Would You?

So if you had an incurable cancer and knew you were going to die in the next year, would you try unproven medications? By unproven I mean not yet FDA approved for use on humans so there is no way of knowing it wouldn't kill you sooner?

A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.

"The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?

“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”

For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.

Reading about terminal cancer

This is not my favorite topic to read about and sometimes I find it very difficult to deal with. I stumbled across this article by Melinda Welsh on how she is dying in a yearish. She has terminal cancer and has been told it will be a year or so, give or take. She is still in treatment and has hopes of a longer time but knows it will be the end, in a yearish.

A yearish is how she translated what her doctors have told her. Its a vague time frame but it has a finality to it as well.

I am also reading a book, As Close As Sisters, about a woman with thyroid cancer, who had cancer cells drift into her lungs after treatment. She is nearing the end as well. I like the way it was worded 'cancer cells drifted' but not the resulting prognosis.

I have to be in the right mood to read about terminal cancer. As cancer metastases are the worst thing any cancer patient wants to hear about from their doctor. I never used to be able to read about cancer deaths. I blogged about books hitting too close to home last week.

The copy of "As Close As Sisters" I have is from the library. I took it out three weeks and two days ago and it is now overdue. It has taken me that long to open it up. I started it at the end of last week and put it down. I opened it again at the gym yesterday and read while on the bike and stepper. I get a solid hour of reading three times a week while at the gym.

I hope to get through it this week but if it gets too much for me, I will put it down for a few days.

Reading about terminal cancer makes me face the reality of what my medical history could become. It makes me face my fears on some levels. Will this make me handle a nasty diagnosis better if it ever happened to me? I don't know. But I'll give it a try.

Chronic can be a good thing

When I was in cancer treatment, I was told cancer was being treated as a chronic illness instead of a terminal one. We all liked that. It was nice knowing that they didn't expect you to die anytime soon.

Living with a terminal disease is not fun. Your life is counted in weeks and months instead of decades and generations. But living with a chronic disease is not that great either.

We all know we came with an expiration date - life is a terminal occurrence. We are all going to die some day. But with a chronic disease, life just becomes a little (or a lot) less fun.

I have a couple of those chronic conditions that make life less fun. And that's how life goes for me. If you want to learn more about living with chronic ailments, this is a wonderful essay on life with chronic ailments.

And how you wake up each day with hope to be free of pain and and maybe there will be a cure. 

Life with chronic ailments is better than with a terminal one but how much is up for discussion.