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 :)

Update March 14 2010

I'm in a good, positive place today. The sun is shining, I'm pretty much pain free (other then my left knee but I can deal with that), and all seems right with the world :)

Had a wonderful breakfast yesterday with a couple of old friends and workmates. Always nice to talk about sales processes and gossip with you guys :) Far better then talking about being sick.

Nothing much else to say... just hope this peaceful, contented feeling lasts a while longer.

Post Houston Update March 9th 2010

Dad and I got back from a week in Houston last night. Overall this trip was much better then the first time, primarily because I wasn't as sick as I was the first time. I'll cut to the chase and give you the update and prognosis:

The doctor believes the treatment is having an effect on the cancer. The overall impression is mixed. There are some places where the cancer is less severe, such as the primary tumor in my presacral area, which has shrunk significantly. There are some places where the cancer is stable, and there are some places where there is new cancer. There are more places where the cancer is less severe and stable then there are places where there is new cancer. My previous prognosis was three to six months, without treatment. My current prognosis is 18 to 24 months, and will probably increase since I had a second treatment. So overall, things are going in the right direction.

I am not jumping for joy. I am far more stoic and sober about this then I am jubilant. This is a very serious aggressive disease which is not going to go away quietly. Two years is far better then six months, but it's still two years, not the so called 'rest of my life' whatever that means (although there is a major part of me who thinks the whole prognosis thing is full of shit; I didn't believe it when they told me I had six months and I don't believe it when they tell me I have two years. I think I'll be around a lot longer. But what do I know?) What I do know is that I intend to spend the rest of my life making a difference, being around people I love and who love me, and having a fucking good time for as long as I can. In short, the same as I was before I went to Houston :)

If you have any questions about the above, please send me an e-mail and I'll get back to you some time before Columbus Day :)

Houston Tomorrow Update February 28 2010

As many of you know I'll be off to Houston tomorrow for a week to get the second high dose radiation treatment. I'll know more about my overall prognosis as well and I'll post what I can, when I can, over the week I am there.

I have been in overwhelming pain much of the time lately and I'm feeling quite discouraged. I hope the prognosis is hopeful, but the future doesn't really matter when one is in pain constantly. Thanks for your support and good wishes.

Update February 16 2010

I want to give you all a short update to let you know what's been going on.

Since last we spoke I have been in a lot of pain. I had a brutal sinus infection (which apparently also spread to my ears as well). Fortunately after going to see the Ear Nose & Throat specialist last week and being prescribed a pretty hardcore anti-biotic, that has pretty much gone away. The anti-biotic unfortunately had its own side effects, which included causing a lot of stomach and abdominal pain. I'm not sure if I am allergic to something in the anti-biotic, or whether the stomach and abdominal side effects exacerbated my crone's disease; but I started having a lot of arthritic type pain about the time I started taking the medication. Consequently I have been in extreme pain for about a week now. The pain has primarily been in my right arm and elbow. Even though I am left handed, I do a lot of things with my right arm and doing anything has caused me excruciating pain. As you can imagine typing was not easy so I didn't even try.

I'm feeling somewhat better today (obviously since I'm typing) and going to see my arthritis specialist today so he can give me an idea of what I need to do. As many of you know I'll be going back to Houston on March 1st so it's imperative I'm pain free (or pain tolerant) when I go. I'll also be in San Francisco this weekend (G-d willing) so it would be nice to feel like somewhat of a regular human being again.

This last series of events has made me so discouraged, I can't even begin to express it. I am a strong person and I persevere no matter what, but it's hard to be strong when you can't move due to pain. Those of you who are healthy can't imagine what it's like for people who are in chronic pain or deal with chronic health issues. It's discouraging and depressing.

Update January 29 2010

As many of you know, it's my birthday this Sunday. There was a time not too long ago where I had my doubts as to if I would make it to my birthday or not. I am so happy that I am in a position to say that I believe I'll be around for a good long while. Obviously I don't know for sure, and for all I know I could still be in the position I was in earlier on, but I believe and I am acting as if I will be here.

