Yesterday was a tough day for me. Why? No real clue. Just one of those days where the tears are just on the surface and yet no real significant news. Hoping for a better day today.

Rambling follows... you may want to step away from this blog.

We are still in the "ready, set... wait" mode of Kyle's treatment. He met with the oncologist yesterday. More bloodwork, Full body MRI today. However the radiologist and oncologist have not yet come to terms with what is the best treatment protocol at this point.

The radiologist wants a lumbar puncture done, the oncologist is concerned about altering the intracranial pressure by doing an LP (spinal tap). We THINK they are at least in agreement that they want to do both chemotherapy and radiation therapy. It is just a helpless feeling when there is just nothing yet being done. Yes, they did get the intracranial pressure down while he was in the hospital and hopefully the shunt they inserted is working effectively. Just ready to move on a bit.

I've talked about how upbeat Kyle has been. This weekend I could hear more of an edge in his voice and I could tell he was irritable. Mom starts worrying, is this just irritability related to the stress of the situation, or, is this indicative of his intracranial pressure building up again. I don't say anything to him about it, but it is something I still am concerned about.

He was being worried about getting the hospital bills paid for (which he had not yet received) and anxious to get back to work, hoping he would feel well enough to return to work soon. Before this incident, Kyle succombed to the usual mindset of so many 21 year olds. He was invincible. So, no, he never signed up for his medical benefits. When he went into the hospital, the social workers immediately went to work on getting him on social security disability and medicaid. His employers have signed him up for a special benefit to help with hospital expenses.

But, he worries about getting the hospital bill paid. I finally had to help him be realistic. I pointed out that even with insurance, almost nobody would be able to handle the expense of 10 days in intensive care and neurosurgery. That he had to let that go and use the resources available to him.

Yesterday I had to finally help him to see the reality that he will not be working for awhile. He's just been focused on when he feels well enough to work and tends to push himself, more than allowed. I had to point out that the doctors have told him he cannot even exercise right now. It's ok to not be at work and he can let himself use his time to do his artwork that he loves. I finally had to ask him if he were the employer, would he let someone in his condition work for him right now. He said no.

I've been dreading that conversation. It is so difficult to balance when to let him have his rose-colored glasses and when to point out reality. He actually seemed calmer after our discussion, so I guess I timed it right. Maybe he can let go of that pressure to return to work a bit. BTW, he doesn't have some high-powered job. He works for a Walgreens photodepartment for basically minimum wage in his area. But, he is well loved there and I'm sure it is difficult to be away from work.

I'm hoping for a better day today. I just feel helpless in this situation and I suppose knowing that we just don't know how things are going to turn out sometimes gets to me. I do expect some rocky roads here and there. I'm trying to hold onto hope. It would help if the darn docs would be doing SOMETHING besides planning. Maybe my anxiety would be less.

Oh, and Clay, a note in your blog would be just a tad bit reassuring as well. I have a need to know you are alive and well too.