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.

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.

Feeling Good update October 27 2009

I have had a very good few days with really no pain and no real issues. I am very grateful that I get a bit of a break from the constant drama of being sick. Amazing how much better one feels when one is not in pain.

Cooking Update October 24 2009

Had a great time last night at my folks house cooking for the family. Made a garlic and pepper pork loin with Yukon Gold potatoes, green beans, and grilled pears for dessert. Came out wonderful. I find cooking to be an incredible therapy, perhaps the best thing I can do for myself at the moment. It's very satisfying on many many levels for me. For those of you in the local area I will be doing a small plate party at Mom's house between now and the Holidays. More details once they are finalized.

Springsteen Dream update 2:51am October 22

Just awoke from an interesting dream in which Bruce Springsteen and I hung out for a while. He didn't really want to hang out. He tried to ditch me several times (the guy moved pretty fast) but I wouldn't let him out of my sight. He finally ditched me in a bar. He left me his shoe. It was a red Kenny sneaker. Someone at the bar put a tag on the shoe which said it was worth $109.95. He also left me a letter which said he had to go because he wanted to see his kids. Guess he'd been on tour and hadn't seen them in a while.

Strange and wonderful and a hell of a lot better dream then the ones I've been having as of late.

Where I'm at Update October 19 2009

I know a lot of people have contacted me over the past few days in various ways (phone, text, e-mail, etc.) asking what it is I want. This update is an attempt on my part to clarify the support and interactions I'm looking for, and more importantly, what I am not looking for.

I know many people have suggestions regarding treatment options, doctors, diets, books, etc. Please know that I am being proactive regarding my disease(s) and that as far as medical care is concerned, I am in very good hands. I am going to be seeing the absolute best in the field of my specific cancer. Just about any other doctor I would see would inevitably refer me to him anyway.

I know there are many alternative treatments out there (Chinese medicine, acupuncture, herbalists, etc.). I have had some bad experiences with these sorts of treatments in the past because I am dealing not with one but with multiple issues. The cancer center which I am connected with has connections with acupuncturists and if I choose to go that way I will follow their expert advice in terms of a referral.

I'm not interested in talking about my prognosis. It's bullshit and means nothing. Talking about it gives it respect it does not deserve.

I'm not interested in talking about the other challenges I have medically. I think about them far too much and it's better that I forget sometimes since there's not much I can do about them anyway.

Please don't ask me about my treatment. I would have to tell you an entire backstory for it to make sense and then I will be thinking about that and not focusing on you and our conversation. I promise to keep this blog and / or facebook updated with any info I want to share.

I enjoy food. I enjoy food both healthy and unhealthy. Aside from manging my crohn's disease and my sugar level, I'm going to eat what I want to. I'd love to cook something for you if you'd like.

When I am not in pain, I like to get out and do things. I've never been particularly physical, and unfortunately because of the issues I have with my body I am not going to start being physical now. I'd love to walk with you, but please don't ask me to go on a hike or even a fast walk. It's not happening.

I'd love to cook for you (I think I am a good cook), watch a ballgame with you, go to the beach, the movies, or even a bar. I'd love to go with you as you run your errands because simply running errands is not something I've been able to do for a while and I'd like to feel somewhat normal.

I want to be around people I love and who love me. I want to feel like I accomplished something on a daily basis, even if it's as simple as making a meal and cleaning up afterwards. I don't want to be scared. I want to plan my future and hopefully meet someone who I love and who loves me and have a meaningful relationship physical and otherwise.

Where to begin update October 16 2009

Since I haven't updated in a while, there is a lot to be said. A lot of you already know some or all of the details thanks to Mom's e-mailing, but here's the scoop from me:

It was recommended that I have a short course of radiation to deal with the extreme pain in my back due to the tumor. My particular cancer does not usually respond favorably to radiation and in addition it is not recommended for people with crohn's disease. After consultation with the radiation oncologist and my own oncologist, we decided to take a chance. On the one hand, the radiation did what it was supposed to: it took care of the extreme pain. But, it also blew my colon and bowels to hell. As a result, I had a crohn's flareup with the usual symptoms of pain, diarrhea, bloating, cramps, etc., but this time the problem was in my small bowel, which is not where it normally is. To make a long story short, I had to go into the hospital and spent two days in a lot of pain. I am home now and feeling much better. I have to go back on prednisone and insulin, which sucks. I am feeling much much better and that is what counts.

I am looking at a cancer prognosis that is poor. I'm not sure how much longer I have. No one, including me, believes it's my time to go, and all of us plan to fight to the end. I have had to look this reality in the face and it is the hardest thing I have ever had to do. As I write that I am starting to cry. I don't want to die and I don't believe I am ready to go yet. I believe I have a lot more to do, a lot more people to meet and life to live, and the prospect of that not happening is sobering and extremely frightening. I am lucky in that my overall functioning, blood count, etc. is normal and for the most part I am not in pain. I don't know how much that counts but hopefully feeling good and having good numbers is better then the reverse.

I really want to thank all of you for your unceasing support and championing of me. I love all of you and am so so grateful.

update October 4 2009

A lot has happened over the past few days and it has made things more complicated then they were last time I updated. So far as surgery goes, for the moment it's not going to happen. I'm not sure what will happen now, as far as any treatment is concerned. My oncologist threw a giant wrench into what I thought would be a definite treatment plan and right now I don't know what I am going to do.

I want to focus on non disease and tell you what a great time I had yesterday with my friend Josh. We went down to Newport Beach for the day and had a great time. He is a wonderful person and a great friend.

Surgery update October 1st 2009

I went to see the orthopedic surgeon Dr. Earl Brian at Cedars yesterday. I saw the MRI results and it was obvious that the cancer has caused significant damage to both my femurs, but particularly to my left femur. As a result I will have to have surgery immediately. The plan is to insert a rod into my femur (my left for sure; my right I think as well) to strengthen the bone and keep it from breaking. I will be going in to the hospital a few days before to make sure I am at my best before they operate. Afterwards I will be in the hospital for 4 to six days, followed by rehabilitation, followed by physical therapy.

All of the doctors have said the surgery will not be easy because I am a large (read fat) person and I have a lot of underlining health issues. To do nothing, however, is to risk me breaking both my legs, which would be even worse. So I will be having surgery.

I am very scared for many reasons. The idea of going under scares me because giving up control is extremely frightening. The whole thing seems very frightening. I want to stay as much as I can in the moment and deal with the future when it arrives.

better sleep update September 28 2009

As many of you know, I have been having an incredibly hard time sleeping lately. It began when I had my first panic attack on August 28 and has continued in one form or another up until recently. I had another major panic attack last Thursday. When I panic, my fear involves me going to sleep and never waking up, or getting sleep paralysis. This makes it very hard, if not impossible, for me to take the medication I need to take care of the problem.

Since my panic attack of last Thursday, I've been working with many people to resolve this, and I'm very happy to say I actually slept through the night, relatively speaking, last night. Today I am still quite tired so I've been napping on and off through the day. This is a major step for me as last week I could not relax myself enough to go to sleep. Even yesterday at this time I had to set two alarms and make my Mom promise to call me after a certain time to ensure I would wake up. Going without sleep is really crazy making and I was so tired that I was literally falling asleep on my feet. I am so glad that this problem seems to be resolved and I can give in to the feeling and relax.

