I am ending my recent blog silence because I feel compelled to write in support of Newt Gingrich.

Now I can’t say I support the way that Newt has chosen to conduct his personal life. And sure, his combative political style arguably played a big role in bringing us to sorry state of politics that we find ourselves in today. But buried inside of all that combative style (and all that white hair) is Newt’s stance on issues.

Actually, I don’t agree with Mr. Gingrich on some of those issues. For example, international issues. And domestic social issues. And economic issues. Really most issues.

But one issue Newt and I agree about completely is that the United States Preventative Services Task Force (USPSTF) got it wrong when it recommended ending routine Prostate Specific Antigen (PSA) testing. Newt and I both think that was a boneheaded move. It is likely to lead to the deaths of a small but significant number of relatively young men with aggressive prostate cancers. In other words, men like me.

A quick description of the test: “Prostate Specific Antigen” (PSA) is a chemical produced by the prostate in men. Some PSA always leaks from the prostate into the bloodstream. If there are problems with the prostate then blood levels of PSA can increase. So the PSA test is just a blood test.

The PSA test is like a very nonspecific warning light on the dash of your car. When it comes on you don’t know if you’re low on wiper fluid or about to lose your last drop of engine oil. All it tells you is you should pull over and take a closer look.

An elevated PSA doesn’t tell a man he has cancer. In most cases he doesn’t. And if a man gets a biopsy and learns he has cancer, in most cases that cancer is not very aggressive. In many cases an older man can just keep an eye on it, because he’s going to die of something else before the prostate cancer has time to kill him anyway. But some prostate cancer is aggressive, and some of it occurs in men who are not very old. In other words, men like me.

By the time a man in his 40s or 50s has symptoms from an aggressive prostate cancer, it has probably already spread. While it’s still in the prostate that cancer is unlikely to cause any symptoms and it probably won’t even show up on a digital exam. An elevated level of PSA is probably the only indicator there is a problem. So if we discontinue the PSA then men are going to die when they could have been saved. Men like me.

The argument of the United States Preventative Services Task Force goes like this: Most elevated PSAs don’t turn out to be cancer. Elevated PSA results can lead to biopsies and biopsies can sometimes cause infections. If the biopsy is positive, too many men choose to treat their cancer more aggressively than necessary, risking the side effects of urinary incontinence and impotence. So better just not to do the blood test in the first place. That will eliminate the risk of people doing the wrong thing with that information.

As a psychology graduate student I learned a lot about statistics (I would venture to say I am in the 99th percentile of statistical analysis skills), but all the reasoning needed to see through the task force’s bad decision is learned in a typical lecture everyone hears at least once during their first year of college. At the beginning of a lecture, the professor will point out (for example) that statistics show crime is highest in areas with the highest concentration of churches. At this point, the members of the Preventative Services Task Force apparently stood up and left the lecture, so eager were they to issue a statement that churches should be banned immediately. The point of the lecture, of course, turns out to be that correlation does not equal causation. Although churches and crime are correlated, they are most likely unrelated to each other but instead are both correlated with population. The deeper lesson is that a superficial view of statistics can lead to stupid conclusions if one attempts to consider statistics out of the context of everything else that is known. An educated person hears of a correlation like that and says “that doesn’t seem right — what else might be going on here?”.

In this case, I wish the Task Force had paused and thought, “Letting cancer grow without even checking to see if it’s the dangerous kind? That doesn’t seem right. What recommendations could we make that would reduce over-treatment but still let men make informed decisions so that those with aggressive cancer can live?”. Unfortunately they charged stubbornly ahead. They ignored entire disciplines of knowledge, didn’t include a single expert on prostate cancer, and made a stupid recommendation that will cause some men to die. Men like me.

My advice:

• Get tested. The usual recommendation is to wait until age 50. Since I was diagnosed at 43 and have no family history I’m aware of, I think you should do it sooner.
• If your PSA is elevated, don’t freak out. I kinda did freak out and it turned out to be with good reason. But for most people it’s probably not cancer.
• If you get a biopsy and it shows cancer, don’t freak out. If it’s just a little bit of Gleason 6 cancer (the most common kind) you’ll probably die of something else even if you do nothing to treat the cancer. But talk to somebody knowledgeable — somebody without a stake in your decision — to help you decide.

