Saturday, August 16, 2014

Your abstract language tells me you can’t be trusted.

Update on Clinical Trial MLN0128, Cycle 5, Week 1

Scans at the end of cycle 4 were stable so I continue on the study drug for the interim. There has been no improvement since the dramatic improvement after the first set of scans, but there has not been any disease progression either. The gastro-intestinal effects of the drug are more-or-less controlled by other drugs. Fatigue is manageable. I came out in a very itchy rash that is apparently due to the prior radiation and is called radiation recall. Hydrocortisone ointment takes care of it. I am still cramming everything I’ve got into my every day. I went to five cons over the last two months and I have a 5k road race tomorrow. Next weekend, I’m going to Las Vegas. I still work and garden and read and play with the dog.


Although most health care personnel I interact with are clearly deeply compassionate and well-intentioned, I have experienced a series of expressive mishaps in the hospital and doctor’s office. It can’t be easy to give the worst news most of us will ever hear or deal with our fragile emotions, but sometimes the words that are supposed to comfort us contradict the best intentions. I realize that not everyone scrutinizes every verbal interaction with my intensity, however when communication goes awry, there are unintended consequences and implicit inferences are made that influence behavior.


My mother used to respond to every situation with a little aphorism or cliché. It annoyed me then and when the surgeon or anesthetist of phlebotomist does it now, it annoys me again. I never had the chance to have an adult conversation with my mother. She was diagnosed with breast cancer when I was 10 and she died when I was 18. I never responded to sayings like

>If it’s worth doing, it’s worth doing well.

Of course, not everything is worth doing well. If you try to do everything perfectly, you won’t get anything done. Now my response might be another cliché:

>That leads to being paralyzed by perfection.

Talking to patients in clichés sends the message that you are not really listening. You are automatically responding with words that have no meaning and just filling the emptiness of my deep distress. Even if you do care, the message you are sending is one of disinterest and indifference.

One of my least favorite clichés, used by nuclear medicine technicians, receptionists and nurses alike is

>Everything happens for a reason.

This is often said with assurance and wisdom. I narrow my eyes and tilt my head and I burn to respond with,

>What do you mean?

There are at least two interpretations. It could mean that you think that the reason I have cancer is because I did something to set it in motion. My actions caused the cancer. (Aristotle’s efficient cause.) I’m sure that is not what was meant, but clichés will have multiple interpretations. However, if you mean that there is some future benefit in a disease that will soon kill me (final cause), that’s equally unacceptable. The future cannot cause the present. It is completely meaningless to say that everything happens for a reason. Life is a series of unpredictable events.

Everything happens for a reason is often accompanied by

>Everything will be OK.

You and I both know that is not true. It won’t

You make my life difficult

The lab technical were I get my scans, suggested that I get a port because she was having difficulty getting an IV line into my vein. I told her that I would get a port when it became medically necessary. If she was having trouble with the IV then she should call someone with more experience. I was not comfortable with the message that she was sending that she was not very competent.

Tell me what is in your file

I went for genetic testing. The genetic counselor was wonderful. She summarized by medical history and then met with me and an oncologist (not my usual one). The oncologist had not looked at my file, not even read the short summary in front of her. She asked me to repeat my whole medical and surgical history. I have to say I was confused. Surely a concise summary by an educated professional was more accurate than my rambling story which was prone to errors in memory and interpretation. As I recounted my history, I got more and more upset. And the oncologist just sat there impassively. I felt like one of those interviewees on the news. I was half expecting a news anchor to stick a camera in my face at any minute and ask how I feel.

Life is uncertain for us all

I can’t tell you how many times a doctor or nurse has said:

>I could be hit by a bus

I understand that they are using this as a metaphor to demonstrate that random events happen and perfectly healthy people die too. However, I think this metaphor trivializes our anxiety. There really is no connection between your random event and my certain one. Your chance of being hit by a bus is about 1: 1,000,000. Your chance of being hit by a meteorite is actually more likely at 1: 500,000. Now, I don’t know about you but I have never woken at 2 AM worrying that I am going to be hit by a meteorite but I have woken at 2 AM plenty of times with the cold reality of fear that my life is going to be over soon.

What is your learning style?

I needed radiation to the lesion in my hip. The patient interview at the radiology department started with asking me how I learn best, e.g., reading, being told, or watching. In other words, they were asking my learning style. I answered that we all learn better by having the information presented in as many ways as possible and there was no evidence for a particular learning style being more effective. Then I wrote to the CMO and told him that emphasis on unscientific fads negatively impacted the credibility of the hospital.

Too much optimism

I think the surgeon who was doing my biopsy was trying to reassure me and give me hope when he said,

>It may be nothing.

He was referring to the metastasis that had been clearly seen on a bone scan and accompanied by an alarming rise in tumor markers.

>I don’t think so, I replied.

He looked chagrined for a moment and then said he didn’t think so either. However, I could not shake the feeling that I was to trust this man with a knife in my body while I slept and he had tried to mislead me with false hope.

When I was diagnosed with stage IV, my oncologist, gave her optimism speech. She told me about patients who had lived a decade or more after a diagnosis of stage IV. I let her talk and then I patted her hand and reassured her that I trusted she would do her best, but I made it clear that I needed concrete information. I needed to trust her. When people talk in abstract terms, you are inclined to find them less trustworthy. That makes sense if you think about it. If someone is being evasive, they are using vague language. The process becomes clouded as we try to figure out what they are hiding. I often leave believing the situation is much worse than it really is because it was all so vague. I have heard doctors say that they are just trying to give patients hope. Sometimes, I wonder if it is the doctors who are trying to give themselves hope. When patients don’t live up to the believed expectations of treatment response, they hide information from the doctor. It would be much more beneficial to say that there are patients who respond very well to treatment. However, these cases are rare but here is no reason why any one patient cannot be one of these lucky few. There are no guarantees either.


Saturday, August 9, 2014

Cancer is not a gift

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.

*Lulu leaves.*

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.