I can't believe it was almost 365 days ago that I celebrated my 40th birthday (many of you were in attendance). That was truly an overwhelming night and one that continues to resonate. This year, I'm celebrating in a more subtle way. Tonight I am going to see the Pee Wee Herman stage show with my friend Josh; and this weekend I will be having dinner / brunch with both sides of my family. I know I say this often, but I am so blessed to have my family and friends. There is no way I could have gotten through this past year without you.

I am feeling much better. My aches and pains have lessened to the point where they are bearable, and having been diagnosed with a sinus infection, that seems to be going away as well (thank goodness). I'm happy this morning. All seems OK with the world :)

Update Saturday January 23

A short update to let everyone know how I am and what's been going on:

I have been suffering from a head cold for about a week now which I couldn't shake. Combined with the rainy weather, this has made things uncomfortable for me. I've also been dealing with arthritis like aches and pains, and general fatigue. So, all in all, I've been feeling pretty crappy as of late.

I don't have any news regarding the tests or progress regarding the upcoming treatment in Houston. So far as I know, everything is the way they expected it to be. If I hear anything specific, I will let you know here.

Thanks for your concern :)

Update January 17 2010

I watched a remarkable documentary on PBS exploring how the Beatles helped to bring down the Soviet Union. The extent to which kids in the USSR went to listen to the Beatles, and to Rock in general, is amazing and touching. Music is perhaps the single most powerful communication humans have, and the way it influences is astonishing. I know for me music is as vital as breathing. We take access to music for granted, but it wasn't always so...

I have also been watching the devastation in Haiti. It is so heartbreaking I can't watch anymore; I have to change the channel. There are many ways to donate; please give something, even old clothes, if you can. Also it's a good reminder to take a look round your home and see if you are prepared for a quake (if you live in So Cal or other earthquake prone climes). This concludes today's Public Service Announcements; we now return to regularly scheduled programing...

In personal news, I feel good in general. Still more tired then I'd like to be. I'm in the process of having a lot of blood tests and such to see how my body is reacting to the treatment I had in November. So far, so good. Everything is apparently as it should be. If anything changes I'll let you know.

Update January 4th 2010

I've found it very difficult to write anything lately. It feels very daunting to sit down and try to write down my thoughts. I know many of you have been concerned because there has been no regular updates. While I was feeling extremely fatigued for a while, I am feeling better. In terms of my treatment, I will be going in for some scheduled blood work over the next weeks, but there's nothing really scheduled until I go back to Houston in March.

I was feeling very tired and out of it for a while, but I seem to be getting some energy back little by little, and I'm certainly not as out of it as I have been. However, everything feels like such a big deal lately - I mean, doing things as opposed to doing nothing. I'm not sure if that is because I am actually physically tired (which I have been), or because I'm depressed (which I am as well), or something else (when I say I'm depressed, I mean chemically. I'm not sad; there's a difference). Anyway, there it is.

December 19th 2009 update

Hello all :) Since I've been back from Houston (one week today) I have not felt very good. I've been in a lot of pain, primarily in my left leg and lower left back, and I've been very tired. I went to see my GI doctor Thursday in hopes he might be able to address this, since I believe the pain is related to my Chrone's disease, but he wasn't able to help. The good news is that the pain is getting better on it's own, and I have an appointment with an immunologist on December 30. I am extremely fatigued, however. I expected to be tired but it's still very frustrating. Hopefully I will get some energy back soon.

Post Houston Update December 15 2009

Let me begin first by apologizing for not updating more regularly. I know you are very interested in what happened in Houston. As many of you know, for the majority of the time there I was sick in one way or another and didn't feel much like updating. Also, the internet connection in my hotel room was spotty at best and very slow when it was working. Anyway, I'll fill you in on what happened:

I had the treatment (Indium-111) on a Wednesday afternoon. It took about three hours and was administered via my IV port. It was very similar to a chemotherapy session. After I had it I felt like I had undergone an extreme chemo session and suffered the same sorts of side effects (nausea, diarrhea, fatigue, etc.). Of course, the added layer to all of that was that I was radioactive, which led a new twist on managing the effects, and on cleanup. I spent Wednesday night, all of Thursday, and Friday morning by myself in the room. I was very tired so being by myself didn't bother me so much, plus Dad was in the room next door. On Friday I went back over to the treatment center and was scanned, and then released. A technologist came over to the hotel room to make sure it was safe from radiation. Anything that was "hot" I had to seal in a plastic bag and take home. Dad and I left Saturday morning and were very glad to come home.

