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!

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.

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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!

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. 🙂

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.

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.

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!!

Not much to report today:

That’s all, folks!

Today’s posting will be a potpourri of random thoughts…

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There’s an everyday question that I’m beginning to have difficulty answering: “How are you doing?”

When someone asks that, I don’t know if it’s just a general, “Hey, how are you doing?” and they don’t have a clue as to what I’m going through; or if they’re in the know about my cancer and really want to know how I’m doing.

Just as I predicted on Day 1, the local gossip mill has spread the news pretty far and wide, so I really don’t know who knows.

So if I see someone in the hall and they ask, I’m a little reluctant to blurt out, “Okay for having cancer,” or something along those lines. Especially if they don’t know. Shocking people in hallways is not how I want to handle this.

On the other hand, if someone is genuinely wanting to know how I’m coping with my cancer, and all they ask is “How are you doing?”–without bringing up the C-word–and I respond with a quick “Fine,” I don’t want them to think that I don’t want to talk about it or am blowing them off.

It’s definitely an unexpected situation.

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So the girls have their pink ribbon for breast cancer awareness. Let me introduce you to the guys’ version for prostate cancer awareness:

I discovered that Googling for some information this morning.

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I finished my Christmas shopping on this 40-degree, drizzly afternoon. That will allow me to get things wrapped during a very blustery Sunday. (I use the term “wrapped” loosely; gift bags are the greatest invention known to mankind since the wheel.)

So that’s it for today. Happy Weekend!

Heat up a mug of hot chocolate or a glass of glühwein, settle into your favorite comfy chair, and relax, because this will be a long one…

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Before you do, however, first this disclaimer: Graphic descriptions ahead. Read at your own comfort level.

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So the surgeon (we’ll call him Dr. C in keeping with the “no-names-in-the-blog-to-protect-privacy” approach I’ve been using) walked into the exam room and introduced himself and said something along the lines of, “I’m sorry we have to have this discussion,” meaning “I’m sorry you have cancer.”

He was very easy-going yet very professional throughout the entire meeting. We started by reviewing my biopsy results, with him showing me where the cancer was within the prostate and making sure that I understood what the results meant.

He pulled out some laminated cut-away drawings of the male anatomy and walked me through the layout of all the key players in the area of the prostate, and then took a black dry erase marker and began showing me exactly where he would be cutting. He even brought in one of the robot arms with a miniature pair of scissors on the end to show me how large the instruments would be. (You can watch video of an actual robotic prostatectomy on the two links that I’ve added to the right. There’s very little blood and it really is fascinating.)

Dr. C then addressed the risks of the surgery and the possible complications afterwards. He showed me on the drawing where the bladder sphincter muscle was and how he would try to avoid getting too close to it to minimize the risk of incontinence after the surgery.

He also showed me the nerve bundles on either side of the prostate that control sexual function. Dr. C said that because the tumor on my prostate was so close to the nerves on the right side, he would have to remove that nerve bundle to ensure that he gets all the cancer. He said that very few guys with only one nerve bundle intact can “sport wood” (his words) on their own, without the assistance of a little blue pill. The other thing that happens during the surgery is that I’ll essentially have been given a vasectomy and will be “shooting blanks.”

As Dr. C went through his explanation, he answered nearly three-quarters of the questions on my page. Of course, I did ask those that weren’t answered in his discussion. A few highlights:

On his qualifications:

Dr. C trained for a year on the da Vinci robot when it was first brought to his hospital in 2003, and did his first operation on a patient in 2004. Since then, he’s operated on 700+ patients, with about 5% of them having post-surgery, long-term complications (mostly some form of incontinence or impotence).

On the procedure:

I’ll have to go for biofeedback training about two weeks in advance of the surgery to teach me how to exercise my bladder sphincter so that I have better urine control after the catheter comes out.

Dr. C will take some of the surrounding lymph nodes during the surgery to ensure that the cancer hasn’t spread to them.

If all goes well and there’s no sign of infection, I can be released from the hospital the day after the surgery. I’ll experience 3-5 days of a bloated feeling and pain, but it typically subsides to a tolerable level pretty quickly.

I’ll have a catheter for 5-8 days after the surgery.

On the recovery:

I should plan on 4 weeks off work to ensure a full and successful recovery. It will probably be at least 2 weeks before I can drive again.

I should also be up and walking around soon after the surgery and should be able to shower the day after as well.

There would be regular monitoring after the surgery to see if there’s any cancer remaining, but there should be no need for radiation or other therapies unless something shows up.

We probably spent nearly 30-40 minutes together and, before I left, he had one last surprise for me. He said, “I’m afraid I’m going to have to give you a Christmas greeting. I need to feel what I’m dealing with, so bend over and put your elbows on the table.” Ugh. Not again!

All in all, I was very impressed by Dr. C and I would feel quite comfortable in his care.

On the drive home, I received a call from the father of a friend of mine at work. Dr. C had removed his prostate five years earlier, and he was very pleased with Dr. C and the outcome of the surgery. It’s always good to hear that from someone with first-hand experience. It reinforced my thoughts about him.

So does all of this mean that I’m not going to see Dr. I in Indianapolis (get it?) on Monday? Nope. I’m still going to drive up there and check him out. I guess I’m just wired to comparison shop. 🙂

Has the glühwein put you to sleep yet??

On to today…

It was a bit of a rough start this morning. Even though everything was so positive with Dr. C, I had a whole lot rattling around in my head last night. I did sleep better than the night before—but not the best—and that made me a bit of a grouch this morning.

Mid-morning, I received a call from Dr. C’s surgery scheduler and spoke with her about scheduling the actual procedure. That was a bit unnerving. I figured that I’d go ahead and get myself on the calendar, and if Dr. I is even more impressive, I can schedule the surgery with him and cancel the date with Dr. C.

I’ll keep the date to myself until I land on the actual surgeon and the final date. That should be by mid-week next week.

So that’s it for this update.

Oh. “What the hell is glühwein?” you ask… Glühwein, or mulled wine, is a German holiday tradition—wine heated with spices like cinnamon, cloves, honey, and orange and is served warm. (I’m sure there are a gazillion different versions out there.)

You would think after spending the evening running around in 12-degree weather last night buying things, I would have been zonked. And I was. I went to bed around 10:30 and fell asleep pretty quickly by my standards.

Then the clock read 1:09 AM.

From that point on, I was tossing and turning until the alarm went off at 6:30.

Needless to say, my four hours of meetings this morning, plus another after lunch didn’t help energize me much today.

I came home to pick up my paperwork and questions for the surgeon, and by 3:15 PM was on my way to Cincinnati.

My stomach was in knots the whole drive down there and anyone who changed lanes without signaling received a verbal lashing from me. I would not have been good company.

The surgeon was great. He put me at ease within minutes as he started his consultation.

I’ll share more of the details tomorrow because, honestly, right now I’m too tired to think straight and am going to call it a night.

Okay. I have a problem.

When one goes Christmas shopping, isn’t one supposed to come back with more for others than for one’s self?? I may have read that someplace… But apparently I forgot about it tonight, because that’s what happened. It wasn’t a complete bust—I did pick up a few things, but not as much as I expected to. Oh well. I’ll try again before this weekend’s forecasted snow.

Today was a good day all around. A good night’s sleep (no chemical assist required since last Friday) certainly helps make the day much better.

I had another call from the surgeon’s office today asking for my insurance information in advance of tomorrow’s appointment. I’ve got my questions printed and my file folder ready to go.

So that’s it. Nothing else to report for the day.