- WebCafé home
- Newly Diagnosed
- Treatment Options
- Non-Invasive blc
- Invasive bladder cancer
- Upper tract TCC
- Metastatic cancer
- Clinical trials
- Survival Guides
- Resources USA & Canada
- Resources Europe
- Clinical trials
- Alternative medicine
- Financial help
- About Us
My tale is one of incredible good fortune, and incredible good health. To speak it seems to flaunt it, and this has kept me from joining and attending support groups, ostomy groups, who supported me with great kindness in my calls to them pre-surgery. And it kept me from writing here until being directly urged to do so.
And on-line, I was discovered by two people whom I later accused of being angels assigned to patrol the internet, looking for anguished souls needing help. And this may be true. They were certainly angelic to me. They are Roni and Ben Olsen.
In my small town area, many cystectomy patients end up with external bags. Those who get an internal reservoir will also get a stoma. Urethral reconnection is rarely if ever done, and my urologist said it would be impossible in my case because of tumor development right at or in the urethra.
I was accepted. I was elated, but my urologist was furious -- "aggressive patient-grabbing tactics", telling patients there's such a big hurry, willing to use bank blood in surgery instead of waiting additional weeks to get it from me, bla bla."
Five weeks after getting out I was back on my bike. At four months I went on one of my regular solo backpack trips in Yosemite, three nights out. Another one the following month. Joined a gym. At age 70 my body looks better than it has in three decades. Recently a granddaughter whistled at me.
While at Norris, I acceeded to Dr. Skinner's request that I join a randomized study he was conducting, one half to get chemo and the other half merely observed. I landed in the observation group, and in retrospect am very glad of it, but would feel otherwise if a metastasis had appeared, and it still might. Dr. Skinner says in the case of bladders like mine, about 90% of metastases will appear within two years, and almost all the rest within the next year. I'm down there every six months for all kinds of tests. The two-year checkup was three months ago. All clear so far, and Dr. Skinner says he thinks I'm riding a winning horse.
We're talking full disclosure here, folks, so let me tell you about my sex life. It's glorious, and without the complications and troubles of some damn relationship. Amazingly, all the 'at-home' joys are fully present, from the beginning of a sweet fantasy all the way to the crashing, gasping finale. Amazing because zero erection and zero ejaculation! (No disturbance of the finale to grab for a kleenex!)
I thank you. Don't hate me. I'm just very lucky and very happy. I have NOT led a virtuous life, quite the contrary, showing there's simply no justice.
Some information: right after my diagnosis I found the following on the public computer in my natural foods store, under "bladder cancer": "Patients were also randomized to multiple vitamins in the recommended daily allowance (RDA) versus RDA multivitamins plus 40,000 units vitamin A, 100 mg B-6, 2,000 mg C, 400 units E, and 90 mg Zinc (Megadose). Recurrence after one year was markedly reduced in patients receiving megadose vitamins. Megadose vitamins A, B-6, C, and E plus Zinc reduce tumor recurrence in patients receiving BCG immunotherapy. Further research will be required to identify which ingredient(s) provides this protection." A citation is provided, from Mission Pharmacal. [see: Oncovite]
I've followed this every day, without fail, and also these recommendations of a local herbologist: a bottled tincture called "Red Clover Stillingia Compound" from Herb Pharm (known in cancer literature as "Hoxsey's formula); turmeric (a powerful anti-oxidant; tastes terrible but do-able with orange juice)); shredded astragulus root, green tea. Don't known whether any of this worked, I say, alive and speculating.
And I’ve found that rather than the Depend Guard for Men for nighttime wetness, the inexpensive, more compact, available-everywhere #1-size baby diaper with a penis slit scissored in at one end, folded over and held with a rubber band, tucked inside your briefs, only the penis covered, no sitting in a puddle, works just fine.
Best wishes to one and all. Live joyously with what you have. Might as well. It's the only show in town.
"A postscript and a Big Warning from four years later, four very good years with one Horror Story. Middle of one night my Kock pouch exploded and I nearly died of pain and peritonitis. Yes, exploded! (Well, perforated, said the emergency surgeon.) I had over-Kegeled, got my pelvic floor muscles too strong, became too pleased and proud of dry nights,
|Last Updated ( Friday, 14 November 2008 )|