I'm still here ...

Sometimes it seems like I can almost forget about what is going on. Usually when there is a lull in the tests and shots and scans and ... all the stuff we have to keep doing. Now I say almost because it never really is out of your mind. It's just that the day to day thoughts of life take a front seat and the cancer takes a nap in the trunk. But I can always hear him snoring, and sometimes, like my dad, he is snoring pretty loud. It has been like that for a while but now Mr. Cancer is wide awake and in the passenger seat again. I guess the important thing is that I never let him drive.

We are now back in the routine of scheduling doctors appointments, CT scans, blood tests and of course my once a month shot of Sandostatin. And we have the whole Liver Transplant Evaluation looming in the horizon. On Monday I went to the Medical Center lab and gave them some blood so they could test and make sure my kidneys were handling the scans. We have to check this each time they put me into one of those donut machines which is what I did yesterday. It wasn't too bad though. It is always quick and relatively painless. I picked up a copy of the disk and the report this morning so I can take it to my next appointment at UCLA. The results were nothing bad but nothing good. The tumors are still there, surprise surprise. They said it didn't look like they were any bigger so I guess that's a good thing. I just wish they were smaller!

Last Wednesday, as Jenna said, we went to our first appointment for the Liver Evaluation. We met with an Oncologist we hadn't met before. He works closely with my Oncologist, Dr. Hecht, but he is more involved with the Transplant team. He, like many others, told us we would be low on the list for a liver because it is functioning so well. I am concerned about this for two reasons.

First, I am afraid that the presence of so many tumors in my liver will increase the chances of the cancer spreading to somewhere else in my body. He said there was no evidence to suggest this was the case. He said if the cancer was going to spread it probably would have already. Well I think that's a bunch of shit. I don't like "probablies" when we are talking about my life. And if there is no evidence to suggest it would spread there is also no evidence to suggest it wont.

My second problem with leaving my liver in until it fails is that my liver is already swollen so large that I am having a lot of pain. I don't feel the pain with the medication (120mg of morphine/day) but I am not supposed to drive while taking these pills. So what they are telling me is that I can't drive until I get a new liver which could be quite some time. Now, of course, I am driving myself around because taking the medication doesn't make me feel loopy or anything like that. I don't drive when Jonathan or Jenna are in the car though. So that sucks for Jenna who has to drive everywhere when we are going someplace. Also, if I got pulled over and for some reason they found out I was taking morphine, I would get a DUI. That sucks!

I will be bringing up these concerns with all of the people I have to meet with next week. Of course I won't use the word 'shit'. Hopefully when they all get together at the end they will at least discuss it. I don't foresee any changes but we can always hope.

As for me, I am into into a rather nice routine around here. I had gotten in the bad habit of staying up late at night working on this or that or watching movies. Then the next day I would sleep in and be exhausted the rest of the day. That wasn't working for me. My body was way out of whack!

Now I go to bed at a reasonable time, say 9:30 to 10:30. Every once in awhile I will say up to 11 or 12 (much better then the 1, 2 or even 3 in the morning as before). So now I get up with Jenna and I am able to help with Jonathan in the mornings. I'm sure she appreciates that! Then I am showered and ready to start my day by 8:30 or so.

I take it nice and slow though. I begin my day at Starbucks. I sit outside, the sun shining nice and warm. I read a book and sip my coffee and listen to my iPod. Currently I am making my way through a book called "The Journey Through Cancer: Healing and Transforming the Whole Person" by Jeremy Geffen. It is pretty good. It mainly discusses the journey through cancer in relation to conventional diagnosis, staging, and treatment and focuses on physical, mental, emotional, and spiritual well-being. I have almost finished this book and will soon be moving on to another titled "Do It Yourself, The Definitive Guide To Surgically Removing Tumors". It seems to be a nice way to start the day. The coffee mixed with sunshine gives me a good amount of energy for the rest of the day.

On Tuesdays I go to a support group for people with metastatic cancer. That basically means people with cancer that has spread to other areas of the body. It's an hour and a half meeting but it always seems to fly by. I've really enjoyed going.

My afternoons are usually spent at the computer. I really enjoy working on projects for LA Digital when I have them. Right now I am working on editing a video. It is an interesting subject and relevant to what I am going through so that makes it even more fun. It's a video about watching out for swindlers when it comes to alternative medicines. If I don't have anything else to do that day (like my chores) I am usually learning about 3d animation or photoshop or keeping up on the technical side of things in relation to my job. I really don't want to go back to work and be behind on the technology. It seems like there is always something new coming out.

The afternoons usually go by fairly quickly and before you know it Jenna is home. We spend a couple of hours together with Jonathan and then, when he goes to bed, we have some time alone to catch up on the days events. Sleep. Repeat.