Scott On the Orwigs

We've moved to "http://scottontheorwigs.com"

2011-04-20T21:41:00.000-04:00

It was time. This Blogspot blog has served me well but after helping some people with WordPress I began to realize how much more it could do. So I moved to a "real" domain (no ".blogspot" in the address) and switched to Wordpress. It's much better.

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

See you there!

Too Much Information

2011-03-05T15:30:00.003-05:00

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

2011-02-20T11:34:00.000-05:00

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.

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!

2011-02-18T10:35:00.000-05:00

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

2011-02-15T09:46:00.000-05:00

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:

Things to do that are normally done by a nurse, and
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

2011-02-13T13:20:00.000-05:00

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.

Paging Doctor Octopus

2011-02-08T13:31:00.000-05:00

The surgery is tomorrow (Wednesday). I should get a call today between 1:00PM and 5:00PM to find out exactly what time. So it's a little like waiting for the cable guy, but not quite that bad. It's not like they told me to lay myself out on a table, make my own incision, and wait for them to come by sometime during the day. Actually tomorrow's service should be well above the average cable company. I'll be vacationing at the Henry Ford West Bloomfield facility. I understand it has been transformed into a gorgeous place. It will all look the same to an unconscious person, of course, but hopefully Sarah and my Mom can enjoy the waiting room. If there are no significant complications I can expect to be released to the care of Nurse Sarahjane the next day.

If you're the exceptionally persistent, sadly inefficient kind of thief who scans random blogs looking for news that the resident will be away for prostate surgery, keep moving. The kids, cats, and house will be well taken care of while I'm gone. We've grown an extended family of friends, sitters, and drivers, so the kids will be taken care of, busy, and having a good time. Also I'm a big home automation geek so if someone tried to break in I would know about it and have their picture and probably their social security number before they even left.

I'll be having the robotic "da Vinci" surgery that's all the rage now. I wasn't so much committed to the type of surgery as I was to having a skilled, experienced surgeon. The surgeons who were recommended in this area (and we have more than our share of good ones at Henry Ford, U of M, and probably elsewhere) all appear to use the robot. So I get to have surgery via a tool that can truly be called a "gadget", albeit a very expensive one (that's the best kind of gadget, BTW).

This type of surgery was written up in a Time magazine article in January. The surgeon they interview is Dr. Menon of Henry Ford Hospital. My surgeon trained with and works with Dr. Menon. This is the link:

http://www.time.com/time/specials/packages/article/0,28804,2032747_2033111_2033133,00.html

Our best news recently was that my bone scan on Friday was clear. Odds were good that it would be clear, but if it had not been the surgery would likely have been cancelled and I would have moved immediately to a later part of the prostate cancer treatment process. Just the fact that the doctor thought it was necessary (it's not usually done in people with PSAs like mine) scared Sarah and me.

We are still scared, of course. This will be major surgery, even if it is done by a fancy robot through a bunch of little holes. After that, there is a less-than-50% but still frightening chance that the cancer has spread. The major indicators of that will be:

What the surgeon sees during the surgery. It's unlikely but possible that he would see an extended tumor or enlarged lymph nodes.
The post-op pathology report, expected about a week after surgery. We want clean margins (no cancer on the edges of where they cut), nothing in the seminal vesicles (if cancer is living there it is more likely to be living elsewhere, too), and nothing in the lymph nodes (that's a favorite route to the rest of the body).
PSA tests starting four weeks after surgery. The PSA should be undetectable and stay that way.

And obviously, I want to wake up to the news that he was able to spare as much nerve as he expected!

So this is likely my last post before Doctor Octopus (Sarah's name for the bot) does his thing. I'm hoping Doc Ock takes it easy tonight and shows up tomorrow ready to do his best work.

What Lies Ahead (?)

2011-02-02T14:00:00.001-05:00

The meeting with the first surgeon scared us even more. But surgery is scheduled for February 9th. That's much sooner than we expected. About a week later we should have the post-operative pathology report, which will either boost our confidence or dash our hopes.

We were hoping for a cocky surgeon who would say "No problem. I can do this. You're going to be fine." Instead we got grim looks and no eye contact when we asked about prognosis. Still, this surgeon does a lot of these. We liked him and trusted him. Although we're going for a second opinion with another surgeon tomorrow (Thursday) morning, we think we've found the right guy.

As for what we heard:

On one hand, my highest PSA of 6.4 (most recent was 5.2), is only moderately high in the prostate cancer world. You would expect something in the 20s or more if the cancer had spread. The bad news is at age 43 my PSA should be much lower. So my PSA is higher than it looks. That means the online calculators ("nomograms") that show my odds of 10-year survival at 89% don't really apply. If I make a completely unscientific adjustment of my PSA to a 12, that takes my odds down to 84%. Still not bad, but scary. And I'm not done.

Given the PSA, the surgeon wanted to do a bone scan to see if any cancer is visible in my bones. A positive bone scan would be very bad news. Already stage 4, my cancer would most likely be inoperable and incurable. The bone scan is Friday (the 4th). I probably won't know the results until shortly before surgery.

The next troubling part of my case is the "Peri-Neural Invasion" (PNI). Cancer cells have moved into the nerve areas within the prostate. The nerves come with blood vessels, and that's a route out. It doesn't mean it has spread but it might have. As the doctor said, "We just have to pray we got it in time."

Also troubling is the amount of cancer found in the biopsy core with PNI. The entire needle (100%) was cancer. Fortunately 80% of those cells were the less aggressive Grade 3 cells. The rest were more aggressive Grade 4 cells. It could be the biopsy doc just got lucky and hit a tumor right on. Or it could be there's a big tumor in there that could extend past the prostate "capsule". That would take about 10 points off my odds.

