“You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be; and whatever your labors and aspirations, in the noisy confusion of life, keep peace with your soul.” Desiderata
I have no bladder. Great icebreaker at cocktail parties, don’t you think? Actually, I use that when casual conversation turns to whining sessions…shuts them up real quick. But it’s true, I have no bladder, a decision I had to make to save my life. But I don’t want this to be a “woe is me tale” I want this to be entertaining. What, pray tell, could be entertaining about not having a bladder? Think about it for a minute, and say the words aloud with me, I HAVE NO BLADDER. What picture does that conjure up for you? Well, for me the thought of a reasonably attractive, outgoing woman of 48 in diapers, trying to cram them into blue jeans. Then I thought, oh, heck what the hell kind of underwear goes with no bladder? How about no underwear! WOW, this could be an experience. Then the dark side, the uneducated side–urine dripping down my leg, urine stains on all my clothing, the smell of urine wafting around, wetting the bed, sharing the diaper bag with my grandson, urine and intimacy…eeeek! This was controlling my life.
I live with an Indiana Pouch, constructed using part of the terminal ileum (end portion) of the cecum. The remaining ileum is first attached to the colon to maintain normal digestive flow. A pouch is then created from the removed cecum, and the attached ileum is brought to the surface of the abdominal wall to create a stoma. Continence is maintained by using the ileocecal valve, which normally regulates the emptying of waste into the large intestine. The ureters are attached so they empty into the internal pouch. I use a flexible 12 gauge catheter to empty the pouch several times per day. I do not have any external pouch, but I do wear a gauze pad between emptying. Sounds simple enough…getting there is half the battle. For women, complete hysterectomy is SOP; it’s the safety net, taking a very wide margin. So, it’s like 3 surgeries in one, excision of the bladder, radical hysterectomy and reconstructing a reservoir.
The surgery was uneventful, nine hours of deep sleep (who wouldn’t love that). The last thing I remember is singing Jesus Christ Super Star. Spent 4 hours visiting intensive care. I didn’t have the guts (no pun intended) to look at all the paraphernalia attached to my abdomen, so I just laid there and waited for the parade of nurses to Oooo and Ahhh over the surgery; many had not seen this before. When I finally had a peek, I was more freaked out about the staples and the detour around my belly button, than I was about the drainage bags attached to my abdomen. I also didn’t know my vagina was packed with gauze (result of the standard radical hysterectomy, my consolation prize) and the freebie appendectomy. I got so used to the parade of medical professionals, as soon as I heard the door open, I would automatically lift my hospital gown, much to the chagrin of the volunteer worker who brought my Sunday paper, he never came back.
It’s day 5 and I’m getting hungry and this nose hose is driving me nuts…it hurts, it hurts so badly I can’t even move. It shouldn’t hurt, but it does–as though it’s banging against the wall of my stomach. I’m throwing up blood and there’s blood in my stool. You know I have to have a little drama with everything. They keep giving me blood, but that is causing me to shiver uncontrollably–takes a day to figure out that I have a huge amount of antibodies in my blood and the blood has to be filtered. I’m getting frustrated. At 2 a.m. I’m roused and whisked off to gastro-enterology to have the inhumane “swallow the camera” procedure. It’s two in the F’ing morning for pete’s sake! Roll on your side–easier said than done when you have a gazillion hoses coming out of every orifice–open your mouth so we can spray your throat with a little banana-flavored numb-zit. That stuff tasted like bug spray smells…then we’ll put you in the “zone,” you’ll be aware of what’s happening but you won’t care. I’m on my side, mouth propped open, bug spray is trickling down my throat, I think I want to sleep, and I hear someone say swallow. I swallow. Immediately, my gag reflex takes over, I grab the tube going down my throat and pull it out. The doctors push me to the table and slightly dislocate my right shoulder in the process. More twilight IV and I’m out, procedure is complete, and wheeled back to my room. I have an ugly, bleeding ulcer. Never had stomach trouble, ever! It’s determined that the pain medication I received in ICU may have caused a small peptic ulcer that I may have had, to become this huge festering gob. This ulcer hurt more than the surgery. I get medication for the ulcer, and instant relief, out comes the nose hose. And for my next act of humiliation, out comes the gauze pack, yeeeouch! The resident and his interns in rotation) stroll in, you know the intern that looks exactly like your neighbor’s 21-year old son! “Ms. Leslie, we are here to take out the gauze pack.” “Hooray for me, I’m the luckiest girl in the world, everyone has a front row seat.” They go to great lengths to ensure my breasts are covered, but from the waist down, it’s open season. How can I describe this sensation, imagine your skin is knitted like a sweater, and you begin to unravel, one laborious stitch at a time…that’s what it felt like. But the good news, it means I’m getting better.
By now I’m very ambulatory, I’ve learned how to reset my own IV, and irrigate through the suprapubic tube and I’ve finally slept for more than two hours at a time. I want to go home. My hands look waterlogged from the constant flow of IV’s, all my veins have blown. All I have to do is await the pathology reports to see if this cancer has spread, but I’ve done my homework and I’m braced for the worst. You know how it is, you become the expert about your own illness, an armchair urologist-oncologist-surgeon-internist-nutritionist-urostomist- I’m-going-to-change-the-world-and-make-a-difference-for-the-next-bladder-cancer-patient…after I have another nap.
Hooray, hooray it’s staple pull day. The young man walks in with his hands in his pockets, and announces he’s here to remove my staples. Wait a minute! I haven’t had time to adjust to that thought, you are talking about click, click, click, my skin hurts click, click, click, …done! Huh? Done? I was supposed to be writhing in pain! What gives? I wanted to have something else to complain about. Behind him my urologist walks in, all pathology report in hand…you are clean as a whistle…no mets anywhere! “But you and I will be joined at the hip for the rest of your life.” “That’s OK,” I reply, “I’m ready for anything.” “You understand there is a 50% chance of recurrence?” “Yes, but there is a 50% chance of not recurring, that’s how I look at it.” I hate statistics, I want to go home.
The nurses have taught me how to use the leg bags, irrigate, clean the bags, attach a night bag, clean the wounds, told me what I can and cannot do for 3-6 weeks, I’m ready to go home…day 13. No fever, good blood pressure, a real shower, a real meal, a goodie bag of equipment and instructions, a handful of prescriptions and I’m out the door, very slowly. The daily stroll down the hall was not the same as the walk to the parking lot. Nor, was sitting in my daughters car as easy as getting in and out of bed. Smile and nod, keep telling them you are just fine so you can go home.
I can do this, just 60 cc’s of saline in a syringe and squirt it into the suprapubic…I’m going to implode! First day, a little nervous, second day, a little confident, third day, a pro. But these leg bags, sheesh, if it’s not cutting off my circulation, it’s sliding down my leg and peeking out from under my dress! That’s attractive! Oh, and did I mention, it was dead of winter in Chicago and I couldn’t figure out the underwear thing, so I didn’t wear any. When I ventured out of doors in my sack dress, my butt was bare; they don’t call it the windy city for nothing. My poor neighbors they’ve seen it all, God bless each and every one of them. I remember a particularly attractive day, where I didn’t have the energy to wear anything that matched. My hair was combed and clean, makeup was perfect, but I looked like a walking rummage sale. As I toddled behind my daughter in the parking garage, my leg bag slowly slid to my ankle got caught under my shoe. By the time I noticed, my socks were stuck to the Velcro straps, my ankles were locked together and the leg bag was bobbing up and down on top of my shoe. I finally gave up and let my daughter walk until she realized I wasn’t behind her. That was the one day I cried after surgery. I’ve learned how to manage accidents (it happens, who cares), clothing, sleeping on my stomach again, intimacy, the instant menopause from the surgery, urine that looks like egg drop soup, you know good days/bad days. I’ve had to make new friends because some of the old friends weren’t strong enough for the long-term commitment. It’s not a trip you stop and start; it is a journey of a lifetime, spiritual growth. Have I ever thought I made the wrong choice? Of course I have, I would be lying if I said otherwise. Oh, don’t for a minute think this is a cakewalk, there are risks with cystectomy as well. Kidney failure, infections, kidney stones the possibility that one of the ureters will disengage from the pouch, it will spring a leak and your body becomes septic, and of course, the unknown of recurrence.
What has this experience given me? I know who I am and that’s something few people ever experience. It has allowed me to get rid of a lot of programmed baggage and unnecessary worldly trappings to rediscover the kid in me. I have a sense of peace that is immovable. It has allowed me to build relationships that are more loving, but at the same time I’m not afraid of anything or anyone. It has shown me how to challenge myself with skills I didn’t even know I had. I’ve developed an uncanny ability to see through bull****. I’m looking forward to my first year anniversary in October and along with that comes the anxiety of tests, tests and more tests, but I am confident I’ll be looking forward for many years to come. (If you have questions, contact me direct at firstname.lastname@example.org).