Year 1, Week 21: Fitness ‘Toys’ and ‘The Patient from Hell’ Review

1:21

Another good week, all together for the holidays, enjoying the ‘winter wonderland’ with all the snow.

fitbitTo keep me focussed on my fitness goals, I have been experimenting with a few new ‘toys’ (non-paid product placement alert!). First, Fitbit, one of the various activity trackers (others are Jawbone’s Up and Nike’s Fuelband) that sync with our electronic devices and that takes the basic pedometer approach to another level (also tracks stairs climbed, sleep soundness, with manual logging of other activities as desired). Good website and apps provide the ability to track one’s progress and provide motivation.

Two surprises. First, I walk around our house more than I thought. Secondly, perhaps reflecting my like of numbers, I find it does provide more encouragement to go for longer walks to meet the various milestones and ‘badges.’

One of the ironies of these trackers is that they are used mainly by people like me, already active, and who want to measure their activity, rather than people who are less active. Allows me to indulge, within reason, the ‘quant’ within me.

The other is Surfshelf, essentially a surface that attaches to treadmills, stationary bikes etc and that allows one to use one’s laptop while moving. I used it on our bike and while I find it not yet easy to compose while riding, I can do my usual media scan while exercising, a productive and effective form of multitasking. Relatively cheap and fairly flexible for most home exercise equipment (I had to improvise a few spacers etc to make it work on our bike).

We saw The Master, Paul Thomas Anderson’s film on cults, likely inspired by scientology. While well acted (Joaquin Phoenix as the troubled naval veteran who falls under the spell of the charismatic leader played by Philip Seymour Hoffman), it somehow didn’t come together for me, despite some good scenes and engaging aspects.

patient from hellI have been reading, hopefully my last ‘cancer book,’ The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too, by Stephen H. Schneider and Janica Lane. Recommended by a friend, Patient from Hell describes the cancer journey of Stephen Schneider, a climatologist diagnosed with mantle cell lymphoma in 2001, and how he used his scientific framework to engage and challenge his medical team and ensure the best possible treatment. While in many ways, his is an example of how his cancer ‘metastasized’ his brain (and that of his wife), it also provides some general pointers on how and when to engage with your medical team (and arguably, a counter example of when not too!).

Part of what makes it interesting is his focus on uncertainty, drawn from climate science, and how to make better decisions given this uncertainty, where to err on the side of caution (Type I error or precautionary principle) or not (Type II error, or of omission). Some of the more practical suggestions are:

  • have an advocate;
  • understand and make clear that it is the patient who should decide on treatment choices and different risks (doctor recommends);
  • persevere in asking questions;
  • you’re still alive, so do something;
  • use common sense; and,
  • just say yes to pain medication.

One of my favourite quotes is actually by his psychiatrist, following his auto stem cell transplant when Schneider was feeling depressed:

“Look, Steve, the average person with cancer throws himself at the mercy of his doctors, his God, or at least just feels overwhelmingly sorry for himself. Most people don’t let their left brains take over and manage their treatment or spend their time researching their disease on the Web, following every detail of their treatment process, suggesting changes to protocols, and doing mental models of their reingraft. They also don’t have a biologist wife who spends hours a day on the Web – catching all the latest reports on their disease so that they can review them together and discuss what to present to their doctors and how. You haven’t let yourself fell your disease yet. Finally, you’re at a point where your body knows there’s nothing more your mind can do. Just let it happen. Let the emotion flow. Let the anger and the hurt and the ‘How could this happen to me?’ come out now. It should’ve six months ago, but you didn’t let it because you were working overtime to make sure you were properly taken care of. There’s nothing you have to do now, so just let them come over you …”

Not for everybody but very readable, and particularly still relevant for those with mantle cell lymphoma – even if much of the protocols have changed since them (incorporating some of the lessons of Schneider’s treatment).

A better general choice is Groopman’s How Doctor’s Think. Schneider eventually died, about 9 years after his initial diagnosis, of a heart attack or embolism while travelling back from a climate change conference (obit here).

This weekend, we are taking our kids back to university and then settle back into our routine. Hoping to start cross-country skiing with all the snow we have, in addition to yoga next week.

As mentioned last week, have been considering how to phase-down my blog as part of my weaning myself away from the cancer layer of my identity. I will change from daily article posts to a weekly summary of what I found interesting on Saturdays with the usual weekly update on Sundays. I (and you) will see how this works, with the first weekly summary next Saturday. Feedback always appreciated.

 

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2 thoughts on “Year 1, Week 21: Fitness ‘Toys’ and ‘The Patient from Hell’ Review

  1. Thank you for the recommendation for the Fitbit. I’ve been looking for something like it and will give it a try.

    I read your news that you will be posting less as one way of moving away from the “cancer layer” of your identity. This is something I’ve been struggling with the past few weeks ever since my radiotherapy ended. Now that my treatment is not something I must deal with daily (my next appointment is in 4 months) I find that an awful lot of my identify was wrapped up in getting through it. I find that I am at something of a loss right now since it feels as though I am in a kind of limbo – not “sick” but not yet pronounced “well” either. Your thoughts and any links /resources about this would be most welcome.

  2. I went for the Fitbit as the wireless sync is as effortless as possible, in contrast to Up. Fuelband didn’t have the sleep tracker that I also wanted.

    On your broader question of moving away from one’s cancer identity. No easy or automatic way. The first time round in 2010, returning to work provided the needed focus and interest. This time, it is a bit more challenging as I am not returning to work and have to generate my own focus. In one sense, getting my book out was an attempt to have some form of closure (never perfect) and put it behind me. Now that that is done, I can start focussing on other projects, non-cancer related.

    A certain amount of limbo is normal and to be expected – and I wouldn’t try necessary to fight it. Interestingly, I haven’t found anything that really speaks to this (idea for another post?!). You have been through a lot, physically and emotionally, and perhaps just focussing on rebuilding your strength, engaging with friends, and thinking about going back to work or other projects will allow this to happen in a fairly seamless manner.

    Hope these thoughts are helpful. Maybe some other readers have some ideas as well.

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