Christmas has been delayed by a cancer called Leiomyosarcoma

My uncle had been diagnosed with Leiomyosarcoma in the lungs a few weeks ago. He had no job and lived very modestly in a self-built house out in the woods, so I'm positive he put testing off. And I can't blame him after my own experiences with Interstitial Cystitis. What if you get that crazy doctor that wants to stuff tubes and cameras up every orifice with no GA? Not to mention the cost.

He was at my grandmother's funeral. He had oxygen, but was talking and walking. He looked pale, but he seemed okay.

We couldn't get any information out of him or his wife because they just couldn't understand the doctors. They have no internet, no ability to research, and I'm sure they couldn't keep up with the jargon. It took two weeks for my mom to get the name of the cancer so I could start the research -- research which she was was extremely good, but not useful as he is now dying.

I woke up today with no one home. This isn't unusual. I needed to find my tax return papers to set up some things for this blog so I called her and that's when she told me the news that one of his lungs of collapsed and the doctors said it was too late to move him anywhere.

We were trying to get him to Houston since it has one of the best cancer treatment facilities in the U.S.

My mom and stepfather took off to Florida to see what is going on. We can't get any information from the family because they don't know. They just said the doctor said they "couldn't move him now." Not that he was dying, how severe it was, or even what stage its in. I know it can be surgically removed, but evidently at this point its likely too late. If we had known sooner then this would be no big deal.. but its a rare cancer, I'm sure he suspected nothing until the pain, and then he held it off until it got bad.

If it is end stage I will advocate for palliative care AT HIS HOUSE even if I have to scream at the family. There's no point for painful tests for someone at end stage cancer.

Yet as stated above we can't understand the family members because they can't understand the doctors. Originally I was planning on going to Florida with them (with pain meds, heating pads, and possibly an army tank to beat my IC down long enough for such a trip) so I could be there and be the patient advocate since I'm a "professional" patient. I had no idea it was this bad. He was WALKING a few weeks ago.

If he does pass, then I can at least be thankful that it was a very fast descent. If he survives this and it truly is the end then I'm contacting hospice services myself if I have to in order to get him back home and in comfort.

This was the "fun" uncle. The one you always loved. I didn't cry for my grandmother except at the funeral because we knew she was dying for a long time. But I'm crying now because my uncle is young and always took yearly trips to come see us. Our visits to his house were the funnest times of my life because he lived near one of the most beautiful beaches in Florida. We also had fun Sasquatch hunts and a fresh spring creek with crystal clear, ice cold, fresh water that we could actually drink straight from.

Our presents will remain under the tree until the family returns. I will fight 1. to have the cancer treated at only the best center in the U.S. or 2. Be sure to get him the best hospice care available and to insure he will not be in pain.

He worked at a chemical plant for a few years.. this isn't from smoking. If he does pass I know where I'm aiming my weapons next.