I can never forgive the United States Preventative Services Task Force for what they’ve done. Too many men already avoid this simple screening. Even if the USPSTF changes their recommendation now, too many men will not get that message and will use this controversy as a reason to skip the test. Some of those men will likely die when they could have been saved.

I also have a lot of trouble forgiving the USPSTF position that since men like me don’t show up strongly enough in their aggregate statistics, we don’t matter and can simply be allowed to die. It’s hard not to take that personally.

And finally, I don’t think I can forgive the USPSTF for making me agree with Newt Gingrich. To me, that’s the strongest indication of all that the USPSTF is very, very wrong.

We had the first follow-up appointment with the surgeon on Monday. He was pleased with my progress. My first post-op PSA came in at either “0.1″ or “<0.1″ depending on who (and when) you ask. The secretary on the phone said it was “less than 0.1″, which is exactly what I wanted. Unfortunately it’s entered into the records as just “0.1″, which is not as good. Remember in elementary school when you said that the difference between “=” and “<” and “>” didn’t matter, and your teacher said it did? She was right. In my case “=” means I have a low amount of cancer in me, and “<” means much less or maybe none at all. Nobody seems to have the original value so I’ll just have to wonder until the next test, which scheduled for July.

It doesn’t matter that much to the surgeon because can add me to his “successful surgery” stats on his Excel sheet either way. As with baseball players, salespeople, and bookies, statistics are very important to surgeons. They keep track of how many surgeries they’ve done, how many removed prostates had “clean margins”, and how many patients had side effects. Given my clean margins and my progress on side effects (i.e. effectively none) my surgeon called me a “poster boy” for this type of surgery. With humility (which I’m learning is uncharacteristic for surgeons) he suggested that my age probably has as much to do with my recovery as his skill. Still, I’m very sure I picked the right guy.

There could still be microscopic tumors in me somewhere that just aren’t big enough to produce significant amounts of PSA. Thats called micrometastases, and the chances of it are in the “worrisome” rather than the “terrifying” range. Due to the fact that my higher-grade cells had an opportunity to enter my bloodstream, it appears my risk of the cancer having spread is in the range of 5-10%.

So I can go about my life acting as if I’ve been cured. Maybe for forty years or more. If my PSA starts climbing again then I’ve got stage four cancer and my time is much more limited. There are no sure things but it feels much better to know my remaining lifespan — however long or short it turns out to be — will most likely be measured in years rather than months. That feels like an incredible gift. Whatever I have to thank — prayer, medical science, luck, or maybe all three – I am very thankful.

But then it’s not Thanksgiving now, is it? By the calendars of many Christian churches it’s Lent, which is a time I hear many friends and relatives talking about things they are giving up. Some actually fast during Lent, although I recently learned that in some churches people can eat a full meatless meal plus breakfast and lunch as long as they don’t add up to a meal. By that standard I fast on most days. Other people give up things other than food, even intangible things. That’s how I feel now. Although I have been given back at least part of my life, some things will be gone for good.

So what am I giving up? Namely:

1. My remaining delusions of immortality. Those delusions were damaged 15 years ago with the Guillain-Barre Syndrome. There’s nothing like telling your leg to move, and having it respond with “No thanks, I’m good right here,” to shock a twenty-five year-old guy into understanding that his body is fragile. But cancer drove that point home once and for all.
2. The feeling that I have plenty of time to help my kids become happy, healthy adults. I’ve got to get moving on that, cancer or no cancer. I’m not sure how to communicate much wisdom to a boy who is always distracted by video games and T.V., a girl who mostly wants to talk about horses, and twins who are very focused on the here and now, but I’m going to take every opportunity I can to teach. They need to be completely prepared to make all the right decisions in their lives by the time they turn 18, or by the time I die, whichever comes first.
3. The expectation that I’ll get to enjoy retirement with my wife. I sure hope so, but I truly understand now that will be a gift, not an entitlement. I may not last that long, and/or Sarah may never retire. We’ll see.
4. The belief that my kids will be young and healthy forever. Both Harrison and Shepard are at risk for prostate cancer. All the kids appear to be at increased risk for various kinds of cancer. I don’t want them to live in fear, but I want them to be on the lookout and get all the tests they can. I want them to do all the right things, which leads to . . .
5. The confidence that if I just do everything right, everything will be okay. Life makes absolutely no guarantee of fairness and people aren’t given credit for effort. Eating right, exercising right, and living right helps but not always. Regular checkups can miss things. Sometimes both belt and suspenders may fail.

