There is so much woe in the tales told by cancer sufferers, and by cancer survivors, and so much heroism and courage, and so much humanity.
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.
My bladder cancer diagnosis came two days before Christmas, 1997. The urologist’s cystoscope revealed multiple tumors, clusters of tumors. The pylogram and the MRI showed deep invasion and (scariest words of all) "probable vascular involvement." The bone scan and the chest X-rays were clear.
The TUR came six weeks later. Never had such pain and distress as when waking from that, continuing without letup for the next three days with the catheter emptying into a bag stapped to my leg, constant pain and an extreme, unsatisfiable need to pee. Bad news from the pathology department. My urologist read it in my presence and said "This bladder is history." He didn’t like at all what he read: in situ, non-differentiated, squamous, aggressive, bla bla.
I got on-line, and started posting here and there. I was telling my story and looking for information on how I might sue the ass off of my doctor, a possibly senile old gentlemen in his eighties who announced his retirement two weeks after my diagnosis and one week after I demanded my entire medical file and all his records concerning me. The very day of my diagnosis I began research, and found immediately that the diagnosis should have occurred long, long before. For two and a half years he had my repeated reports of painful, frequent and sometimes unproductive urination, and for eight months he had my repeated reports of actual blood in the urine. Other than sending me twice for a urinalysis but NOT requesting the cytology test for cancer cells, he did nothing, until I wrote him a panicked letter saying I was getting scared out of my wits, and then he arranged for a urologist to take a look and of course the cancers were discovered immediately.
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.
Many e-mails with Roni and Ben, and because of them I became adventurous. They told me of the leval of care provided at "comprehensive cancer care centers" (of which I believe there are a dozen or so in the country), and in particular of the fine care available at USC/Norris Cancer Hospital in Los Angeles, and of the skill of the chief surgeon and head of urology there, Dr. Donald Skinner, pioneer in this country and leader in the development and refinement of the Kock pouch.
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."
Woke up in IC after the cystectomy/prostatectomy. Hey, no stoma, and there’s a tube up my cock.
Actually, things didn’t go well for me in Norris. An "ileus" (sp?) developed; my intestines went on strike, no peristalsis, no functioning whatever. Food would go in, nothing would come out. The belly would get bigger and bigger for a few days, pain would increase, then a huge explosive vomit, then horrible tubes down my nose and pumping and draining green bile and other bad stuff. Then start all over again with the same result, repeated three times. Weight was going far down. When Dr. Skinner and team (it’s a teaching hospital) came for their morning rounds I said it was becoming clear to me they had me there to do a skeleton demo. At various periods was fed intravenously with bags of white nutrients said to cost something like $5,000 a bag. Was there a full five weeks until finally a dear, darling poop.
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.
Life differences and drawbacks? Well, the old-fashioned bladder is surrounded by muscle, unlike my high tech, handcrafted model, so of course I’ll never again have a "gotta pee" feeling. Gotta be a clock watcher instead, including all night, when a little multi-event timer (from a kitchen supply store) wakes me every two hours. And I wear the recommendation of the Norris ostomy nurse: a Depend Guard for Men, with a penis slit cut in and then folded over so I’m sort of hanging inside a pouch, the whole thing kept in place inside my jockey-type briefs. They’re usually dry nowanights; I keep the pelvic floor muscles toned up with occasional repetitions of Kegal exercises.
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!)
Did you perhaps want to know not quite so much? Well, continuing in the spirit of full disclosure, I’ll make it even worse. I’m a living, breathing insult to any hard working taxpayer without the compassion of, say, a George Bush ha ha fat chance. Because here are the facts. Although well educated, and after having made a lot of money over the years, just before Social Security kicked in everything went belly-up, and just before my diagnosis a low-paying job ended, and I went on Medicaid (Medi-Cal in California). In that status I found myself king of all the medical care I surveyed. Readily accepted at Norris and readily given all the elaborate, advanced, medical testing and care I’ve described. No insurance premiums, no bickering about coverage, no co-pay, just "here I am". The providers don’t get paid very much, but everywhere I looked they’re willing to provide.
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.
Final recommendation: try everything you possibly can to get to one of the big, major centers for this kind of work. My local urologist does maybe three or four cystectomies a year. Dr. Skinner and team do four a week. Ask about getting a urethral reconnect.
Best wishes to one and all. Live joyously with what you have. Might as well. It’s the only show in town.
Bill K. firstname.lastname@example.org
"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,
large capacity which I never bothered to measure, and I’d forgotten there was
a recommended limit. Don’t let this happen to you!