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Sunday, June 28, 2020

Fixin' to Start

Heart tests and lung biopsy tomorrow. I hope my lung doesn't pop or I end up in ICU like a lady I talked to once. Fourth lung biopsy in a year and a half. Terrified.

Wednesday, June 24, 2020

Study Found for Me

About to start a huge challenge in clinical trials. It won't get rid of the cancer. At best it might slow the growth. No one knows.

I'm one of 3-6 people to take a higher dose of a drug that has never been used on humans before this study. The experiment is designed to figure out the highest dose tolerable. It could destroy my eyes, muscles and liver just to name some possible effects.

I will also have the regular side effects of normal chemo like diarrhea, rash, nausea, fatigue, reduced pumping function of the heart, and many more. It's terrifying. The name of the test drug is TN0155. It all comes with more biopsies of my lungs and many other tests.

I'll do what I did last time and carry my inspiration letter with me to read before the start of each treatment. The first paragraph makes me feel better.

There's no more hope for getting rid of the cancer. From here on out it's just trying to extend the time between now and the end.

I hate this.

Friday, June 12, 2020

Sarah Cannon 1st Visit

I saw the doctor at Sarah Cannon Cancer Center. He put me on palliative care. He said he won't put me in any trials that require biopsies or surgeries and that his focus will be on "quality of life". I asked him to try and help with the fatigue, because I've never had this much trouble getting around. I have to drive to my own mailbox across the yard.

Saturday, June 6, 2020

CT Scan Results

My scan results this week were not good again. Most of the nodules grew. There are also some new ones around the outside of my lungs. Sarah Cannon Research Center has opened up their clinical trials again. So my doctor has stopped the Lonsurf chemo pills and has referred me back to Sarah Cannon.

I go next week for my intake and to see if there is a study appropriate for me. Hopefully there will be. I'm terrified as usual with the experimental drugs. Always afraid I'm going to die.

Wednesday, June 3, 2020

On Protests and Violence

I have seen many protests throughout my life dating back to my childhood in the 1960s. There has always been controversy regarding the escalation from peaceful protesting to yelling and sometimes to violence and rioting.

With degrees in clinical psychology and sociology I have been trained to look at situations from all angles, effectively putting on the shoes of different people and then seeing it from their point of view.

I have always believed that people should be listened to. They should be given the opportunity to be heard. Having a voice makes one feel worthy and valued. Not being heard makes one feel demeaned.

I still don't know what the true answer is. I don't like violence. I don't want people to be hurt. And when stores are broken and looted people lose jobs and income, and the community becomes broken even more. Whether it's necessary for things to become that way in order for people to be heard is not for me to say. I only know that it happens. Sometimes it works and sometimes it doesn't.

On a personal note I have experienced my own voice not being heard. I have been told to stay silent because the other party did not want to hear what I had to say. I have been told that if I do force my voice that law would become involved, thereby being silenced through force and intimidation. I know that made me feel demeaned, like others saw me as not having worth.

This is a bad tactic which will result in no resolution for either side. We know that because when black and brown people are told to stay silent or law will become involved, then the problem gets worse. Issues are not addressed. And oppression becomes more prevalent.

I have not led a privileged life as a white person. Most of my existence has been at the mercy of family or friends who have allowed me a place to stay in return for whatever work I can do for them - most notably cooking and cleaning the house and other sorts of chores. I have worked since my teens to scrounge up small paychecks and do the best I could. Until recently I have never had reliable transportation. And I have always had to worry where my meals were coming from next week. Until 3 years ago I had no place to call my own, that I could do with what I want. It's meager, but finally it's mine.

I am fortunate that, since I have been adult, I have been able to walk out into public and not be automatically suspected of something or treated badly. I experienced it as a child and teenager, but there was an end to it after high school. No one should have to fear just leaving their home and being out in the community.

To start there has to be a dialogue. This frustration of not being given a voice, not being heard and listened to, will get us nowhere. As we have seen when law enforcement and national guard lay down their gear and walk with the protesters and speak with the protesters one-on-one, there begins to be diffusion of the tensions.

One side blocking up will always result in the other side bracing itself or pushing even harder. So let's listen to one another. Let's get to know each other on a personal basis. I let you say what you have to say, and you let me say what I have to say, and let's work things out. Let's do this on a one-on-one personal basis and on a large-scale group basis. Let's acknowledge that there are problems, what those problems are and the options for resolving them.

Shutting each other out won't work. Let's make there be no need for controversy regarding whether peaceful protesting should become more intense. Let's do it by opening the door, let the voices be heard, and make the necessary changes to resolve the issue. Because there IS an issue. Black Lives Matter didn't just evolve out of nothing and nowhere. It happened for a reason. And we know what the problem is. So now let's get down to making the changes that will resolve it.

Tuesday, June 2, 2020

CT Scan

I went for another ct scan today. Had to go to sleep as soon as I got home. I didn't remember how bad chemo is compared to immunotherapy. I'm back to like I was in 2015-2017. Can't cook anymore. My sister brings food or I eat sandwiches or cans of pork and beans. I can hardly walk or stay awake. It's a useless feeling. Nausea and heaving all the time. Will this ever end?