Finally, that scary biopsy core was on the apex, right near the seminal vesicles (kids, ask your parents what those are for). If it's in the seminal vesicles then the cancer is living out of the prostate and free to enter the lymph nodes. In that case take off another 15 points.

As for side effects (which are low on our list of priorities right now) things still look pretty good. Continence is a matter of re-training a muscle. The other side effect depends on the nerves (for function, NOT sensation). The nerves that give the orders to inflate the lifeboats run along the outside of the prostate. They'll have to take out most of the nerves on one side due to that 100% core. But the other side will be mostly intact. It may take months or a year for things to be functioning, but at my age the odds are good, and if you watch T.V. you know there are things that can help. If everything else goes right that will be important. If not it won't really matter.

So the high-stakes events coming up are:

Second opinion consult with another surgeon Thursday AM. We don't expect better news and we're apprehensive it will be worse. So far everything has been worse.
Bone scan Friday. That NEEDS to be negative. Odds are good, but the odds have been in my favor all along and the bad news just keeps coming. If it's positive surgery will probably be cancelled.
Second opinion on my biopsy slides. I'm not even allowing myself to fear a different result.
Surgery - I want to wake up to good news. We don't want them to see anything scary and we want them to save as much nerve as possible.
Post-op pathology report - About a week after the surgery. We want clean margins, no cancer outside the capsule, nothing in the seminal vesicles, and nothing in the lymph nodes.
Post-op PSA test - About four weeks after surgery. If there's any measurable PSA it suggests there are still prostate cells in me somewhere. And they're obviously not in the prostate. So that would be bad.
Follow-up PSA tests - Every four months for years.

Bad news at any step could change what happens after, of course.

So now you know what we're hoping for. It's going to be a LONG month or so.

A couple of suggestions

2011-02-02T12:23:00.003-05:00

First, if you're a man, get your PSA checked at least once a year. If your doctor doesn't do them, find another doctor. If you're over 40 and your doctor says they don't start PSA tests until 50, say you know a guy who's 43 and has a tougher-than-usual case of it.

If your PSA is at all elevated get a biopsy. Don't let them scare you away from that. Done by a good doctor it hurts less than having a cavity filled. If you get a negative biopsy, great! If the PSA keeps rising, though, get another one. It's probably nothing. But you need to know.

Really, this could save your life. If there's cancer in there and you catch it early odds are very good you can be cured with minimal side effects. With every passing week your odds go down.

Second, please check out the blog of my friend Amy Rauch Neilson. Amy is a great writer and mom who is currently going through the worst of treatment for her second round of breast cancer. Her blog is called "It's in the Genes." Miserable as her situation is right now Amy maintains an inspiring positive attitude. If you like the blog, please consider subscribing to it via the box on the lower right. Amy is trying to get a publisher for her book about the genetic condition that puts all the women in her family at risk. The more subscribers she has, the more likely a publisher will pick it up.

Cancer

2011-01-30T13:44:00.003-05:00

I think most readers here at this point have been following my progress on Facebook, but for those who haven't or those who want more detail:

It's cancer. I got the dreaded call on Tuesday and have been in anxiety/panic mode ever since. The urologist who did the biopsy called me and told me this is a "garden variety" prostate cancer, moderately aggressive, and the kind they treat and even cure regularly. I asked if he could tell anything from the biopsy about the chances the cancer had spread, and he said no but statistically it was unlikely. Now as I have read the odds since (they actually have something called the Partin Tables that break the odds down by PSA and Gleason score) it's not that unlikely to have spread. In fact, the Partin tables say there is a significant chance it has gotten out of the prostate capsule, although even in that case a skilled surgeon can sometimes get it all or it can (maybe) be cleaned up with radiation.

The doctor said I should explore all my options, but at my age and with this more aggressive form of the disease (Gleason 7) he would advise that I:

Treat it. With the least aggressive prostate cancers (Gleason 6) and older men, sometimes the patient can make a choice just to "keep a close eye on it". The odds of it actually spreading to the point of being life threatening before the man dies of other more-typical things are low enough that it's not worth risking surgery, radiation, or the side effects of either. But that's not true for a 43 year-old with a Gleason 7. The doc said that untreated, the chances of it "causing me problems" in my lifetime are quite good. In other words: It will likely kill me if I don't do something.
Get the prostate removed. I'm learning this is something of a religious debate in the prostate cancer world. There are those who strongly prefer surgery (the "get this out of me now!" crowd - of which I am currently a member) and those who prefer radiation for various reasons (lower risk of side effects, similar outcomes, etc), and those in-between. There is also androgen-blocking therapy (drugs that limit the production of testosterone can limit prostate cancer cell growth and maybe even kill early cells in some cases), and chemotherapy, which is really only useful against the most aggressive types of prostate cancer. This doctor said I should explore my options and the decision was up to me, but his advice was to have the prostatectomy.

I've since had advice to do the prostatectomy from two other doctors we know socially. I haven't really given the radiation oncology advocates equal time yet but I will.

On Friday afternoon I visited the U of M Hospital records area (basically a nice woman with a web browser and a printer) and got my actual pathology report. The good news is my Gleason 7 (moderately aggressive) is made up more of less-aggressive 3 cells than of more-aggressive 4 cells. So I initially felt better on reading the results. But the results also show that one of the twelve cores is actually pretty scary in a few ways. Cancer is in a nerve area, which can be a route for it to spread. It also suggests a tumor that goes right to the surface and maybe beyond. And it appears to be mostly in the apex of the prostate, which is where positive margins most often occur.

