I made the accompanying USA Today style illustration to show the location of my scars without grossing anyone out, and to tell the story of how I decided to let a surgeon and his robot use tiny little surgical tools inside of my body.
In the fall of 2008 I went to my new primary care doctor for a physical. My PSA levels were high so we ran a round of antibiotics to see if it was an infection of some sort. After two weeks we re-tested and the levels were just as high so I went to see a urologist, who suggested that everything pointed toward the need for a biopsy. I opted to wait until after the holidays.
On January 27th of 2009 I went into the hospital for a surgical biopsy. Three days later the doctor was on the phone telling me that I had prostate cancer. Somehow I knew that I was going to get that call, but it still shocked me to my core. On the way home that night I called an old friend to tell him the news, still trying to make sense of it myself. Later, I wrote a letter to a friend living out of state as I didn’t want to talk on the phone about it. Telling my parents broke my heart and I don’t like to remember that day. That night I told friends on a messageboard, most of them spread across the country and the world. That felt “safe” because they’re the “little people who live in my computer”… and they were so great, rallying to bolster me up. Later still, I met with my bosses to let them know what was happening, as best I could. But mostly I stayed quiet to the world.
February was a blur of appointments and scans and tests and conversations and absolute mind-numbing dread. A radical prostatectomy was the best option, with radiation seed therapy running a distant second. The recurrence of prostate cancer isn’t unusual, and since I’m so “young” to have this disease the best option was to remove the prostate entirely, which would dial the danger down to zero for the rest of my life.
Now, this urologist happened to be someone who performs traditional “open surgery”, and has done so for years. He suggested that I should look toward Northside if I decided to have “robotic” surgery. However, my understanding of “robotic” surgery was based on some old DARPA concept sketches published in tech magazines sometime in the 1990s and I had no desire to be a guinea pig for what I felt was immature technology.
Soon after, one of my oldest friends suggested that I go with him down to Florida to watch the Braves in spring training. After a bit of indecision I leapt off of the fear wagon and straight into Denial Town for a bit of a vacation and it was great. The perfect break; one that I was tempted to stay on permanently, if only I could get a job as an Imagineer at Disney.
But the trip to the land of pre-season baseball is always over all too soon and I was forced to find other ways to not deal with my Next Step. Hiding behind a string of must-see episodic television series was an excellent technique. Burying myself in work was another.
I maintained my silence about my situation with everyone I knew, only occasionally letting friends know, and even then it was only under certain situations. One of the dumbest things about considering yourself to be a fun-loving person is that YOU think your friends are going to expect you to be entertaining and funny… that they won’t want to see your thunderclouds. I couldn’t have been more wrong, but I wasn’t ready to tell people yet, partly because I didn’t have my Next Step in place.
I felt bottled up and it was killing me, but I couldn’t manage to make myself go to get a 2nd opinion… I think that the fright had caught up with me. But I still told a few people here and there.
Seriously, I dare you to try tossing the line “oh, by the way, I have cancer” into the middle of a dinner table full of people chattering away happily. That’s a social hand-grenade and I wasn’t able to throw it because I didn’t have a follow-up response to that announcement, and how dumb would I look not having a medical plan in place?
While I was at the Atlanta Film Festival I was talking to a filmmaker I used to date and she advised me that it would be best if I just kept quiet about the cancer, saying that she would never tell anyone… and as smart as she is, I knew that we were wired very differently. I wanted to talk about it with everyone, but I wasn’t quite ready yet… was I going to do the open surgery after all? Why was I dragging my feet then?
One afternoon I was scheduled to have lunch with a couple of friends from the movie business and another couple of former classmates from Georgia Tech. I was on the phone with my friend Channing, giving him directions to the restaurant when I was suddenly seized by “that feeling”, so I tossed the cancer grenade.
After the initial shock, and expressing his sympathies and best wishes, Channing said “Well, you’re going to get the DaVinci surgery, right?”.