Update September 26 2009

I've done three radiation treatments so far with another seven to go. The actual treatments are really nothing. I lie on a table similar to a cat scan table and the machine moves around me. It takes about five minutes or less. In fact, it probably takes me longer to get undressed and dressed before and afterwards. I have no pain at all. It's a million times better then chemotherapy.

I have been feeling fatigue, a small amount of nausea, and general discomfort afterwards. The main issue I've been having is panic attacks. I had another one Thursday, worse then the previous on I had back on August 28th. This one was bad enough that Mom had to come over at 6:30 in the morning and help "talk me down." I'd much rather be in physical pain then have these constant attacks. I am taking Xanax regularly, which has helped a lot. Sleep wise, things are still not normal. I am waking up five and six times a night and cannot go back to sleep. I am working with Josh Freedman, whom many of you know, and hopefully we can adjust things enough so that I am sleeping through the night. As you can see, it's a little after 5am on a Saturday and I'm awake.

I'm asking again for anyone who is interested to call, text or e-mail me and come by and spend some time with me. This has been really hard and I don't want to be by myself.

Update September 23rd 2009

So, today is the day the radiation begins. Yesterday they did what's known as core films, where they adjust the various components of the machine and take some pictures. The actual treatment will begin today. I'm a bit excited about this, actually. I want to see what it's like. The radiation machine is very Star Trek; it can move 360 degrees around my body. Everyone has been very nice and has gone out of their way to explain everything. If you're going to be sick, Cedars Sinai is not at all a bad place to recover / get treated.

My head has been all over the place. I've felt so tired. I got a reasonable night's sleep last night and I am still tired. Not sure what that is about. It's not the medication I'm taking. The last two days I've hardly taken anything for pain, and at the moment my pain level on a scale of one to ten is about a two. They have increased my patch, but that's not why I am tired.

Everything that can be done in regards to my upcoming treatment has been done. All of the support is in place. All I have to do now is show up.

A side note: some of you have been asking my Mom about coming to visit me. I am in a place now where I would like all the company I can get. The radiation treatments have a side effect of fatigue so I have to see how I feel, but other then that, if you want to come visit, please call or e-mail or text me and I'd love to see you.

Post radiation appointment update

All went well today. I have another appointment on Tuesday, depending on how the tests go I will have my first course of treatment at that time. I have a pain management appointment tomorrow and I'll keep you posted.

Facebook Update

This blog is now available through Facebook, so you can see any updates there.

Update September 17 2009

I went to the radiation oncologist over at Cedars yesterday. I will be beginning a course of radiation which will take 10 to 15 treatments to complete. I go in today to begin the planning process. I'll know a lot more about this afterwards, and I'll post any info here.

I have a meeting with the pain management folks there tomorrow morning. Again, any info will be posted here.

Not feeling too bad today, in terms of pain. I'm massively frustrated, angry, and sad about this whole situation. As you may know, it's the beginning of the Jewish High Holidays this weekend. You'll forgive me if I have no desire to praise God or sing his name right now. I'm fairly bitter. No, make that, I'm VERY FUCKING bitter. God and I have an understanding and I'm sure we'll work things out, but I'm none too pleased with how things are going.

Pre radiation oncology update 9-15-2009

I have an appointment with the radiation folks over at Cedars this afternoon. In addition, I hope to get a referral to a pain management specialist there as well. I will keep you posted.

Feeling much better today.

Update September 14 2009

Many of you already know that the MRI results I received were not the best. The tumor has grown, and the concern is that because it's affecting my hip bones, I could spontaneously fracture my hip. In addition to that, I have been in almost constant pain of some sort for several weeks. The pain gets so intense that I cannot move or stand. I have been living on pain meds and my life has become extremely limited.

I have an appointment scheduled with a radiation oncologist at Cedars on Wednesday. Radiation might help relieve some of the pain and also might kill off some of the cancer cells which are affecting my bones. The type of tumor I have normally does not respond to radiation, which is why the option wasn't used previously. My cancer is behaving more like a rectal cancer in that it's spreading rapidly and affecting the bones. The hope is that if it's behaving like a rectal cancer, it will respond like one, and the radiation will be useful.

Obviously there are side effects to this. I already know I am likely to lose my remaining hair and become quite tired. There is a concern that it might damage my colon. At this point, I am willing to do anything not to be in pain.

I am sad and frustrated. I can't do anything, even what I could do last week, because I am in overwhelming pain. I hope the pain will go away soon, as it has in the past.

Update Labor Day September 7 2009

I feel much much better, almost normal but not quite. The paralyzing anxiety and fear have for the most part passed and I am not afraid to sleep anymore. Still, something has changed inside of me and I am not sure if I will look at things the same way. Since I have been diagnosed I have really not done anything except deal with my illness, with some exceptions like going to New York or San Francisco. I have spent quite a bit of time alone, which, for me, wasn't that big of a deal because I don't mind spending time by myself for the most part. Since my panic attack of Friday August 28th I have felt a real need to be with people and a loneliness that I haven't really experienced before. It doesn't feel as comfortable to me sitting by myself. Don't misunderstand, I still like to be by myself, but it's not as satisfying as it once was. Also, I feel like I need to finally do something with my life besides dealing with my illness and it's side effects: pain, fatigue, etc. which is a fulltime job in itself. I'm not sure where to start. I can't realistically go back to work and even if I could there are no jobs. I'm not really into going back to school. I guess I want to do something to feel like I am living for something and not just doing a day to day existance thing. I don't know where to start. I am sure Mom, Dad (squared) or someone else will have ideas, but the problem with me is that if they come from an outside source (particularly Mom) it is highly unlikely I will do them. It has to come from within me and I'm not sure what to do. Anyway - I am feeling better, which I am very grateful for.

Update September 5 2009

Today is the first day I have felt anything close to normal in quite a while. I have been having panic attacks regularly for the past week and going to sleep, or simply relaxing for that matter, has been a real challenge. I slept amazing well last night, woke up one time and went back to sleep quickly. I don't have that anxious feeling in the pit of my stomach anymore. For those of you who have experienced panic attacks, you know what that feeling is like; anxiety and fear every waking moment, and anticipatory fear that at any moment a panic attack will reoccur. Today I don't have that feeling, and it is a blessing, a Godsend, to feel wonderfuly normal in my body and mind.

Update September 3rd 2009

Just a quick note to let you know what's happening. I'm still waiting to hear when the MRI will be scheduled. Most likely it will be a week from today, but if anything changes, I'll post it. As far as the panic attacks go, things got progressively better after I wrote that update. I saw a shrink yesterday and he prescribed some medication for me, and I think that will make things better. Today I saw my GI doctor who recommended I go on Imuran and taper the prednisone I'm on. I'll start this in the next few days.

As many of you know, Dad's 81st birthday was last Friday. Our family had a small dinner for him on Thursday and a larger surprise party for him Friday. Both were wonderful, although Friday was difficult due to the morning's events. Dad is an amazing man who continues to inspire me and who is a rock for me emotionally. I was glad to be there to celebrate with him.

anxiety update August 28

I just had a major panic attack. It lasted about 15 minutes. I get these once in a while, usually connected with a medication I took, such as prednisone or percocyt. This one was unique in that I didn't take anything recently that should cause one, although I did just take my daily dose of prednisone (10 mgs, small). I changed my fentynal patch yesterday and although I doubled the dose, I don't believe that was the cause. I am OK now, I think. I tried to take deep breaths and distract myself by watching television. For those of you who have never experienced a panic attack, it is quite a scary thing. Particularly, because rationally / intelectually I know nothing is wrong, but my body is in complete "fight or flight" mode. I hope that it has passed.