Fortunately, last week I was able to get an appointment for Monday the 31st (23 hours from now) with an excellent surgeon at Henry Ford's Vattikuti Urology Institute. I'm really looking forward to hearing what he has to say. My hope is he'll be able to soothe our anxieties, but I don't know. We'll see.

Calm is of course a relative term for me now (and probably for the rest of my life). The best survival outcomes, for biopsies better than mine, are in the 90% range projected over years. As cancers get more aggressive and if the surgery leaves some behind those numbers drop sharply. So this is very scary.

I'm looking forward to asking my questions tomorrow . . .

Waiting by the Phone

2011-01-23T17:38:00.010-05:00

The title doesn't really hold up anymore, of course. Nowadays the phone is waiting by me wherever I am. But you can bet I'll answer it quickly. This week would be a telemarketer's dream except that I'm going to have zero patience for calls that aren't about my prostate biopsy results.

I had the biopsy on Thursday and it sounds like it really will be Thursdayish before I get the results.

The biopsy itself wasn't nearly as bad as it could have been. The anesthetic shot hurt a little, but it was more "OW!" pain than the "AHHHHH!!" kind of pain I was expecting. After that, although it was still a humbling procedure, there wasn't any pain. Well, until the anesthetic wore off as I followed Sarah through Ikea. That pain really put a damper on the joy of picking out exactly the right comforter.

An ultrasound probe is used to guide the needle(s) of a biopsy. Prostate cancer can't usually be seen on a regular ultrasound, but the fact that none was seen gives me some comfort. If there was something really advanced and ugly in there it might have shown up. The fact that the prostate looked about normal-sized was mixed news. The good news is I don't have a cancer in there so advanced that it's making the prostate lumpy and misshapen. The bad news is the "normal-sized" observation probably rules out benign prostatic hyperplasia (BPH), which was probably my best bet for explaining the high PSA numbers without cancer. To get my PSA numbers with BPH alone the prostate would have to be considerably enlarged.

We're hoping to get news of a negative result of course. By negative I mean positive news (negative in the cancer world is positive). But that hope is more complex than you might expect. People are sometimes surprised to hear that under some circumstances I'm actually hoping for a positive result for cancer. Here's why.

Prostate cancer can't usually be seen via ultrasound, so taking the core (needle) samples involves a bit of luck. It is possible to have cancer in the prostate but miss the cancer with the needle. Some men will have multiple biopsies before they finally get a positive result. Meanwhile their PSA continues to climb, indicating a worsening cancer. Sometimes the cancer isn't actually found until the PSA has risen to a level that suggests it has spread.

So here's some possibilities of the news we might get, put roughly in order by best news to worse news:

1) Negative biopsy followed by a falling PSA level. If the biopsy is negative we'll probably do my next PSA check in a few months. If that is dropping, or even if it is staying steady over a period of years, we'll be able to relax a lot with the knowledge that it probably isn't cancer. That would be WONDERFUL news.

2) A few of the twelve cores positive for a low-grade cancer. This would allow us to get the thing out. If cancer is in just a few cores and it doesn't appear to be aggressive, the odds of it having spread outside the prostate are low. And if it hasn't even spread much in the prostate itself then odds are good I would be eligible for a "nerve sparing" prostatectomy, which would greatly reduce the odds of the dreaded side-effects of surgery.

3) Negative biopsy followed by PSA tests that show rising PSA. If PSA in the blood rises steadily, or even worse if it doubles every year or so, that is highly suggestive that there is cancer in there. But no surgeon is going to remove a prostate based on PSA scores. You've got to show some cancer to buy yourself a prostatectomy. Some men are stuck in this loop of high PSAs and negative biopsies for years, and because the cancer can hit a critical mass, start growing rapidly, and escape the prostate relatively quickly, the cancer can start to spread before it is found. We really don't want it to spread and don't want to have to worry about it spreading for years.

4) Lots of cores positive for cancer. If it has spread all over the prostate then odds are higher it has spread outside of the prostate. It would also suggest the nerve-sparing surgery would be more difficult (but not impossible) to do.

5) Aggressive cancer in some cores. That would be bad news. No way to tell if it had spread outside the prostate or not.

6) Aggressive cancer in lots or all of the cores. That would be scary news. I really hope that's not the case.

So we're hoping for #1, but of course if the biopsy is negative we won't know for months (at best) if we're in a #1 or #3 situation. If the biopsy is positive we'll have some idea of staging but won't know if it has spread until other tests are done.

Either way, the news this week will be but one step in a longer journey.

Prostate terror

2011-01-17T14:05:00.010-05:00

My first post here in a long, long time will be a simple one about the cheery topic of prostate cancer. When I started this blog I saw prostate cancer as an old man's disease. In the intervening years (a) I have learned it can strike (and strike hard) at younger men, too, and (b) I have gotten older. So here I am. Mainly this post will be a way to get everyone who has asked up to speed in advance of Thursday's biopsy and -- more importantly -- the results.

So here's the scoop in Q & A style. Unlike most of my posts, in this case the As are based on actual Qs.

What is a prosrate?

A prostate (note the lack of an 'r' in the word -- common mistake) is a part found only in the male model of the species. It is wrapped around the urethra. It actually serves a reproductive function but I'll let you have that discussion with your mother or father. What's pertinent here is that sometimes it gets bigger. That can generally be due to benign (i.e. not cancerous) prostate hyperplasia (BPH), prostatitis, or prostate cancer. When it gets bigger it can cause problems with the flow of liquid through the urethra (i.e. difficulties peeing). A bigger prostate also tends to produce more PSA.

What is PSA?

PSA stands for Prostate-Specific Antigen. It's a protein that only prostate cells produce. PSA actually has a reproductive function but that is of absolutely no value whatsoever to me now. Some BPH naturally gets into the bloodstream. However, if the prostate is under stress it may "leak" PSA at a higher rate. And if cancerous prostate cells have escaped the prostate and lodged themselves in bone or elsewhere in the body, the PSA level in the blood can go quite high.

