I finished my chemotherapy (YES!!!) last Thursday and am bearing with the unpleasant sequelae for one more week.
But no time to waste. It is time to get my bladder, the source organ of my cancer, removed. The exact extent of the operation is unknown because there are three options for replacing the bladder from which to choose.
I followed my urologist’s advice about feeling free to seek a second opinion. After research, it appeared that my two most reasonable options are Aurora Medical System (because my urologist and all my other doctors are there) or Medical College of Wisconsin.
The first appointment my husband and I had was with one of the two reconstruction urologists at the Medical College . He has been there for ten years.
He began by naming the first option. The name went in one ear and out the other because he immediately followed with, “This option means you will have to catheterize your vagina.” “My vagina?!” I exclaimed. “Well, down there,” he said, opening his legs and pointing at his groin area. “There are actually two openings there but one is just a little (showing about one and one half inches with his thumb and finger) further up. It’s actually called the urethra.”
I am a woman. Did he really think I don’t know my own anatomy? Even if he had such a ridiculous thought, why would he explicitly mislead and so profoundly patronize a patient? In all events, and for reasons I don't recall him articulating, he decided this option wasn’t the one for me.
He asked about my prior surgeries. I of course had detailed these in the multi-paged forms I was required to complete before coming to this appointment. But I reiterated the salient ones: two abdominal surgeries, the second to place a mesh because the original incision herniated. He said that made my case complicated and put me at higher risk.
The second bladder option is the urinary equivalent of a colostomy. A short conduit is created from the ureters (which carry urine down from the kidneys) out onto the skin where the urine would dribble through an “appliance” attached to the skin and into an external pouch.
He decided this probably was not an option for me either because he believed it would be hard to find a flat place on my abdomen for the appliance. He said this while looking disdainfully at my abdomen, swollen with chemo-related, steroid-induced weight gain. But, he added, “I’ve operated on people bigger than you.” (Thanks, pal.) Would it help to delay the surgery so I can lose some of this weight now that my chemo is ending? Ask the cancer guys, he responded.
He believed the best option would be the most complicated: the creation of an “Indiana pouch.” Although this was the option I was most interested in hearing about, our attention spans were waning at this point. The surgeon had his crib sheet of information displayed on the computer screen so he was constantly cued to convey all of it to us. But it made it challenging to interject our questions and absorb all that was being conveyed.
The moment we left I turned to my husband and said, “I will not let that man touch me.” He agreed wholeheartedly.
Two days later we met with my Aurora urologist. She said she wants my bladder out as soon as possible. That way, if any of those cancerous small cells actually managed to hide out during chemotherapy, they don’t have a chance to escape!
She has been carefully planning for this surgery. She pulled out a large, blank sheet of white paper and began drawing and explaining.
As to the second option (the short conduit from the ureters out to my skin and into a bag) she saw no impediment to finding a place for the appliance on my abdomen. This is also the medically healthiest option (low risk of infection and other complications). Nonetheless, my family and I don't cotton to it based on the “ick factor.”
As to the Indiana pouch option, my urologist already had arranged to bring in a superb general surgeon highly reputed for operating safely and skillfully on patients with potential bowel issues. I have this potential because of my two prior abdominal surgeries.
Suffice to say that after an operation, things inside can adhere together forming scar tissue which, in a subsequent surgery, can then tear away from unscarred tissue it had attached to - like bowels - which injures the bowels. During the bladder surgery, my bowels need to be moved out of the way after the mesh is dealt with. So this surgeon will begin the surgery, prepare the way for the other two surgeons including moving the bowels aside safely, stay on-site throughout the entire surgery so he can be called back in immediately if needed, and be the one who “closes” me up. My urologist and her partner will create the Indiana pouch.
She further has planned for an approximately five-day recovery in ICU before moving me to a general post-op unit. She listened intently when I told her how quickly I metabolize pain medicine during surgery as well as which pain medicines work and which don’t work for me postoperatively. She made notes of this as well as her ideas for dealing with this important issue. (The other surgeon told me to tell that to the anesthesiologist.)
Easy choice: My urologist and her team.
Then the hard news: She and her partner do not do the first option, called a neo-bladder, the one that may require catheterizing through my urethra. This option may turn out to be best if there is a chance a surgeon may not need to go into my abdomen where all those adhesions and bowels are, but instead confine the surgery to the pelvic area below the abdomen. That would reduce the risk of the surgery for me.
Next step, consult with a different Medical College physician who can do a neo-bladder. Since my urologist wants my bladder out sooner rather than later, she offered that if a surgeon at the Medical College can schedule either surgery (neo-bladder or the Indiana pouch) sooner than she can get surgery scheduled, then I should have the surgery with the Medical College surgeon. (You can understand why I have such faith in my urologist.) Then we will meet again with her as well.
To be continued….
© Jean DiMotto, 2011 Website: www.jeandimotto.com
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