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.  There is also my Wellsphere link (worth checking out). 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
Hi ->Name(s) here<- 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!

23 comments:

lee said...

With all the images on the site; can't we just get the cute Avatar "I am Steve's Bladder" like we use to see in 7th grade biology! kinda like the cute paperclip in Windows Word! :)

Besther said...

Steve, you are one of a kind. Keep up the blogging, I'll keep reading. And if people won't check the blog and don't use email, well, tell them to call when they have questions...then tell them to check the blog. ;)
jk but really, you are doing a fabulous job covering all aspects of what you are dealing with and we'll keep praying.

TKO said...

For folks who don't / won't have e-mail / Internet, we found a solution when posting updates on a loved one - tasking a relative / close friend to print and share with person who doesn't do e-mail. Cumbersome, but in this case it was older relatives and people were willing to go the extra mile for them.

Keep up the informative and interesting blogging! We'll keep praying and sending positive energy your way -

Geoff said...

Steve, Hi, I think the way you are sharing your journey on your blog is great. Would like to feature you in a larger online community of people interested in Cancer treatment and journeys... reply by email if interested. Cheers, Dr. Geoff Rutledge

Andy Anderson said...

Hi Steve,
I've felt numb ever since my Urologist told me that I have Bladder Cancer (Level-0 to Level-1).
For the past few days I have been unsuccessfully searching for someone, some place, or thing to calm my nerves and assure me there's hope. My wife and two sons have been brave about letting me handle the situation as I see fit by expressing confidence that we are going to beat this thing.
Thank you for setting up this site and taking time to express your feelings, share your knowledge, and give us an idea of what to expect.
Everyone that I've shared the news with gave me words of encouragement. Two of them even mentioned of uncles being cured over ten years ago!
You've collected so much useful informtion that it will take me a few days to comprehend and appreciate your efforts.
Your sample letter may prove to be helpful in telling my brothers. But, telling my 85 year old mother and keeping her in Idaho is going to be a challenge (I 'm living in Virginia).
Thanks again and I'll keep you in my prayers,
Andy Anderson

Steve Kelley said...

Welcome Andy,

I recommend starting at the first post and go forward from there. You will be able to see how it took me a long time to internalize the condition and a long time to learn about it. It will be overwhelming to take in information too quickly, and also needlessly discouraging. This condition is treatable, and few success stories are posted - perhaps because they are too boring? Take your time and don't assume the worst!!!

pk said...

For my 48th birthday, I got bladder cancer. I just had the TURBT by cystoscope.... and didn't like the 'burn baby burn' feeling after. My urologist said it was bad luck, but as the tumor was less than 1 cm he felt confident that it was superficial and low grade. My experience thus far has been trivial compared to others. I'm glad that chocolate is a cancer fighter because I've done my part this Christmas to kill everything for now and the future! Contact me at pkarza@gmail.com if you want to exchange emails. Phil

Bob J. said...

Steve, you and I are on the same schedule, having had the exact same tumor taken out 3/31/08. I've had a similar schedule of BCG treatments and haven't had the amount of discomfort you and others seem to experience, but I do have a concern. I suffer from continuous body chills which don't seem to abate with or without treatments. Have you uncovered any info confirming this is due to BCG or what to do about it?

Steve Kelley said...

Bob, I do get chills during the day of BCG. Quite severe. But never lasting beyond. I am not aware if this long-term effect you have is BCG related or not.

Wally said...

Hi, I really appreciate your information, I am just starting down this road, as I have just been diagnosed with bladder cancer. Fortunately, it was contained within the bladder walls, but it is the highly aggressive type. I intend to do all the "right" things possible. It is helpful to read all of your thoughts and information.

Larry said...

Thanks for the blog and your story which makes me feel I am not the only one going thru this. After surgery in August to remove the T-1 aggressive tumor which had not invaded the muscle wall, I followed a
8 week regimen of BCG followed by a scope. Everything was OK. In the interim I had my annual physical which showed a spiked PSA. My urologist was concerned but said BCG somtimes has an effect on the prostate. At that point I thought I had bladder cancer AND prostate cancer. Before we started the 3 week treatments, I had another PSA which was normal. Then I started the 3week series in Year 1.

The first scope a week ago, showed the tumor had returned. The urologist cut a specimen, told my wife to expect another TURBT the following week and asked to see us three days later after he received the pathology report. We were scared out of our minds. I'm sure there were a lot of prayers were said in my behalf when close friends and family learned. When we returned to the Dr's office, he told us that there was no tumor!! It was a small amount of the BCG materials that had stuck in the bladder. He assured us there was no danger of sepsis. Thanks be to God! We went from scared to giddy. Now a week later, I have decided that as much as I hate the BCG treatments and the way they make me feel afterwards, I welcome them as the only alternative.

I have never been a person who puts much stock in "karma" but.....the rest of the story. In the 1980's, I was the first employee of a non-existent cancer center at West Virginia University Medical Center. My goal was to raise enough private funds to convince Sen. Robert Byrd to make large amounts of federal aid available to build the center. I did what I was supposed to and Sen Byrd delivered. Now the Mary Babb Randolph Cancer Center is a large fully functioning center. Even in the early days it focused as much on research as it did on treatment. A young researcher joined us in those first years. My job at that point was to understand enough about cancer research that I could translate it into layman's language for potential donors. This young researcher was doing something with bovine udders and it had to do with bladder cancer. All this was still in my faint memories 25 years later when I started reseaching what BCG was and how it worked. Yes, Dr. Don Lamm was that researcher. My urologist states that he is the world authority on BCG. So what goes around comes around...positively in this case. Thanks for the opportuntity to share.
Larry in St. George, UT

Cindi said...