At this point, there is nothing for me to do but wait until a month from now when I'll start my blood testing regimen at Cedars. I'll be going back to Houston in March or April for another treatment and at that time they will do scans to see if the disease has begun to go into remission. Over this time period (between now and March) my white blood count will drop and I will feel very tired. This is normal and anticipated. I am still very tired and also still in pain in my knee and back, which concerns me a lot. I'm going to see the doctor Thursday to find out what is causing this and if there's anything that can be done.

I'm very grateful for all of your support over this time and as I move forward I will of course keep you posted.

Update Houston December 6 2009

A lot has happened since last I updated. I will begin with the best news of all, which is that the doctors administering the treatment as well as the oncologist he referred me to agree that I am an outstanding candidate for this particular type of treatment, and that the results should be very favorable. The tests that they did to determine if my cancer would be receptive to this kind of treatment came back strong. I don't know the results of the PET scan which was administered Friday, but the other tests that were back indicated a strong 'uptake' of the treatment medication, which means my cancer cells will absorb it well and effectively. This is great news because it means I have an excellent chance of a favorable result. The PET scan results will play a part in their prognosis, but everything points to a very good result.

The bad news is that I have been in pain almost continuously since Friday. Thursday I had to take a large dose of predinsone, a steroid, to contradict the allergic reaction I have to iodine contrast. The steroid took care of that reaction but I've been in constant pain ever since. Friday I had to go over and get Demerol shots to deal with the pain and I've been on painkillers since as the pain has not gone away (it has gotten less intense however). I haven't felt much like doing anything (not that there's anything to do here anyway). We did drive to downtown Houston yesterday, which was nothing special. It snowed here Friday (for a So Cal boy, that was a highlight), and it's now raining heavily. It doesn't matter because I don't feel like doing anything anyway.

I'll keep you posted as to what happens between now and Wednesday.

Houston Day Three December 3 2009

Not in the best of moods as I write this because I am catching a cold and feel like crap. The weather here is cold; in the fifties during the day and in the forties at night. It also poured here yesterday. To give you an idea of what they are expecting, there could be snow here by Friday. I said it: SNOW. Not what a So Cal boy is used to.

I'm frustrated because I have to take a test where they administer an iodine contrast and I am allergic to iodine. I have to take steroids to counteract the effect and steroids have their own side effects. I have no choice but to do it; if I don't my treatment won't happen. So, that's that.

My impressions of Houston so far: Houston is like Los Angeles with no soul. It consists of strip malls, freeways (tollways) and office buildings that spring from the ground like weeds. One can see why George Bush made this home: a souless perversion of the American Dream, where the car exhaust from freeways replaces the smell of flowers and office buildings are trees. This is what America would be like if Republicans ran everything.

Sorry, I'm not feeling too well. More of an upbeat post tomorrow.

Houston December 1st 2009

My first morning in Houston, sitting at the desk at the Candlewood extended stay hotel :) Leaving in about an hour for my first full day of tests. Had a small test yesterday when we arrived, but today begins a week of intense scans and tests in preparation for the treatment next week.

The flight was good. We didn't have a lot of time to spare at the airport so all I had time to do was get a pack of gum and water before getting on the plane. The flight itself was good, no problems. When we got to the airport in Houston, Dad and I got separated for a short time. My phone ended up broken; I couldn't turn it on to make calls, so I was walking to the Customer Service department to have Dad called when we found each other. Then, as we walked to get our bags, Dad discovered he lost his hearing aid, so he had to go back and look for it (he found it eventually). All of this was complicated by my phone not working and Dad's foot giving him problems (Houston's airport is large and there's a lot of walking). It worked out though and we ended up driving to Westchase to get my first test done.

The first test was a MUGA test (not muggle, Potter fans) designed to measure my heartbeat and overall heart effectiveness. It took about an hour. We then went to get my phone fixed (thanks Verizon) grocery shopping, and back to the hotel, where we both were exhausted.

I don't have much of an impression of Houston as I haven't seen much yet, but so far it's what I expected. I'll continue to post here nightly or as the situation calls for. Thanks for all your good wishes and love.