A letter to a father whose son was diagnosed with cancer

One of my colleagues’ son was diagnosed with cancer last week, and was started urgently on chemotherapy. When I found out, I wrote my colleague an email which I have pasted below (with identifying details removed).

I heard about your son through XXXX. I know from recent personal experience how overwhelming this all can be. The disease process is obviously different, but if there is any way that I can give help or advice to you, your son, or your family please let me know. Chemo is rough, but there is light at the end of the tunnel. I had my chemo as an outpatient – 8 hours a day, 40 hours a week, 1 week in 3. I can’t say enough good things about the oncology nurses. They are fantastic, loving people and will take good care of your son.

My best advice for dealing with the chemo is bad television (I watched a lot of junk) – an iPad, headphones, and a netflix subscription would be a big help. I wasn’t able to read or concentrate, and I was too weak to do much else. I did find that massage helped – especially when I developed somatic pain and weird sensory issues from the chemo. Once his blood counts improve and he is cleared to go out in public, you might want to get a prescription for massage. They had to use light pressure, as I bruised too easily for deep tissue. My massage therapist is fantastic – Corinne at Dreamclinic on 65th.

During the bad weeks, my family made me take a walk once a day, even if it was only a slow shuffle to the end of the block and back. During the good weeks I still wasn’t up to strenuous exercise, but my family did make sure that I got out of the house on occasion. In the good weeks I also tried to do very gentle yoga, just to keep my body stretched out. I would only go to a “slow hatha” or “recovery” class, and just explain to the instructor that I would only do what I could.

I had a lot of nausea, even on 4-5 different anti-emetics. I did end up using medical marijuana during the worst of it. It sounds odd, as I don’t use drugs and had only used marijuana once or twice in college, but I found that there were times that it was the only thing that helped, even on zofran, steroids, compazine, benedryl, and ativan. I didn’t want to smoke, so I used edible brownies or rice krispy treats. I only used it 3-4 times, but when I needed it, it really helped.

Depending on the chemo regimen that he is on, there may ways to prevent long-term side effects. I developed peripheral neuropathy secondary to cisplatin. In retrospect, it turns out that Vitamin E has been shown to minimize the risk of this, but I didn’t do this research and no one brought it up until I developed the symptoms and by then it was too late. Obviously, the first priority is getting the lymphoma under control. After that you may want to research the most common long-term side effects of his regimen, and research or ask about ways to mitigate the risks.

I personally found it therapeutic to blog about my treatment. It may not be for everyone, but it allowed me a chance to reflect on what I was going through and what I was thinking about. I think I used it in lieu of therapy. Blogging may not be for everyone, but he may want to keep a journal. If he does want to blog, I used wordpress.com.

Once he is getting towards the end of the chemo, realize that there will be a long recovery process before he is back to full strength. Every day gets better, but it truly was about 6 months before I was up to almost full energy and strength and there are physical and psychological impacts that still last a year and a half later. For about 3 of those months I worked with a personal trainer to get my endurance back (my lowest crit was 26, which I could really feel).

The good news is that he is in the best possible place – the physicians and nurses at the UW and the SCCA are fantastic, and he is with a supportive and loving family. Again, let me know if there is anything that Stacy and I can do.

Andy

The Values of a Surgeon

A video from my boss, Dr. Carlos Pellegrini. The values of a surgeon, providing a moral compass for us all: Professionalism, Excellence, Innovation, Introspection, Inclusion.

Of those, I think we all could use more introspection.

Inner Geek: Surgeon Still Playing Video Games After 25+ Years of Schooling

Brian Caulfield wrote up a really nice piece for nVidia’s blog based on the talk I gave last month on Video Games and Medicine. I especially love the title.

Inner Geek: Surgeon Still Playing Video Games After 25+ Years of Schooling

Driven

A great video from the American College of Surgeons. Inspiring message about why we surgeons do what we do, and how we are driven to provide the highest level of patient care. Featured in Dr. Carlos Pellegrini’s inaugural address at the 2013 American College of Surgeons Clinical Congress.

Surgeons as Educators

This year I attended the Surgeons as Educators course put on by the American College of Surgeons. By far this was the single best professional development activity that I have ever attended. A solid week (8 am – 9pm) of great sessions on how to teach, leadership, and career development. I would highly recommend this to anyone involved in educational leadership.