The difference between all of these things and the things that most people give up for Lent, of course, is that self-denial for Lent is voluntary. That’s the point, I think. The losses I’ve described here were forced on me so I can’t claim a pure motive to seek enlightenment. But whatever the motive, I’m enlightened. And I won’t be getting those things back next month. They’re gone for good.

As is that test result, apparently.

First of all, I should let you know that this post deals with adult issues. But don’t get your hopes up.

I’m recovering well. I’m in much less pain and my robot holes are already getting hard to find. My first post-op PSA is on Wednesday, March 9th. Really, most of the other tests up until now have been about predicting the outcome of that test. If there is no detectable PSA then I’m okay until the next test in a few months.

I’m still a little swollen, a little sore, and I’m low on energy. I’m still not allowed to lift anything (like Twinlets, for example) but I’m planning to return to work on Monday. Fortunately I’m a programmer so I sit for a living. I can do that at work about as well as I do at home.

I do have one new problem that may cause trouble at work, though.

I am a man who is comfortable hearing and talking about women’s private parts. That’s not the problem, but it’s related to the problem. I didn’t start out so uninhibited. Up through my twenties I would become very uncomfortable at the mention of “female issues”. Then came the human sexuality psych classes, which included details of all the parts and the roles they play. It wasn’t as exciting as you might think. Once orgasms are broken down into chemical reactions and diagrams, the mood is pretty much broken.

My major desensitization to female bodily functions, as for many men, came with the births of our children. When our first child was born and we went through the prenatal classes and appointments, I slowly became used to talking about pregnancy-related subjects. In fact it was pretty much all Sarah and I could talk about for a while. We must have been a little frightening to the squeamish.

After our first child was born and Sarah was out of commission, the pregnancies were outsourced to two gestational surrogates. I had to get past my previous boundary of injecting my wife with hypodermic needles. Sticking Sarah with needles had not been allowed before, and all of a sudden I was supposed to be an expert. I was also supposed to be comfortable with being led to a little room as if it was a dressing room at The Gap, but instead of khakis to try on I was given a little plastic cup (I actually remained terribly embarrassed by that part of the process). Most importantly I had to get used to experiencing pregnancy and childbirth with women with whom I had friendly but not intimate relationships. The surrogates were entitled to their privacy but those were my kids in there so conversational lines got blurry.

The result of all that is I’m not one of those men who blanches when caught in a conversation among women about female issues. They’ll sometime apologize, saying “I’m sure Scott doesn’t want to hear this,” but then I’ll join in with stories of my own. If I’m not careful I might even make some new moms blanch. Having experienced pregnancy three times with three different women, I’ve got some stories of my own.

As I’ve been thinking about returning to work, it occurred to me that my recent preoccupation with prostate cancer may have broken down my sense of what male parts and functions are okay to talk about. Suddenly urinary continence and erectile function and all the private boy parts are regular topics of conversation. Most of my adult interactions, in fact, have been with medical professionals who want me to talk about such things.

I’m hoping to rejoin the non-prostate-cancer-focused world in the coming week, but I’m worried: Can I re-learn what is appropriate and not appropriate to discuss? Will I make others uncomfortable? I’m concerned I might have a conversation like this:

Coworker: How are you today, Scott?
Scott: Great! My [body part] was really [adjective] this morning even without [pharmaceutical product]!
Coworker: I’m going to HR.

Or . . .

The post-operative pathology report is done and the news is good. You may remember we wanted clean margins, nothing in the vesicles, and nothing in the lymph nodes. That’s exactly what they found. Other good news was the Gleason score didn’t increase and they found that only 5% of the prostate was cancerous. Usually, once the prostate is removed, sliced, and examined they find more – and more dangerous – cancer than could be seen from the extremely small biopsy cores. In my case, one of those cores was 100% moderately agressive cancer. We were warned to expect the post-op report would look worse than the biopsy. Now it appears the biopsy doctor just had remarkably good aim.

The most immediate implication of this report is no follow-up radiation appears to be needed. After all, where would they aim the thing?

