In March of this year I experienced bloody urine, which persisted. Figuring that it probably wasn't kidney stones this time, I made an appointment with my primary care NP (Laura Gettler) to be checked out.
Likely due to insurance companies, there is a protocol in these situations. Though she thought it completely unlikely, she referred me for a blood test to check for infection. I checked to find a place that offered Saturday service and found one. Arriving mid morning, I waited about 90 minutes to be seen.
The results were negative, as expected. The next step was to have a sonogram of my abdomen. To get a quicker appointment, I made the trip to Plymouth - a small town about a half hour south of home. The technicians teasingly complained about my lack of belly fat (which apparently made their work more challenging) but in the end, confirmed that there was a growth of some kind in my bladder. Also as expected.
NP Gettler then referred me for a urology appointment. She instructed me to follow up with the urologist's office if I had not received a scheduling call from them within a couple of days. I didn't, so I did.
But when I called to schedule an appointment, I was told that they didn't do that; that I would need to wait until they called me. When I reported this to Gettler, she was surprised and annoyed.
I did hear back from them about a week later (we're now in mid March) offering me an appointment in mid July. I was crestfallen, to say the least. Though Laura had offered no prognosis, I'm sure she suspected cancer. I know I sure did. I emailed her the news and I sensed she was nonplussed by this development. It wasn't too many days later that the urology office called again, saying that they could see me April 1. I happily accepted the new date. Apparently they had gotten an earful from Laura Gettler, NP.
Trinity Health Systems used to feature three Michiana area urologists, but now there's only Dr. Talug. This explains the long wait times. My appointment was mostly designed to be an introduction. Dr. Talug told me the next step would be a scope viewing of my bladder. He offered (without recommending it) that he could do it that same visit. I was taken slightly aback, considering wait times for appointments. "Why would anyone wait?" I asked. But apparently some do.
Well, I sure didn't! What we saw made him recommend a surgical scope procedure to get material for a biopsy. That took place April 17. It must not have gone completely as planned, because I was in incredible pain afterwards, and had to be hospitalized overnight for my "outpatient" procedure. But I recovered quickly.
The biopsy results though were about as bad as they could have been. Not only was there cancer in the bladder, it had invaded the adjacent musculature. And not only was it cancer, it was the very rare Small Cell variant - significantly more aggressive and likely to return than the common variety. As a class, the prognosis is not encouraging. Albeit a small sample to draw conclusions from, there is a 40% survival rate at the 5 year mark.
So my oncologist Dr Khan had the unhappy experience of meeting with me on May 6 to discuss a new cancer in his patient; the squamous cell carcinoma of three years past seemingly vanquished. Part one of the treatment would be fairly aggressive chemotherapy - four sessions of three days, with three week breaks in between. It would be risky to rely solely on the chemo, but I had a bit of time to consider complementary treatment options.
Dr Kahn recommended that we consult both a urology oncologist and a urology surgeon in our decision making deliberations. We took his advice and scheduled consults with Dr. Adra and Dr. Kaimakliotis respectively, both of the Indiana University Hospital system in Indianapolis.
Assuming one doesn't end things with chemo, there are basically two option paths: Adding radiation to the last two chemo sessions, or surgery after a five week break. Surgery involves removal of not just the bladder, but also the prostate and surrounding lymph nodes. If one opts for the radical resection, there is the added decision to make regarding the replacement for the bladder. There are basically three of them: The conventional ileal conduit option where one employs an external pouch/catheter, neobladder construction where a replica bladder is created with snipped off section of one's small intestine, and what's called an Indiana Pouch. It's hard to picture a situation where the IP seems like a good option, so my choice was going to be between the first two options.
We weren't able to see both Indy docs on the same trip. We saw Dr Adra first. Dr. Kahn had recommended the radiation option. He had reservations about a nearly 70 year old dude undergoing major surgery. I was leaning towards surgery, considering the aggressive nature of this cancer. Dr. Adra also thought that surgery was the better option and he also suggested dialing up the chemo - replacing the carboplatin, with the more lethal cisplatin. (Both are deemed viable options.)
We went back with these recommendations to Dr. Kahn, and he made the adjustments. He mentioned that he had hesitations originally about the use of cisplatin originally because I had had a fair amount of it in my squamous treatment. There's a danger of liver damage with overuse. Apparently I have a high tolerance. Blood tests indicate that my liver is in good shape to this day.
After completing my chemo program, a PT scan detected no residual disease. Couldn't ask for better, but it didn't change our plans.
We had a phone consultation with Dr. Kaimakliotis initially, and didn't actually meet with him in person until a meeting primarily designed to schedule surgery. I was pretty set on going with the ileal conduit option. It seemed the more straight forward approach and it involves the least surgery time. Also, I have a friend who's lived with this arrangement for decades - claiming (at least) that she found it a perfectly livable situation.
This Dr. K closed hard on the neobladder approach. He touted his prowess and record (both completely legit) on the procedure. He seemed to place a high value of urinating through one's penis, which is a feature (kind of) of this approach. I'll have a lot more to say about this in a future installment, but suffice to say at this point that I agreed to go this route.
He explained that he wanted a full look at the situation and therefor would be doing conventional surgery, rather than the quicker robotic version. The session would take six and a half hours.
We scheduled the procedure for Thursday, August 15, mentally prepared for a week's long Indy hospital stay. My wife, Paddy planned on moteling it while I was hospitalized. But some time prior to surgery Dr. K characterized the needed hospital time as "oh, a couple of days". Well, that sure SOUNDED better. In the end we wound up leaving the hospital Sunday morning.
I woke up after surgery with two catheters (one an abdomen drain, the other a urine conductor from the kidneys) and two bags attached. Those were the outputs. The inputs consisted of various IV drugs and oxygen. I also had a stapled incision beginning above my navel, extending down to my genitals. The bed, while tiny, was surprisingly comfortable, but sleep was elusive. Somebody was doing something to or for me at least once an hour.
The IVs and oxygen needs disappear, but once home you realize everything else is ongoing for two weeks or more. And the patient is in no shape to make it a do-it-yourself project. A nurse is needed. Luckily for me, my wife had the smarts, the patience, the time, and the willingness to fill this role. If one didn't have this type of good fortune, one would need to hire a nursing service. That would not be cheap. This was never discussed during our hospital stay or at discharge.
After about three weeks we returned to have the staples removed and the catheters yanked. The latter was pretty painful. Returning home you discover you have a new set of problems and challenges. Let's just say that the first six weeks post op are pretty miserable.
We're now in early December, about three and a half months post surgery. Recovery is glacial, but unmistakable. And we got very good news today. Last week's CT scan showed no recurrence of either the squamous or small cell carcinomas. Or the prostate cancer. (It turned out that I had a small tumor in it when it was removed.)
I want to emphasize that Laura Gettler may have saved my life. At a minimum, she gave me more years through her strong advocacy. Time is not your friend when it comes to cancer. I am deeply appreciative, but I have say that it shouldn't have required so much effort.
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