Day 41 – Selection

A day of meetings kept me pretty busy and my mind occupied on things other than the upcoming surgery. But when I returned home for lunch, there were two messages on my answering machine—one from the insurance company and the other from the hospital.
The call from the insurance company was interesting. They said that they learned that I’d be an inpatient at t a hospital soon, and that they needed to collect some important information. When I dialed the number that they left, the entire battery of questions that needed to be answered was done with an automated voice recognition system. I didn’t speak to a human once in the entire call, yet I answered everything they needed to know. Isn’t technology wonderful? (Sarcasm.)
The call from the hospital was to schedule some pre-surgery tests—an EKG and some blood tests. Those will occur Thursday morning in Cincinnati.
Later in the afternoon, I had to call the hospital again to preregister for my stay. Again, another battery of questions. I’ve never been asked what my birthday is so many times in my life! 🙂
I’m going to schedule one more meeting with Dr. Cincy to ensure that we’re both on the same page prior to the surgery. As far as I’m concerned at this point, he’s the guy. No more research. No more reading. Move the burden from my shoulders to his and have faith that he’ll give me the best possible outcome.
I feel comfortable with my choice and I don’t feel as though I’m settling. Let’s move forward and take the next step in the process.

Day 40 – Crossroads

Indonesia. France. Germany. Denmark. U.K. Russia. Canada. U.S. I’ve had page views from each of those countries since the launching this blog. Wow.


Für meine Freunde in Deutschland:

Vielen Dank für Ihren Kommentar. Wenn Sie möchten, senden Sie mir bitte eine E-Mail mit dem Link in meinem Profil. (In der “Über mich” Teil weiter unten.) Wenn Sie dies tun, kann ich dann, um Ihre Kommentare zu antworten.

Und bitte verzeihen Sie mich für mein schlechtes Deutsch.


Today got off to an early start when I drove to my biofeedback session in Cincinnati. As I was sitting in the waiting room, I was reading my book and it said, “…this is an expensive way for a man to learn how to start and stop his stream, and indeed, critical studies have demonstrated no great benefit to this elaborate and expensive procedure. “ Something reassuring that I needed to read 10 minutes before starting the session.

One thing that did make the session worthwhile is the lesson that I learned about the catheter and drainage bags. It was very informative and gave me a better understanding of what I’m in for.

After that appointment, I had another appointment with my family doctor here in town. I wanted to get her take on the lymph node dilemma—take them out or leave them in. I thought that she might be a bit more committal with her recommendation, but she really wasn’t. “It’s your choice,” she said after explaining some pros and cons. She suggested that it might be of value to talk with an oncologist who deals with prostate patients, and I may take her up on that suggestion. But that leads to another issue which I’ll talk about in a minute.
Needless to say, the events of the morning didn’t exactly put me in a cheerful mood for our Christmas lunch with our team at work. Or for the rest of the afternoon, for that matter. Especially when I read, “…as surgical procedures go, radical prostatectomy remains one of the most delicate, intricate, and flat-out difficult to perform correctly.”
I’ve learned through this whole process that you really do have to educate yourself and be your own advocate. But for those of you who really know me, you know that I can take educating myself to an extreme. At some point, I’m going to have to stop and just take that leap of faith.
But there are still some questions that need to be asked and answered, and I’ll do that. Will I ever get comfortable with the notion of having to go through this? Nope. I need to identify the point at which I can follow the book’s advice:
“Now we’re at a crossroads. Educating yourself is just half the battle—the half you can control. The other half involves a leap of faith: You must find a doctor you can believe in, and then you must be able to accept that doctor’s advice.”
“…Release the burden from your shoulders. Let go and allow the doctor to take over. Spend your energy and strength following that advice, recovering from the treatment, and beating this disease.”
I think I’m getting closer. But I also know that I have until the day before the surgery to change my mind.


An update: Neither Dr. Indy nor anyone from his staff has yet to contact me with answers to my questions from last Tuesday, with the orders for the pre-surgery physical tests, or the DVD and information packet concerning the procedure.

