Published by: Jerod Loeb on 10/18/2011 9:51:32 AM
This entry is the first in a series for National Healthcare Quality Week (Oct. 16-22).
I knew something felt different, but I was not sure I could put my finger on it. My wife (a registered nurse) and my daughter (a 2nd year medical student) had just completed our volunteer shift with the local fire department, working first aid at our community art fest (which draws about 25,000 people) in mid-July 2011. The day was hot – nearly 100 degrees and we were working only from 2pm-5pm, but that was the worst of the heat of the day. We had just responded to our third heat stroke patient and were calling for an ambulance when I started to feel as if I would be the next patient.
Once we had our patient safely off to the hospital, I told my wife I needed to leave as I felt exhausted, hot and had pain in my back. We went home; I put ice on my back, but still felt “different.” My wife said it was probably just the heat, but reminded me to make my appointment for my annual physical, which I was due for anyway, so I made the first available appointment – 2 weeks away. My blood was drawn the Wednesday before my scheduled Monday appointment. I am 61 years old, but besides a family history of heart disease, my own hyperlipidemia (which has been under control with medication), and a few pesky little kidney stones over the years, I have been the picture of health. As a health care professional myself, I tried hard to follow all of the preventive medicine guidelines in terms of lifestyle, screening, etc. Little did I know how much my life – and that of my family – would change over the coming few days.
My primary care physician called the day after my blood was drawn – even before our scheduled appointment – to tell me he was “alarmed” about my blood work. When I said “what do you mean” he responded, it is your PSA. I said “What?” What is my PSA?” not ever considering this would be an issue as it was measured regularly and was never an issue before. I was more worried about my blood lipids. He responded “It is high.” I said “How high?” He said “Very high.” When I said to cut the hyperbole (I actually used a stronger word than that) and tell me how high, he said “Well, I have never seen one so high” (it was 535 from 1.29 at my previous physical). I had no symptoms whatsoever. He said: “Well, it is either a lab error or cancer of the prostate and if it is cancer, it probably already metastasized,” so he suggested I call a urologist immediately. Not necessarily very compassionate in his tone or message, but he did have the right advice.
The urologist (whom I have known for about 25 years) saw me the next morning and when he came into the exam room, said “how are things?” I said ‘not good and my PSA is 535.” He said “no problem – don’t panic – I see guys all the time with PSAs that high.” I said, “Tom, you see patients with PSAs of 535 all the time?" He turned to me in panic mode and said “I thought you said 5.35.” The next several days are a blur, but I went through a complete urological exam, CT with urogram, bone scan and prostate biopsy – all of which pointed to very bad news. Indeed this was not a lab error as I had hoped. I had stage IV metastatic prostate cancer with significant bone metastases.
As a guy who was previously healthy and has spent the past 35+ years in health care (having been a medical school faculty member for the past 33 years, worked in health policy for 7 years – and for the past 17+ years, a member of the senior staff at The Joint Commission), to receive a shocking diagnosis like this is beyond the pale of words. I do want to share a fragment of something that I wrote 2 weeks into my new journey about what I learned in that initial period:
- The kindness, wisdom and compassion of friends, colleagues, and even those I only know only peripherally, continues to amaze and astound....and help.
- Good news spreads fast. Bad news spreads faster and farther.
- As one of my Joint Commission colleagues mentioned to me, isn't it sad that it takes an illness like this to get people to communicate.
- Reading the literature often creates more questions than answers.
- I am not sure whether to believe the clinicians or the statisticians. I certainly don't want a statistician taking care of me.....but I don't want a clinician taking care of me who is ignorant of statistics.
- My wife and kids are the primary reason I will succeed.
Since I started my therapeutic regimen, I have found few outlets that permit me to emotionally deal with the problem I am facing. I continue to immerse myself in work, which is both my passion and my hobby. My Joint Commission colleagues have been amazing as friends, advisors and confidants. My family has rallied around me. I continue to volunteer my time with the local fire and police departments (for which I have been proud to serve as Commissioner for the past 7 years). The emergency services have always been my passion since I was a kid growing up in New York City – and the local fire and police departments have reciprocated in my time of need and have been providing my family and me with critical emotional support. I even got to take a few fire calls last weekend!
But there is one other outlet I want to specifically mention as I have found it very helpful – and it is the use of social media as a proactive communication vehicle and as a reactive emotional support tool. In particular, the ruminations I wrote after my diagnosis – and many since that day in August – were posted on a website called CaringBridge, a free patient website designed to help family and friends share information and support throughout a significant health challenge (www.caringbridge.org). I had used CaringBridge only once before when a physician colleague diagnosed with pancreatic cancer, requested his friends and colleagues to go to the site for updates on his condition as he grew tired of answering the same questions again and again, but was happy to receive “virtual visitors.” While I accessed the site at that time and wrote him words of support, I really didn’t fully appreciate how such a modality could possibly be helpful to him in any way other than simply not having to answer many emails and calls about his condition.
Logistically, CarringBridge permits patients and families the opportunity to create a free, dedicated web page (with text and photos) to be used to update anyone who wishes to follow along on your journey – and permits friends, relatives, colleagues to offer supportive messages. Even with my diagnosis, I was reticent to believe in the power of CaringBridge, but my wife thought it would be helpful and so she signed us up and I didn’t protest. As a guy who thought he knew a lot about health care just 2 months ago, I now realize how little I knew about how some small things can help in a big way.
In 2009, the US Census Bureau estimated that 76.7% of the US population has someone in the household with internet access. Sure, CaringBridge may not be for everyone, but it is something very tangible that safety net providers may wish to mention during discharge education for patients’ with complex, life-threatening conditions. It is a free resource that, from personal experience, I can say, is a valuable tool to offer your patients. The next time you speak with a patient or family member about dealing with the emotional toll their disease may be taking, consider telling them about Caring Bridge. I have now had >5,200 visitors to my site and have had enormous benefit from the words of wisdom written to me – and have found it cathartic to let others know about my own innermost thoughts having to fight this disease.
I don’t know what the future holds for me, but I want to see my older daughter graduate from medical school, my younger daughter graduate from law school, celebrate wedding anniversaries for years to come, keep pushing the quality and safety envelope with my colleagues at The Joint Commission, and keep riding on fire engines until I am too old to climb on the steps of the fire truck.
Jerod M. Loeb, PhD
Executive Vice President
Healthcare Quality Evaluation
The Joint Commission