It has been a while since I have posted an update. Sorry for the absence. First and foremost I am doing pretty well. For those I saw at LiveStrong Day in Washington DC, I am doing better than I was then.
Things had been improving steadily and then I had a little diversion over the July 4th holiday: I had terrible stomach pain for a few days July 3 - 5. I assumed it was just pain from treatment. I tried to "gut" my way through and lay low. Finally on the 5th I was on the way to see my doc and he redirected me to the emergency room. Within an hour I was in pre-op being prepped for surgery for an appendicitis. I am lucky it didn't burst. At 44 I thought I was too old for that!
So 10 days later I am back on the bike indoors and doing some swimming. I plan to get on the road this week.
And there is some great news - I went to MD Anderson in Houston on July 10th and had a stable and even slightly improved MRI. The trial is doing its job. There was a slightly brighter spot of tumor enhancement in the occipital lobe in the back of my brain on my May 22nd scan that was very concerning and there were questions about how the trial was progressing for me. It was fainter on the July scan so the doctors are pleased, I get to stay in the trial and we are ecstatic!
This winter I was pretty unsteady on my left side. Things had improved significantly and then in May my stability was a not 100%. Just after LiveStrong Day I was having intermittent flashing red lights on my left side. After cutting my face open on the corner of a table bending over to pick something up, requiring stitches, it was time to get my vision tested. It turns out I had lost the vision in the lower 1/4 or so of my left lower quadrant in both eyes. I went on a high dose of Prednisone for a few weeks and increased another drug. The flashing has been gone for a month and my vision seems to be back to 100%. I am going to retake the field of vision test soon to confirm. They cannot say if it is tumor related. treatment effect or something else. It seems to be behind me.
On the Video tab of my Web site www.jimsjourney.com there is a clip from my 20th college reunion on June 3rd accepting an award. The red lights were flashing in my head and I and I was pretty wobbly. I didn't bother to make any notes since I doubted I could read them given my condition. Thankfully I did not trip and fall off the stage.
More soon. Thank you all for your support and prayers.