Thursday, January 12, 2012

The Situation

I have probably not been as informative about what is going on up here with this therapy and in general as I should have been. This therapy involves me using a device made by a company called Novocure. Novocure is an oncology research company. They research and explore oncology options beyond chemo therapy, radiation, and surgery.
My tumor has grown faster than we first anticipated. This is why I had been having headaches and seizures before coming up here. The symptoms are being controlled right now by anti-seizure meds and steroids. Controlled, but not stopped. My left hand/arm is less coordinated and feels numb or asleep at certain parts of the day.
The therapy I am pursuing is what is called TTF. I don’t fully understand the science behind it myself, it requires me to wear sticky electrode patches on my scalp, which need to be undone and reattached every 2-3 days. These patches are attached to a machine which generates the TTF(tumor treatment field). The device weighs about 5 lbs. and runs on battery packs which weigh another 5 pounds. It is very conspicuous, and cumbersome, and bothersome. The battery packs last for about 3 hours at a time.
In essence I am carrying around a 10 pound device which has 3-4 hrs of battery life in a purse that holds nothing besides the device.
The electrodes cause skin irritation, and on occasion cause a burning sensation on my scalp.
I have a braid of cables, which hangs, off my head and attaches to the device, basically like the movie avatar. The goal for treatment is to have the device running for 80% of the time it is attached. I can plug the device into a wall charger but then I limited in how far from an outlet I can walk. More treatment is better but 80% is what the company would really like to see.
At this point I don’t know anything. I don’t know that this will work. The only certainty is that if I don’t do anything this tumor will kill me.; one time table said within 6 months. I have high hopes this will work. But if we knew this worked it would have been what we did first. I may have to tolerate this device or another form of treatment forever. It may take some time to make a determination of whether this therapy is effective. In the mean time the tumor will likely grow and if the symptoms get worse then another surgery may become necessary. Surgery was not the option initially because, it limits the other therapies I can pursue. In the time it takes to heal from surgery the tumor could grow back and I would be in the same spot as I am now but have risked another brain surgery. There may come a day when I’m “in the clear” but to think that way may just be wishful thinking
At this point I need to have everyone understand what I have come to understand these last few weeks: I will probably spend the rest of my life fighting against cancer. Not sure how long that will be but that’s the situation. This is literally a fight for my life and I won’t be able to look myself in the mirror if I can’t tell myself I tried everything that seemed reasonable. Not sure how long that will be but that is the situation. This will not be an easy or convenient life, but it is what I have to do. Concepts of easy or convenient left a long time ago. My activities and energy will be devoted to trying to beat this.
I’m telling all of you this because I need you to understand that I’m going to be going through a lot of changes as a person. I’m anxious, upset, and impatient. I’m not happy with the changes that I’ll have to make because I feel like, in some way, they’re going to change part of me. Although I may have been awkward or stood out a little before, the truth is I considered my ability to be comfortable in my own skin one of my best traits. That is no longer the case.
Doing activities of any kind will be a big deal for me, because I’m not sure what I can do and the planning and effort it takes just to leave the house are fairly significant at this point. Fighting like this will take it’s toll on my ability to be the friend that I would really like to be.
I know all of you have told me that I don’t owe you anything for your support. Unfortunately, that’s not the truth. I promised my friends and my family that I would never quit this fight and I won’t.


ddbmc said...

John, you are dearly loved, as a son, grandson, brother, uncle and friend. You are thought of each and every day. You are prayed for each and every day. We all wish we could make this fight easier for you!

We know you are giving every ounce of your energy to fighting this disease. Know that we are here. We care. You touch us with your words. You help us understand the brutal battle you are in. You are a warrior and we believe in you!

katieicunurse said...

Thinking of you always...
your an amazing man.
And now, an amazing avatar.

katieicunurse said...

Your Pats are going to the superbowl!! Maybe that device on your head has magical powers beyond getting rid of that damn cancer :)
You are're "living out loud"...kicking the big C in the ass by enjoying your teams victory live at the stadium on Sunday.
Keep it up John!