MRI Update

As I mentioned before, I was unable to do the previously scheduled MRI (three plus hours in a tube with a neck collar on is not something I wanted to do without anesthesia). The new date will be sometime next week, once the oncologist and Ceders-Sinai can get the paperwork worked out. I will keep you posted.

post treatment annoying update August 25 2009

I had my monthly shot of standostatin and my monthly infusion of xeloda today. No real side effects other then feeling queasy and a bit annoyed and on edge. The later has increased throughout the day so now, at 7:26 pm, I am quite irritated with everyone and everything. Fortunately, there are drugs, which I can use and go to sleep with. Tomorrow will be a better day I am sure.

don't get in the mud with a pig update

There is an old saying, "Never get in the mud with a pig. You'll get dirty, and the pig likes it."

Today I made an unfortunate choice of responding to an article about health care and insurance reform. I won't mention the name of the paper's website, but it, like many others, encourage reader feedback. Unfortunately, civil discourse is trumphed by personal attacks. I try to stay away from even reading feedback about this subject, because I get so mad when people try to argue we don't need any reform. Unfortunately, today I did read and respond to an article. I told of my own experience with health care and insurance and my belief that those who are against reform either have no personal experience with critial disease, or do not know anyone personally who has experienced a critical disease. With my personal experience, it is clear that reform is needed because the system is broken badly.

I should have expected a personal response. It came within 30 seconds of my post, and it made me angry. I responded in kind; personal, angry. The kind of response I try to avoid and the kind of response that makes reader feedback a pointless exercise.

I can't take back what I said because there is no 'unpublish' filter. I wish I hadn't responded that way. I wish I had not wrote in the heat of anger. I wrote the editor in charge of the site and asked my comment to be removed because it was written in anger. I hope it is removed, and I hope to remember to stay away from those types of blogs that make me respond emotionally rather then logically.

Vanishing Point update August 24 2009

I DVR'ed a movie called Vanishing Point last night. It was made in the early 70's and supposedly a very influential movie for Quintin Tarrantino. In fact, the second car chase scene in "Death Proof" was essentially a homage to this movie. It's a movie that has a lot written about it and I was very excited to see it. Here are my thoughts:

The movie begins with Kowalski, the main character (we never know his last name) driving full speed toward a police roadblock set up to stop him. He pulls off the road to think, then gets back in his car and begins driving towards the roadblock. As he passes another car going the other way, the movie stops, and cuts to several days before. Kowalski is to deliver a white Dodge Chalanger from Denver to San Francisco. Along the way he runs into the Highway Patrol, and while he could stop, he decides not to yield. In flashbacks we are told that Kowalski has been a motorcycle driver, a stock car racer, a cop who stops his partner from raping an informant, and that he's lost the love of his life when she died. As he encounters more and more policemen and continues to run, his story is picked up by a blind DJ who is listening in on police scanner frequencies. The DJ decides that Kowalski is "the last American hero, freed by speed" and encourages him to run from the cops. Eventually, Kowalski runs into a roadblock he cannot escape from: two bulldozers blocking the road. The movie catches up with itself at this point, and Kowalski runs full speed into them, explodes in a fireball, and dies.

As in a lot of movies post Easy Rider, the story is very simple but the photography is amazing. The movie contains the best car chase action sequences I've ever seen. There really isn't a story; the story is the chase. There is no real explanation as to why Kowalski makes choices; he simply chooses not to stop, and that is enough. We are invited to place our own values onto the chase. Is Kowalski, in fact, the "last American hero"? Or, is he simply fed up with life and is out for suicide by cop? There is no definite answer.

I enjoyed watching this movie. I fast forwarded through some of it, but I didn't lose anything by doing that as the car chase action is what is central to the film. The action sequences, and the soundtrack, are quite good. I'm not sure if it will be on cable again, but I would recommend it, particularly if you are a fan of Tarrantino such as myself.

Update August 22nd 2009

I'm a feeling much better as far as pain goes. I'm not sure why but since I have increased my pain meds I am sure that has at least something to do with it.

I was not able to get the MRI done last night. The tech informed me I was to be inside the tube for more then three hours and I couldn't deal with it. They also had problems fitting me with a neck collar, which, if you've ever had one, is extremely uncomfortable and constricting. I will need to reschedule for when they can put me out with an anesthetic, hopefully this coming week.

I am going out to breakfast with friends this morning, so more as things develop.

Oncologist update August 20th 2009

Here is the latest news after my visit to the oncologist today:

I will be getting an MRI tomorrow afternoon. It is possible that the tumor is pressing on the spine enough to be causing the intense pain I have been feeling the past few days. Depending on how bad the situation is, I might get targeted radiation to treat the tumor site and thus relieve the pain; or, if it's really bad, I might have to go into the hospital for a more intensive treatment plan.

To relieve my pain immediately, the doctor has increased my dosage of both long acting and short acting medications. This will relieve my pain, but it will also have side effects of being sleepy and getting constipated. Unfortunately there is no way around it. I would rather be sleepy and constipated then be in pain all the time, so that's is that.

The doctor is working with Novartis to see what can be done in terms of paying for the new medication, afinitor. I'll keep you posted on that score.

More news as I know it.

I love that new computer smell update 8-18-2009

I got a new computer yesterday, courtesy of my folks and my brother. My old one was six years old, practically Methuselah in terms of technology, and it was on its last legs. The new one is a sleek, sexy, powerful beast with a nice new Intel i7 chip in it and a very nice ATI graphics card. It's quite quick off the line and will allow me to run some programs I was not able to run before, so I am pleased.

Unfortunately, I am also in almost constant pain these days. Thank God for pain medications or I don't know what I would do. The side effect of being on pain killers is one, I am sleepwalking through life, and, two, I am constipated (opiates will do that to you). I'm not so concerned about the later, but the former is really annoying. This coming Thursday my folks and I will be meeting with my oncologist to see if there is anything that can be done to deal with the pain I am in.

I have been feeling extremely grateful despite the pain. I am so fortunate to have family, friends and others who care about me, and that is worth more then anything else. I am in physical pain, but I continue to be rich beyond measure.

Lapse in updating update August 15 2009

I know I haven't been updating regularly, and that there are substantial gaps in when I update. I have been dealing with various types of pain for a while, some of which make it difficult to sit down on my computer chair for anything longer then a minute. Fortunately, there may be a solution. I got a pillow from Relax The Back and it seems to be doing the job, or, at least I am less in pain. We'll see how it goes. A long term solution might be a new chair and new padding underneath.

It really sucks to be in pain. I don't have that much to say right now, except that I am so grateful for my family and friends.

Update August 3rd 2009

A quick update to let you all know what's going on:

I've been on the new medication, afinitor, for about two weeks, and so far so good. Lot's of fatigue and loss of appetite, but no stomach or bowel related side effects.

On the insurance front, I have an appointment tomorrow with an advocacy group which specializes in Medicare and long term disability. I'll let you know how it goes.

Went to see a great musical production over the weekend, "The Best is Yet to Come: A Tribute to Cy Colman" at the Rubicon Theater in Ventura. I was very surprised; I thought it would be a show with local talent or perhaps community college folks, but everyone in the cast was Broadway quality, and quite a few have won Tonys. I believe it's closed now, but it's a great show if you get a chance to see it.

