A Very Mixed Bag

We made it to Portland and back in reasonable time and without barfing. This, in itself, its a victory. My weight was down quite a bit. No surprise there.

Dr. A was not overwhelmingly enthusiastic, but that really isn't his style, so that's fine. He said the trach looks fine. He would like to change it as it is a little grungy. I declined. When he occluded the trach, I was able to make a sound, which is an improvement. I also, for the first time since it went in, was able to breathe through my nose. I can even smell if the smell is strong. It's a start.

When he put the trach in, there was some "funky looking tissue" in front of my trachea. He took that out and sent it off to path. Yes. Cancer there too. The upside is that it doesn't really change the protocol. Likely will just extend the radiation field.

He looked at the spot in my mouth that we and the oncologists had assumed was another tumor. He says it looks more like radiation necropsy. Not sure that's better, but it is.

He doesn't want to go forward with the third chemo without some scans to verify that it is doing what it should. He said they hate to stop chemo as then you just give the survivors time to come back, but there is a limit to how much your body can stand, of course. There are lots of other drugs to try if these are not as effective, although we don't know one way or another at this point. He is calling the chemo oncologist to discuss. So we'll see if there is round three on Monday or not.

My acupuncturist and massage therapist are miracle workers. After one little hurk on Monday night, there has been no more puking and no more nausea. I can't begin to thank them enough!!! It is easier to process when you don't feel like complete crap.

And I was thankful for the stability as we came home to some bad news.

I taught with Sara at Sun Valley for several years. She taught CLS and I had several of her students. She would push into my room and we would teach together. Often I was bad cop to her good cop, but we worked very well together.

I had one particular student of hers for multiple years. He had Down's Syndrome. Every morning he would tell me, "Jensen beautiful!" How can you have a bad day after that? Unfortunately he was also fond of whispering the F word in people's ears, but you can't have everything.

One day he was acting up, crawling under the desk, making noises, and generally being inappropriate. While the kids didn't encourage him, they saw his behavior as okay because he is "special." She gave them a speech that day I will never forget. What happens when he goes on a date? Is that behavior okay? What about a job interview? What about on the bus or at a hospital?  I am paraphrasing, but it was amazing. At that point, they recognized for the first time that he was going to grow up, just like them, and experience things they were going to experience and that they weren't doing him any favors by treating him like a pet or a mascot.

The entire dynamic shifted after that. They expected him to behave appropriately. They didn't tattle, but they didn't laugh when he whispered in their ears. When they learned that his eyesight was horrible but he refused to wear his glasses, they set out, on their own, on a campaign. Every kid wore some kind of glasses. Everyday. And they tried their best. While it did not succeed, they recognized the power of working together.

Sara forever changed the way I worked with children with disabilities, particularly those with severe disabilities.

She is my age.

She has a nine year old daughter, just like me.

She had a terrible headache and went to the ER. They found a brain tumor. They sent her to Davis and the tumor was removed. They believe they got it all.

Pathology came back. Malignant and fast growing. Damn it.

She has been air lifted back to a facility in Reno where she will have six weeks of radiation and some sort of chemo pill.

I cried and cried.

I am so sick of cancer hurting so many people.

So, if you would, add Sara to your thoughts and prayers. I'm sure six weeks of brain radiation won't be a walk in the park. Hopefully they can find her a purple wig. I hope she knows I love her.

Hoping for better news to share tomorrow. It is Karina's birthday tomorrow after all, no labor involved:)

Until tomorrow-

PS- A very happy birthday to Karissa's sister Haley today, as well as Jessie Ellison.