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Brain Tumor Support Page (Ependymoma)

On May 6th, 2017, Chris was diagnosed with a rare brain tumor called an Ependymoma, located in his 4th ventricle. Ependymomas account for less than 2% of primary adult br[...] read more

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Update - Just keeping swimming

As Debbie and I both brush our teeth in the morning, I ask "Maybe that's why I lost my hair so young, ha"

Making stupid jokes about what we both know is a serious issue helps get us by each day. I took a small break from posting as I needed to "get away" from it all for a little bit and just spend time with family. I hadn't realized just how stressful this whole thing had become until I put it aside and just had a little fun with the kids. 

What Dr.Black had to say on the last visit

We yet again made the 2 hour drive to Cedars and sat down with Dr. Black, 5 years of medical records in hand. To make a long story short, we're going to wait a little while before attempting surgery. While doctor Black felt that the potential for surgery was a possibility and one that he felt will go well, currently, the risks of operating within the area of my brain the tumor is located is just not yet worth the risk. While I do have a number of symptoms that are unusual and frankly, annoying (if not embarrassing at times), the symptoms are not yet worth the risk of venturing into the middle of my brain. At least not without a better idea of the growth rate. Currently the tumor is stable and has not yet reached my brain stem. We had asked if it will in time and Dr Black replied that it was possible but as with any tumor, you just can't say how or were it will decide to venture. 

So, back to normal?

A little. I'll return back to Cedars at the end of the year for another MRI on my brain. At that point, a span of time long enough to measure further growth should be sufficient. If things look like they are getting worse, Dr Black stated we'd start discussing more serious options, as well as the risks/benefits,etc. The team at Cedars said if I start to feel worse or things take a rapid change, to head back immediately. 

How are the symptoms? 

Overall, I'm ok. There are days that I feel tired for really no reason at all. 4,6 or 8 hours of sleep, it really makes no difference. Other days I'm fine. Perhaps it's stress, perhaps it's all in my head (no pun intended). The one symptom I can pinpoint as definitely not normal is the leg twitching. It's not painful, it's just really weird. Luckily it usually only happens when I'm laying down. I feel like Michael J Fox when I sit back in the recliner to read my book. Aside from that, I'm trying to eat as healthy as possible, I take my vitamins with my tea each morning and both Debbie and I have started exercising a little together to help bring up the energy levels. At the very least, knowing "it's in there, growing" helps to put things in perspective each day. From business to family, I really don't stress about this stupid stuff anymore. 

I have a doctor's appointment with my GP today and will have many more as he ensures things are stable while we wait until the next MRI. We've also successfully moved over to PPO insurance. While it's ridiculously more expensive each month than HMO, at least I won't be turned away as I'm bounced around from doctor to doctor. No more pre authorizations (except to the credit card). 

On a side note, I became a U.S. citizen since my last post! Yesterday I was able to fill out my first voting ballot (water district). However small a vote it is, I'll proudly drop it off in the mail this afternoon. 

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