Update July 28th 2009

Yes, I know it's been a while. And, I know you all have eagerly anticipated my next update. Well, you can stop anticipating now :)

I went on the new medication, brand name Afinitor, about a week ago. So far, so good. The most noticeable thing I've felt is a major reduction in my appetite, which is not really a bad thing. I'm sort of fatigued, but that comes and goes. Sometimes I feel like I'm getting sick, but that goes away also. I do have some noticeable soreness on the roof of my mouth, which is to be expected. Other then that, it seems all is good.

I am working to get a Social Security attorney to deal with my ongoing battle with that agency, as well as straighten out the mess my insurance is in. I have faith that the people who are working on my behalf are going to take care of it, which takes a great deal off of my mind.

A short story to illustrate how messed up things are in our insurance system: I take various pain medications to deal with the ongoing pain of cancer. Treating pain with narcotics is a standard medical practice, and since I've been diagnosed I've rarely had a problem getting what I need, either from the pharmacy or my insurer. Since I switched to the Medicare Part D insurance things are not going so smoothly. They point black refuse to pay for my prescribed pain medication, saying it's not medically necessary. In a phone call today explaining the denial, they actually suggested I try Tylenol. I didn't even bother explaining that I've been on daily doses of pain medication for a year and a half and am physically addicted to it. If I go off of it, I get sick. My oncologist has told me he will have to put me in the hospital for a while so I can be medically supervised while going off the drugs. They obviously do not care about my life, or anyone else's for that matter. It is, in my opinion, criminal to act as they have acted.

If you think this can't happen to you, wait. If you think it can't happen to someone you love, wait. It will. We need health care reform now.

All Around Update July 15 2009

I went in to have CT scans done last Thursday. The results were not what I was hoping for. Apparently the tumor has grown and there are new spots on my liver. At this point, my oncologist is recommending a new treatment modality. He wants me to go on a new drug called RADD 001 which has been recently approved for kidney cancer but which also shows a lot of promise with the type of cancer I have. It's a very expensive drug and I have to apply for assistance from the company which makes it, Novartus. Right now I'm going through the paperwork and as soon as I know anything, I'll let you know.

I also went to Social Security with my father yesterday to try to get some answers regarding the ridiculous claim that I owe them $13,000. They were extremely unhelpful and I came away more confused then ever before. I now have to contact all my employers and get my payroll and HR records sent to Social Security. I have my father helping me which is good. The entire experience is so frustrating.

CT Scans this morning 7/9/2009

Having CT scans done this AM at Cedars. Any info will be posted here as soon as I get it.

Bureaucracy frustration followup update June 30 2009

In my last post I wrote about my personal frustration with government and insurance bureaucracy, and offered some narrow suggestions as to how certain logjams could be broken. I just read an interesting story on one of the tech gossip sites regarding a new effort to put the US government's spending online for everyone to see.

While this particular effort is being done privately, the Obama administration is also trying to develop transparency regarding how the government spends, and attempting to put as much of that online as possible. Regardless of who does it, a private or public effort, it's going to be quite a job. According to this story, the government has over 100,000 databases, some of which are written in COBAL (an ancient computer programming language; difficult to use even when it was considered state of the art), or even worse, still in paper archives. Truly, this is the crux of the problem - information is not available freely to those who use it.

There has also been resistance to having information available online. Many agencies resist making information freely available because doing so makes them politically vulnerable. Also, there is no political will to follow through with a project of this magnitude because everyone is focused on the next four, or eight years.

We should be demanding that information flow freely from our government to us. The lack of free flowing information creates roadblocks which cost us money. Something as simple as how much and where the government spends its money should be available to everyone via an online update, at least in general terms. Of course, the other problem with this is that the details can be so overwhelming that people's eyes would get glassed over trying to figure it out. That effect is something that bureaucrats count on to ensure that no one looks closely enough to understand what's going on.

A wonderful thing about the information revolution is the development of tools for sharing and understanding vast quantities of information. The leveling of the playing field, or the flattening of the world, as author Thomas L. Friedman would describe it as, has made the world smaller, and the impact of the individual greater, then at any time in world history. It has revolutionized the way we work, buy, sell, and communicate. It's time that our government use the tools available and begin to open itself us to the masses.

Insurance news!

I'm very pleased to say I received written confirmation of my social security disability award in the mail today. Thus ends this part of the saga.

Again, thanks to all who wrote in support.

Health care and insurance has been in the news a lot recently. From my perspective, here is what should happen:

Insurance companies, the government agencies (medicare, social security, the state systems) all need to communicate with each other. I know this might be a bit Big Brother-ish, but it's important everyone is on the same page. If you are really sick, and have no help, contacting all the various parties involved in coverage is not an option.

There has to be a better way of recognizing who is in need of ongoing services. Again, this is a Big Brother type proposition, but it's hard to do it all on your own, and right now the patient is the one who has to initiate the claim. I suppose I would feel different about this if I didn't have a long term disability; but getting the information the various parties need to evaluate and make a decision regarding services is really difficult now.

The way prescription drug claims are handled and paid for should be made more efficient. Personally, I think the whole idea of written prescriptions is anachronistic. Everything should be handled paperless via the Internet. Doctors should be able to enter a prescription online which can then be made available to any pharmacy, via a real time online database. Once the patient goes in and fills the prescription, that is also recognized, along with any refills. If necessary, additional safeguards can be put in place for Schedule 2 controlled substances. This database would also be linked to the various insurance company plans so that they can pay for it. Ideally, if there was a co-pay, it could be automatically debited from a person's credit card or bank account. I think this would be more efficient, cost effective and generally easier for everyone.

I have more to say but I'm tired, so more tomorrow.

Insurance update 6-22-2009

Here is the latest:

I now have medicare. I was able to find out who is managing the prescription portion of my benefits and get everything straightened out.

According to the person I spoke to at Social Security, I also have qualified for disability. They claim I should get a check in July. I have not received any written confirmation of this so although I am pleased I'm taking it with a grain of salt.

To get this information, I had to speak with 3 government agencies, two insurance companies, and my COBRA administrator. It took about 4 and a half hours total call time. Mind you, I still have nothing in writing.

Could you do this? Sure. Could you take 4 1/2 hours out of your work day to do this? How much are your hours worth?

We need to fix this system so it's easier to navigate and there is more communication between various parties involved. I still have to contact all of my health care providers and notify them of the change so they can retroactively bill medicare. I don't understand why the various parties don't have one database so if there is a change, it's visible to all concerned.

Thanks to all who wrote and offered support.

Insurance frustrations update 6-20-2009

Before I go into detail about my insurance frustration, I want to let you know I'm feeling OK. No real side effects from this week's chemo other then fatigue.

As you know, I've been trying to get Social Security to pay me disability benefits. Part of those benefits include medicare. Having both of these things would make my life easier since the long term disability insurance I have now pays squat. Since I haven't worked in a year and a half, and I have a terminal disease, you would think getting disability benefits would be a fairly simple process, particularly since I have volumes of medical reports to back me up. But, no.

Part of the issue seems to be that at one point, I was on both SSI and disability because of asperger's. There seems to be a lot of confusion in the bureaucracy regarding which claim to follow up on. Never mind that I stopped taking SSI payments when I began working in 2003. It seems that a lot of what was started, never actually was stopped, even though I was working and didn't take any money or benefits from them.

