now I find myself in a different situation. I had chosen to do radiation. I felt that this was my only choice for long-term survival. Then I could deal with the consequences from the long-term effects of not only radiation damage, but from the damage of the surgery itself.

Say 19 years down the road.

We have known that I have been incurring brain damage due to the radiation over time. I have not shown much outward or noticeable signs of this, but I can tell.

Throughout my 20 year-stretch I have had what I would call micro neuro episodes. My neuro oncologist extraordinaire, Doctor Lynne Taylor says to just call them what they are… mini seizures.

During a visit with her several years ago, she had suggested that I begin taking anti-seizure medication. At the time, I did not due to the cost of medication and the infrequency of these events. The severity also seemed to be in check.

A year ago, however, I experienced four of them in only a two-week time period with two of them having a slightly higher impact on my body. I have never lost consciousness and know what is taking place throughout.

I have learned the feelings in my body prior to the event and I am typically completely over them within two hours. Sometimes they are not very intense but occasionally they were, and the overall feeling is that it was time for a change.

I had a visit with Doctor Taylor and began taking anti-seizure medication on 1/21/23 and since then, have been dealing with the repercussions of the events and of the side effects of the medication.

It took some time to get the level of medications figured out, a process I am still working on. But now I have been stable for over four months.

I have looked at it this way…there really isn’t much of a difference between an injury and an acute medical situation…many times it takes four to six weeks to heal or correct itself.

But with a long-term chronic situation…the longer something goes unchecked (19 years) the longer it’s likely to take to correct.

And if we go back to the injury analysis…maybe a young guy would be as good as new in four to six weeks…but I am no longer a young guy.

I do feel young for my age but it’s not the same as actually being young.   

Many of you know what it is like to go from no medications to starting a ‘rest of your life’ daily regimen. It can be problematic getting all the moving parts to align.

I know that I am likely to be ‘playing’ with medications a little bit. But I can even go for a compromise…It would be nice to not address this as an ongoing part of my life.

And I do not underestimate the power of those 20 years in my rear-view mirror.

I am not writing this because I need to get it off my chest. I have already been through that, and it is a good idea even if you write it to yourself.

I am doing it because I feel that others may need to know that they are not alone in their struggles.

Stay strong!

 

Cheers,

Jack