New Year - Path Ahead - A Good Story - January 3, 2009

It feels a bit odd typing in 2009 for the date. Last year went by quickly. Busy with work and work related travel through March, surgery in April and again in May, BCG in July/Aug and Oct/Nov. Only a few moments to work, play, and breathe in between! Now what's in store for this year and beyond? As most of you know, I have been cancer-free since May 22, 2008 - two days before my 49th birthday. While it was a nice present to have, it's not been very long in the big scheme of things. Except for a very few close friends, most of the folks that I work with and socialize with have taken the news of my cancer diagnosis the way I used to - not wanting any details, and desperately eager to receive any news along the lines of the cancer is now ALL GONE. That news is greeted with relief, and again no desire for details, as the only other options must surely involve a premature death and other unpleasantness. Having recently "been there" attitude-wise, I think I can understand it. So those of you in that category should continue to be assured that the prognosis is good, have a happy new year, and skip ahead to the last paragraph to read the very encouraging story I got from a new contact in Canada last week.

The rest of you will want to understand that Bladder Cancer is a dogged enemy. Chances of recurrence are extremely high. That's why radical surgery has the best survival statistics, albeit with severely compromised lifestyle (mostly not evident to the public). For Grade 3 disease, which is what I had, the stats show something like 80% chance of recurrence within five years. Only after that can one begin to breathe a bit easier, and annual inspections FOR LIFE guarantee that I will never be able to rest assured that it's ALL GONE. That fact is not so bothersome, because the name of the game in managing any serious long-term disease is to stay ahead of it - to postpone mortality from that cause until another (hopefully "natural") cause does the trick. If I can avoid recurrence for two years, the prognosis for five years is improved. So for breathing easy, there are six months done and eighteen more to go, then another 3 years before I can fully "relax." Does this mean that I will be able, after 4.5 years of "all clear," to go back to my sugar-laden fried food and chemical preservative rich diet? I doubt it. For one thing, in addition to BCG and prayer, diet will be the single biggest contributor to avoiding recurrence. The diet is intended to stop "pushing the buttons" that could trigger cancer and instead eat things that show evidence of actual cancer fighting. So abandoning it seems risky and unproductive. And what of the much-hated exercise? I suppose that continued "all clear" signs will provide the positive motivation I need to continue. And, of course, there are other benefits, especially for the heart, which is something that I was already at risk for before all this cancer business started. So it continues - I went today. And I hated it.

What's the path ahead for 2009? We start the year with another cystoscopy (visual inspection) in less than three weeks on January 22. These medically non-invasive (albeit personally VERY invasive) procedures continue quarterly for the first two years. If clear, we follow that with three weekly BCG treatments, then wait until late April and inspect again. If all clear then, no BCG treatments - they space out quicker than the inspections. Next re-inspect in July with 3 more BCGs, then October inspection only, and done for the year. Quarterly inspections continue in 2010 in January, April, and July, then go to every six months for a while. If ANY cystoscopy shows anything of concern, there may be a biopsy in the office, but more likely I shall have to get a third TURBT surgery to see what it is. Based on lab results, other more drastic surgeries will likely follow - and it's best for all of us NOT to focus on that outcome at all. Having a positive attitude about prognosis has a good track record in the cancer game. So all of you can help keep me on track with that. Be advised that having a positive attitude about exercise is not a requirement...

In other news I got a comment posted to the blog last week from Phil K. in Canada. He was recently diagnosed with bladder cancer and just had a TURBT last week. The doctor's impression is that it's a small, very low grade tumor, and that Phil will not have to do any BCG or any follow-ups except the occasional joy of cystoscopic inspections. He was pleased to hear that my diet includes chocolate (70% or greater) as a cancer fighter. There's been quite a lot of bladder cancer in his family, but all the outcomes have been good. Here's some of the story in Phil's own words:
"My father had it, and so has my sister. Both of them had TURBTs and my father had three LARGE tumors removed that were higher grade and he was tumor free for nearly 6 years. Another TURBT removed it. My sister has had one removed, and goes for her regular checkups. I'm taking Vitamin C, Cod Liver Oil, Vitamin E and Flax Seed Oil. I was told that chocolate is a cancer killer and that I should eat broccoli, vegetables and a higher fibre diet and drink plenty of fluids. (I think I'm going to float away). I am avoiding refined sugar, caffeine, and sugar substitutes when possible. I'll be checking your blog and staying healthy."

So there are lots of good bladder cancer stories out there. Their lack of drama makes them poor candidates for blogs, which perhaps explains the absence of good blog success stories. Stay tuned here for more good drama!


TKO said...

I, too, heard positive thoughts and images contribute to good outcomes - some add mentally creating images of 'beating' cancer cells. Maybe you can invent a treadmill that works like a video game where the longer the distance/harder the exertion, the more cancer cells on a screen shrink!

Kathiesbirds said...

Hey Steve, glad to hear you are keeping up the healthy diet and doing the exercise in spite of how you hate it. I could take some lessons from you in that department! I hate gym type exercise but I love being outside, so I try to make my exercise fun and thus get it without trying (if you know what I mean!) For me, hiking is easy. It's doing sit-ups and push-ups that I find boring. I hate repetition, but that is what exercise is all about!

Anonymous said...

Hi Steve. I made a comment yesterday (1-24) but do not believe it was forwarded. I was diagnosed with bladder cancer in October 2008, had a TUR on 11-11. Have finished 3 BCS 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 vitaman regimen soon.

I will continue to follow the blog -it has a lot of good, sound information. Thanks for starting it.


Steve Kelley said...

Thanks TK and Kathie, and welcome to Ron. All the best with your treatments. The BCG gets a little more severe each time, so starting off easy is good!