Since I have COBRA insurance, my medical expenses for the most part have been taken care of. Thanks to Obama's subsidy, my COBRA insurance is affordable. However, when I receive medicare, that insurance will go away, as it should, and medicare will become my primary payor. At that time I will get a suplemental medi-gap insurance policy which will cover costs not covered by medicare, and I will pay premiums for that as I do with COBRA. The problem is, since Social Security says I have medicare from my other claim, the COBRA insurance has decided, in the last few weeks, that they will no longer cover my medical expenses. The problem is, I don't have medicare yet.

It seems that I cannot get a straight answer from anyone at Social Security regarding what I am qualified for. I was told I qualified for SSI but then told because of my long term disability insurance that I don't qualify. OK, that I understand. SSI is for people who have no resources and my insurance policy is a resource. Then I was told I was not considered disabled, but was told that decision was for the first claim, not the one I filed in February 2009. Then I was told I did qualify on the second claim and they were waiting on the paperwork. But, then I was told I owe them 13k in back payments on the first claim so they couldn't do anything until that was paid. (I don't have 13k, and I stopped taking payments when I started working. How in the hell they came up with that, I can't begin to guess.) So I am stuck in limbo because Social Security, my insurance company, and the COBRA administrator don't communicate.

The bottom line is this: I had to get fentynal patches today. It cost me $200. I don't have $200 but I need the patches for both pain management and because I'm now physically addicted to fentynal. If I don't wear a patch, I have withdrawal symptoms. So, there's no choice - I spent $200 and got them. I'm luckier then most in that I have family who will give me back $200, but they are struggling in this economy; they are also helping me with my rent because my insurance policy doesn't pay squat. See above.

We need to do something about this fucked up system. This can and will happen to you or someone you know. DON'T GET CANCER.

Post Chemo Update June 15th 2009

Glad to say that all seems OK after chemo today. I don't feel too bad right now. Last time I had sandostatin I immediately got the runs and was sick to my stomach all day. I didn't have any of that this time. I didn't really have any side effects at all, other some minor fatigue and some skin upset. We'll see how things go.

I downloaded an album from a South African band called Goldfish. If you ever have seen the commercial for the Kia Soul, you've heard the song. The album is just as good as the single. If you get a chance I would strongly recommend giving it a listen. It's very soul / electronica, sort of reminds me of James White and the Blacks (there's an obscure reference for you) or a more soulful electronic version of Kid Creole and the Coconuts (another obscure reference for you).

While I am on the subject of downloading songs, or content, based on commercials - I personally find I am more influenced by commercials then any other form of content, even radio. I have at least ten songs on my Ipod which I downloaded based on hearing them in commercials. In fact, I hardly ever listen to commercial radio anymore, and when I do it's usually sportstalk or NPR. Sort of sad being that I have been a major radio guy all my life, but I suppose that's what happens when you get to be my demographic. The interesting thing (and the background point) is that most of the songs I've downloaded are from car commercials, and I don't drive. So, while the actual commercial has failed in its purpose (to get me to buy a car), it has succeded in getting me to download content. This is something I've thought a lot about. Product placement, to me, is the most effective way of getting intelectual product noticed. This is why music distributed via video game soundtracks have become so effective (I'm not just saying that, there are numbers which back me up, but I don't have them to cite. Google it if you don't believe me).

Pre Chemo Update June 15th 2009

Time once again to go in and have my monthly dose of happiness :) I'm not sure if I am going to start the remicade today, but I'll be getting sandostatin and zometa for sure, and possibly avastin. I can't say I'm looking forward to it, but I'll go in and get it over with for the month.

I had an interesting dream last night. I had a dream I was in Havana, but it was more like Las Vegas, and not in a good way. There were cameras everywhere and I was never sure if the people I met were real people or people sent to watch me. I went online to look for something and realized I was being tracked. Then I realized I didn't really have a way home, and while everyone was nice, no one was really helping me. I can't really describe how disturbing the dream was; not really a nightmare, but very uncomfortable.

Post Apple Update part 2

To continue:

Saturday was a very beautiful day, the epitome of spring in New York. In the morning was a family brunch at the hotel with the bride, groom, and other family. It was great seeing and talking to everyone. All of us were tired, especially us west coast people, so after the brunch we went up to the room and rested for a while. In the afternoon David, Maggie and I headed down to Soho to the Rock & Roll Hall of Fame Annex where there was an exhibition of John Lennon memorabilia. I enjoyed it very much. David and Maggie seemed to enjoy it a bit more then I did; I guess I'm a bit jaded seeing some of the things on display. Several things impressed me: a signed guitar by the Sex Pistols (they never signed anything), the original lyrics to "Judy is a Punk" by the Ramones, and Bruce Springsteen's 1958 Chevy. Afterwards, we walked around Soho and ended up at an outdoor bar where we sat and talked for a while. Spending time with David and Maggie was the highlight of the day for me. At night Mom, Dad and I met Vicki and Jillian at a restaurant near their house. We had a very nice time and talked about many things. Dad's losing his hearing (or there was too much background noise for him to hear properly) so he occasionally would give his two cents regarding nothing we were talking about. It was pretty funny.

Sunday I headed down to Monroe Township in central New Jersey to see my Aunt Bobby and my cousin, Sari, along with her son Jessie. We had a great time sitting and talking. Jessie, who is autistic, has really grown and amazed me with how much more social he is. He's going to be Bar Mitzvahed soon and is turning into quite a man. It's always good to see my aunt and cousin. My only regret is that is was so short. By the time I got back into the city I was dead tired, so although there was light left and I could have walked around, I ended up going back to the hotel room and sleeping. Dad and I watched a bit of the Laker game but for all intents and purposes I was exhausted and ended up going to sleep before the game was over.

Monday after breakfast Mom and I walked over to Aunt Bobby's office, only a few doors down from the hotel ironically, and got a chance to see her for a little while. The visit was really more for my Mom and Aunt then for me so I just stayed out of the way. Afterwards we headed to JFK and then a flight home.

What an amazing trip. It was just too short. I love NYC so much, I can't wait to go back. The wedding was amazing and seeing friends and family was so great. Spending time with Mom, Dad, David and Maggie was great. I hope I have a chance to go back sooner then later.

Post Apple update June 9th 2009

I'm back in SoCal for less then 24 hours, but I wish I was back in NYC. The trip was a lot of fun, and far too short; but this simply gives me motivation to get back there again.

To begin at the beginning...

Our flight from LAX to JFK was great. Five hours gate to gate, smooth, quick; the best flight I've been on. It was raining when we got in so the weather was cool.  I hate heat and humidity so even though it was raining I was happy. We rushed in to Midtown to our hotel, the Mansfield (more about our hotel later), and then quickly down to the Lower East Side for a rehearsal dinner for the wedding. David and Maggie met us there and we met up with family and friends. I managed to stick it out almost until the end of the evening but ended up going back to the hotel a little early when my stomach started to act up a bit.

The following day, it poured. I went out in the rain in the morning looking for a particular bank branch where I wouldn't have to pay ATM fees. The concierge told me the branch was on 5th Ave. around 49th; the hotel was on 44th between 5th and 6th. So, off I trekked. I couldn't find it. I walked all the way up to 55th; no bank branch. I ended up going to another one and paid six bucks in ATM fees. It turns out the particular branch I wanted was on 6th, not 5th. Ugh.