Day 39 – 20th Century

Okay. I know it’s really the 21st Century, but I finally joined the 20th Century this afternoon. “Huh?” you ask.
Well, you know what they say about old dogs and new tricks… I finally took a couple of my CD’s and ripped some songs from them in MP3 format to upload onto my phone. (Yes, I know… I’m the last guy on the planet to convert to pure digital music.)
Having some tunes available over the next few weeks will be a good distraction.
Speaking of distractions, you would think that I might have turned to television to take me away from my thinking about cancer. Interestingly, that’s not been the case at all. In fact, if I’ve watched more than four hours of television since Day 1, I’d be surprised (aside from listening to the news and weather as I’m getting ready in the mornings).
I took a break from reading “Surviving Prostate Cancer” today. While it’s been very educational, I can only take so much of it at once. I may read a few sections tonight before going to bed.
Tomorrow morning, I head to the urology center to learn how to control my bladder sphincter through biofeedback a session. In other words, I’m being potty trained again. 🙂 Hey, if it helps prevent me from peeing in my pants after the surgery, I’m all for it.
My refrigerator is in need of restocking to get me through the short week, so I need to run off to the grocery store. Plus, you would think that I was smart enough to throw a load of laundry in while I was ripping songs, but noooo… So when I get back, at least one load is going in the wash.
That’s my Sunday!

Day 38 – Reading

Another good night’s sleep had me sleeping in until 9:00 AM this morning. Loved it. 🙂 And I didn’t wake up like I did yesterday, and that was good, too.
Once I did get motivated, I was off to the bank and barber shop to get my hair cut for the holidays. My barber is living with prostate cancer, but he’s 73 and has chosen the watchful waiting. Besides, I’m not sure he could stand another surgery. He’s had a kidney removed because he had kidney cancer; lung cancer; and a heart by-pass. It’s good to see that he’s survived all that and is still in business.
When I got home, I reorganized one of my closets after years of just putting more and more stuff into it. I may work on the dresser in the guest room tomorrow in anticipation of my sister staying with me for a while. She’ll need someplace to put her clothes.
And this evening was spent reading more in my new book for nearly four hours. I’m about halfway through it now and obviously took a break to update the blog.
So that’s about it for this Saturday evening…

Day 37 – Sad

Sad.
That’s how I felt right out of bed this morning. It was really odd. Not depressed (I think). Not angry. Just sad. And a bit emotional.
I swear, if my reflection in the mirror whispered, “Boo!” I would have been in tears. And considering that I haven’t shed a tear since the beginning of this journey, perhaps it’s time.
And the sadness lasted pretty much through the entire day, much like the gray clouds that have been hovering overhead for much of this week.
I think I may be coming to terms with the fact that this could be bigger than I have thought it was all along. Even when the surgery is a success, I’ll still have cancer in my thoughts for the rest of my life. Will it come back? Will it appear elsewhere? When can I call myself cancer-free? Five years? Ten years? Ever? What will I have to give up in order to increase my chances of remaining cancer-free?
So what does one do to shake the sadness? Shop.
I ran to Jungle Jim’s market to pick up the Christmas goodies that I usually bring to my sister’s house, and a few extra things for me leapt off the shelves and into my cart. Just like Christmas shopping on Day 28. 🙂
So if red wine helps prevent prostate cancer and dairy products feed prostate cancer cells, does having wine and cheese turn into a zero sum game? Do they cancel each other out? Just wondering…
The next chapter in my “Surviving Prostate Cancer” book talks about the effect of diet on prostate cancer. Red meat and other sources of animal fat (e.g., cheese) are big no-no’s. Fruits, vegetables, grains—all good guys. (Back to that “What will I have to give up to remain cancer-free” question.)
The “tease” on the book is from USA Today: “The ultimate book on the No. 1 men’s disease in the world…should be in every man’s home.” I’m only through three chapters of the book, and I’m beginning to see why they said that. It’s well-written and quite thorough.
Guys, if you have a history of prostate cancer in your family, you should check it out because you’re at higher risk than most. (It was only $11.55 on Amazon.com, and, no, I don’t get a commission!) Getting through the remaining nine chapters will be my goal for the weekend.
Enjoy yours!

