TOP of the Ninth

I'm sitting in my parents' house in what used to be my old bedroom, dictating this to my Mom.  To use a baseball metaphor, it's the top of the ninth.  

As you know since April of this year I've been dealing with very heavy duty health issues, including two major brain surgeries within four days and a liver procedure to unobstruct bile ducts.  These procedures have caused a major toll on my body despite the doctors' best efforts to help me move forward and treat my cancer.   It has come to pass that there is no longer anything anyone can do to stop the progression.  

This is a very difficult thing to come to terms with, particularly as my mind and my emotions are still completely in tact.   I am afraid because I don't know how it will feel to pass on; I have had this same fear since I was a very young boy.  In addition, I do not feel ready to leave yet, but I may not have a choice.  I hope that the transition will be smooth and peaceful and that I will not be scared.

I would like to invite all my friends and family who read this blog to contact me or my mom so that I can may arrangements to say goodbye to you.    I have been very blessed and fortunate to have extraordinary friends and family and right now my greatest hope is to be able to see the people who matter most to me so that I can express my love to them in person.  I know that because of distance, some of you will not be able to see me.   Please contact me through phone, face book or text so I can say goodbye.

I really want to make contact with my Highland Hall crew, as I have not seen many of you since our tenth year reunion.   I want to maintain a connection with you for as long as I can.  

Thank you for following my blog.   I love you and hope to see you soon.

I know that many of you have felt that I've bad breaks in life.  While my life has indeed been difficult, I would not change a thing, as my trials have made me the person I am.  I am very proud of the person I've become.

Short Update June 4th 2010

Hi. A lot has happened since last I updated. I think all of you know by now I had two major brain surgeries at the beginning of May. It is still hard for me to use the computer in an active way (for instance, typing). Although my eyesight is much better (my eye actually opens and I can actually see), I'm still basically operating with one eye most of the time. That's harder then it sounds, even for someone like me who operated with one eye due to myopia most of his life. In addition, I've lost some of my small motor coordination due to where one of the tumors was. This affects my ability to type, among other things, but I'm told it will get better. Finally, it's hard to hold my head up because of the surgical scar from the nape of my neck to the scalp. All of these things have made it hard to update.

I am feeling better but I am very tired. I did two sessions of radiation therapy last week and it made me so tired I asked the doctor to postpone it until I got stronger, so I will restart this coming Monday.

Thats all for now. Thanks so much for all your good wishes.

Update May 1st 2010

I'm not going to be writing about my trip in this update, for reasons that will be clear as you read on. If I feel better I will try to write about it later on...

I had an MRI of my brain because of the severe pain I was having (headaches, trouble seeing, etc.) and it was discovered that I have several small tumors outside my brain, one of which is behind my left eye. I will have to have surgery to remove them. This coming Monday I have an appointment with an eye surgeon; and as I know more I will let you all know.

That's it for now. More to follow.

Update April 30 2010

I have a lot to say, both about my recent trip and what's happening now, but I may not be able to get it all in because I'm not feeling all that well at the moment. I will try...

As far as what's happening now, right before I went away I began to experience severe pain in my right shoulder and arm. This is what happened to me before I went to San Francisco. I was in pain the entire trip, unfortunately, which did not preclude me from having a great time. The pain, as it has done before, traveled through my neck and is now centered in my left shoulder and arm. I have also been getting headaches and experiencing trouble seeing; things like a lack of depth perception, double vision, etc. Yesterday I had a brain MRI to see what is going on. As soon as I know I will post it here. I'm going to stop now, I'll try to write more later.

Update from the 42nd Floor April 1th 2010

I'm sitting at my friends Eileen & Ira's kitchen table, which is on the 42nd floor of an apartment building on Manhattan's West Side. I can see Central Park and Lincoln Center and the Hudson River and the Jersey Palisades. The view is identical from the bedroom where they are letting me stay for the next few days. It was hard to sleep last night because I felt the pulse of the city below me, both a physical and audio vibration. I'm Home. I'm in New York.

The flight out of Burbank couldn't have been better; we actually got in a half hour early. Once I got in I went directly to my friend's apartment. I was quite tired so I slept for about a hour before heading down to 14th St and Ave. A to my cousin Alison's house for dinner with her, her husband Mario, my Aunt Vicki, and our mutual friend Melissa. The dinner and conversation was wonderful. It was hard to comprehend that I was actually here...

Today I am supposed to go to the eye doctor and then meet my Aunt Vicki for dinner and the theater later tonight... More to follow!

Some amazing news from the oncologist Update April 16 2010

I went to see Dr. Ed Wollin at Cedars, who is the Neuroendocrine tumor specialist who recommended I go down to Houston. After reviewing the test results from the first week in March (just before my second treatment), here's what he had to say:

Apparently there is no area in my body where the disease shows any progression from December 2009 t0 March 2010. In other words, based on these tests evaluating my progress from the end of the first treatment, but BEFORE the second treatment. the cancer in my body shows signs of either stability or actual shrinkage. It is possible that the tumors in my soft tissue (liver, etc.) may in fact never shrink, but as they are not progressing it may be they are dead or dormant. He said this is the first positive indication that any sort of treatment is working.

I am still digesting this news. It's quite stunning, but it appears I may actually beat this goddamn thing. As you all know, there have been times in the recent past where I wasn't sure if I would make it past six months, so to get this kind of news is both quite a different medical experience and a real life changer in terms of looking at how I'm setting up for a future which now is possible in reality.

I'll have more to say but I'm still completely stunned and processing this wonderful news!

East Coast Dream Trip April 12 2010

I'm going on my dream trip to New York and Boston next week! This goes to show just how much better I feel this time around after my treatment in Houston... it will be five weeks this Friday since I had my high dose of Iridium, and next Sunday April 18 I will be off for ten days to NYC and Boston. I am so excited!!

I will be attending a Red Sox game while in Boston... Sunday 4/25 vs. Baltimore. If all goes well I'll be sitting in the Right Field Roof section of Fenway Park. That alone has been a dream of mine, but throw in a week in NYC - well, it can't really get any better.

I want to thank my amazing family and friends for making this possible, particularly Eileen & Ira who are allowing me to stay with them in NYC. Thanks to my wonderful Aunt Vicki I will be attending some Broadway shows while I am there :) I will also hopefully be able to indulge my other favorite sports team obsession while in NYC and attend a Liverpool F.C. game at the 11th St. Bar (L.F.C. fan headquarters in the U.S.A.). I think my schedule will allow for me to do this - wow, Red Sox and L.F.C. in the same trip! Next stop: Anfield, Liverpool :)