I am TUMOR FREE!

Hello Everyone!

I am writing this blog with a bit of mixed emotions today. Many of you know I have been battling intractable epilepsy since my cancer treatment and Wednesday the conversation came about that my seizures are the direct result of a build up of scar tissue that sits in the area of my frontal lobe. My neurologist explained a few things to me the first of which is probably the best news anyone could ask for (I am officially TUMOR free). The second was a little discouraging and I have spent the last day or so contemplating what my next step should be (I will likely never be seizure free due to the build up of scar tissue from radiation on my brain). I finally received confirmation on something that I have suspected since this all started. Radiation produced an additional build up of scar tissue on my brain that led to an increase in seizure activity and as a result, my seizures will likely never stop. Our attempts to adjust medications have not gone well because I am incredibly sensitive to most seizure medications (also allergic to some) and so side effects cannot be avoided to the degree that is deemed acceptable.

Currently I am on a medication called Fycompa (which I now take at night due to the severity of speech and drowsiness that occurs when I take it). This medication has provided me the most relief at this time and I have not had a seizure in a little over a month. The only issues I have experienced are aura's which do not last. This combined with my Keppra are the only things working to control the majority of my seizure activity, but the neurologist wanted me to be aware that our focus on care will be changing. Our goal now is to improve my impairment level to an area that is acceptable and allows me to function at the highest level I possibly can.

With this news comes the possibility that the things I loved so dearly prior to my illness, may never be in my future again. I say may, because I don't wish to speak in absolutes and with the continual advances in medicine there is always the potential that things can change. After all, I was told this type of tumor is incurable early on and that it was likely I would never be tumor free (yet here I am beating those odds once again). I was also told that I would have significant speech and cognitive deficits as a result of the location of the tumor and required amount of tissue to be removed (yet I have recovered 98 percent of my previous function). To tell me no, is to motivate me to push the boundaries of my recovery.

As it stands, I now have to come to the reality that running marathon's may be a thing of the past. I might never be able to coach or play the sport of volleyball again (a reality I thought I would face at a much older age); and that my new normal may involve a very limited ability to participate in exercise. To say I am devastated is an understatement, but I continue to direct my attention forward at the things I have gained since my diagnosis.

The only thing I regret is not listening to my instincts fully. I was told radiation would be a piece of cake, but deep down I had a "not so good" feeling about it. Turns out, radiation nearly killed me and chemotherapy wasn't much better. As I continue my research on important aspects of post-cancer care and diet recommendations; I have come to realize that cancer is a for-profit industry that does not have the best interest of the patient in mind. Chemotherapy and Radiation risks (IMHO) outweigh the benefit and often result in killing the patient faster than the cancer does. It has been my post-cancer changes that have kept me moving in the right direction and I will continue to focus on making the necessary change.

DIET is EVERYTHING. Especially in a day and age that our food is so devoid of nutrients and substance needed to keep our bodies healthy. I've seen people post articles from those who ate well but still end up sick and the reality is, this is an exception and not necessarily the rule. Disease is tricky and can infiltrate even healthy populations, but those who take care of themselves are less likely to experience these issues than those who don't.