As you may have read in last week’s entry, I got hit with a pretty hard cancer diagnosis on January 18, 2011.
Like I said, within one day, I went from eating peanuts and watching the Patriots on TV in symptomless bliss to being told I had a ‘significant number of masses’ on my liver… a tough nut to swallow for sure (sorry, couldn’t resist the pun).
Once we returned to Boston from Vermont, I was admitted through the ER, a 9-hour ordeal… Although they didn’t tell us immediately, my wife and I knew the diagnosis wasn’t good. Over the next few days, all suspicions were confirmed and I was diagnosed with Stage 4 colon cancer with metastasis to my liver.
Although there were several moments during these first few days where I wanted to bolt out of the hospital to escape my new reality, I have to say there was an ironic peace of mind that finally came with the official diagnosis. With it, I quickly realized I needed to focus on how to begin my journey toward health.
And that journey started right away. My information (e.g. chart) traveled across the hospital VERY quickly – and within 24 hours over half a dozen physicians had read my chart and were collaborating on the best course of treatment. They had seen all the scans, reviewed all the blood work, reviewed my HPI (History of Present Illness) and read the notes left by the staff GI physicians and internist. They huddled up to hatch a plan with two of the finest doctors I will ever know—Dr. R (my medical oncologist) and Dr. T (my surgical oncologist).
My first visit with Dr. R was pragmatic in tone, with a solid injection of hope.
He explained that my liver was covered with tumors… but added… that his plan was to be extremely aggressive. He would start my treatment with a chemo concoction typically used for pancreatic patients.
Although this course of treatment had only been documented in one study out of Germany for patients with metastatic colon cancer, Dr. R was confident that his plan to hammer me with Fulfurinox (the chemotherapy treatment) would be more efficacious than the standard protocol (Fulfox).
He followed by saying, ‘You’re young, and I know you can take it,’ and explained that his goal was a cure me, not just prolong my life.
Dr. R showed me scans of my liver and the cellular invaders that were looking to bring me down. I could actually see the cancer in 3 dimensions covering my liver. At that point, I knew that my shot at life required this ridiculously tough chemo concoction.
Without hesitation, we wholeheartedly agreed to move ahead.
I’ve got way too much to live for and I was not going to let a little (or a lot of) pain get in the way. Oh, and another thing, if I didn’t go forward with this chemo, they likely would not have been able to perform the subsequent necessary surgeries to remove the liver tumors and I… well… probably wouldn’t be typing right now!
This first visit with Dr. R was also where the seamlessness of their health information technology (HIT) operations and the benefit of even the more mundane IT integration really began to help me as a patient. He opened up the EMR to show me scans, pathology reports, blood test results and explained all of it – the good, bad and ugly. For example, my CEA (Carcinoembryonic Antigen) levels were through the roof, I had tumors ranging in size from 2 to 8mm with eight (of the nine) located in my liver. The colon tumor (the primary tumor, of which there was one) was less significant – just a bit of cutting and it’d be gone.
Dr. R explained my situation clearly, but it was the 3D images, viewed from within the EMR, that really helped me understand my situation and eventual progress. I am a visual person and would have lost half of what he said if we had just talked through it. These images were also critical to my own psychological therapy. Throughout the last year, I’ve used visualization exercises to create a positive mental environment to help the tumors shrink. Many arguments can be made as to whether visualization and positive imagery can actually aid in the ‘shrinkage’ of tumors – I wholeheartedly believe it can and it helped to know I was doing my part in the battle.
Further, once a month, my day would begin with scans at 8 a.m. followed by a meeting with Dr. R at 9. The one hour between these two appointments is almost impossible to handle emotionally – it is a grueling hour worrying about endless scenarios: would the scans show that the chemo is shrinking my tumors? Would it be ineffective against my tumor type? What if my tumors were still growing or something new appeared?
Each minute between appointments seemed like a life-crushing day, but thankfully the wait was limited. One of the most comforting parts of this process was knowing that within minutes of my scans being complete, a very readable version of those images would be available for review within my chart. I can’t explain the duress that is avoided by this interface between the EMR and the medical device. Each time I arrived in Dr. R’s office – those scans were ready.
When these images dictate your shot at life… this seamless exchange of information is beyond critical. Upon Dr. R’s arrival in the exam room, we would review the scans and quickly know how we’re doing – good or bad. This illustrates one small example, from a patient’s perspective, of how important the seemingly routine aspects of HIT integration are to the people receiving this life-changing information.
I am proud to know that on some small level, this is my life’s work.
In upcoming blog posts I will share a few more examples of where HIT helped me navigate the choppy emotional waters of this disease. I will also delve into the shortcomings and the promise of HIT, as I consider it from a patient perspective. In the meantime, thank you to everyone—and there were a lot of you—who read the first blog post in this series. I appreciate the kind words and your thoughts on the subject at hand. I will post responses as we move forward and please keep sending thoughts on what you read. Let’s keep talking…