Update Thanksgiving 2009

I can't believe it's Thanksgiving. I've been so focused on getting ready for Houston that I have barely thought about it. It''s been such an up and down year and it looks like it's going to go out more up then down. I have so much to be grateful for, particularly and always my amazing family and friends. When it comes down to brass tacks all we need in life is family and friends. Everything else is gravy (pardon the pun but I couldn't resist). I am also blessed to have other amazing people in my life, such as amazing medical people who go above and beyond to take care of me, and other folks I meet briefly, such as taxi drivers and pharmacy people who seem also to go above and beyond for me on a regular basis. All of you have blessed my life beyond measure.

Update November 20 2009

Hey all :) A quick update to let you know what's happening. The plane tickets and hotel reservations have been made and I've gotten my schedule for the two weeks I'll be in Houston. I'm very excited, but a bit scared as well. Scared might not be the right word; probably anticipation is a better one. Of course, the key to living life is living life in the moment, so I am trying to put aside anticipation of the future and focus on the now, which is actually pretty good in itself.

I went to see the movie "Pirate Radio" on Wednesday. It didn't knock me out, to be honest. I think it would make a great television series, but as a movie, it was eh. I believe the movie was released in Europe previously and it seems it was heavily edited. Some of the scenes in the trailer weren't in the movie. If you're not a complete radio and music nut like me, skip it. I would recommend the soundtrack, but unfortunately a lot of songs in the movie are not on the soundtrack.

I'll update before Thanksgiving.

Update November 14 2009

Very excited about heading to Houston in two weeks. A lot of people have questions about the treatment I will be having, so here is a small FAQ:

I'll be in Houston about two weeks. The first week will involve a series of tests. Also I'll be meeting with an oncologist in Houston in case there is some sort of problem and I have to be treated medically. The actual treatment will begin the following Wednesday and will last about 4 hours. The treatment involves me being infused with a isotope along with a hormone. The hormone seeks out the cancer; the isotope destroys the cancer cells. Other medication is administrated to prevent my kidneys from being overwhelmed by the isotope (amino acids and such; this is also done during standard chemotherapy). After the treatment I will be radioactive and will have to stay away from people for about two days (people will have to stay six feet away). I'll be drinking a lot of fluid to get the radioactivity out of my system as soon as possible. On Friday the doctor will do a scan to make sure the level of radioactivity is safe, and then I will be released from medical care. I'll go home on Saturday.

I'll be staying at a hotel for the entire treatment. The clinic works with hotels in the area so they know how to deal with patients who are undergoing this treatment. My dad John is coming with me and will stay with me until I begin the treatment the second Wednesday, then he'll go home (since I can't be around anyone), and I'll stay on until Saturday.

84 percent of patients who have received this treatment have positive results. A positive result means either stable disease (the disease is no longer progressing) or the disease has regressed (the evidence of disease has lessened), or the disease is in remission. Of the 84 percent, 20 to 35 percent are in the two latter categories. These statistics are in line with the results from Europe, where they have been doing this treatment longer (since 2000 as opposed to 2004 in Houston) and with a different isotope. It is by far the best option for me at this point. The major side effects are nausea, diarrhea, itching and hair loss. All of these are in line with standard chemotherapy side effects and can be managed. Long term side effects appeared in less then 5 percent of patients and were thought to be the result of progression of disease before treatment, not the treatment itself.

Since this is considered an experimental treatment, insurance does not pay for it. Many of you have generously asked how to donate to my treatment costs. If you would like to make a donation, please contact me via phone or e-mail and I will let you know how you can do that. Once I begin receiving donations, I will be setting up a bank account specifically for medical expenses related to this procedure. Any donation will be very welcome.

Going to Houston!! November 11 2009

Just found out that I am accepted into the trial in Houston and will begin treatment November 30!

I am so lucky to have medical resources available to me that gives me this option, as well as amazing family and friends.

More info to come.

Update November 10 2009

I want to give everyone a brief update because I know you all have a lot of questions :)

I spoke at some length with the trial coordinator in Houston regarding participating in peptide receptor radionuclide therapy, or PRRT. Right now we are in a holding pattern while the Houston folks contact my doctors and get the medical records. From what the trial coordinator told me, there is a success rate of 80 percent (!) from this treatment, but when I asked her to clarify what that meant, she couldn't really tell me. Apparently people who have been in the same dire situation as me have gone in, had the treatment, and went immediately into remission. As much as I'd like to believe that, I'm a bit skeptical of those numbers and that description. The Erasmus University site that I linked to in my previous post claims a success rate of around 45 percent. That seems far more reasonable, but who knows.

When I get more information, I will let you know. For those of you who have asked, this is NOT connected with M.D. Anderson, although this doctor was the previous head of nuclear medicine there.

