Sunday, February 20, 2011

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 fiancĂ©e. 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.

Friday, February 18, 2011

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.

Tuesday, February 15, 2011

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?

Sunday, February 13, 2011

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.

Tuesday, February 8, 2011

Paging Doctor Octopus

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:,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.

Wednesday, February 2, 2011

What Lies Ahead (?)

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

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.