Sometimes it's somethings

I apologize for the delay in posting but we needed some time to absorb yesterday's news. I have a 3.9 cm lesion in my left ilium (approximately 1.25 inches) that is "consistent" with metastasis. The more "worrisome" issue, in Dr. K's words, is the multiple metastases in my skull. The good news is there is no soft tissue mass outside of the skull. There are two areas where the bone has expanded a bit due to the mass inside, but it is not affecting my brain at this time. Unfortunately, the mets are in my frontal lobe, my parietal lobe, and somewhere near my sinus. (Bones of skull diagram: http://library.thinkquest.org/J0111100/graphics/skull1.JPG) These are not brain tumors, however. These are tumors of the bone and remain contained within the bone.

Right now there are potentially two options available that we are aware of: radiation and chemo. I have a consultation with a radiational oncologist on Tuesday morning to review my case. I'm not sure whether he will tell us if he thinks radiation is an option or if he merely wants to review my case and see me and then discuss the options with Dr. K. She seemed to indicate that she didn't think radiation was going to be an option because there are multiple mets and I believe radiation is usually limited to a certain sized tumor and a single tumor. We'll have to wait and see.

The other option is a heavier duty chemo, like Doxil or AIM, both of which are often used on LMS tumors and mets. I would not be able to have chemo if I were having radiation, although there was another pill-form chemo she mentioned that can be taken along with radiation. At this point, we are once again gathering information before we can move forward. She already mentioned that if the chemo doesn't work, there is currently a stage II clinical trial taking place that I would be a candidate for. I didn't know whether to take that as reassurance that we have options or that she doesn't believe the Doxil or AIM will work.

Yesterday we were simply overwhelmed. Today we've moved to the anger stage, especially since I mentioned the tenderness in my scalp to Dr. K at least once and mentioned the tenderness in my pelvic area to Dr. Healey's residents repeatedly. I don't want to play the blame game because what's done is done and we need to move forward from here, but when you place your faith in doctors who specialize in this type of cancer, it's very frustrating to discover that they have essentially dropped the ball. Should I have pressed the issue and insisted on a bone scan before now? Probably. I think part of it was because I trusted them and if they didn't react to my complaint, I thought it meant it wasn't an issue. The other part of it was likely because I didn't want to know if there was something else wrong. Would a bone scan earlier have made a difference? We'll never know. As I wrote, we need to move forward from here and do whatever we can to fight these mets, but their existence makes the entire situation more complicated and less positive.

I'll write more once we learn something. I know that Dr. K said she was going to have to get a group together to discuss the next step, but she didn't say who that would involve and when she was doing it. I expect to have a response by the end of next week at the latest. I believe they will concentrate on the skull mets first (or along with all the others), but I don't want to go too long without some sort of treatment or the lung mets are likely grow. It's always something.

Thank you to everyone who has been thinking about me and wondering what the outcome was. I wish I had better news for all of us. I plan to fight the good fight, but the evildoers have become more formidable. Let's hope that a tougher treatment will set them back.