This new has let us relax a lot. Of course there is still cause for concern. For one thing the peri-neural invasion meant those dangerous grade 4 cells had blood vessels available to ride out of the prostate. So we’re in a similar position to the one we face when we find a door to our house has been left open. Did one of the cats get out? The only way to know for sure is to search the house counting ears (we look for exactly eight). You can almost never find all the cats at the same time, though, so we end up having to wait and hope we see each of them soon.

The test for escaped cancer cells will be the follow-up PSA tests. The first one is in about three weeks. I’m fairly confident the first couple of tests will show very low or undetectable PSA. Any new cancer cell colonies would probably be microscopic at this point. Most important is that over time we don’t want to see the PSA rise at all, which would indicate that microscopic colonies of prostate cancer cells were turning into real tumors. At that point the long-term prognosis would not be good.

Another risk factor is my age. Conventional wisdom has it that cancer in “young” guys like me tends to be more agressive. I don’t know that there’s much data to support that, though.

Finally, the rate at which my PSA was rising (the “velocity”) before diagnosis was alarming. I don’t put as much stock in velocity as I do in the post-op pathology, though. The pathology data is much more concrete.

So if my age, perineural invasion, and velocity are not taken into account then the nomograms show a chance of recurrance that is a little less than 10%. I’m guessing those extra factors put the odds somewhere over 10%. That’s still much better than the odds we thought we were facing just a few weeks ago and it’s enough to let me plan a future for my family that still includes me.

Oh, and while I don’t want to be overconfident about it, it appears side effects aren’t going to be a significant issue at all. I feel a little guilty saying that because so many men struggle for months or even years. Being diagnosed with an older man’s cancer at age 43 has sucked, but one consolation is my recovery seems to be taking only days.

Ironically, the removal of my final tube was delayed this week because I was too continent. Apparently the internal plumbing, which is severed and reattached during surgery, was still a little swollen. They left the catheter in so I didn’t fill up like a water balloon while we waited for the tubes to open up. It’s scheduled to come out today.

So what’s next as I acclimate to the lower-grade stress of follow-up PSA tests? Making my body as inhospitable as I can to any cancer cells that may be trying to set up new homes. I’ve already been losing weight and excercising and I’ll keep that up. I’m also making even more significant dietary changes, pretty much eliminating red meat, limiting meat in general, and eating foods that have been shown (in actual peer-reviewed research) to be associated with lower incidence of cancer. Unfortunately that means pretty much a complete reversal of my farm based meat-and-potatoes diet. Fortunately, one of the recommended foods is cooked tomatos. Tomato sauce is one of my favorite foods. I could literally eat it every night of the week.

And fortuately that will start tonight, when the Orwigs go out for pizza to celebrate. The Twinlets still won’t be able to sit on my lap at Cottage Inn due to Daddy’s “boo-boo”, and I’ll have to be careful of my fluid intake. But that’s fine for now. I’ll take it.

I feel old. I’m sore, I shuffle around the house slowly, and I spend my time concerned with bodily functions that used to take care of themselves. But I feel much stronger. My odds look somewhat better than they did before but not dramatically better. I think I’m just feeling relief that the worst of the cancer is out of me. There could still be a dangerous amount in there, but the odds are we dealt the cancer a fatal blow, and for the first time I’m able to enjoy the odds that I will live instead of being fixated on the odds that I will die.

I hear that’s a very typical reaction. I’ve spoken to other prostate cancer survivors who felt the same way after surgery. My surgeon had no surprise or irony in his voice when he walked into my hospital room the day after the surgery, found me hunched over in pain, multiple tubes hanging off of me, and he said “You look the best I’ve ever seen you.” He was right. The other times he saw me I was terrified. Now I feel that while the war continues, an important battle was won. My wounds were earned in that battle and I do not regret them.

Technically the robotic-assisted prostatectomy is a very high-tech type of laproscopic surgery. I was always suspicious of laproscopic surgery because it seemed like the surgeon was just adding a degree of difficulty to show off, like building a ship in a bottle. Why not try it blindfolded next? It’s called “minimally invasive” surgery but it still feels pretty darn invasive. They cut multiple holes in me. Then I spent four hours on a table, intubated, tipped so my feet were higher than my head, while robotic arms reached inside of me, cut parts of me out, and put other parts back together.