All men 50 or older should have their PSA level checked annually. A high number or even a low one that is rising can indicate BPH, prostatitis, or cancer.

What is a high number?

PSA is usually reported as nanograms per milliliter of blood (or ng/mL). Generally numbers above 4 ng/mL are considered high enough for concern and possible biopsy. Sources differ, but "they" say a man in the age range 50-60 with a PSA between 4 and 10 has about a 25-30% chance of having a positive prostate biopsy for cancer. Above 10 ng/mL the odds start to go higher than 50/50 that it's cancer. From my layperson reading of people describing their cases anecdotally, it sounds like above 20 you really need to get on it right away, because there is a more significant chance that PSA is being produced by prostate cells that have moved to other parts of the body.

Fifty? But aren't you . . .

Forty-three. Right. So at my age the "high" category lower limit is adjusted downward to 2.5 due to the fact that prostates (and therefore PSA levels) tend to increase gradually as men age. I can't find any references to the the 10 or 20 limits being lower for a younger guy but that would make sense. I just don't think there's much if any research on it.

Unfortunately my PSA has been above the 2.5 level 40 year-old limit since we started testing it when I turned forty.

But didn't you say men should be tested at age fifty? And aren't you . . .

Forty-three. Right. But testing is also recommended in men starting at age forty if they have a family history of prostate cancer.

Oh, so you must have a family history of prostate cancer.

Actually no. But when I turned forty and my doctor asked that question I thought I did. My maternal grandfather had a long history of BPH starting in his early fifties. I didn't know the difference at the time, so I erroneously said I had a family history, and I got tested. As the urologist said, "the horse is out of the barn." If it turns out to be cancer I'm going to be very glad I made that mistake. In fact, contrary to the much more qualified experts on the subject, my less qualified layperson opinion is that all men should start getting tested at age 40.

And your first tests said no cancer?

A PSA test doesn't actually tell you if you have cancer but it does help make the decision of when you should have a biopsy. My initial numbers were a little high for my age but my doctors determined they were not high enough for a biopsy yet. Here's how it went:

2008-03 - 2.6 - First test was just over the limit for someone my age

2008-06 - 3.4 - Uh oh. Repeat is significantly higher. Off to the urologist.

2008-07 - 2.5 - Different lab. Urologist calms me down and talks me out of a biopsy.

2009-11 - 2.9 - A little higher but still in that high-two range.

2010-12 - 6.4 - WTF!? Total freak-out. I force a repeat just one week later.

2010-12 - 4.7 - Okay . . . that's better than 6.4. We hope it's "trending down" and wait 30 days

2011-01 - 5.2 - Sh*#. That's not trending down. Urologist orders a biopsy.

So that's where we are now.

Can't lots of things cause a high PSA though?

Yes, there are other causes. BPH can cause a higher number, but generally not as high a number as mine, particularly in someone my age. BPH doesn't cause prostate cells to leak PSA at nearly as high a rate as cancer. Prostatitis can cause it, but prostatitis is usually painful. I don't have any pain. Some believe that some forms of exercise (especially cycling) can cause a temporary increase in PSA, but it wouldn't cause a 5.2 in a normal 40 year-old prostate. Activities in which the prostate is put to work (ask a parent) can also temporarily cause a higher number but we . . . made sure that wouldn't be a problem before the last two tests.

So while a PSA as high as mine can be caused by things other than cancer, and in fact statistically it appears that the odds are against it being cancer, the lack of other explanations is very troubling. And the fact that it seems to be following a rather steep trend line up also seems more suggestive of cancer than of other causes.

If it is cancer, though, don't worry. Prostate cancer is very slow growing and men almost never die from it.

Prostate cancer is most often slow growing. My numbers are pretty high for my age, though, and worst of all they seem to be following a rather steep trend line. That would suggest a more agressive kind of cancer. One recent study suggests that the rate of change, known as "velocity", is the best predictor of agressive cancers and poor outcomes. That study weighs heavily on my mind.

I know a guy who has prostate cancer and they're just leaving it alone and keeping an eye on it.

That "watchful waiting" is sometimes done with men who are significantly older than I am. In my case, if they find cancer, and if it's anything less than the worst kind that has already spread all over, I'm going to be eager to get that prostate out of there.

Can't that surgery make you incontinent? Or was it impotent??

Both, actually. In some cases. In my case, because of my age, odds are pretty good of overcoming both. But those are high stakes so I would rather not have to make that gamble. That's just part of the reason I want so badly for the biopsy to be negative.

If the biopsy says cancer, though, I want the thing out. I'll deal with the consequences if and when they become a problem.

There are alternatives to surgery.

Yes, there is radiation treatment and even the placement of little radioactive rods in the prostate to kill the cancer. In general, though, once radiation is done surgery is no longer an option. And "watchful waiting" is generally done with older men.

No, if there's cancer in there, and if it hasn't spread to the point that it's too late, I want the prostate out.

Hopefully the biopsy will be negative for cancer and then you'll know you're free and clear.

I SO hope it's negative, and I'll feel MUCH better if it is. A negative biopsy would certainly rule out advanced prostate cancer and mean the odds were even lower that it had spread. But just to put a negative spin on that hopeful perspective, a biopsy that is negative for cancer doesn't necessarily mean no cancer is in the prostate at all. It just means that cancer wasn't found in any of the little samples they pulled out of the prostate. If my PSA numbers stay high, or even worse continue to rise, I can expect more biopsies and more anxiety in the future.

When will you get the results?