Now, that’s probably very nearly exactly what Channing said to me. But the tone of his voice said “Please tell me that you’re not an idiot” and that surprised me almost as much as the fact that he knew what the DaVinci surgery was… I mean, I barely knew myself, and I was the one with the prostate cancer. It was a metaphysical slap across my metaphysical face and my metaphysical cheek was smarting something metaphysically fierce.
“How… how do YOU know about the DaVinci surgery??” I stammered.
“Remember, I’m a hospital architect, I DESIGN the stupid operating rooms!!” came his amused reply.
Driving to meet everyone for lunch that day, all I could think about was what Channing said. Then at lunch he and my friend Magnus explained that they had a friend who’d recently had the surgery with one of the two “big gun” surgeons in Atlanta and that this friend had become a disciple of the DaVinci surgery.
I never told him, but Channing gave me the push I needed.
I started thinking about the da Vinci surgery all the time. I started reading about the mechanized da Vinci “surgical system” and comparing it to open surgery, specifically when performing the “da Vinci prostatectomy”. In-surgery blood loss, nerve-sparing techniques, recuperation time, it all suddenly made so much sense. The tools were oh so TINY (see my illustration again to get an idea of how big the “snipping” tool is when compared to a dime).
This is one of the da Vinci machine’s instrument arms fully extended. The tiny operating tools are located at the end of the extensible black rod/tube.
It turned out that my belief that this was “experimental” surgery was out-dated. The technique had been around long enough, not long enough for hard clinical comparison to open surgery, but long enough that it had established numbers and they were good. The technique was gaining traction every year. Men I knew who’d had traditional open surgery in the last 15 years ALL said that they would pursue the robotic surgery if they could have it all over to do now.
With all of this information in my head I finally realized that I had bought into this surgical technique. I made the call to Scott Miller, one of the city’s very best da Vinci prostatectomy surgeons, and was met by the most incredible response by his staff. They sent me emails, they called me back to check with me. They held my hand a lot, and I needed it.
I was suddenly on track and everything felt right.
I had momentum.
I started throwing the cancer grenade more often, and every time it went off I found more support. LOTS of people had relatives who’d had this surgery, or something similar. Information began flowing. I could suddenly talk to people with other medical problems with new understanding. A week or two before the surgery I posted information to my friends on Facebook and sent out an email to other friends and was stunned to find out that an old colleague from the film business had been diagnosed a year before me and had the same surgery with the same surgeon. At his urging I called on him many times before and after the surgery, which was a real blessing.
What if I’d never told anyone?
Opening up was the best thing I ever did, I know three guys who have told me that they went to get checked after hearing about my cancer – and I’ve no doubt that they wouldn’t have given it a thought otherwise because that’s how we guys are. But we do talk about this stuff amongst ourselves, especially if somebody we know gets it. We’re not afraid to ask questions of each other and if I can help one person catch this particular problem by being a poster child it’s something I’ll gladly do.
Now, crawling into a quiet hole and not telling anyone does in fact work for some people, but it would have been the worst medicine for me. It’s up to you to figure out what suits your personality, your age, your culture, and your relation to your friends. But don’t be afraid to tell people. They’re certainly not going to laugh at you, and if they treat you like you’re made of porcelain for awhile, let them. Everyone needs a way to cope with this situation, and who are you to deny them their coping mechanism? Just don’t be afraid to tell them when they’re being a little too coddling.
Between my Facebook announcement and that big email I still managed to miss a lot of people and have been getting a lot of calls in the weeks following my surgery. It’s simply impossible to get the word to all of the people who know you, so don’t worry if you miss a few. They will understand that you have more important things brewing.