Later on I went out again for a walk. From our hotel on 44th I walked west through Times Square, uptown on Broadway to 59th Street, back to 6th and back down to our hotel. Very recently, NYC has blocked off Broadway to traffic. Where cars used to be, they have set out hundreds of beach chairs. It was a weird sight in the rain. Times Square was packed with people and it was raining so hard it was really hard to look around and be a tourist. When I got back to the hotel, I was soaked. It was time for a short rest and then to get ready for Alison and Mario's wedding. 

The wedding was held in the Central Park boathouse, a very beautiful venue. Even though it continued to pour, it was quite beautiful with the rain pounding the lake. The ceremony was beautiful. I am not much of a crier but I admit I cried. I cried because I knew how much Alison really wanted this; I cried because Eddie would have so wanted to be there (he was; you could feel his presence in the room). It was wonderful. There was drinks, dinner and dancing afterwards. I sat with a mutual friend of my cousin's, Melissa, and we had a great time. I like weddings. People are really outgoing and looking to have a good time. The evening was great.

We stayed at the Mansfield Hotel. I would NOT tell any of my friends to stay there. The room was small, the size of a jail cell. There was no dresser to put my clothes in, just a small closet. The bathroom was really small. We ended up moving to a suite, but that was quite small too and so dark that I had to turn the lights on at 2 in the afternoon. Even though I didn't really like the room, the other amenities at the hotel were great. They had free breakfast in the morning, which was nice, and the location is a great one. The bottom line was that I was able to sleep well and comfortably, which in the end is all that matters. 

There is a lot more to say, but I'm getting tired of typing so I will continue this later. 

Off to the Apple update June 3 2009

I'm on a flight to the Big Apple tomorrow morning. It's been touch and go because I'm still dealing with a crohn's flareup which is both painful and embarrassing. I have to go up on prednisone in order to deal with it, which has its own side effects. I don't feel too bad at the moment, but when I do feel bad it's bad. Hopefully the prednisone will work and I can enjoy myself without worrying about being sick.

I plan to update the blog while I'm there and also post pictures if I take them. 

Update May 26 2009

It's been a while since last I updated...

I've been dealing with a flair up of crohn's disease which hit me fairly hard Saturday night. I'm feeling much better now and while this flair up sucked it was not the worse one I've had. Hopefully it has run its course and I will be back to normal, whatever that means.

Really not much is going on. Got a few doctors appointments this week and next and then it's on to the Big Apple, which I'm very much looking forward to, in case you couldn't tell :)

Hope all is well with you. 

Post Dodger Game Update May 19th 2009

Two posts in one day?!? The world must be coming to an end...

Went to the Dodger game, which they won. A very enjoyable game, for many reasons. Very entertaining, well played baseball, for one. A Dodger victory, for another. Entertaining people behind us, lawyers, apparently, from Toronto, from what I could surmise from their conversation as well as their Maple Leafs gear. Amazing how people can appear to be empathetic one second and amazingly self centered the next. They also spilled peanut shells all over my seat. Oh well. Great company in the form of my Dad. Probably the best time I've had at a ballgame; I was completely in the moment and relaxed. That I think says something about my overall state of mind.

Lawrence, if you're reading this, hope all is well. Sorry you couldn't make it; we'll do it again I'm sure. 

Time for an update update May 19th 2009

Hello all.

Physically, feeling very good. Still have some slight stomach pain which when it occurs is quite excruciating but fortunately goes away quickly. The GI doctor (gastrointerologist, for those of you not in the know) says this is normal and to expect it for a while. Still no answer on if/when I will start remicade. Probably not till I get back from the Big Apple, if then.

I am trying to resolve my Social Security disability situation and it is extremely frustrating. The good folks on the SSA phone line have no idea what they are doing and I am not at all confident that any information or status update they give me is in fact correct. Also, apparently I owe them some $13k for an overpayment; don't ask me how that happened. They sent me a waver form which is over 20 pages and which I have to return by June 12th. I only glanced at it; I just can't deal with that right now. Thank goodness I have a lawyer in the family. :)

Going to the Dodger game tonight. It's Jewish Community Night, which I imagine means they will only serve kosher Dodger dogs and Joe Torre and Tommy Lasorda will dovet at home plate. When anyone makes an error, Vin Scully will refer to it as "a farstinkener play". 

Expressing my gratitude Update May 14 2009

Woke up this morning feeling amazingly good. It's a beautiful day, I have Bob Marley playing, and it seems all is right with the world. I have been feeling like this more and more recently and it's certainly a welcome thing. I am not sure what to attribute this to but everything seems to be moving in the right direction. I'm gonna get out today and see what's what. Hope you are all feeling well!

Much gratitude and props to my HP for allowing me to wake up feeling good with a blank canvas on which to create the day ahead.

As always gratitude to amazing friends and family. 

General Update May 13 2009

Hello All :)

I went in to see my oncologist and have treatment yesterday. The treatment went well, although I got a bit sick from the sandostatin when I got home. It is an order of magnitude less then my previous treatments, however. I am feeling much better today, compared to previous treatments where it took me five to seven days to recover. 

David (my brother) came along to meet with the oncologist. The plan is to continue with the present regime of shots (standostatin) and pills (Xeloda) along with treatment for my bones (Zometa) and crohn's disease (Remicade, possibly; or something similar). When I get back from New York, I'll have another CAT scan and see where things are. If they are stable, we'll continue on this regime, and if not, there is a new drug recently approved (RADD-1) which the oncologist is very enthused about. Most likely I'll also go back on Avastin when I get back. Things are looking good and I am feeling very good.

Mother's Day May 10th 2009

Recently I cooked lunch for Mom. I consider myself to be a decent cook, but I don't think Mom realized I could cook, so it was quite a pleasant surprise for her. She encouraged me to cook more, to explore this part of my creative side. She asked me to make a Mother's Day brunch for her, which I did. On her request, here is the menu:

MOTHER'S DAY BRUNCH

MAY 10, 2009

CHEF BENJAMIN LEVINSON

APPITIZERS:

FRESH FRUIT

STRAWBERRIES, MELLONS

GRILLED PEACHES

VANILLIA BEAN PORT SAUCE

MAIN COURSES:

OLIVE OIL PANCAKES

CADBURY DARK CHOCOLATE

LEMON ZEST SYRUP

OMLETTES

ASSORTED CHEESES, MUSHROOMS, ROASTED GARLIC SALSA, BACON

VANILLA BEAN WHOLE ROASTED COFFEE

ORANGE JUICE, TOMATO JUICE

CHAMPAGNE

I am very happy with how things came out. Both Mom and Dad thought everything was delicious. Personally, I'm not sure what I'm impressed with most - that I made the meal as I envisioned it, or that I managed to clean everything up afterwards. Making this put me very much at the edge of my comfort zone; I've never cooked with port before and my pancake making skills need work. But I did it and I am so FREAKING proud of myself that I did!

Update May 5th 2009

I question if I should write this update, because perhaps I am going to reveal something about myself that I don't want other people to know. But, it's one of those cases where I am moved to the point where I have to write. I don't have a choice.

I was reading an adult video news blog today that said a particular female star has decided not to do porn anymore. The background is she signed up for one of these reality TV shows that features rehabilitation and apparently this one focuses on sex addiction. It doesn't really matter how this person came to her decision; she's made it. And from this adult video news blog was a link to her own blog site, where apparently she is chronicling her experiences beginning a 12 step program. I read it. And was speechless.

