First in a series of posts about the ten years since my diagnosis.
In 2007 I felt like my life was cornered into “Game Over.” Instead, it said “Free replay!”
Earlier this month on Twitter, health futurist @Berci asked which books I’ve read recently. It reminded me that for the past several years I’ve wanted to blog about how my views have changed as I’ve learned more about healthcare, which saved my life yet which has so many extraordinary malfunctions and disconnects, even as it accomplishes more and more apparent miracles. Even disconnects and malfunctions among very smart and conscientious people.
As I dug out the facts for this retrospective – my Amazon buying history (in print and audio and Kindle) and reviewed my travels (1.1 million miles to 500+ events) I thought wow, this has been an amazing trip, with some significant turns along the way. So I’ve decided to blog the odyssey and evolution year by year.
In this post, for 2007, there’s not much blogging, and no speeches, but a lot of terror, facing mortality, redemption and joy.
On January 3 I got the phone call from Dr. Danny Sands about the shoulder x-ray I’d had the day before: “Your shoulder’s going to be fine – it’s just a rotator cuff problem. But Dave, there’s something in your lung.” It was Stage IV, Fuhrman grade 4 renal cell carcinoma, one of ten metastases from femur to skull. I was almost certainly – but not definitely – dying.
On March 6 (ten years ago last week) Dr. Andrew Wagner, my urologist at Beth Israel Deaconess, took out my kidney and adrenal gland, laparoscopically. As I awoke from the surgery, I groggily saw my mom at the foot of my gurney, and Dr. Wagner at my side. (This is true:) I reached for my cane, lying beside me, said “Mommy, he HURT me” and tried to whack him, but his hands were faster than mine.
The treatment I then got was HDIL-2 (high-dose interleukin 2), an early immunological treatment that has no effect on most patients, some effect on a few, cures half of those, and kills some from its side effects. It started the week of April 8 and ended on July 23, and I haven’t had a drop of anything since, and that September they pronounced me clear. Yes, from almost dead in January to end of treatment six months later, and all clear by September. One of my biggest lessons from this has been: “You never know.”
I have some photos of those days around here somewhere – I’ll dig them up. They show a very bony, short-haired, and happy man.
That Thanksgiving I started a blog, calling it The New Life of Patient Dave. Two months later I learned about e-patients and changed my nickname to e-Patient Dave, having no idea where it would lead. (You never know.)
Here are my first blog posts. Notice the attitude of gratitude and early interest in data and statistics. :-)
- Thank you, Beth Israel Deaconess! 11/29
- Thank you, Dr. Drew Wagner! 12/4
- What’s it gonna take? 12/7
- For prettier statistics, omit inconvenient people. 12/8
- Thank you, Harvard Pilgrim! 12/9
Yes, I thanked my insurance company.
Next up, 2008, when I read the e-Patient White Paper, my head spun, and Dr. Danny Sands and I first presented my case at a conference.