Category Archives: Uncategorized

Yoga Man

Yoga seems to be big in the cancer world. At least I didn’t know much about it until I started reading about surviving cancer. I knew that my Mom practiced yoga back when I was little, and she taught me to sit in the lotus position, but other than that it seemed to be just a lot of stretching. So although I read it was one way to protect against a cancer recurrence, the first mention wasn’t enough to make me consider it, nor were the second or the third. When it seemed to be turning up everywhere I finally, grudgingly added it to that list of things I might try someday.

There are a lot of things I do now that I never would have expected just two years ago. I’ve given up drinking milk and eating red meat. I use soy milk, and I’ve always got a cup of fresh green tea at hand. It was a shock to those who know me when I actually started eating broccoli.

Still, I avoided yoga for quite a while. When I pictured a yoga class, I saw images of an aging flower child chanting at the front of the room while Enya played in the background and incense burned. I didn’t think yoga could do anything for me that I couldn’t get from doing some stretching and taking some regular time to relax. Eventually, though, I had to try it, if only to prove that it had nothing to offer me.

I picked Detroit Yoga using the careful selection process that it offered a Groupon deal at just about the time I had finally decided I should give yoga a try. Surprisingly, this turned out to be a good way to pick a yoga school. There’s no music at Detroit Yoga and no chanting. There is a little incense but it turns out I kinda like that. The school has a seriousness to it that appealed to me right away. And Ashtanga yoga, the kind I practice most often, is serious too. In involves a series of postures, done in the same order each time, with new postures added on and current postures improved under the supervision of a highly qualified instructor. Classes consist of a roomful of people breathing slowly as they work to improve their practice. Talking by the instructor is quiet and infrequent. The learning comes from the doing.

It starts easily and much of it never does feel very hard. Inhale, step your foot to the side. Exhale, bend down to the side and touch the top of your foot. Take five slow breaths while holding that position. Many poses can be done by most people on the first day, if a little clumsily, and much of a yoga practice is spent doing those same things just a little better each time. But they aren’t all easy. For example, while standing, inhale and lift one leg, grabbing your big toe. Exhale, and straighten that leg at an unnatural height while still holding your toe. Now, while your body complains that this is ridiculous and you should put your leg down immediately, take five slow deep breaths. Keep breathing even while the muscles burn, while you start to tip over, keep breathing even if you start hopping comically on one leg trying not to fall down and trying not to injure your classmates. Then, after the fifth breath (in other words four breaths after your body said it was absolutely time to stop), stretch that leg out to the side and hold for another five breaths. Later you’ll let go of the go of the toe and let those tired muscles fight gravity on their own while you take five more slow deep breaths. Tomorrow doing the same thing will be just a little easier, so you’ll hold the leg just a little higher.

I practice four days in a typical week. To avoid having to change clothes after work, sometimes I wear my yoga shorts and shirt under my work clothes, making me feel like a mild-mannered programmer who is secretly Yoga Man, ready to spring into inaction at any time. Harrison and I have joked that Yoga Man is the world’s most useless super hero and we imagine scenarios in which people call on him to be rescued.

“Yoga Man,” they cry, “the building is on fire!”.
“Downward Facing Dog!” announces Yoga Man as he assumes that pose.
“Um, Yoga Man, I don’t see how that’s helping . . .”
“Warrior One!” shouts Yoga Man proudly as he changes to another pose.
“Yoga Man, there are kids stuck in the . . .”
“Warrior Two!” announces Yoga Man.
“Somebody call 911,” says the frustrated citizen in need.

Whoever calls Yoga Man eventually figures out that they’re going to need to put out their own fires and catch their own bank robbers. Yoga Man will be doing his poses and his careful breathing.

After practicing Ashtanga yoga a while, that breathing starts to sneak into other parts of your life. The software you’re writing crashes unexpectedly. Instead of getting angry or stressed, you inhale and cancel the error. Exhale, read the error message. Take slow deep breaths while you find the bug. The puppy pees on the floor. Inhale, pick up the paper towels. Exhale, bend over to clean it up. Take slow deep breaths while you clean. One of your children is trying to kill a sibling over the offense — literally — of looking at him the wrong way. Inhale, get between them. Exhale, redirect the offender. Breathe slowly while watching to make sure the homicide attempt is finished. Gradually, your blood pressure and emotions start to level out, and your relative stability has a slight soothing effect on the craziness of life around you.

So although none of the yoga classes are spent sitting around discussing body energies or chanting, I am learning a lot. I’m learning patience because it is taking me a long time to improve. I’m learning to let go of competitiveness, because I’m far from being the best student there. But mostly I’m learning to breathe and relax during those times that it feels most unnatural to do so. That may not be a cure for cancer, and it may not be a super-power, but it is powerful.

Maybe Yoga Man isn’t quite as useless as I thought at first. He may not run into a fire and drag people to safety, but he can stay calm and do things to help while others panic. I hope I can keep wearing my Yoga Man costume under my clothes for a good, long time, secretly prepared to be calm where there is unrest, to be there and breathe slowly and think clearly when tensions start to run high. I find I can change into Yoga Man at just about any time.

The hardest part may be finding a phone booth.

Stupidity, Irresponsible Stupidity, and Statistics

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.

Harrison's 2011 basketball picture

Go, Harrison Hawk, Go!

Contrary to popular belief, Sarah and I did not name our first child after Harrison High School, where we were high school sweethearts. We just liked the name “Harrison”. We also didn’t name him Harrison after Harrison Ford, although years later both Han Solo and Indiana Jones would become heroes of his. We didn’t name him after George Harrison or William Henry Harrison. We didn’t name him Harrison so we could call him “Harry” after The Boy Who Lived, although Harrison has toyed with the idea of wearing his reading glasses more so he’ll more closely resemble Harry Potter. Really, we just liked the name. All those other things are just happy coincidences. In fact, shortly after he was born I started referring to baby Harrison as “Harold.” It just seemed like a cute name for a bald little baby. I still call him Harold more than I call him Harrison.

I don’t mean to sound disloyal to Harrison High School, of course. I had just about as much school spirit as the next guy. I was always a little suspicious of school spirit, though. I wanted our football team to do well (I’m not sure if HHS had other sports or not) because I knew they practiced very hard and I wanted both the team and the marching band to go to the Silverdome. I never was quite convinced that winning a football game made Harrison a better school or made me somehow superior to students at other schools, but I played along. Playing along, though, never got to the point of leading cheers. Although I was drum major of the marching band, I’m not really a “cheer” guy, so I was happy to delegate the role of leading band cheers to other more enthusiastic (read: fun) members of the band.

I did lead the band in playing the Harrison Fight Song a lot. Now collegiate sports fans may point out that the Harrison Fight Song is extremely similar to “Go! U Northwestern“, the fight song of Northwestern Polytechnics University in Fremont, CA. However, the Harrison Fight Song is completely different, having lyrics that clearly refer to the Harrison Hawks and not to the Polytecnic Protons. I’ve forgotten most of the lyrics, but I remember this much:

“Go, Harrison Hawks, Go! Fight with all your might!
We will have a victory, afternoon or . . . [something]”

I found myself thinking about all this lately while watching Harrison (the boy) play basketball. Sarah and I were with friends on the sideline (is that what you call it in basketball?) shouting “Go Harrison!” and it occurred to me we sounded like we were back in high school. Well, Sarah did. I was still maintaining my mature, reserved persona that is frankly more appropriate now than it was when I was seventeen years old.

I found myself standing there next to the basketball field and thinking about how deprived poor Harrison is destined to be. While I will manage an occasional, inconspicuous “Go Harrison” now and then, I’m just not going to be one of those parents who shouts encouragement throughout the game, yells at the refs, or jumps up and down with enthusiasm every time they shoot a touchdown.

Then it hit me: I don’t NEED to cheer. Due to our fortunate choice of names for the boy, he has generations of cheering sections ready to encourage him as he takes to the basketball gridiron. Just as I delegated leading the cheers back in high school, maybe I can delegate that task now. I mean how many kids have a fight song, a mascot, a cheering section, and cheerleaders with cheers already prepared?

So what do you say, fun people with whom I went to high school? Do you feel like cheering on Harrison one more time? He has a basketball fundamentals class today, and he could really use some encouragement with his field goals.

Harrison's 2011 basketball picture

Harrison's 2011 basketball picture

 

Excel-Lent News

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.

The Orwigs are on WordPress!

It was time. The Blogspot blog has served me well but after helping some people with WordPress I began to realize how much more it could do.

For readers, the only real difference (besides the fact that the look of the site will probably keep changing as I play with styles) will be the change in URL. Simply remove the “blogspot” and the extra period from the address. So replace:

OLD: http://scottontheorwigs.blogspot.com

with:

NEW: http://scottontheorwigs.com

I’ll put a reminder on the old site, as well.

Too Much Information

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 . . .

Coworker: How are you feeling, Scott?
Scott: Very well, thanks. I’ve been up and around all morning and there’s no blood in my [fluid]. Aren’t you going to finish your soup?


But I’m looking forward to giving it a try. I just wanted to warn everyone: If you haven’t been living through prostate cancer (or pregnancy) for the last few months, brace yourself. I’m a changed man.

Boo Who

Boo Boo
Before I had cancer, and before Dad had cancer, Boo had cancer. He was diagnosed with lymphoma about two years ago and given a very poor, short-term prognosis. The vet gave Amy some morphine to make him more comfortable and she took him home to live out his remaining days. Amy’s job at the time was helping people who were being treated for cancer, but this was the first time the threat of cancer had hit so close to home. Little did she know . . .

While Boo’s days were not numerous enough, they turned out to be a lot more than predicted. Amy had adopted Boo when he was already three years old and she was living in her first real solo apartment. She had him while she was starting her career, then engaged, then not engaged, then engaged again, married, established in her new career, divorced, and was finally back in a solo apartment once again. After he was diagnosed Boo hung on through more romance and heartbreak, Dad’s illness, a new engagement, Dad’s death, my illness, and finally through a move to start Amy’s new job and her new life with her new fiancée. Finally, two days after my surgery, Boo was done. He had come through the move with flying colors, loved the new place, and had made friends (including an impressively sized dog) at the new place, but his insides were shutting down once and for all. Amy hadn’t ever had to use the morphine over those two years but poor Boo was clearly suffering now. His struggle ended with a heartbreaking trip to the vet.

I don’t know much about Boo’s background. I did know his full name. When people would hear that Amy had a cat named “Boo” I would point out that wasn’t his real name. “That would be silly,” I would say. “His full name is Boo Boo.”

When Amy and Kage adopted an (extremely) enthusiastic new puppy, he was named Yogi. I don’t think that was a coincidence.

PB250003
Amy doesn’t currently have any kids of her own (I suspect she might steal some of mine sometime and I think the kids would be willing accomplices) but she has had Boo through much of her adult life. Years ago, after single Amy had organized a string of wedding and baby showers, she invited us over for an afternoon of celebrating Boo’s birthday. After the party games had started, we soon realized that we weren’t invited so much to celebrate as to play roles as party-goers in a strange revenge ceremony. Boo didn’t realize it either, of course. He was a nice cat and would never have knowingly participated in such a thing.

So while our expanding family grieves for Dad, and is optimistic about me, and is joyous about Amy’s new immediate family (man, young man, and dog — all big, healthy boys) I thought I should point out that we’re also missing Boo Boo Orwig. We’re glad he was there for Amy through so much and for so many years.

Good News!

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.

Do Not Be Alarmed

Years ago, when a person was subjected to a serious illness, injury, or extreme medical care, they kept that person in the hospital, which was staffed with people who knew what they were doing. Various tubes might be attached to the patient, and various things might ooze from the patient, but those were all taken care of by doctors and nurses. Mostly nurses. But the point was most medical care was tended to by medical professionals.

Nowdays, though, hospitals prefer to “release” patients to their homes “where they can be more comfortable” much earlier. This allows patients to recover from whatever happened to them in a comfortable home setting. It also happens to keep costs down but that’s just coincidental. It does mean that patients with serious holes and tubes and needs are often cared for by family members or, in some cases, by the patient themselves.

In order to give the patients, caregivers, and the hospital’s attorneys a fighting chance, patients are wheeled to the door of the hospital carrying lots of “discharge instructions.” These instructions can go on for pages and pages and can get very specific. Generally, though, most of the bulleted items in the instructions fit in to one or both of two categories:

  1. Things to do that are normally done by a nurse, and
  2. Things you can’t say we didn’t warn you about.

A third category is of reasons you should NOT visit, call, or otherwise disturb the medical professionals. For example, you may see a line like this:

When you [do a regular activity], you may notice blood coming from your [body part which does not normally produce blood]. Do not be alarmed.

I’ve been compliant with all kinds of medical directions, and I have followed printed instructions to do all kinds of unusual and most unnatural things to myself, but I’m afraid this is one directive with which I can not comply. When I see blood come out of certain parts of me, I find that alarming.

I’m sure they created these instructions to reduce emergency room trips and late night calls saying “I’m bleeding from my [very important body part]!!”. I get that. But it’s still alarming. At this point it wouldn’t surprise me at all to see instructions like:

At times, your [important body part] may detach itself and fall down your pant leg. This is normal. Simply apply antibiotic gel and reattach using the paper tape supplied in your post-operative kit.

At the end, of course, are always a list of conditions under which you should call. For example, one sheet says I should call if I experience a fever over 101 degrees F or if I have “excessive bleeding”. The temperature is an example of a nice, concrete indicator I can use to determine if I should call. If the thermometer gets to an exact temperature, I call. Indicators like “excessive bleeding”, however, are more open to interpretation. I don’t like seeing blood come out of any part of me, so my threshold for what I consider “excessive” is probably lower than that of the average doctor or nurse. This morning when I first saw blood coming out of my [body part from which I don’t expect to see blood], I considered that 100% excessive, I became quite alarmed, and I wanted to call.

Fortunately I have a follow-up appointment later this morning so I can tell them about it then.

I wonder what it would take to get a siren for the top of Sarah’s car?

Half Full

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.