Update Clinical Trial MLN0128 Cycle 5, week 1
Scans last week showed disease is stable. This was disappointing as two months ago scans showed improvement. For now, I am still in the clinical trial but I can’t help waiting to see if I get a phone call booting me from the clinical trial for not improving. As luck would have it, I’m actually managing the side effects quite well now. I went the whole day without needing to take anything for side effects today for the first time in a month.
I still run nearly every day but now I run with a back brace to try and stabilize my crumbling hips. I’m still desperately waiting for a cure. I’m not looking for a long life, just a normal lifespan. I worry that the lesion in my right femur is going to result in a fracture. I worry.
Cancer is not a gift – it’s a disease
When I was diagnosed with stage 3, grade 3 breast cancer, I was referred to a dietitian.
>Dietitian: Cancer is a gift
>Lulu: Sorry? What did you say? (I thought she said cancer was a gift)
>Dietitian: Cancer is a gift. Most women die of heart disease not breast cancer and this experience will give you the opportunity to change your lifestyle so that you don’t die of heart disease.
>Lulu: cancer is not a gift. A gift is something given freely without a payment. Cancer is going to make me pay and pay and pay. Cancer is a disease like Ebola, multiple sclerosis, Parkinson’s and Alzheimer’s. We clearly see things differently.
On reflection, I believe the dietitian meant that a diagnosis of cancer can be a wake-up call to change your way of life to improve your heart health. I resented this assumption on two levels. First, I made a bit of a judgment that this overweight unfit dietitian was not committed to a heart healthy lifestyle. Secondly, my lifestyle did not need changing. I was a lifelong vegetarian, exercised every day and have never been overweight. I did not drink or smoke or use illegal drugs. If she had read the chart in front of her, she would have seen that my heart health had been assessed and found to be extremely healthy. I was wallowing in a cancer diagnosis. Heart disease was the furthest health issue from my mind.
However, more importantly, there is no evidence that a health scare results in long lasting health changes. Sometimes we might make immediate changes but then gradually slip into our old ways. As Lance Armstrong wrote in his book, It’s not about the bike, a short while after his recovery from stage IV testicular cancer his good intentions to take more care of his health had already lost ground. Cancer Epidemiology, Biomarkers & Prevention published a survey conducted on 3000 cancer survivors. The study estimated that only one-third of patients diagnosed with cancer quit smoking – even when smoking was linked to the cancer. The power of the feel good chemical soup in our brains has a much stronger pull then the long term sacrifices being asked for on the uncertain promise of more time. So they reach for the chocolate cupcake and feel the dopamine rush.
We scorn the holy water superstition that surrounds Ebola but we heap superstitious nonsense on a cancer diagnosis. Despite our great western education, there is a lively market for crank cures and romanticized metaphors. When we wrap breast cancer in pinkwash and positive thoughts, we deny the urgency of the direness of the situation. Can you imagine someone saying that Ebola is a gift because it gives you the opportunity to learn to avoid bodily fluids of others?
Cancer has not taught me to be a better person. I still feel an overwhelming compassion for the chronically mentally ill. I am impatient with the primitive state of medicine, but then I am more impatient and faster to anger in general nowadays. I am especially irritated with people who catastrophize trivial events or refuse to help themselves. I have no tolerance with people who complain about maladies like a headache and then say they don’t like to take drugs when I offer them a Motrin. Just stop whining. Nobody cares. More than ever, I resent anyone who wastes my time. I have never had a particularly high tolerance of fools but now I have none. My sympathy bar is set to life or death.
I defend your right to express how your disease makes you feel but not your right to tell me how I should feel. Since when did it become my responsibility to make others feel better about my early death? Some may enjoy the attention that a serious illness might bring. I don’t. I would give anything to slip back into an ordinary life. I do not have a stage 0 cancer scare, or Munchhausen syndrome or clinical depression. I am anonymously dying and I am not celebrating it.