Monday, September 3, 2018

Recurrence Three

Back in July, the 18th to be specific, My Contrast MRI revealed a spot my neuro-oncologist was worried about. We scheduled a follow up MRI in 6 weeks, and are shocked to see the rate and scale of the progression

This is the MRI 6 weeks later, 8/28/2018 - Spot turned into a ~1.5" blob



I'm feeling 'normal' right now and in a good mood. I had some noted physical changes about 3-4 months ago. I stopped driving because I did not feel safe because my vision was getting confused - had hard time keeping between the lines and unsure navigating traffic. Not blurry or double vision, I just lost the understanding of what I was seeing and thus distorted ability to react to it. I can read just fine, and still have been keeping my mind busy with learning new software systems. I'm almost done writing a mobile app that will send a text message to a loved one if my phone does not move in several hours, or moves excessively like what would happen in a fall or seizure.. assuming I had my phone with me. In conjunction with this my left side started having some new problems. I have a hard time making a fist with my hand. My left leg started 'giving out' while I was walking. After my last surgery it would give me this type of problem when I got up from sitting, now its happening while I am in stride. In the last couple weeks my left leg would occasionally not cooperate with walking causing me to stumble. It would fail to lift off the ground and swing forward in  coordinated manner with the other leg causing me to do do a little spin with my foot stuck to the ground. No falls yet, but I catch myself on nearby counters and the like a couple times a day. A couple times over the past few weeks I would drop into a daze - that kind of feeling I get when my mind detaches from my body. Oddly, this would happen when I was eating flavorful/spicy foods. I would stop chewing and sit there with an almost blank mind for 10 sec or so, wake up and continue normally.

My family and I decided to treat this with a relatively new approach with a cancer medicine 'Avastin' as opposed to the conventional treatment of surgery/radiation/chemotherapy - which has not worked two times now in 2010 and 2016.  The doctors tell me that surgery gets more risky with each one with further dangers in lack of healing and causing more deficiencies with each swipe of the scalpel. My NO has seen Avastin both reduce swelling and tumor size in cases like mine with few side effects. He added that any improvements are temporary. Stopping these episodes of re-growth is out of reach for this disease. A similar risk exists with surgery, they can't get it all, and whatever tumor is left probably spawn and grow. The doctor said that the Avastin  treatments can continue as long as they are working. It's yet to be seen if the insurance will pay for it seeing that its a new brain tumor treatment approach.



I seem to be embarking on the next phase of my journey. Nobody knows where it will take me or the timeline, but rest assured I will try keep a smile on my face along the way.

-Ed





No comments:

Post a Comment

To make a comment without an account, set the 'Comment as:' to 'Anonymous', Type your message then click 'Post Comment' Be sure to leave your name in the comment so one can tell who wrote it.