It is an amazingly powerful thing when another human being shares their intimacy with you, particularly when what they are sharing is their own character flaws. Having watched this particular female on film in her adult character, and now reading about her the real person, going through what will no doubt be a difficult process, it is both inspiring and very sad. Inspiring because she is allowing us, her audience, to see her for the first time. And very sad because, by watching her, I in my own way contributed to where she is now.

I know several people involved in the adult film industry. All of them have major issues. Having gotten to know them as people, I could never watch one of their films again. There needs to be a separation of reality in order for the fantasy of an adult film to work. When the performers become real people, that separation is broken, and, at least for me, it doesn't work anymore.

Most of you know I have intimacy issues. Some of you may know that I have used pornography obsessively on occasion. Intellectually, I know that in order for me to have a fulfilling emotional and sexual relationship, I have to address the issues behind this. My first response is to say, "it's complicated." Well, of course it is, anything like this is, or it wouldn't be so hard to change. It's the final piece of the puzzle for me; overcoming and moving through and past this will be one of the final steps in my process of becoming a truly whole human being.

I wish this person the best of luck, and I will be reading her blog and perhaps even sending her my own thoughts and wishes as she begins down the road of recovery. Certainly the experience of reading her story made me look deep into a place I'd much rather not look right now and be inspired enough to write my own character flaws down and share them.

If any of the above offends or shocks you, sorry. I doubt anyone who knows me doesn't realize I have a problem. If you didn't know, well, now you know.

Brief Update May 4th 2009

Just a small update to let you know what the latest news is...

I mentioned in one of my last posts I would be starting chemotherapy again this week. This has been modified slightly. I have started taking Xeloda, a pill form of chemotherapy, as of yesterday, in a very small dose. We will taper this up as things progress. As far as the Avastin goes, I won't start that until I get back from New York in June. Today, I will be seeing my GI doctor and it is likely I will start a medication called Remicade, which will be administered through an IV. As well, I'll be doing my ongoing doses of Zometa and Sandostatin, the former through IV and the other through an injection. I'm tapering down the steroids, and fortunately it looks like the wound I have is beginning to heal. That is the latest on the medical front; hopefully I didn't bore you all to death.

Overall, I'm feeling pretty good.

Three Updates in a row? update 4-29-2009

It has been rare that I have updated this blog on a regular basis lately. The stars and planets must be in a rare alignment, since I believe this is my third update in the space of a week. My advice to you is to enjoy it while you can; it may not occur again :)

I was watching Obama do his Town Hall thing earlier today, and while I think he's great, his style is still more of a candidate then a President... You have the job; you don't have to convince us to elect you.

I think the swine flu thing is completely hyped out of control. Remember, 36 thousand people die of the flu every year. That's a lot of people, just from your normal H1N1 virus. The media gets a hold of something and runs with it and people get panicked.

Glad to see the Red Sox dominate so early in the season, and nice to see them sweep the good ol' MFY's (motherfu%^&*g Yankees, as we Sox fans like to call them). The Yankees will be fine, though. It's a long season and a lot can happen. As long as they finish behind the Sox, it's all good.

The Dodgers are looking good too - Sox Dodger world series? That would be pretty cool.

Update April 28 2009

Thank you to everyone who commented on my last blog post :)

I tell the bad with the good, however; and today I am a bit irritated.

First, I found out my oncologist is recommending that I begin active chemotherapy next week. I was hoping that chemo would no longer be necessary after going up on the long acting dose of sandostatin; but apparently that is not the case. There are some complications that need to be resolved, however. I have an abscess in my groin which is slow healing, due to my diabetes and also taking a course of steroids. Chemo will slow the healing even more and the wound care specialist is recommending that I not have chemo until the wound has healed a bit more. I also will be going to New York in June for my cousin Alison's wedding. So, it is possible that I won't do chemo until I get back. The nurse will consult my oncologist and let me know.

As I mentioned in the above, I have an abscess which is taking its sweet time to heal. The nurse was concerned enough to bring in an wound care specialist to take a look at it. He made some recommendations, including swabbing it for a culture. I am at the point where its become a real pain in the ass (or groin, specifically) to deal with this thing and the daily requirement that it be cleaned and packed. I want this thing to heal up and because of extenuating circumstances it is taking longer to heal then expected. That put me in a bad mood. Physically, I'm feeling good: no pain, my blood sugar is good and getting lower, etc. It's just the little things that are beginning to annoy me once again.

Simple Pleasures Update 4/21/2009

Waking up in the morning pain free.
Knowing that I am in good hands regarding my medical treatment.
Feeling the love and support from my friends and family.
Having a kick ass, beautiful apartment, and a great on site manager who actually cares about me as a person.
Being able to watch my blood sugar drop daily and knowing I am on the right track to controlling it.
Knowing I am losing weight and eating well.
Making a two egg omelet (I got a microwave omelet maker which makes a simple process even easier).
Having a toaster that works.
Seeing a marine layer outside and knowing I won't have to use air conditioning.

I feel good. I am incredibly grateful.

update April 19 2009

This will be a mish mosh sort of update -

All went well at the GI doctor. Although I still have a little blood he is not concerned with that. I did unfortunately have an abscess on my groin which required very minor surgery, which I got Friday. I am very lucky to already have access to a home health care nurse who can clean and dress it. It is sensitive to touch but it doesn't really hurt anymore, and the nurse says it's healing nicely. On the crohn's front, it is most likely I will go on a new drug called remicade, which I understand is administered through an IV. Apparently, I will get this, along with whatever chemotherapy treatment and bone density treatment I get, through my IV port. When I know the details, I'll pass them along.

In general I'm feeling quite a bit better. The sandostatin doesn't seem to be affecting me at all, which I'm glad about; but to be honest I am on so many different drugs right now I couldn't tell you which one is causing what side effect, and they all have similar side effects. I found that I can manage the anxiety and irritability caused from the steroids by taking a small amount of xanex along with my morning dose. This makes me a bit tired but not tired enough not to function. I am monitoring my blood sugar and giving myself insulin 4 times a day, which can be a bit tedious. It is beginning to become routine, though, and I suspect I won't even think about it after a while. I have also changed my diet. I was eating quite a bit of sugar because the chemotherapy completely destroyed my appetite and I was basically encouraged to eat whatever I wanted. I'm currently not doing chemotherapy, and since my blood sugar is affected by the drugs I'm taking, I have had to switch to a diabetic way of eating. It's boring, but it's boring by my choice. I certainly could spice it up, but I find that my asperger rigidness is a real help here because I don't mind eating the same things every day. As I feel more comfortable, I am sure I will experiment more; but for now, boring works.

Lawrence came over last night to watch the Phillies - Padres game with me. It's the first time I've seen him in about two months and we had a nice time. I really have lost touch with many of my friends as I have gone through this rough patch and I need to make an effort to reconnect with them.

In closing I want to again say how thankful I am to my family, friends, and support people who have helped me so much since I got out of the hospital. I am an incredibly lucky person to have so many people who care, including those of you who read this blog.

Update April 16 2009

Things have been up and down for me since I got home from the hospital. On a positive note, I was able to finally go on the long acting dose of sandostatin, something I have not been able to do up until this point. The sandostatin is the recommended treatment for the neuroendocrine tumor but up until now I haven't been able to tolerate the side effects well enough to go from short acting shots to the more effective long acting. So far things are OK, but I am on so many different medications it's hard to tell what is doing what.

