A Legend In My Own Mind - February 9, 2009

While writing this blog has been both cathartic and helpful for me, it's a lot of work. I try to update at least once per week, and I have been doing so for ten months so far. It helps me to organize my thoughts and research, and it gives me a place to vent. Since I am an organization lover, even my rants can be orderly here - after a fashion. I also try to make it helpful for you people. Who are you? Most of you are anonymous, hitting the blog and running. I get a lot of hits from Google, plus an occasional hit from CancerCompass or some other search engine. A few are looking for the pictures to use for their own purposes. No problem - that's how the pictures got here in the first place! Most are searching for specific information about bladder cancer and related treatments. I can usually see the search inquiry, and now that the blog is semi-mature, it looks like most of the info that you are searching for is here somewhere. I rarely know if you find what you are looking for on my blog or not. With the impatience of today's net-surfers, it's probable that many don't. Not much I can do about that.

Even so, I don't require any feedback to keep going, though it's nice from time to time. I have answered to the best of my abilities the only three direct questions that came in via the blog contact form, and several indirect ones deduced from your various search terms. I've also had the pleasure of making the virtual acquaintance of David F and Andy P in England and HK in Canada, which has been a great experience. And I've corresponded with Doug in Michigan, Robyn in Tennessee, and a few others who also have bladder cancer. It seems we are all members of a group that nobody wants to join - the bladder cancer club! Add to that Deb in Arizona, Sue in Canada, Susan from New York, and Crystal from Nebraska who have had husbands and fathers and other close relatives with bladder cancer. As far as I can tell everyone in our little club is following the TURBT and BCG protocols and having reasonable success and variable levels of discomfort.

In a post last month I made this statement,

"I can't claim that my insights here represent any level of brilliance. If they can alleviate some stress and concern for anybody, I will be pleased."

There is evidence that some of you have been aided by my sharing, so I am pleased. You have put comments on the blog and/or sent encouraging emails via the "Contact Me" photo link near the bottom of the column to the left. And in my last post I updated you on David, Andy, and HK. Here's some of the other feedback...

Last weekend I got this very gratifying anonymous comment: "I'm 4 days away from my first TURBT procedure. I know exactly what you're talking about. I've been putting on a brave face for my family, especially my wife. But I'm pretty freaked out inside. Thanks for writing about your experiences. It is really helping me prepare." Have not heard how the TURBT went, but we all hope it's OK. He should be pretty much back on his feet this weekend.

Deb in Arizona provided this comment: "Hi Steve, sounds like you are doing A-OK. My husband is NOT a computer user but your descriptions of your TURBTs is pretty much what he went through - twice coming home WITH a catheter and twice without (yes - 4 TURBTs so far). ...Anyway - just wanted you to know we are always interested in your updates and appreciate you continuing to do this. It's very helpful and makes, at least my husband anyway, feel not quite so alone... keep up the good work - and keep exercising - even if it does suck! Deb"

Crystal from Nebraska is battling cancer on several fronts. She provided this comment: "Interesting read! My dad has been diagnosed with bladder cancer so was researching and reading which brought me to your blog. Currently I am fighting skin cancer...for 10 years, using different protocols and praying vehemently for a natural, non-invasive way to put my body in position to heal itself. No permanent damage....but with the research of bladder cancer I came across the Johanna Budwig protocol for cancer. I started this last Thursday and have noticed amazing results in the facial spots disappearing! Thought you would be interested researching this because the cost and regime is simple! and feels 'right'." The Budwig protocol that Crystal references is based on balancing certain types of lipids (fats) in your diet, and boils down to eating cottage cheese with ground flax seed mixed in daily. I think it's consistent with the other cancer-fighting regimen in the cancer-fighting diet described in my diet post, and it's worth a look. What probably won't work is continuing to eat fried food, chemical laden food, and sugar whilst hoping the Budwig protocol can fight back the cancer by itself! You can check it out for yourself here: Budwig Protocol

Crystal also adds this very good point, "John 10:10 says that Satan comes to kill, steal (thief), and destroy. So does radiation, chemotherapy and body part removals via surgery."

And my virtual beer buddy, Doug in Michigan, Googled about TURBT and beer, prompting several posts that have now been found by other anonymous searchers. Doug will appreciate the shout-out here and will now know he's not unique. The graphic at right is for him and all those who wonder about alcohol and bladder cancer! Doug said in his last update: "Have not visited your site for a while. Glad to hear you are doing well (and still mentioning me regularly-Ha!). You should know that it appears you are doing very well with diet and exercise. I am doing OK but still not strict enough with diet and regular enough with exercise. Keep up the good work!"

Another comment came in from Ron last week: "I was diagnosed with bladder cancer in October 2008, had a TUR on 11-11. Have finished 3 BCGs with little after effects (some blood on day one and two; urgency for a couple of days.) I am planning on a Dr. Lamm-type vitamin regimen soon. I will continue to follow the blog -it has a lot of good, sound information. Thanks for starting it." So thanks for the encouraging words, and keep in mind that Dr. Lamm himself told me that the diet change would be more effective than any vitamin regimen, including his own!

From an anonymous reader in Michigan: "I pray for a good result for you. I had my own cysto on Friday and am now heading for my second Turb and the mitomycin-c instillation I didn't get the first time. The doc saw a spot and since I had a huge (racquetball size) tumor and my bladder was perforated when the took it out, I wasn't able to get the Mi-C. It's been six months since my first Turb and I was beginning to feel like I might get out of this real good, but now its back to the grind....Probably some BCG in my future too." Hang in there, I believe strongly based on my experience and others that the chemo post-TURBT makes a huge difference!

One person I have not heard from in a while is Robyn from Tennessee. Her last contact was in August: "Hi Steve, This is a great blog. You are a talented writer. I too have bladder cancer. I have had 2 surgeries and six BCG treatments. The cancer has come back and I am scheduled for surgery again 8/19 and then 6 more treatments. It's been a rough road but if you can deal with it with humor and love, it always makes it better. We ride motorcycles a lot also. It's wonderful, isn't it? Have a wonderful day and keep up the wonderful work!!! It is a blessing. I will be praying for you."

And I got a very happy note from Andy from somewhere in the USA: "Hi Steve, I'm glad to read that you are making good progress. I have been following your events since the discovery of me having bladder cancer in October of 2008. I received the last of my BCG treatments on 12/22/2008. Thanks for your advice. My experiences with BCG treatments and that darn blasted catheter were about the same as yours. I finally received the results of my last biopsy taken on 2/02/2009. I'm very happy and thankful to announce that I'm presently CANCER FREE! Thanks to you, my family and friends I never accepted the thought that my treatments would fail. If it were not for my observant family doctor I would still have cancer lurking around my bladder. Every time I visit his office I have a huge urge to thank him again and again. GOOD LUCK STEVE. I will continue to follow your blog page and pray for everyone's success."

So thanks for the feedback from those who are brave enough to comment or contact, and those that are "hit and run" are welcome also. All can keep in mind that we are not alone in the battle, and that proper medical care, prayer, diet, exercise, and attitude can indeed work wonders.