The biopsy is Thursday morning. The urologist said to expect a week to get the results. I hope it isn't that long. I'm hoping that the urologist doing the biopsy can also tell us something based on what he sees on the ultrasound used to guide the biopsy.

We'll see!

Architect of My Own Long Sighs

2010-03-07T19:15:00.027-05:00

In my childhood, I spent a lot of time with Mike Brady. As you know if you were born before the mid-70s and are not a Communist, Mr. Brady was not only the patriarch of a blended family with six kids, a housekeeper, and a dog, he was also a successful architect. I can tell he was successful because he:

Had a nice house (some sort of split-level with vaulted ceilings, a sizable attic, and maid's quarters) in Santa Monica, CA.
Employed a plucky maid to live in those quarters
Retained a family butcher
Took the whole family on extended vacations to places like the Grand Canyon and Hawaii.

The Bradys didn't have a boat but they did have a station wagon and Mr. Brady's boss invited them on his "broken-down barnacled barge" at least once. His boss showed up occasionally but didn't seem to give Mr. Brady much trouble. In fact he allowed Mr. Brady to work at home quite a bit.

When I was studying the dynamics of blended families in grad school, the Brady family served as a reference of sorts. They didn't offer much insight into blended family issues since they seemed to have none of those issues themselves, but for many of us the Bradys were the first blended family we knew.

I don't expect college professors probably refer to the Brady family much any more. Too many of the students were born too late. Or they are Communists. Either way, I think that Mike Brady can still serve as a role model to those of us who knew him and try regularly to succeed at another difficult task: Working at home with kids.

I work from home quite a bit, not just for my regular job but also for various projects I have going on at any given time. The programming work I do is, much like architecture, abstract and complex. I have to find solutions to problems and then keep those solutions in my head while I "build" them with code. Doing this job when the house is full of kids is much like one of the experiments we would conduct in a Cognitive Psychology class. A subject might be asked to read aloud while also attending to what someone else is reading. Or he may be asked to complete a maze while being asked to spell common words. We learned how different tasks interfere with each other, and how people will fail comically at basic tasks when distracted by an unrelated stimulus. We also learned that you can get an undergraduate student to do just about anything. Seriously, they're like reality show contestants.

Here in the Orwig psychology lab, if interrupted in the middle of coding the only safe way to proceed is to start again at the beginning. If I write a hundred lines of code with interruptions every five lines, there is zero chance those 100 lines are going to work together without errors. So I have to go back to the beginning to review, hoping I can get in a couple of new lines before the next interruption. Pretty soon, just the anticipation of the next interruption is itself distracting. I can FEEL the kids coming up behind me or getting ready to ask a question or hit each other with something. Eventually I give up.

I do get occasional breaks, of course. Harrison goes to school, and the twins still take a nap every afternoon (which will continue until they are 18 if I have to strap them down to their big-kid beds). Sarah helps, too, taking the kids upstairs to yell at them most evenings and taking them out on weekends so they can fight in the car and the grocery store instead of here.

Writing, by the way, is another task that is difficult in a house full of kids. As I attempt to write this, Harrison is talking to me frequently about movies he wants to see, occasionally asking me to add movies to our Netflix Queue, and, yes, asking me how to spell things. I only switched to writing after I tried programming, let out a long sigh (in lieu of a frustrated scream) and decided to drop it until the kids are in bed. When I'm interrupted in mid-sentence, though, my subjects don't agree with my predicates and I end up with a jumbled mess that I'll have to fix later. So I'm getting close to another long sigh of defeat that will precede me giving up and moving to the other room to watch a movie.

It isn't lost on me, of course, that this frustration is entirely my fault (well, Sarah played a part too, and some other people, but that's another story). I went into parenting with my eyes wide open. I worked with kids for enough years to know that they don't sit quietly for very long and they do need things like love and food and spelling help and DVD rentals of bad movies that EVERYONE has seen except for poor Harrison.

So I've been thinking about Mike Brady, the first father I knew who worked at home in a house full of kids. How was he so successful? He didn't let out frustrated screams or long sighs when someone would barge in with a broken nose or stories of UFOs in the back yard. I remember the kids visiting Mr. Brady in his office, and he would turn to listen to them and give them thoughtful advice in measured, cheerful tones. His daughter actually nominated him for Father of the Year and he still managed to get enough architecting done to pay for the maid and Marcia's braces. What was his secret?

Maybe I should go watch the Brady Bunch and try to figure it out. Now seems like a good time.

A Brief Milestone

2009-05-25T00:13:00.008-04:00

Wow it's a busy weekend. Grocery shopping, pool-safety shopping and flower shopping. I've been putting the finishing touches on the pool, which means I finally had to take on the uncomfortable, confusing, and not entirely un-dangerous job of relighting the pool heater. The water has been hovering in the 70s which is warm enough for the kids but not for us. It has to be at least in the low 80s before Sarah will even dip her . . .

Oh, wait . . . Sarah. Did you know Sarah just turned 40? Yes, I was there when it happened. We watched the clock turn over to midnight and I sang (softly - kids were sleeping) Happy Birthday. She did fine and I'm happy to have her in my age bracket. Then I kissed her goodnight and went back downstairs to feed the cats.

It turns out that having four kids really is keeping us young. Just not for the reasons anybody thinks.

Many people suggest that following the kids all over the place (and carrying two of them all over the place) must provide enough exercise to keep us in shape. But it doesn't. Sure, I get my heart rate up when I drop Grace off and pick her up at preschool. Carrying the twinlets (one at a time) out to the car, unloading the stroller, loading each twinlet into the stroller, pushing the stroller around the school, etc -- and then doing it in reverse -- twice -- does get the blood flowing. Sarah hauled both of the senior children through Target and Lowes today. But somehow it turns out kid excercise doesn't count. I think frustration must interfere somehow. For example, a stair climber provids excellent aerobic benifit, but if the stair climber also talked incessently, cried for NO good reason, demanded food, demanded the absence of food, and tried to wriggle away while you were changing it's diaper, then it would provide no aerobic benifit whatsoever.

