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.