Day 36 – Snow

Snow. Shoveling snow at 6:30 AM. Ugh.
I was supposed to meet a friend for breakfast at 7:00 AM and we knew that it would be a little iffy with the forecast. Sure enough, there was about three inches of snow on the ground this morning, and that was enough to postpone our meeting, so I was out shoveling it off the drive before heading to work.
I stayed up reading my new book, “Surviving Prostate Cancer,” a little later than I should have been—11:45 PM—but it’s a very informative book. I made it through about 85 of the 575 pages. You’d think that I would be tossing and turning all night, digesting what I had just read. I didn’t. It was a good night’s sleep.
I’m still waiting to hear back from Dr. Indy concerning the follow-up questions that I sent to him at 9:30 AM Tuesday morning (it’s now 7:00 PM Thursday night).
I forgot to mention that I called the American Cancer Society hotline the other night and spoke to a very nice young woman. Of course, they can’t give out specific guidance on medical treatment, but she pointed me in the direction of more information on their website.
At work, I’m beginning to get things lined up for me to be out 6 weeks (with time off for the holidays in that number). Making contact lists, step-by-step instructions for some of the quirky things that I do, etc. I also approached one of my neighbors (with a snowblower) to see if he would be willing to clear my drive if/when it snows during the 4 weeks after the surgery that I’m not supposed to lift anything. He kindly agreed. (THANKS!!)
After work, I returned home to another inch of snow on the driveway, and a foot or so of snow piled up where the plow went by. So I ended the day just as I had begun it—shoveling snow. Ugh.


Oh. I forgot. An administrative note… If you leave a comment using the “Anonymous” feature, it’s truly that unless you leave a clue for me to figure out who you are… Location… Initial(s)… Of course, you may be intentionally trying to drive me nuts… And that’s okay, too!

Day 35 – Thinking

So after last night’s lengthy ranting (which really helped me organize my thoughts), I’ll try to keep this post short. Besides, my new favorite bedtime read, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, just arrived and I want to tear into it.
Dr. Indy still has yet to answer my follow-up questions despite a call from his assistant wanting to confirm the surgery date. I asked if she had given the questions to Dr. Indy, and she had, but said that he was tied up in meetings and surgery all day yesterday and this morning. “He’s pretty good about e-mailing patients.” Okay. I didn’t commit to her date yet.
I did e-mail my coworker who had been through this to see what his experience had been with the lymph nodes. He didn’t know for sure whether they were there or not; he only knew that Dr. Indy would do what was needed to get rid of the cancer.
I’ve pretty much made up my mind that I’ll go to Dr. Cincy for the surgery. I’ll hold off until I hear from Dr. Indy and see what I glean from my new bestseller in the snowy days ahead (good time to curl up with a book, eh?). There would really have to be some compelling revelation from either that would change my mind.
Finally, I’ll have to admit that I seem to be falling back into a more normal sleep pattern, which is good. It makes it a little easier to be around me when I’m not so grumpy. 🙂