Because I am a huge geek, I tweeted my notes throughout the meeting, including great tips and pearls as well as links to articles and videos I found particularly interesting. For folks who might be interested, I collected all of these tweets in one place using Storify.

[View the story “2013 Surgeons as Educators” on Storify]

Video Games and Medicine

Over Labor Day weekend I had the opportunity to run a panel on Video Games and Medicine at Pax Prime  – the largest video game convention in the world. It was a really fun panel (and a great convention). We brought SimMan and LapSim with us and after the presentations pulled up volunteers from the audience to be a surgeon for the day. One of my daughters was in the audience, who had never heard me speak publicly before. I was especially happy about the panel because she told me afterwards “Dad, I never knew you were so funny.” That’s the kind of feedback you like to hear from your teenager.

The video of the presentation is below, and the presentation itself is available as a Prezi.

I was interviewed about the panel by All Things D, which resulted in a nice feature: “Why the University of Washington Wants Its Surgeons to Play Videogames.”

The high cost and strange economics of health care

I haven’t posted on this blog in a few weeks, which is actually a good thing. It means that I have returned to work and have been busy enough that I haven’t had time to update my blog.

The good news – I have completed chemotherapy and my most recent scan shows no evidence of residual cancer. In other words I am cancer free. I don’t need any more treatment or testing for another 6 months. After that I get a CT scan and lab work every six months, but can otherwise expect a normal life.

As far as my recovery, I am doing well. I am fully back to normal with respect to my daily activities and my ability to work, including operating. I’ve even started back on my normal hobby of home improvement – witness the new railing I built for our back stairs.

I’m still not quite back to my normal level of physical fitness, mostly due to the fact that I wasn’t able to exercise for 4 months and I gained 10 lbs due to the steroids I was on to help manage the side effects of the chemo. I’ve started working with a personal trainer, and I expect to get back to normal fitness in a month or so. I’ve even started to grow some hair, although it is still mostly stubble.

Now that I am done with any physicians visits for the next 6 months, I sat down tonight to figure out my total medical bills since my cancer diagnosis. As best I can figure, my total charges add up to $110,931.16 including physician fees, pharmacy, and hospital charges. Of this, my insurance provider (Regence) negotiated payments of 63,510.06 and I had to pay about $2000 out of pocket. I was also fortunate in that the University of Washington paid for a full 3 months of sick leave at full pay, meaning I didn’t miss a paycheck through the whole process and I didn’t have to go on disability.

If I had no insurance I would be liable for the entire $110k. The typical patient with testicular cancer is a male in his early 20s (I am significantly older than the average patient). This is the age when people feel invulnerable, have little money, and often are still finding their way in the job market. In other words, exactly the kind of person who wouldn’t have health insurance. Even for those with insurance, the cost of co-pays and deductibles can be crippling. I wasn’t able to work during chemo. If it weren’t for a generous sick leave policy, we would have incurred crippling debt with 3 months of no pay. It’s no wonder that health crises are a leading cause of financial distress and bankruptcy, even among the insured.

All this to say that our current health system is broken. I was fortunate to have a good job, good insurance, and an excellent sick leave policy. Most of my patients don’t have that luxury, and I have seen so many people affected by this that I get angry at our nation’s health care system. In the US we pay more for health care than any other nation, while providing care to only a subset of our population, and while getting worse health outcomes for our investment. The Affordable Health Care act is a start, but nowhere near enough. We need true universal coverage and we need to align our system of payments to incentivize quality rather than quantity of care. If we can’t get this done, we are truly headed towards a national crisis as costs continue to spiral.

Enough of the soapbox for tonight. I’ll continue to update this blog periodically, although I won’t be posting as much about my own health. Instead, I’ll move back to my original vision for this blog, which is to use it as a forum to post about surgery, technology, education, and innovation in health care.

Reinventing Surgery: Creating a System that Works

A bit ago I was asked to participate in a fascinating symposium on “Reinventing Surgery: Creating a System that Works.” The session was hosted by SCOAP (the Surgical Care and Outcomes Assessment Project), which is a fantastic non-profit that is working to transform healthcare through really innovative outcomes research. I didn’t realize until today that parts of the symposium (including my talk) were filmed by UWTV. Here is a link to three of the talks, including my talk on using simulation to improve patient safety. The other speakers are Erik Van Eaton, talking about his work in clinical informatics, and David Arterburn who talks about his work in analyzing variations in care.

Enjoy!