The steroids I am on are giving me a hard time. I want to eat constantly, which is a problem because I am also trying to control my blood sugar. I sweat a lot more as well and feel anxious. I'm taking xanex which helps some.

I have an appointment with the GI doctor today, so we'll see what he has to say about how things are going.

April 12 2009 Update

I had been feeling very sick on and off since I last updated the blog. Things took a significant turn for the worse about two weeks ago when I began to experience the worst stomach pain I've ever had. I also began to see blood in my stools. Long story short, I was admitted to the hospital a week ago Saturday. They put me on IV anti-biotics and did a colonoscopy as well, and it was determined that my chrons disease had flared up causing ulcerative bleeding. I came home from the hospital last Friday and I'm feeling much better. I am on a very strict medical regimen now including monitoring my blood sugar three times daily and administering insulin to myself as needed. I'm also on steroids and a bunch of other medication. This has been by far the most painful experience I've ever had to go through, including the cancer. I know this is a matter of fact update and I will try to write a more emotional update in the next few days. The important thing is that I am feeling much better.

Post Chemo Update March 23 2009

Chemo was not so bad. The anticipation of it is horrible, but doing it, once one is going through the motions, is not nearly as bad as the anticipation of doing it. It helped a lot that I sat next to someone who was new at chemo and who himself was nervous. I was able to offer him support and guidance and that was wonderful. He was an interesting person and I hope to meet him again. I meet very interesting people at chemo. Certainly they completely understand what I am going through in a way others do not. Some of them have been doing this regularly for years and have an immense amount of experience, which they offer to me when I ask for it. Not a whole lot of them have the type of cancer I have (in fact I have never met anyone with the specific type of cancer I have, at chemo at least), but as they all go through chemotherapy they know the process and pass on how to deal. It was good for me to be able to do that for someone else and it kept me out of myself and occupied during the time I was there.

Sunday Update March 22nd 2009

I know a lot of you were concerned over my last post expressing my depression. Sometimes it's better, sometimes it's the same, and sometimes it's worse. This is a test of faith and I am being tested in a way I never could have imagined. I won't pretend that sometimes I have no faith at all. I believe in a higher power but there are times I doubt or question. I try to keep my life simple and take pleasure where I can find it, and have gratitude for what I have, which is a hell of a lot. It's hard for me to see that this is worth something, that on the other side of this madness there will be goodness and a worthwhile life. I know that I have goodness in my life right now and that my life is worthwhile right now, but when I am in the middle of a question of faith things get confusing. Sometimes the pain is mental and sometimes it's physical. Certainly spiritually I am in a lot of pain because my faith is being tested. I want this madness to end in whatever way it can.

I know this is a very allegorical post (is that the correct way to describe it? Metaphoric, maybe?) but that's how I'm feeling and writing right now.

Blah Blah Blah 3-16-2009

Obviously I haven't felt much like writing lately. I believe, when last we spoke, I was about to go to City of Hope. They are reviewing my case and presenting it to a board of oncologists for their collective opinions. They are supposed to get back to me this week. I have lost a great deal of faith in the medical profession and oncologists in particular. I know I have a rare type of cancer which presents itself in a strange way, but I really get the sense that none of these schmucks knows what they are doing. I think they guess, they don't really know. And I have been feeling that it doesn't really matter anyway; it's going to kill me no matter what they do. Whatever. We'll see what happens.

I've been in quite a bit of pain as of late. The tumor began to act up early last week causing tremendous, throbbing pain. I would describe it as someone heating up a fork and sticking it up my ass. I am still in some pain, although it's calmed down some. I feel bitter and disillusioned, and I am depressed. I sleep a lot. My appetite has gone down and I have to make myself eat (I am sure that amazes some of you). I'm not a very happy camper, as you can see. I'm trying to keep my sense of humor, but it aint easy, that's for sure.

I feel selfish writing a post like this because I know there are many people with far worse issues then I have; people with no family and no friends to support them through whatever they are going through. I at least have amazing support from my family and friends. That means a lot. I try to be grateful for what I do have, which is quite a bit. The cancer and my head overwhelm me sometimes and it makes everything look bad, but I have to try and see it's not, and it could be far worse.

Update March 4th 2009

I'm not going to write a whole lot this update. First, I feel generally OK. The main side effect, as I've mentioned before, is extreme fatigue. That has gotten somewhat better but when it hits it is overwhelming. Other then that, I don't really feel too bad.

I am going to City of Hope tomorrow and I will post an update here if there is any news to report.

I am so incredibly lucky to have my family and my friends. For such a long time, I either didn't appreciate what I had or took it for granted. The older I get the more I realize that family is EVERYTHING. I wouldn't be here without my family. I also have incredible friends. Lately I have been connecting with more and more people from my past via Facebook. It's really opened up a whole new aspect of connections for me.

Am I asking too much? update February 25th 2009

I had a scheduled appointment to see my oncologist today at 9am. I have to actually see him face to face so he can see how I'm reacting to the new meds and chemo and tell me how I should increase the doses. I also need prescriptions from him which require an in person visit.

I got there at 8:45 for a 9am appointment. I knew I wouldn't be seen at 9 because the guy is never on time, ever. I hoped that maybe I'd be seen my 9:30.

At 9:30 there was no sign of him. I asked the front office if they knew his ETA. They didn't. I went back to wait some more.

At 9:45, I asked again what his ETA was. I was told he was on his way but two other patients were ahead of me. At this point, I got really frustrated. Each and every time I make an appointment to see this guy, I end up waiting an hour or more. I feel my time is valuable and by making an appointment I have some sort of agreement or contract with the doctor that he will be available to see me at a reasonable time.

So, I left. I still have to actually see him, but dammit, I'm not going to have my time wasted either.

I think it's time for me to find a new oncologist. Seriously.

Update February 24 2009

I feel much better emotionally today. I ended up going out Saturday and although it was a long night I had a good time.

I had my second series of chemo treatment yesterday, and so far so good. I'm starting to increase the dose of all my medications slowly. The dose I'm on now is really small so I know I will have to increase it in order for it to have an effect. Of course, the chance of me getting side effects goes up as I increase the dose.

This is a short update. I'll try to write again later today.

Update February 21st 2009

I'd prefer not to write this, but I have to get this onto paper, so to speak, or into the ether, and out of my head.

For the last two days, I've been in a really weird space emotionally. Physically, I feel fine, almost normal. After being on this chemo protocol for almost two weeks, I can honestly say this is the best I've felt. Aside from some very minor side effects such as skin irritation and some joint pain, I don't feel much different then when I was off chemo.

I've been in a good place emotionally, too. Now that I'm back on a chemo regimen that I can apparently handle OK, I'm not dreading the treatments or the after effects. I know that I'm on a small dose of everything and that it will be bumped up gradually. But for right now, everything is OK. That's lifted a great weight off my back and really cleared my head up, for the most part.

Starting yesterday, though, I woke up in a weird, uncomfortable place. I'm not really sure why. I don't really feel like seeing any of my friends or going out, even though I've had offers to go out last night and tonight. I feel like I want to shut out the world, not answer my phone, and just go away.

I'm trying to fight that urge to disappear. Usually, when I feel this way, there's an identifiable reason, such as being scared of the upcoming chemo treatment. That's not really an issue for me right now, so I'm not sure why I am feeling like this. It's one of those things I go through now and again, and at least writing about it gets it out of my head.