Day 34 – Research & Analysis

After publishing last night’s post, I crawled into bed and began searching through my favorite bedtime read, “100 Questions and Answers About Prostate Cancer,” for any information on what to do with the lymph nodes.
There on pages 62 and 63 was the following:
Not everyone needs a pelvic lymph node dissection. When the risk of having positive lymph nodes is low, such as occurs in men with a low Gleason score or a PSA < 10, a lymph node dissection is unnecessary.
  • The main risks of a pelvic lymph node dissection are bleeding, nerve injury, and lymphocele.
  • Bleeding: …are near large pelvic arteries and veins, called the iliac vessels. Injury to these vessels or their branches may cause bleeding.
  • Nerve injury: The obturator nerve supplies muscles in the leg…If the nerve is cut or damaged at the time of surgery and the damage is recognized, it may be sewn back together. If the injury is not recognized, it may lead to permanent inability to cross your leg on the side of the injury.
  • Lymphocele: A collection of lymph fluid that collects in the pelvis.
Reading that reinforced what Dr. Indy had said, and that was reassuring. I slept pretty well considering the mode I was in much of the afternoon and early evening.
This morning, I called Dr. Cincy’s office and explained that I had been there last Thursday, and since meeting with him I had some follow-up questions for the doctor. I mentioned that I had them written down, and the receptionist asked if I could send them to her, and she’d get them to the doctor and he’d call me when he had time. I fired off my questions at 9:08 AM.
At 11:04 AM, Dr. Cincy called me to go over my questions. We talked mostly about whether to keep the lymph nodes or not based on what was on page 62.
He was familiar with the recommendation to keep the lymph nodes when there are low Gleason and PSA scores, but he suggested that it’s not just about the scores. He was concerned about the volume of the tumor as well.
Even though my Gleason is 6 and my PSA is 5, with 11 of 20 biopsy samples having cancer in them, he thinks that the volume of my tumor is large enough to warrant checking out the lymph nodes by removing them. That was a reasonable explanation and, to me, showed judgment beyond looking at the studies or statistics.
He said that if I wanted to leave the lymph nodes in, he’d be willing to do that. It would be my call.
The final question that I asked him was, given my status, and given the procedure that he described on Thursday, what percent chance do I have of being cancer free at the end of it all. His answer: 80%. That’s a good number, but a bit lower than I expected. It also makes me want to read between the lines and say now I know why he wants to remove the lymph nodes, too.
I also had some questions for Dr. Indy after yesterday’s visit, and I e-mailed those to his assistant (without calling in advance as I had done with Dr. Cincy) at 9:27 AM. She opened the e-mail at 10:10 AM (return receipt); it’s now 9:11 PM, and no response from Dr. Indy yet.
I will say, however, that one of Dr. Indy’s nurses called around 5:00 PM as a standard follow-up to my visit. She asked if I had any questions that I needed answered, and I told her that I e-mailed them to the assistant this morning. She was unaware of that. She also asked if I was given a booklet or CD describing the procedure yesterday, and I did not receive either. She’ll mail those to me.
This afternoon, I spoke with a coworker who had breast cancer and cancer was found in her lymph nodes. And, just by coincidence, I ran into a retired coworker who had his prostate robotically removed five years ago, and they took his lymph nodes. When they did the biopsy on the lymph nodes, they found trace cancer cells. (I didn’t think to ask him what his Gleason and PSA scores were.) As a result, he went through chemotherapy and radiation, and five years later, there’s no sign of cancer.
The kicker with prostate cancer is that you can look at the Gleason and PSA scores and make the assumption that the cancer is contained within the prostate based on historical studies and statistics for those given scores or combination of scores (Dr. Indy’s approach). But you don’t know how close the tumor has come to the edge of the prostate until you actually take it out and section it in a biopsy (Dr. Cincy’s approach). Only then will you know if you have what’s called a “positive margin,” meaning that there are cancer cells all the way up to the cut edge of tissue removed during surgery. A positive margin indicates that there may be cancer cells remaining in the body.
I’ll have been sewed up and super-glued back together for a week before the biopsy results come back, and then it’s too late to go after lymph nodes or other tissue if there is a positive margin. At that point, they’d have to do some sort of screening (CT scan?) and perhaps another biopsy to check if the cancer has spread. If it has, then chemo, radiation, and / or hormone therapy are all options.
If you take the lymph nodes with the prostate, at least they can be biopsied right away, and you’d get the results about the same time you’d learn whether there was a positive margin. I suspect that you’d have the same result: CT scan and chemo, radiation, and/or hormone therapy.
I guess it comes down to this: If you’re going to get to the same ultimate destination, does it matter which route you take?
I think with Dr. Cincy’s approach, you get there faster. I’ll know pretty much at the same time: Positive margins? Yes/No. Cancer in lymph nodes? Yes/No. If Yes, chemo and radiation begins now.
With Dr. Indy’s approach, you go: Positive margins? Yes/No. If Yes, take more time and scan and biopsy lymph nodes. Cancer in lymph nodes? Yes/No. If Yes, chemo and radiation.
As a data driven guy, I can understand Dr. Indy’s approach. Let the facts at each step of the process dictate what the next steps will be. Why mess with the lymph nodes until you know that you have positive margins? If you have a positive margin, then you proceed with testing and biopsies; if you don’t, then you haven’t removed the lymph nodes unnecessarily.
As you can tell, I can argue both positions pretty well. Before writing this, I would have told you that I was pretty strongly in favor of Dr. Cincy’s approach. But the act of writing this has made me take a second look at Dr. Indy’s approach.
The good news is that I don’t have to make a decision before I go to bed. Or tomorrow. Or Thursday. Or Friday.
I did order a book this morning from Amazon.com that was a “must read” according to the Prostate Cancer Foundation for anyone about to undergo a radical prostatectomy. I splurged for next day delivery, so it should be here tomorrow. Maybe that will provide additional insight…
Thanks for listening to me today and for letting me “think out loud” on this blog tonight.

Day 33 – HELP!