Still, I’m completely sold. I woke up in agony but I have literally been improving by the hour. I take a nap and I wake up feeling better. The recovery is remarkable. The surgery team members are the real heroes of the battle, but the da Vinci robot is an amazing tool, giving the surgeon superhuman vision, dexterity, and precision.

I didn’t actually want to meet the robot but I did. They wheeled me into the operating room and there he was, his spider-like arms folded against him as he lurked against the wall. “Hello,” I said, and everybody laughed. And then moments later (it seemed) I was waking up in the recovery room.

Some specifics:

The Cancer
We’re awaiting the pathology report on the prostate, surrounding tissues, and lymph nodes. During the surgery they saw some tissues outside the prostate and a lymph node that looked suspicious but preliminary tests suggested they were not cancerous. So that’s good. The doctors didn’t see any evidence of an “extension”, so that’s good, too. Ultimately each of those things will just be rough predictors, though, of the all-important PSA tests to come. With the prostate gone there shouldn’t be anything left to make PSA. If there is significant PSA in my blood then something must be left making it. We don’t want that.

The Pain
At first I was miserable. Anything that used my abdominal muscles was impossible. On my first walk at the hospital I accidentally coughed and my knees almost buckled from the pain. Hour-by-hour I improved, though, and now I’m still sore but functional. If improvement keeps up at this rate I should be feeling pretty much okay in a couple of days.

The Swelling
I gained (and am now losing again) a belly. On Thursday when I stood up I looked and felt pregnant. That’s going away rapidly. I am still several pounds heavier than when I arrived at the hospital, which is amazing considering I went a couple of days without eating.

All that loose fluid is looking for a place to go. In a male, there are places. I’m told not to get used to it. Alas, that swelling will go down, too.

The Catheter
I woke up from surgery feeling like I was in one of the tanks from The Matrix. I had two different IVs, a tube running though my abdomen to my bladder, and yet another gruesome, parasitic thing called a “Jackson-Pratt drain” that I didn’t even discover until hours later.

They had to put in a regular Foley catheter (named after it’s inventor, Damian Catheter) during the surgery. Fortunately they took that catheter out before they woke me up. This urology practice leaves most patients with a catheter that passes through a small hole in the skin. So I do have a bag for a few days, but from what I hear it’s a much less irritating experience to have the tube running out my belly than than the alternative.

The Incision
There is only one hole big enough to be called an “incision.” That’s the one they had to make a little bigger to actually take the prostate out in one piece. The rest they call “ports”, which is apparently what doctors say instead of “holes we made in you.” I literally have lost track of how many ports they made. None of them is very impressive, though, so when I’m done healing I expect I’ll look like I was stabbed repeatedly will a ball-point pen.

The Side Effects
You probably know the two main side effects that can happen with prostatectomies. Without going into detail, I’ll just say that early indications are quite favorable on both fronts. Hopefully the combination of my relative youth and the surgeon’s skill will mean I get out of this with everything functioning properly.

The Surgeon
Dr. Hans Stricker at Henry Ford Hospital’s Vattikuti Urology Institute did the surgery. Dr. Stricker came recommended by people who have worked with him and the staff at Henry Ford West Bloomfield seem to worship him. He’s an impressive, patient, and compassionate guy.

We’re lucky in southeastern Michigan to have more than our share of top-notch surgeons. Dr. Menon and Dr. Peabody were also recommended at Henry Ford. At the University of Michigan Hospital we met with Dr. Brent Hollenbeck and we were impressed by him. And a well-known and highly-recommended surgeon at the U of M is Dr. David Wood. His name came up often as we were looking around.

The Kids
They all seem glad I’m home. Harrison is concerned but not overly so. Grace has the occasional question and seems easily satisfied with the answers. The Twinlets know that Daddy has a boo-boo and he can’t pick them up for a little while. We’ve got help from Grandma and others, so the kids’ lives are going on pretty much as usual.

The Home Nurse
Sarah excels at whatever she does and this is no exception. We’ve made a few mistakes in tube management and “port” dressings. By the time I’m all healed, though, we’ll be experts and Sarah will be ready to do this professionally. But she won’t.

So the bottom line is I may still have cancer but we’ve probably beaten it, I’m still worried but less so, and I do feel old, but like Benjamin Button, I seem to be getting younger by the day.