Going Public - May 1-5, 2008

Welcome to the Bladder Cancer Weblog!!! For some of you it will be the first time around, so let me give you a quick tour. The photo at the top is a gorgeous Ferrari Fi-430. It does not belong to me, but to "new age guy" mentioned in earlier blog entries. He was kind enough to let me drive it, and the car and I bonded instantly. I think it misses me, too! On the left we have my CURRENT STATUS, leading off with a link to this post for first timers and a link to the FIRST POST IN THE BLOG so you can read the story from the beginning to the current period.  Below that is a short summary section of what's transpired do far. It's there to give fast info to those who don't care for my verbose style. Just below that are POST LABELS so those of you who have found this blog via a topic search can find all the blog posts related to a specific topic by clicking on it.  Below that are some useful reference links.

Then there are a couple of mechanisms to subscribe to the blog updates, either via reader or via email notice. Below this are recommended books, followed by details of my medical history - provided for any who might be in a similar situation. At the bottom of the left column are other things that may interest or amuse you.

Below that is a short medical history and below that are supplemental links to specific topics of interest to anybody with bladder cancer.

In the large area center and right (where you are reading this now) is where the blog entries go, newest on top. You can also find the entries listed in chronological order on the left side in the BLOG ARCHIVE, near the bottom. So those so inclined can read the whole story from the beginning! Or jump to any title that looks interesting. Click on any entry's title and it will take you directly there.

The blog entries describe the details of the main story of my battle with bladder cancer. The gory parts are NOT described there in detail, so the reading is safe for all but the most squeamish. Instead, those graphic details are hidden behind links with appropriate warnings - often with an estimate of how stomach-churning such details might be. Click on those at your own risk! At the bottom of each blog entry there is a link that counts the number of comments. Click on it to add your own comments as you see fit. This week's entry describes the thoughts and process I went through to let folks know about my situation. It's not easy news to communicate, and I appreciate all of you who are interested to read along as things progress...


One thing that's been a major concern is how to break the news to folks. There is an inner circle of friends and family that were informed of every step. The middle circle, concerned folks at church and at work, found out after the diagnosis on March 31. Just disappearing for surgery without explanation would have been rude. You can take the "minor surgery - couple of days - no big thing" route, but that plan creates tracking problems - who have you told and who not? And some people want to know only the minimum fact set, some want the main story, and some really get into the graphic details. It's impossible to predict who is in what list. Sometimes it's men that want the details, but often it's women. In many ways they can be tougher and less squeamish than men.

Public law, the medical community, and the human resource department of my major corporation are all set up to keep everything private and confidential. That's why you have to sign all those HIPAA forms (Health Insurance Portability and Accountability Act of 1996) at every doctor's office and hospital - to give the docs permission to talk to each other about treating you. Lots of folks do prefer to keep bad news private, so the system is good for them. I can't see handling the added complexity of tracking lists of "who knows what," so I decided to let folks know in an orderly fashion, and ultimately it would just become general knowledge in the circles where I function - church, work, and the motorcycling community. I talked to our HR manager, who was very sympathetic. She was pleased to hear about a medical problem that did not seem to be leading to a tragic ending - she gets all of those. And she's dealt with severe illness in her own home. I asked her to let her staff know so they could help keep rumors in check. Soon the building might be buzzing with "Steve's dying of cancer" misinformation, and I want the official spokespeople and my close friends to have the details to rebut such foolishness.

So how to inform those in the outer circle? I had some practice breaking the news already, and it often did not go well. I decided to call a buddy who had been around the block - he had shared some graphic details of his issues with an episode of priapism (graphic content), so I figured he'd be tough enough to take it well. I was wrong about that. He'd lost a number of good friends in the last couple of years, and he mentally leaped to the wrong scenario. We talked for over an hour while his dinner got cold, and ultimately arrived at the communication plan that was outlined in the last blog entry. Basically lead in with NON LIFE THREATENING, drop the "c-word bomb" and be upbeat about the range of probable outcomes, and end with MY LIFE IS NOT IN DANGER. I tried this approach in general a number of times in face-to-face meetings with folks where that type of meeting was possible. Results were somewhat mixed. So I spent the last few days crafting an email that would elaborate on that structure. While driving home from the airport on Thursday I called a friend who had a question about purchasing a new mattress. We had purchased and returned one from Costco, and then purchased a different one that we like a lot. We discussed pros and cons for a bit, and he asked if we were attending an upcoming dinner party. When I replied in the negative due to upcoming surgery, I realized that he had not heard the news. So I tried a verbal version. By his reaction, I guess it still needs work. He later sent an email after reading this blog, which he found to be "inspirational." I will try not to let it go to my head!

On Friday and Saturday I started emailing to the outer circle folks. I sent each family a separate message, based on the following framework, personalizing each one a bit:

Subject: Medical News Blues<- span="">

I have found out that I have a medical condition that is NOT LIFE THREATENING, but it sounds bad. I was diagnosed with bladder cancer. If you are going to get a cancer, this is the one to pick - it's very treatable and the prognosis is good. While my life is not at risk, there is still a battle for my bladder. If they can stay ahead of it (kill it faster than it grows), eventually I will just need annual checkups to make sure it's gone. If not, they can build me a new bladder out of spare parts in the abdomen. So the worst case is a major surgery, and the best case is a nuisance. So while MY LIFE IS NOT IN DANGER from this, your prayers and good thoughts would be appreciated.

Sorry for the bombshell. No good way to tell folks about it. I am upbeat and optimistic and feel fine. So you should be too!

I have started a blog to share details (and the gross stuff is hidden behind links, so you don't have to see that unless you ask for it). I will send out a big email distribution whenever I update it. Please take a minute and check it out. It's supposed to poke fun at all the ridiculous things that one goes through. Feel free to leave wisecracks and other encouragement using the comments feature on the blog.

http://gotbladdercancer.blogspot.com/

Later,
SK

This format seems to be working quite well. It gives people time to absorb and react, and/or do a little research and come to terms in private. Not so with a phone call or face-to-face. I have found that Christians in general seem to handle the news better than others. Feel free to borrow the format should you need to break bad news to loved ones!

For the vast majority of folks who are e-savvy and use email and the internet, this approach combined with the blog should work well to keep everyone up to date. I realize that folks can subscribe to updates, but I plan to send email reminders anyway. The list is over 50 folks for the regular updates. The problem is for the few (about 10%) who won't use email or read the internet. I will phone them using the basic structure of the email. If they won't read the blog, I'm not sure how to keep them informed. Would be interested in any ideas you readers have!

Use the comments function below. You click on the "x comments" and it will take you to another page, where you can crack wise or leave other gems of wisdom!