The first two weeks after coming home, I felt like my peripheral vision had been restored.  I saw more of my surroundings as I wrote before and I was not so self-absorbed.    When I walked around, I noticed others talking.  I saw what others were doing in there lives.  I started to create my “sacred space” and cleaned out my office. I removed the desk, the bed, and most of the clutter in the room.  The room has been painted a sky blue and next we are going to paint a sunset on the largest wall.  This is still a work in progress. 

When I started to taper my steroids I started to get headaches again.  At first I thought this was just a natural side affect of getting off an anti-swelling medicine and Tylenol would help alleviate the symptoms, but the headaches continued.  I was on a trip in St. Louis and finally decided I needed to go back up on the steroids to 8 mg a day.  That did not stop the headaches but did make them more tolerable.

When I got home from that trip my symptoms continued.  I started to get some neurological twitching in my left side and we called Cleveland and they said to contact my local neurologist.   Dr. Simkins at first said add more anti-seizure medicine but then called back and said to double my steroids from 8 to 16 mg per day to further reduce any swelling that might but still present.  This change has stopped the twitching and reduced the headaches, but did not stop them. 

So my transition home has been difficult.  I came home feeling energetic, hopeful and feeling like I was on the right path to recover and now I am adrift.  Feeling overly medicated and not knowing what to do next. 

The next step medically will be the in September.  I will get a follow up MRI and a new treatment plan which will probably be six more months of chemotherapy. 

It’s very difficult for me to not be sucked into a very deep depression in the juncture of my struggle.  It’s just like the Buddha teachings I had read about.  I took a snap shot of how I felt when I first came home of what life could be like and I keep looking back at that picture and it looks so beautiful and promising even if my surroundings are constantly changing.  And as Buddhism reminds me things are constantly influx and it is my inability not to accept the flux that causes angst. 

So this leaves me asking is my cancer re-growing.  The answer is probably.  Will the chemo be effective?  Don’t know.  What can I do from here?  The below, plus try to do things that have that get me ‘out of thinking about cancer.’ Reduce stress as much as possible.  Continue to enjoy the things I enjoy.

Gratitude.  Connectedness.  Understanding my place in the greater cosmic world.  Continuing to understand what I do and do not have control over.  Continuing to be thankful for even the small things in my life.  Find some spiritual and mental comfort in where I am now.

I’d like to teach at Hana’s school this year…about how to take pictures, make videos, etc.  That would be a lot of fun!  I just don’t know if it’s in the cards physically for me now.

I got together with several people that have cancer in Yellow Springs this week and I noticed that they were laughing and smiling a lot.  It was very refreshing to be around people that have had some of the similar experiences even if their have been different.  I could see in their eyes that there is a different way of being.  And I felt like I have been on so many drugs for so long that I’ve lost sight if that spontaneous way of seeing the world.  Yet I seem to need these drugs to keep me from having seizures. 

Then – of course – I have do a double take and say, “is that just an excuse?”

With love, hope, understanding, and blessings,

Dan
http://katzstein.com
http://life.katzstein.com