 
Okay. I was a bit naïve going into today’s meeting with Surgeon #2, Dr. I.
I thought I would ask the same 37 or so questions that I asked Dr. C, get essentially the same responses, and then make my choice based on the answers and his interaction with me. But what Dr. I would do during the surgery is sufficiently different from Dr. C’s approach that it threw me for a loop.
The two areas of concern are how each would treat the lymph nodes and the nerve bundles.
Dr. I didn’t think it was really necessary to remove the lymph nodes because the likelihood of them having cancer in a case like mine is small. There also is a small risk of damaging a major nerve that controls leg movement, as well as a nearby vein. I don’t recall Dr. C mentioning those risks to me.
Dr. C wanted to take the nerve bundle on the right side where the tumor is, more as a precautionary measure in case the cancer had spread to it, too. Dr. I, on the other hand, felt that he could leave part of the nerve bundle even though it was close to the tumor.
There’s one other dimension that comes into play, too. The hospital where Dr. I operates is a teaching hospital at a major university. It’s very likely that a resident would perform part of the operation (under his direct supervision).
‘Cause I’m me, here’s a nice little summary table:
Surgeon #1
Dr. C
Surgeon #2
Dr. I
Experience (# of robotic surgeries)
700
1,000
Robotic prostatectomy best course of action for me?
Yes
Yes
Lymph nodes
Remove
Leave in
(But possibly remove those on the right side closest to the tumor.)
Nerve bundles
Take nerve bundle on right side where tumor is; leave nerve bundle in place on left side.
Take partial nerve bundle on right side; leave nerve bundle on left side.
Teaching Hospital
No
Yes
May have resident perform part of the surgery under his direct supervision.  He would personally perform the “important” parts of the surgery.
From a personal interaction perspective, Dr. I was okay. He wasn’t as personable as Dr. C.
It was obvious that he hadn’t read any of my material prior to meeting me. We spent the first ten minutes of the meeting flipping through my charts, trying to get a good understanding of the exact nature of my cancer.
For being the chairman of the urology department at this university, you might expect him to be a little full of himself or arrogant, but he wasn’t. You could definitely tell that he was in an academic and research environment. He recited a number of clinical studies and articles that he had either done personally or had read in journals like the New England Journal of Medicine. When he disagreed with a study’s outcome, he said why he thought they erred.
He didn’t break out any anatomical drawings and explain to me exactly what he was going to, as Dr. C had done. Nor did he want to feel the mass that he’d be dealing with—in other words, no DRE as Dr. C had done. Dr. I, however, was very knowledgeable of his own complication statistics, citing how many times he had to do a blood transfusion; how many times he nicked the rectum wall; etc. Dr. C wasn’t so detailed.
Dr. I did say that some surgeons treat every prostatectomy the same, and perform the same steps in each. He said that he tailors the surgery to the specific case at hand.
As far as the number of surgeries performed is concerned, I don’t know that there’s a significant difference between 700 and 1,000. It would be more telling if it was 100 vs. 1,000.
So I think that Dr. C is more personable and more thorough in his explanation with the patient. But I think his approach may be one of a full frontal assault on the cancer—take it all: Prostate, lymph nodes, and nerve bundle—to make sure there’s no cancer left after the surgery. There’s some appeal to that approach. Get it over and done with knowing there may be heavier casualties (sexual function gone) but very little chance of the cancer recurring.
Dr. I seems to be very data and fact driven (sound like someone else you know?). His approach may be a bit more refined—take only what needs to be taken, and then just a tad more to make sure the cancer is gone. He did state, however, there may be a risk of recurrence and the need for radiation or hormone therapy later on if he doesn’t take quite enough.
One thing I didn’t do was tell either of them that I was seeking another surgeon’s opinion. I didn’t want that to taint what they would tell me—they might become defensive or otherwise pitch their services to me.
So there you go. Just how in the hell am I supposed to sort this out and choose?? I may make a few phone calls to places like the Mayo or Cleveland Clinics, see my personal physician, see my urologist, or just break out the Tarot cards. I’d hate to go for a third opinion, but I just may have to.
I did reserve space on both of their surgical calendars for the first week in January. It’s easier to cancel an appointment than get one.
Any words of wisdom would be greatly appreciated!!

Day 32 – Chores

Not much to report today:
  • A good night’s sleep last night.
  • Did laundry.
  • Cleaned off my desk.
  • Finished Christmas cards.
  • Filled out forms for tomorrow’s visit to the surgeon.
  • Shoveled snow.
  • Listened to music all day.
That’s all, folks!