Update clinical trial cycle 4, week 3
This update is a little late. I’m went straight from San Diego Comic-Con to Orlando LeakyCon. My serious need to live while I can calls for forgoing rest. San Diego Comic-Con is quite the most fun there is to be had on planet Earth. I have had the most hectic and enjoyable four days of my life. Other than taking my drugs at regular intervals, I never gave stage IV a thought. The way I see it is that the cell changes that are happening or not happening are independent of my thinking or not thinking about it. Leaky-Con is a lot smaller but hectic because you have to keep up with the chaos. It helps to have a really high tolerance for disorganization and mine has pretty much reached the limit. It is easily the most helter-skelter con I have ever been to and probably the last one I can endure the unpredictable disorder. My uncertain health gives me enough of that without having to deal with LeakyLines that go nowhere.
The good news is no new pain or symptoms from the disease but the toxic side effects are getting worse. The diarrhea is controlled by the tincture of opium which is the good news. The bad news is that the taste makes me gag. It is quite revolting. I have to measure .6 ml of the drug into a syringe (a process my daughter affectionately calls “shooting up”) and then squirt it into my mouth. I have to do this every 4 – 5 hours. I cannot miss a dose. I have to eat 30 – 90 minutes after each dose and at no other time. The new side effect from MLN028 is that the nausea I had before has escalated to vomiting. It is abrupt and I have little warning. The oncologist prescribed a very powerful (read expensive) drug for this that works remarkably well. Thank goodness for health insurance. It costs over $1500 for a 15-day supply. Of course, it also has its very own side effect of making me very sleepy. Driving after taking it would be very bad. As it is, I found myself nodding off during some interesting panels.
Now onto my thought for the week.
We are only given what we can bear and other stupid things people say.
We are always so astounded that people can be so unfeeling. Why would someone respond to our diagnosis of a life-limiting illness by saying that we are only give what we can bear? With one startling sentence they have trivialized the pain that we cannot minimize. We have been told that our lives are going to be ripped from us in pain and nausea and that is the best that you can do?
Being told that your life is about to end is one of the most devastating events people will ever experience. No matter how shocking and painful it is for those around us, their grief is no match for our own. We grieve for a life cut short, the future we planned, the milestones we will miss. We sob in the shower and wake up at night crying. We feel completely unhinged and time takes on a new meaning. We beg our doctors to inflict any amount of pain and discomfort to give us another month, or year if we are very lucky. We seek solace in drugs to reduce our anxiety and some turn to prayer or television or other activities that distract us from the inevitable end that is already in sight. The full stop that adds the final punctuation to our lives has already been written. And for comfort we get a trite saying?
Sometimes the saying comes with a God thrown in somewhere and this provides a partial explanation for the origin of the saying. The origin is probably Biblical but taken out of context. The Bible contains passages that, when read in context, tell us that there is no temptation that is more than we can bear. It is somewhat of a leap to go from temptation to cancer, but making leaps in inference is something humans are really good at.
So why do people do people actually say things that are clearly inconsiderate and even unkind? I’m sure there are a number of reasons. I will discuss a few.
1. People tend to repeat sayings they have heard. It is part of our social transmission of information. Just as we learn to fear things such as snakes and spiders by observing the fear in others, we learn to say and do what others do in situations. Repeating things saves us from thinking of something new to say. There is a feeling that if everyone says it, it must be true.
2. Repeating sayings like this is an example of making an attribution error. An attribution error occurs when people incorrectly attribute a reason for a behavior or situation. In this case, it may be due to the defensive attribution hypothesis, the belief that cancer could not happen to them because they do not fit the profile, they are not strong enough to bear it. It seems such a stretch that anyone would think that only those who are uniquely qualified to be victims of cancer, can suffer through it, but that is what they have just said. People might also be using an explanatory attribution in which they are making up an explanation for events around them that they don’t fully understand to protect their self –esteem.
3. Protecting self-esteem may be explained in part by the self-serving bias. The self-serving bias is in full swing when we reinterpret facts to preserve our self-esteem, or the need to feel good about oneself. The classic example of self-serving bias is the student who attributes good grades to his or her own hard work and intelligence but blames a failing grade on the teacher. People can protect their self-esteem and their own fear of serious illness by making up a reason why it could not happen to them. This reason enables them to live without the fear. In some ways, the self-serving bias is perpetuated by news slices that provide incomplete information to the public. People might read that eating red meat causes breast cancer. Of course, what is should read is there is an association between eating red meat and breast cancer. Now, someone might read this and think that they very seldom eat red meat so will never get breast cancer. They don’t stop and think about the other implications, such as, this is self-report and relies on memory, it is a correlation and not causation, we have little information on the influence of diet on breast cancer, or even the multiple causes of breast cancer, etc.
How do I respond to being told that we are only given what we can bear? I say that if that were true then there would be no need for drugs, or alcohol or nicotine or any mechanism people use to escape their circumstances of what they have to bear. I say that if that were true there would be no suicide. After all, I really think that your self-esteem might need a reality-check and I am happy to provide it for you.