Finally Some Hope Update November 7 2009

Well, this is what we have all been waiting for. Yesterday I met with Dr. Ed Wollen, the head of the Neuroendocrine tumor program at Cedars. His reputation is such that I believed he would be the final word when it came to the prognosis of my cancer. Needless to say, I was nervous and scared. He read all of my reports and results, which took a while. The waiting was pretty nerve racking. It was worth the wait, because he gave me hope that I have not had before.

He recommended a procedure that they are currently doing in Europe but not doing here. The link to the procedure (website in both Dutch and English) is here. The website explains it in a lot of detail, but here is how I understand it working:

The cancer cells emit hormones. The hormones have receptors that attract and repel other hormones. The procedure involves injecting a hormone attached to an isotope. The hormone finds the cancer cells and like a magnet binds itself to them. The isotope then blasts the cells. The metaphor I would use to describe this treatment is a gun attached to a magnet. From how the doctor explained it, plus the additional information I read on the website above, this treatment is both extremely effective and would have little side effects.

Apparently there is a doctor in Houston who is doing a similar type procedure, currently in an FDA trial. The difference is the dose in Europe is larger and the isotope used is more effective, from what I understood. Apparently the Houston doctor is to receive FDA approval to do the European procedure beginning some time early next year. The plan now is to contact the doc in Houston as soon as possible and set up a consultation and then set up a treatment plan, if he can do it. It would be better to do the procedure here rather then Europe because of insurance, however the costs here are two to three times as much as in Europe. Regardless, if it doesn't work out for me in Houston, Europe will be the next destination.

I had never even heard of this type of treatment before. It gives me a very viable option to stay alive without going through the chemotherapy treatment options that would be available to me here in the United States, if I were to be treated in a traditional manner. It gave me hope that I will be able to live with my cancer and also be able to survive the treatment. In short, I have hope where previously I felt as though I have been simply waiting to die.

I am extremely fortunate that I have had the opportunity to go through this process. It allowed me to really crystallize and simplify my life. The goals of my life are very simple: to be with people I love and who love me, and to do the things I want to do. That's it. If I can do that on a daily basis, I am in good shape. I got to learn life lessons quickly, and now it looks as though I will be able to be around for a while longer. I am excited for the future and hopeful for the first time in a while.

Update November 5th 2009

**I had to edit the title of this post because my blog got spammed.**

I title this update "I'm stupid" because one of the dumber things I do is look on the Internet for stories and links about my cancer, or anyone's cancer. Doing this is really bad for my mental health and I need to really not do it anymore. Unfortunately, like the addict I am, I can't seem to stay away.

I was reading about Internet memes (cultural phenomena spread online) and buried in the story was a link to Randy Pauch's "Last Lecture." I have been thinking about getting a copy of the book because his situation is sort of similar to mine (diagnosed with pancreatic cancer, given three to six months of time to live). Here is the first fallacy: NO ONE HAS SPECIFICALLY TOLD ME WHAT SORT OF TIME I HAVE LEFT. So the comparison to Randy is a bogus one. I can't compare myself to anyone because who really knows? So even putting myself in the same category and trying to get information based on the above fallacy is totally wrong.

The lecture is actually really good and worth checking out, regardless if you have cancer or not. For me, however, I need to stay away from anything like this, good or bad, because my mind goes to a very dark place. The fact is, I am scared about the future, and that I might die before I'm ready to go, and that that process will either be a long dragged out one, or, perhaps a very quick one. The reality is that I only have this moment, as I type these words, and nothing else. I have to constantly remind myself that what is is all I have, and that is pretty good right now, and the future will take care of itself. People die from cancer every day. People die from many things every day, and there is no guarantee that cancer will get me first. All I have is the moment.

I am trying to keep my mind from wandering (isn't that a line from a Beatles song? Fixing a Hole, I think. But I digress.) into dark places. As I said, I am scared. But in fact I have many reasons to be scared other then cancer, and those don't seem to bother me.

I am off to see Dr. Edward Wollen, the Neuroendocrine specialist at Cedars, tomorrow. Not particularly looking forward to it. Hopefully there will be an update after.

Busy Medical Week update November 2nd 2009

Hey there all :) First let me tell you about a wonderful dinner that I hosted last night. My cousin Alison came into town for the weekend, and along with Mom & Dad I had the pleasure of her company last night as I got another chance to cook. We had a great time and I am extremely grateful for family and friends, and for the chance to once again show the world my cooking chops.

I have a busy week upcoming medically. I have a bunch of nuclear medicine scans at Cedars. This involves them injecting some sort of radiated element into my bloodstream and then at a later point scanning me to see how the cancer is progressing. I've had this before, but never quite to this extent. On Friday I have my big appointment with the Chief of Neuroendocrine Tumors at Cedars, Dr. Wollen, to see what he has to say about things. This coming Tuesday (tomorrow) I will be attending my first cancer support group at Ceders, which I am looking forward to. So all and all it should be a busy and fun filled week (not).

More to come on the non medical front later in the day.