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.