Initial BCG Treatments #1-#6

Instillation #1 – Thursday, July 2, 2008 – Dr. Hopkins

Arrived at Urology Clinic and checked in. Shown to exam room right on time. Nurse requested a urine sample and instructed me to remove shoes, shorts, and underwear – then mount the exam table on top of a protective pad, using a paper blanket for privacy. I noticed the catheter on the prep table was quite small, and did not have a balloon – so no chance it would be left in – good news! The nurse came back shortly to announce urine sample OK. I asked if that meant blood-free or something else. She didn’t know, just that it was OK for me to do the BCG today. Oh, joy!

I had acquired two foam “stress balls” from work, each about the size of a racquetball, just smaller than a tennis ball. I had one in each hand. Dr. Hopkins came in, answered a couple of questions, and got right to business with the catheter. “Deep, slow breaths, and relax.” Squeezing the stress balls was immensely helpful in making his job easier. I felt a tiny burning as it went in, then just pressure, especially past the prostate. Took about 30 seconds. There was a metal pitcher to receive any residual urine, but there was none due to my overachievement in avoiding fluids. The Doc slowly instilled the 50cc (which is not much) of BCG, maybe another 30 seconds. I was actually able to relax enough to talk a little. No pain, and only the faintest of burning sensations. Much to my surprise he pulled the catheter out VERY quickly, dropped his gloves in the biohazard bin, said “see you next Thursday,” and was gone. Less than 3 minutes total. Things felt “weird” but no pain to speak of. I moved slowly, donning my new “tightie whities” and inserting a “man pad.” Walked out, down the stairs, and got into the car – all no problems or hassles. 70 minutes later we were home. There was a tiny burning sensation at the tip of the penis the entire time. Eventually went away. See bottom of page for a VERY detailed side effects log for each of these 6 installations.

Instillation #2 – Thursday, July 10, 2008 – Dr. Hopkins

Arrived 15 minutes early and signed in. Had to wait about 30 minutes, trying to relax even though the waiting room had morphed into a day care center with kids chanting, screaming, and jumping rope with their IPod headset cords. One older fellow chatted loudly in Italian with the mother of two of the noisier kids. It was a relief to be shown into the tiny exam room – back to the first room I’d been in upon originally seeing Dr. Hopkins. Nurse Gloria asked if I’d had any burning or fever. Mild burning, no fever. Urine sample was given and analyzed. Dr. Hopkins came in and asked about the burning. I explained the bladder was a bit irritated, but no burning during urination. He told me the urine sample looked OK, with some white blood cells noted, which was to be expected and a good sign. Based on all this, he decided to proceed with BCG Instillation #2. I was thankful that he was so careful, and also that it was not delayed.

Process was easier, if anything, than last time. Deep breathing, no trepidation, and the catheter went in slowly and easily. Dr. Hopkins took a full minute to do the BCG, and the catheter was removed quickly again, completely painless this time. No surprises or trauma. The stress balls took quite a workout, and concentrating on slow, deep breaths helped a lot. We were done by 11:02AM, about the same as last time. Even though my appointment was for 30 minutes earlier, they were running late that day.

Back home 60 minutes later, no pain or burning to speak of. All told less discomfort than last time. I believe knowing what to expect contributed a lot to improved relaxation, which made everything better all round. See bottom of page for a VERY detailed side effects log for each of these 6 installations.

Instillation #3 – Thursday, July 17, 2008 – Dr. Hopkins

Arrived at 10:15 for my 10:30 appointment, signed in, and was shown to the exam room 5 minutes early. Urine sample, undress, and plop on the table. Had to wait about half an hour before Dr. Hopkins came in. He was in a fine mood, and got right to business, pausing to ask, “Are you ready?” I assented and he proceeded as he gave his usual instructions, “Slow, deep breaths.” I had done several rounds of breathing exercises already that day, including one on the table, and I was pretty relaxed. But the long wait allows the mind to wander, so I was not as ready as I hoped. Started inhaling through my nose, and then gasped through my mouth as he made the initial insertion. He paused and let me catch my wits for a second or two, and I squeezed hard on the stress balls. In smoothly, slowing for the prostate, and done. The doc chatted happily as he instilled the BCG, asking me about my work. I was now relaxed enough to answer back coherently, and it was over in no time. Dr. Hopkins reminded me that he would be out next week, and promised that he wouldn’t even think about me. I said that was just fine, and that Elizabeth, the female P.A. had my treatment next week. He paused and walked over beside me. “Don’t be afraid to talk her through the process, when to go slower, whatever.” I’m not shy about speaking up, so I appreciated the encouragement. “I’ll be sure to remind her that men have prostates!” Dr. Hopkins laughed out loud as he left the room. I’m hoping for the best, but one thing is for sure. That idiot male P.A. is NEVER touching my stuff! See bottom of page for a VERY detailed side effects log for each of these 6 installations.