I'm sure that could be proven in a labratory, but the research design would never make it past any review board. Too cruel for the experimental group. Even with rats.

Another way people suggest that kids will "keep you young" is by the viewing the world afresh through their innocent eyes. And sure, it's fun to watch the twinlets discover all the objects in the house (and taste them), and to see Harrison begin to make sense of the wider world around him. But largely what it reminds me is what a pain it was to be young. I mean, if an adult can't feed himself with a spoon we see that as a great hardship and send him for occupational therapy. That's the way the twinlets live EVERY DAY! And I am definately not jealous of HJ in the second grade. A ditto full of math problems would be the worst kind of torture for me. I'd rather do my taxes (and we pay someone to do those for us). Also I would rather be 80 years old than have to climb that rope in gym class again (even though I could totally do it now).

No, the way having four kids keeps us young is by keeping us too busy to notice we're getting old. Sarah didn't have time to dwell on her last hours in her thirties because she was too busy giving the twins a bath. She watched the clock roll over to midnight but then was much too tired from her day to stay up and think about it. Tomorrow she'll be rolling the twins around in the stroller and keeping hold of Grace while she watches Harrison and I in the Memorial Day parade. We're having dinner and cake at Grandma's but rather than mourning the passing of her youth, Sarah will be trying to feed two babies with one high chair.

So someday 20 or so years from now Sarah and I will wake up and realize we're in our sixties and ponder our advancing ages. Until then, though, we just don't have time.

Happy 40th, Dear. Hey, where did Shepard go?

Bear

2009-04-30T15:11:00.002-04:00

We have a lot of video of Bear, the dog we loved to dogsit while his real family was away. Bear often seemed to be with us during family events and he is even included in some informal family photos. It wasn't just us who admired Bear, either. He had fans all over Michigan.

When editing some other video I realized this was recorded during one of Bear's first visits, so I gave Bear a rare video of his own.

Jon + Kate + 8 - important parts of Jon

2009-04-30T13:42:00.009-04:00

Walking around with twins tends to break the ice a little in public places and we get asked questions a lot. One of the most common (after "Are they identical?" and "Do they keep you busy?") is "Have you seen Jon and Kate Plus 8?". And the answer to that is "yes." I think Sarah started watching it before we even knew we were having twins. We haven't been keeping up with it recently (we're a little busy) but we have noticed some similarities in our family situations even though theirs is much more intense. Some have even compared me to Jon, and yes we both are fathers of multiples, work in IT, and spend a lot of time at home. But there are important differences, too. Jon is in his thirties, has eight kids, and is married to a controlling woman who much of the time treats him like an employee with a performance problem and doesn't appreciate him. I, on the other hand, am in my forties and have four kids.

Still this report shocked me deeply. I absolutely cannot understand why a man like Jon would be interested in going to parties with college girls or staying out late at clubs with women. It's SO much more fun for a guy to stay home for the 45 minutes between the kids' bedtime and his bedtime, read email, and feed the cats. What was Jon thinking?

One thing is for sure, though. Even if someone could somehow convince me that I wanted to party with college girls' volleyball teams and go out to clubs, I would never do it. Because Jon and I have one thing completely in common: our wives would kill us.

Goodbye, Jon. I'll be thinking of you while I feed the cats.

Iris Luella Kelley!

2009-02-26T21:39:00.003-05:00

Iris was born today at 5:53 PM. She was 8 pounds, 10 ounces in weight, 22 inches long, and no, she is not giving you the finger. Look carefully and you'll see it's the wrong finger.

Iris was born by C-section because she was breech. Speaking as a breech baby myself (who was born the old fashioned way back before C-sections were invented) a C-section is definitely the way to go for a baby who is pointed north. Vaginal birth is humiliating when you're breech. It's not just the bad first impression you make by backing into the world and introducing your butt to everyone before they've even seen your face. It's also the whole idea that you've basically screwed up your first task ever. Everything is provided for you in there, all you have to do is face down. It's just not a good start, and a C-section is a graceful way to get around all of it and get a clean start.

Anyway, word is that Megan and Iris are well. I can only guess that while Megan is the one who had the tougher day, Iris is doing most of the complaining. And this is just the beginning.

Congratulations to mother, father, aunts, and grandparents of various rank (Clara was just promoted to 'Great-Grandma'!).

Amy Lures Firemen To Her Bedroom

2009-02-05T23:26:00.013-05:00

The good news is that Amy appears to be fine. The bad news is we're not convinced the emergency room doctors really knew what the problem was. The good news is Amy is getting better rapdily. The bad news is there wasn't much room to go anywhere but up. The good news is that Amy now has quite a story to tell. The bad news is that Amy now has quite a story to tell.

Anyone who has experienced an Amy story knows that they tend to go on a bit, and well into the story, well after your head has started to spin from all the seemingly unrelated details and side-stories she includes, she casually drops in a detail that would have been the starting point (or the only point) of most people's stories. So she might say "My coworkers and I like to watch movies at lunch" blah blah blah "I brought in The Shawshank Redemption because" blah blah blah "I made some popcorn but I forgot about it being in the microwave because the movie was at that part where" blah blah blah "and then the smoke alarms went off" blah blah blah "and they evacuated the building."

The story from today will begin with Amy telling all about a recent bout of the (apparent) flu, and after a while get to the part where she wakes up in the middle of the night hardly able to move from weakness and soreness. If you don't know the story of me having Guillain-Barre Syndrome in 1995 then you're likely to hear that whole story before returning to the present day to the part about the fully outfited firemen in Amy's bedroom and a ride in the back of what little Amy used to call a "hospital truck".

At the moment it appears the ending of this story is anticlimactic. Let's hope it stays that way. Right now it appears that Amy "just" had a virus, and as of late this evening she was up, eating, and even sent Mom home.

In case you haven't experienced an Amy story, and in case you haven't seen this video already, here is a video from this Christmas giving a mild simulation of the Amy story experience:

A Fairey Tale

2009-01-20T14:05:00.004-05:00

I display this image not for political reasons. This isn't that kind of blog.

There is something significant about this now famous poster, though. It was created (independently) by an artist named Shepard Fairey of South Carolina. While his last name must have made middle school a little rough (especially for an aspiring artist), he nailed the first name. He even spelled it right.

The poster - which elicits either retro-coolness or totalitarian leader-worship, depending on your perspective - was eventually adopted by the Obama campaign with the word "Progress" replaced by "Change."

So I post this poster not to rub it in for those who aren't celebrating today, but just to make the case that we weren't entirely off-target when we chose the name "Shepard." The Obama-voting artistic Fairies of South Carolina apparently liked the name, too.

The timing is just a coincidence.

An Anxious Moment

2009-01-10T10:08:00.008-05:00

Grace: Dad, will you open the washing machine?
Dad: [suspiciously] Why Grace?
Grace: Because it's stuck.
Dad: [more suspiciously] Why do you need it open?
Grace: To wash some clothes.
Dad: [sternly] What happened to the clothes, Grace?
Grace: They got dirty.
Dad: [more sternly] Grace, how did the clothes get dirty?
Grace: [pause] Barbie got them dirty.
Dad: [exasperated] Oh, so Barbie did it. Grace, what is on the clothes?
Grace: I don't know.
Dad: [sigh] [pause] [On the way to the laundry room] Okay, I'm coming.
Grace: [from the living room] No, not that one, Daddy. The one in Barbie's Dream House.
Dad: [relieved] Oh! Yeah, I'll open that one right now!

The Twins relax after a meal

2008-12-31T22:37:00.003-05:00

Sarah snapped a quick video of the twins relaxing after a meal:

The Best of Times; The Worst of Times

2008-12-31T17:30:00.001-05:00

'Tis the season for articles with titles like "The Best Reality Show Moments of 2008," "The Worst Snack Foods of 2008," and "Why 2009 Will Be 'The Year of the Sweet Potato'." So I'm going to pile on with two lists of my own:

1. Why 2008 Was Great:

The Orwig twins are born
Goes without saying. One of the best and most significant days in my life.
Harrison milestones
Too many to mention. The guy started second grade, and has been growing up in countless ways. He seems to be making the transition from "little boy" to "young man" already. With the addition of the twins to the family, Harrison has sometimes moved into a more grown-up caretaker role even though we haven't asked him to.
Grace Milestones
Again, too many to mention. She started preschool. She changed instantly from "baby of the family" to "big sister" and "middle child." She has made the transition from toddler to little girl.
My political candidate wins for a change
Don't worry, I don't expect everyone to agree with me on this. But it was very important to me because I felt it was very important for all of us. To me, November's election seems to improve the odds we will pull through the next decade.
Ford releases some kick-butt new cars, giving hope
I had been worried, but it seemed I was starting to see some Ford cars in daily use that really could be a part of the Way Forward we've been counting on for the past three years. It wasn't just the Fusion any more. Now there were multiple Ford vehicles out there that people genuinely liked.

2. Why 2008 Sucked Big-Time:

Grandma Shepard dies
The fact that this event was not unexpected makes it no less traumatic and significant for all of us. Now that the body of Wealthie was gone I'm really starting to miss the Grandma who was in my life for so long.
Luke dies
I still have trouble believing I'm even typing this one. It still doesn't make sense, and it still affects our family on a daily basis. Luke, and the loss of Luke, comes up when I'm talking to Harrison, Grace still asks questions about him, and I think of him and his family literally daily. Harrison has made new close friends but he will be forever affected by losing Luke. As stunned and sad as we were when it happened just before school started, I never would have guessed how affected we would still be now.
Claire gets sick
This story has mainly turned out to have a happy ending, but it was horrific while it was happening and it cast a dark cloud over an exciting time in the life of someone who didn't deserve it.
The economy siezes
That "Way Forward" plan mentioned above, already behind schedule, was dependant on people not only wanting but also being able to buy these new Ford cars they were starting to like. The events of the fall seemed quickly to nullify any hope of a way forward not only for Ford and the (now) "Detroit Three", but this entire region of the country.
The US Senate left us to die
I know I shouldn't take this personally. It was just politics, after all. But when the bailout failed, it killed any remaining faith I had that when necessary, politicians would rise to the occasion and become leaders. They didn't. It doesn't bother me as much when citizens who don't have all the facts make callus statements about "letting the free market take its course" or "controlled bankruptcy." But those senators knew the likely consequences and they cold heartedly decided to risk the ruin of a region of our country and even a potential depression in the hope the UAW would die in the process. As one of the people scheduled for ruin, I do take it personally.

So there's my list. I'll start work right away on my next post: "Why 2009 Will Be the Year of Early Potty Training."

Twin Milestones

2008-12-08T17:22:00.004-05:00

These startlingly cute "jackets" from Grandma Burke are creating quite a reaction whereever I take the twins. It's the ears that make the outfits. Kennedy and Shepard love the warmth, but of course they can't see the ears. Someday they're going to get old enough to check this blog and I'm going to be in trouble.

A couple of milestones over this past week or so:

Kennedy has popped out the beginnings of a lower tooth. It's just the start, but Kennedy and a babysitter both noticed it before Sarahjane and I did.
Both babies can now get up on all fours. Neither of them are moving very fast yet, and when they do move they are limited to reverse. But it tells me my days of parking them in one room and expecting them to stay are almost over. By now, the cats should know that their days of relative quiet are over, too.

Flex Manual Addendum

2008-12-08T17:15:00.001-05:00

As you may have deduced from previous posts, I am a big fan of the Ford Flex. It drives like car but hauls people like a van, and it gets great mileage for its size. I'll bet its cost-per-Orwig-hauled ratio could beat just about anything out there. It looks cool, too. The next time someone starts taking unfair shots at the ability of the "Detroit Three" to innovate, they ought to be challenged to test drive a Flex (or an Edge or a Fusion, for that matter).

Lately my Flex and I have been under some pressure. Due to child care issues and Sarah's schedule, I've been hurrying to and from work without my usual ability to stop for gas. Then yesterday I was actually allowed to go out without any kids along, but it must have thrown me because I completely ignored the fact that the Flex was running out of gas.

As I pulled into the driveway last night I saw the "Distance to Empty" indicator change from 1 to zero. I've seen that before, though, and those things always underestimate gas. Besides, I could solve the problem using the large container of gas I keep for the lawn tractor. I had been meaning to use that gas anyway, rather than letting it age all winter.

As you might have guessed (because you are reading it here), things didn't work out as I planned. Rather than complain I decided to do something more constructive: Draft a potential addendum for the Flex manual specifically designed for people like me.

Your Ford Flex requires fuel to run. While we design the vehicle to be as efficient and convenient as possible, current technology does not enable the Ford Flex to make allowances for the fact that you haven't had time to stop for gas because you've been hurrying home to relieve babysitters. It is also unable to take into account that when you drove to the grocery store over the weekend (driving past several gas stations) you were engrossed in a particularly good interview on NPR's Fresh Air and didn't notice the Distance-To-Empty gauge helplessly trying to get your attention.

Therefore, this addendum is here to offer the following information and advice:

This vehicle is equipped with the new No Bull Distance-To-Empty gauge. That means when it reports "0 miles to empty," you are actually out of gas.

This vehicle is equipped with a new Dorkfree Capless Gas Hole. We learned years ago that people like you tended to unscrew the gas cap and leave it on the roof of the car when you drive away. So we tried tethering the gas gap to the gas hole, but found that you would still forget to screw it into your gas hole and would drive around with it hanging on the side of the car. Yes you did. We saw you do that at least once. So this latest attempt to save you from yourself removes the gas cap entirely. Instead a special valve is placed over the gas hole itself. This valve will only open when the proper sized nozzle is inserted into the gas hole, and it seals tightly when you remove the nozzle.

A plastic lawn-mower gas can does not have the right size nozzle. So when you attempt to put extra gas into your car from a gas can in your driveway on a dark winter night, you will discover in the morning that the gas simply ran down the side of the car and melted all the snow in that area of the driveway.

As mentioned above, the gas hole valve seals tightly. This means that in the morning, when you attempt once again to pour gas into the car using the wrong nozzle, ALL of the gas will run uselessly down the side of the car. Your personal assurances to yourself that "some of it must have gone in" are incorrect.

Your best course of action at this time is to remain in the driveway and read the instruction manual. You, of course, won't. You'll figure you can make it a few miles to the gas station.

When you ignore the Distance To Empty warning and neglect to read these instructions, there will be no further warning when the last drops of gas are finally burned. The dash will not begin showing "-1 miles to empty" or "You're bummin', Dude". When your Ford Flex starts to stagger and stop moving forward, that is your indication that you are, in fact, bummin'.

At the first indication that you have starved the engine of gas, you should use your last remaining lurches of motion to pull safely to the side of the road. Do NOT attempt a U-turn back toward home (particularly not in an intersection of your subdivision) as you will stall in the middle of the turn, blocking traffic much more effectively than if you had simply pulled over.

When you ignore that advice, turn on your hazard lights so your neighbors know you are a dork stuck in the middle of the intersection with car trouble, rather than an even bigger dork who decided to park in the middle of the intersection for some reason. The hazard light switch is located in the center top of the dashboard. It's there, look again. No, higher. There you go.

By now you will likely have figured out that no gas actually is getting in the tank when you try from the gas can. Attempts to hold the gas hole valve open with foreign objects like straws and pencils will fail.

While you are trying to force open the valve with foreign objects, you will eventually notice there are little pictures drawn on the gas hole door. We didn't have much space to work with, but tried to communicate via pictures that you should not attempt to force open the valve with foreign objects. You should use a special funnel instead. We also tried to get across that you should read the manual for more instructions.

As you are looking for the manual, please refrain from profane complaints about the inconvenience of having to bring along a funnel. First of all, the need for the funnel is explained in this manual, so you can hardly blame us. Second, we have anticipated your lack of preparation and have provided a funnel for you. It is conveniently located alongside the spare tire, which is in the far back of your Flex under the twin stroller, preschool papers, and empty pop bottles.

You should really return those pop bottles.

On your way to the gas station, you will panic as you can't remember putting the twin stroller back in the car. You can stop picturing it sitting in the middle of the intersection. You didn't screw that one thing up today and the twin stroller is safely in the back of your car.

Think they look tired?

2008-11-12T23:48:00.001-05:00

You should see Grandma. She spent the day with them.

Grace, Shepard, and Sarah were all sick today. I had it last week. Harrison had it first. Kennedy is the only one to dodge the bullet so far.