Haven't read blogs for awhile so just catching up. Was really sick most of March with side effects from BCG and noticed Bob's comments about chills which I suffered from during those rounds. They say that the effects are cumulative and I didn't really believe it until then. I have a cysto again at the end of this month and then more BCG in Sept. That will mark my 2 yr since my second bout with BC so I hope I'm looking at 1 series a yr after that. Thanks, Steve for all your great info.
Another site I'd recommend is the Bcan group at www.inspire.com

Anonymous said...

Hi I'm glad to hear you are doing well. Your blog is very informative and I wondered, my 89 year old father is scheduled to have this treatment. Do you think this is something he will be able to do (obviously I,his dautghter will have to help with cleanup.) He certainly can't walk fast, and I don't know about the holding urine for two hours, or the rolling from side to side and front to back. I'm wondering why the urologist recommended this for someone his age. Just wondered what your thoughts are.

Steve Kelley said...

I am sure an 89 year old man can handle this treatment. The tossing and turning is not necessary, just an extra measure that I take. Cleanup is not difficult, and the toxicity danger of the BCG is very overrated. Normal precautions and care should be sufficient.

randy/Baltimore said...

Hi Steve, My name is Randy,i live in Baltimore, just found your site and dove right in , now will back track and start from beginning as you suggest. I was given the news in april 2013, finished first soft scope awake( WHY)??? and two Turbts wit resectascopes weeks apart found to have two types grade 1 low and grade 1 high in citu but contained .Was told I was cancer free on third scope Jan 2nd and did dance of joy until I found out that I'd be given all these treatments and scopes for years to come.I Felt like I won the battle but lost the war! Just finished my first of 3 prevenitive bcgs treatments wed side effects were worse hat the first six...does this get better or is this the new norm?

Steve Kelley said...

It is normal for each BCG to get progressively more severe with symptoms and side effects. At some point you can reduce the dosage, which helps, and at some point it settles in to one level of discomfort. Pay attention to hydration - be careful not to go too little or too much, and replace electrolytes, as described in later posts.

Randy/Baltimore said...

Thanks Steve, I found your story as if a mirror of my own. I look forward to reading more and learning all the things the Md's don't tell you about the process.I hate surprises and every step so far has left me with surprises.

Steve Kelley said...

Thanks Randy,

If you would like to contact me directly, feel free to use the photo link at the bottom of the left column.

Anonymous said...

...thanks for this...good news is that I searched 'preparing for BCG" and your blog post popped up right away...I start my "first" BCG treatment this morning after a removal of two non invasive tumours March 24th...but they were high grade...fingers crossed on this next stage of the journey...

Roger Brown said...

The welcome dog is cute :)

Jim Labit said...

I was diagnosed with T1HG (Stage 1 High Grade) bladder cancer September 6 2015. A TURBT was accomplished on September 16, where the three centimeter tumor was removed. Being retired, I decided to get a second opinion from the MD Anderson Cancer Center, an approximately 8 hour drive from my home in Pensacola, Florida. They did a repeat TURBT on October 6th, finding no further evidence of tumor inside the bladder, but confirming the diagnosis of the Pensacola Urologist. I had my first BCG treatment on the 21st of October, with the sixth dose completed on November 25th. Fortunately, my symptoms were not as severe as yours, Steve. Primarily, I experienced frequency and a painful burning sensation during urination from the BCG, but none of the more severe symptoms you experienced. Don't know if it made a difference, but I have always tested positive on TB tine tests, because of exposure to someone with tuberculosis during my teenage years. I never got TB, but the exposure jazzed up my immune system to it. I have been scheduled for a repeat cystoscopy on Fen 25 2016, with a repeat TURBT a week later. MD Anderson wants to do a repeat cystoscopy on January 26th. Right now, I am not certain if I am going to return to MD Anderson or not. This local urologist seems to really have his act together. But I have always said that if I were to get cancer, I was going to see the best, which I believe is MD Anderson. Just wish Houston was not so far away. Will re-post after my next cystoscopy is complete. By the way, I took the diabetes drug Actos for 6 years. If you are taking it, you might want to talk to your endocrinologist about finding a substitute. Wish me luck.

Bigmark53 said...

Steve,

I have been suffering from bladder tumors since 2011. The first one was stage 0-1. Since then I have had tumors removed in 2013,2014,2015, and most recently on May 9th of 2016. I was a heavy smoker for years and beat myself up daily since I believe it to be a primary cause ofmy cancer.

I am 53 single with no children. I also have no siblings and the only person in my life is my 85 year old mom. I read your posts and will try the baking soda regimen. You are an incredibly positive person like I wish I could be at this point. I have another cysto next month and sometimes feel like giving up.It was nice to read your blog and see that bladder cancer is not a death sentence. I will try to keep going and use your battle as inspiration. Pray for me.

Jim Labit said...

Cysto was performed yesterday, January 27 2017. Fortunately, got an "all clear". I get another three treatments with BCG starting next week. Cystos and BCG interval will change now to every 6 months. I dread the BCG treatmments but it seems to be keeping the bladder cancer in check so will continue to suffer it every 6 months. 1 1/2 years now and still going.