And… if some of your friends disappear from your radar entirely because they can’t deal with your situation, let them go without anger or hurt. It’s their problem. Maybe they lost someone important in the past and simply can’t deal with the chance of further loss, which is sad. Maybe they’re cold and insensitive robots and were never worth having as friends in the first place, which is tragic because that must be the way they live their entire life. Or maybe they never actually liked you!! LOL – just don’t hold it against them. Or do. Whatever works.
Going in for surgery can be scary. Teeth-chatteringly scary. Defy the fright by being the calmest person in the room.
Having your family with you is great, unless you don’t like them and then it’s probably a terrible idea. Fortunately, I like my own family quite a bit and knew that they were in far worse shape than me because I was about to get some really great drugs and go very, very far away for two or three hours, while they had to sit in uncomfortable chairs in a big waiting room with a lot of people they didn’t know, worrying about me for hours on end.
I remember getting into the gown, and then into the leggings they use to prevent clots. I remember being dressed with some sort of silver sheets and shower cap and leg coverings they said they were testing for keeping patients warm during the surgery. I was convinced that they just wanted to dress me up as a baked potato. I remember being wheeled into the surgery. I remember telling one nurse she was really pretty. I remember seeing the robot over in the corner. Then I don’t remember so much.
The patient lies on a platform beneath the da Vinci machine, where technicians do a million things I can only guess at, like switching out the various tools at the tips of the robotic surgical arms, as well as more traditional actions like monitoring vital signs.
Later on I remember being wheeled down the hallway and talking to people we passed, saying hello to anyone I could. The attendants were cracking up at me. That’s what I do when I come out of anesthesia… I like to wave and smile at people. They should put me in a parade right after surgery.
I remember getting into the bed. I remember a thousand night visits from a million different nurses and unceasing barrage of temperature checks and leg compressions and terrible hospital food and being tired and sleeping. But none of it was all that bad.
By noon the next day I was released to go home. For a week I had a catheter in place and the less said about that the better. It’s not the End of the World, but it sure is close, somewhere up toward the front row… not because of any pain, just the annoyance. Be sure to have a plan in place in case your cath stops draining, which happened to me one very exciting afternoon.
The catheter has been gone nearly a month and I have some recovery issues that I’ll continue to deal with for awhile, but there’s hardly any pain whatsoever from any of the actual surgery itself.
The six abdominal scars are healing quite nicely, and in case you’re wondering, here’s the key to the scar diagram as best I understand it:
1) Camera went in here. Prostate came out here.
2) Suction and some spritzing delivered through this incision.
3) surgeon’s micro hand tools
4) surgeon’s micro hand tools
5) assistant’s tool(s), delivery route of suture needles to site
6) additional grabber
Five weeks after the surgery my energy levels are still improving, but aren’t quite up to normal yet. I’m not supposed to do any heavy lifting yet. I’m still a bit scattered, but every day I’m a bit more “with it” and have been posting silly crap online again.
If you’re reading this and you, or a loved one, have been diagnosed with prostate cancer, I’m sorry. It sucks. It’s scary. Your options depend on your age and the state of your cancer and your existing health. A friend of my friend Dale, over in Charleston, South Carolina, sent along a PDF from Johns Hopkins that showed a study which said that surgeons who work on a LOT of cases on a regular basis are a VERY good choice…. seeming to fit with the old adage “give a job to a busy man and it will get done”. So, if your surgeon has done 30 of these operations, and you have the opportunity to go to a surgeon who’s done over 1300 of them, I recommend you investigate that high-volume doctor.
If you’re up to it, talk to your friends. Talk to people who have had your surgery. Nobody can prepare you for all of it, but it does help cushion the experience.
My friend Mike, who was diagnosed with a different sort of cancer taught me to be mindful of your loved ones, as they’re silently suffering in ways that you may not realize. So don’t lash out at them when you’re scared, as you’ll only ratchet up their stress levels.
And that’s all I have for now.
I still have months and months of recovery to go through, things that go beyond the healed scars. I wish you only the best and pray that you will find a path that leads you to the next big chapter in your life.