Instillation #4 – Wednesday, July 23, 2008 – PA Elizabeth Darling

Due to a phenomenally annoying tradition unique to Utah, tomorrow is a “state holiday” known as Pioneer Day. Supposedly it’s all about history and family, but it’s not about YOUR history or family, or mine. So the majority of the state takes the day off while the rest of us try to make do. For me, this year, it simply means one less day to recover from last week’s BCG side effects. It also means that Dr. Hopkins (apparently it IS about HIS family and history) is taking most of the week off. I should be less annoyed – he could have easily decided to take a week in Cancun if there were no Pioneer Day, and I would not have complained, but I would have been able to maintain schedule. So we went into the office today for BCG Instillation #4 by freshly minted Physician’s Assistant Elizabeth.

We arrived 10 minutes early for our 10:30 appointment and were shown into the room right on time. Urine sample given, clothing removed, table mounted. Liz, as she likes to be called, came in and introduced herself. She was cool, calm, and professional and was ready to get right down to business. I told her that Dr. Hopkins had asked me to talk to her a bit, and she seemed surprised. In a very clever pre-emptive move, she un-draped the “work area” and then looked me in the eye, waiting for me to “talk.” I decided to ignore the awkward (for me) situation and explained that I had emplaced over 200 catheters “back in the day,” and that I had been consciously on the receiving end of only three, and that Dr. Hopkins wanted me to tell her what I liked. She semi-impatiently listened as I described some good techniques for men – twice as much plumbing to tube through, use lots of lube, allow your left hand to form a “puddle” as you feed, go SLOWLY, if any resistance at the prostate – do a half twist of the tube. She said, “All good,” as if she’d heard it all before, which is probably the case. “Ready to start?” I nodded and she proceeded expertly. Clearly she did not need my instructions, and I can only suppose Dr. Hopkins wanted me to talk to put myself at ease. In any case I’d classify this as the easiest installation to date. The stress balls hardly suffered at all. She removed the catheter a bit more slowly than the Doc, but it was all good. See bottom of page for a VERY detailed side effects log for each of these 6 installations.

Instillation #5 – Thursday, July 31, 2008 – Dr. Hopkins

The Doc was in a good mood, refreshed from his vacation. After some pleasantries he did the insertion. I had tried breathing through my nose for my deep breaths last time with him, and had to switch to my mouth because of mild nasal congestion. So this time I did deep, slow breaths through the mouth – noisy and deliberate. The insertion was slow and easy, and he asked me questions as he instilled the BCG. I found that I had to relax a bit to talk, but then it was easy. He finished quickly, and the entire process was without trauma, but with a little drama. I can’t say I’m used to it after 5 episodes, but I can prepare for it with the deep breathing exercises. And the stress balls are always there to take an occasional squeeze! Only unusual thing was that as the Doc extracted the catheter in his usual, quick method, there was some slime that hit my inner thigh – probably excess lube, and probably a little BCG as well. The Doc wrinkled his nose and left me to deal with it. I took some extra time to clean up afterwards and washed my hands in the exam room sink. Also did some cleanup an hour later at home with Wet Ones Disinfectant wipes, just to be safe. See bottom of page for a VERY detailed side effects log for each of these 6 installations.

Instillation #6 – Thursday, August 7, 2008 – Dr. Hopkins

Instillation was a veritable piece of (sugar-free) cake! We arrived five minutes before the 10:30 appointment and were shown to the small exam room right on time. The waiting room was nearly empty, and the back rooms were mostly full. So Dr. Hopkins didn’t even come in until 11:10. He started right away, pausing to ask if I was ready. I nodded and he talked cheerily as the catheter went in. I had (as always) done the deep breathing exercises on the way down, and had continued during the long wait, so I was well relaxed. Experience is the best teacher and there was no trepidation. I was able to answer the doc and maintain a normal conversation during the instillation – something I had envisioned for the first exam but failed to achieve due to my incorrect expectations. A humorous account of that experience is found HERE. I did use the stress balls as the catheter went in and then relaxed fully as I told him about the log of the first five treatments (see table below), and that I had selected a doc for second opinion. He knew the fellow and spoke very highly of him – describing him as “brilliant.” After a completely uneventful 90 second instillation process he looked at my detailed log (see table below) and said it was consistent with his expectations – increasing symptoms week by week. We all hope that the BCG will do the trick, but he affirmed that there’s no point in scheduling the next rounds of BCG until after the inspection. He asked if we had any questions and left us on our own.

Detailed Side Effects Log

Each week except Week 1 there were increasing symptoms of general tiredness/lethargy and difficulty in concentration – fuzzy brain. The latter was particularly strong the day of BCG Round #6. Generally cleared up within 30 hours of instillation. Super-hydration caused some bladder soreness on the second day, but was worth it in reducing all other symptoms for the balance of each week.

Details below: