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Nicole Scobie (aka CancerDragon)
May
21
Decisions…
As an air traffic controller, my job involves making rapid decisions under frequently stressful conditions with serious consequences. I probably make hundreds of these quick decisions every day.

Since my husband has the same job, you would think the two of us together would be expert decision-makers, navigating through life with quick, accurate planning and confidence.

Nothing could be further from the truth. We actually are almost impossibly overwhelmed when we have to make a choice between two or more non-critical options when the results are not immediate. Apparently, our work-related skills are only that: work-related. Outside of work we are pretty pathetic.

In fact, it turn out, all our co-workers are similar. Get a dozen of us together outside of work, for example, and ask us where we would like to go for supper. We will all stand there and hem and haw and wonder about all the options and possibilities without being sure how we feel about any of them. Not one person will be capable of making a decision. Apparently, if it’s not a critical moment with specific direct outcome, we are useless.

This makes me wonder a lot of things, not the least of which is what kind of job would Martin and I be any good for if ever we couldn’t work as air traffic controllers?  What other job requires a person to analyze moving objects in a three dimensional setting and make rapid-fire decisions and take immediate action? A juggler perhaps?

In any case, when it came to our son’s cancer diagnosis, we both felt that our training in handling emergency situations helped us stay calm and focused in the moment, but looking back, I think we were lucky that Elliot’s case was straight-forward enough that we didn’t have to make any decisions about his treatment.  He followed the standard protocol for his stage and type of cancer and it worked.

Many cases are not so clear-cut.

When my mom was diagnosed in 2000 we were only told initially that a large tumour could be seen on her small intestine. Without much more to go on than this, my dad and I searched through books in the hospital medical library for any information… For those of you born after, say, 1980, a library is a bit like a big non-virtual google search engine that is surrounded by 4 walls and a roof, and filled with shelves and books, which are like non-virtual websites written in ink on paper and glued or stapled together. Strange eh? It sounds strange to me now  too!

In any case, we found a bit of information but not much, and came up with our own general vague diagnosis, which was more or less: large tumour on small intestine.

Despite the seriousness of her condition, the operation to remove the tumour could only be scheduled for a few weeks later. My parents decided to head to the cottage and enjoy some relaxing time before embarking on this new challenge.

The drive to the cottage is roughly 7 hours. After about 6 and a half hours, the mobile phone rang. (Just as a side-bar here, the mobile phone back then was one of those heavy black things that actually has a phone part and a base part linked by a curled cable, with a black leather zip up case around the base, and the whole contraption having to be carefully perched on the dashboard with the stubby black antennae lifted up in order to get a signal. I just mention this because this blog is also about how much has changed since then, not just in medicine but in technology overall. Also I loved that phone.) The phone call was from the surgeon’s secretary, calling to say that my mom could now take a slot the next morning for the surgery instead of waiting. If she could just come to the hospital and be admitted tonight.

Decision time.

My parents stopped the car and talked it over.

Then they turned around and drove 6.5 hours back to the hospital and by the end of the next day, the cancer was removed from my mom’s body.

A few months later, a spot seen on her liver was deemed to be most likely cancerous, and my mom underwent a second operation. The liver is a mysterious and wonderful organ, because it is the only one that will grow back. Imagine if you could amputate an arm and then it would just grow back?

Unfortunately, my mom’s liver regenerated with several new cancerous masses, almost as if to say “take that”.

At this point my parents were told they were out of options.

Decision time.

My parents decided to continue to look into treatments and ask questions. Without the wealth of information that is now so easily available online to guide you the way it does now, you are left to navigate through these waters blindly. They decided to travel to Princess Margaret-Mount Sinai in Toronto in the search for non-traditional treatment options that they had heard of, like radio frequency ablation, cryo-surgery, etc

In Toronto they stumbled on to the last minute possibility of my mom getting on the clinical trial for STI-571, later to be renamed Gleevec, the “Magic Cancer Bullet”.   Only to be told that the trial was open only to those with tumours containing the C-kit enzyme, and that the trial would be closed off for entry before a biopsy could be taken and lab analysis done to see if this enzyme was present.

My dad is like me, or rather, I guess I am like him. I get copies of every single file and document relating to Elliot’s treatment.

Being faced with the only possibility of treatment but the overwhelming unfairness of being turned away due to a technicality, they sat and looked through my mom’s files, which they carried around with them to each appointment, just in case… And pulled out the biopsy report from their own file and found right there on page 8 the presence of the C-kit enzyme.  My mom was entered that very day into the clinical trial, which proved to be a lifesaver.  That was 12 years ago, my mom is still on Gleevec today. The liver tumours are still there, but not talking much anymore.

Aside from the obvious point of always getting copies of all your files, and bringing them to each appointment, there is another issue here: access to information.

Back in the 80s when my grandmother was diagnosed with a brain tumour, there was an overwhelming lack of information.   Looking back, it is now fairly clear that the patient and caregivers’ lack of information reflected the doctor’s lack of information. Since that time there have been decade by decade improvements that my family has lived through and can be seen by the differences in each generation’s dealings with cancer treatment.  Technology has now made accessible treatment options not just to doctors who may otherwise not see some rare cancers frequently, but to patients themselves who want to know about all the possibilities before making a choice.

However, there is still one thing lacking despite these advances. And that is exactly the most critical element:  choice. Information is useless if you don’t have a say in the matter.

In the U.S., the Patient Choice Act is a piece of legislation set to be introduced to congress shortly. It is better explained by childhood cancer advocate Jonathan Agin in one of his many excellent articles for the Huffinglton Post, but to summarize, as Jonathan explains, “As a patient or family facing a life threatening or terminal illness, you would have the ability to obtain drugs that have already been in phase I and II trials with established safety profiles.” So in my mom’s case, for example, if they had not had that document, she could still have chosen to take that drug, despite not qualifying for the clinical trial.

This legislation is an important tool to promote in cancer advocacy and needs to be implemented in many countries. In Europe for example there have been several parents forced to raise funds to get medical treatment for their kids in the U.S. or elsewhere, because the clinical trial their kids were on did not allow them to receive one of the drugs proven effective for their type of cancer. One family in the U.K. even took the government to court and won a ruling stating that this medication was essential to saving the child’s life. (here is the article). Of course, by the time the ruling came it would have been too late for the child, and the family had already been to the States for the 6 months of treatment and come home again with a child in full remission, all at a personal cost of roughly half a million dollars.

Where does all this lead me to? Maybe, in fact, making a good decision is not as much a skill as it is the result of two things: access to information and choice.

The more you know, the stronger you become.

What do you think?
Posted in Family

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Nicole Scobie (aka CancerDragon)
cancermom
Member since
Apr 16, 2012

My grandmother, my mother, my son. Somehow, the cancer dragon skipped over me. Life is a roller coaster adventure, one with ups and downs, twists and turns. Our family is holding on tight for the ride, and somehow, happy. Together we are stronger than cancer.I write more about my cancer experiences at nicolescobie.com et en français au http://mamancancer.wordpress.com/

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