Good news - no razor blades! Initiation required some extra concentration, and there was some discomfort - it did burn a little, but all in all was easily managed. Next episode was easier, with very good volume. There was soreness, especially when the bladder was just emptied, and the bladder complains pretty loudly before getting overly full. But by Thursday I was at 80% of normal, able to take stairs with ease, and to drive a stick shift vehicle.
I worked from home Wednesday through Friday, and one of my co-workers stopped by on Friday afternoon to collaborate on a presentation. The group at work had sent over a Schwan's frozen foods truck and $60 of credit. They are famous for ice cream, but they had all kinds of food. We got peach pie, cinnamon rolls, mahi mahi fillets, turkey pot pies, and a couple of ice cream flavors. So after we finished the presentation we shared the ice cream windfall. It was good to feel useful and productive. That evening we had steak and a good bottle of Cabernet, my first alcohol in 12 days.
From the experience I lost 7 pounds, but my appetite was back in full force, so some of that would be regained over the weekend. By Saturday I was up to 90% and feeling good. Attending church on Sunday was pretty normal, except for having to urinate more often than usual. If I ever get nominated for knighthood, I will be known as "Sir Peesalot."
Went to work as normal on Monday, and except for being the best customer in the restroom, no issues. Still a bit sore when the bladder was empty. Had one episode where a clot came out, and pee was orange for a couple of hours, but normal ever since. My endurance was still low, and my need for sleep high (9+ hours vs 7-8), and by Friday afternoon I was bushed. We were having dinner guests that night, so I bailed at 2PM and went home for a nap. Good call, as we enjoyed our guests and we laughed and talked until nearly midnight.
Saturday weather was excellent, and I did chores around the garage that involved some bending, twisting and lifting - including trailering the Polaris ATV and Toro snow thrower to their separate repair centers. Our winter snow was the worst I'd seen, and both machines had given their all for the snow removal efforts. On Sunday after church we went to some friends' house for lunch, after which we kicked a soccer ball around with their kids and played some whiffle ball. Plenty of daylight left for a motorcycle ride. But when I got home, things were not quite sore in the bladder/groin area, but a bit tender, so I took it easy. Hope to get on the bike next weekend!
Still a bit uncomfortable Monday, but fine Tuesday. Well enough to travel, so I flew to Tucson on Tuesday evening. Boy did my arms get tired! (sorry, old joke)
Good news - no razor blades! Initiation required some extra concentration, and there was some discomfort - it did burn a little, but all in all was easily managed. Next episode was easier, with very good volume. There was soreness, especially when the bladder was just emptied, and the bladder complains pretty loudly before getting overly full. But by Thursday I was at 80% of normal, able to take stairs with ease, and to drive a stick shift vehicle.
I still didn't have my follow-up consultation appointment yet, and the lab results should be available today. I planned to call mid-morning and ask about it again. But the Urology Clinic called me about 9AM and informed me that Dr. Hopkins wanted to do a one-week post-surgical visit. "Since he does surgeries on Wednesday, that would have to slide to Thursday this week. Is 10AM good for you?" So they were telling me I had to deal with this tube for FOUR MORE DAYS? I asked her, "Do you understand that I still have a tube in?" She replied, "No. Sorry about that. See you Thursday at 10?" Arrrrrgggggghhhh! I accepted, as there was no point in arguing. Or in arguing with her, at least. I wanted to strangle someone. I literally paced around my office, the living room, the kitchen, sputtering the situation to my wife through clenched teeth. She had a women's club meeting to go to, and I begged for her to please go - no point in the day being ruined for both of us!
So what can a person do in these situations? I analyzed the scenario. For most people waiting until Thursday was not a huge thing, as they had no tubes or encumbrances and were cleared to go back to work on Monday. I already had a note authorizing me to do so. But that note was written for a normal case, and mine was not normal at all, having the bladder perforated. Obviously this situation was rare enough that they really didn't know how to deal with it. I did some quick math - 7 full days past a Wednesday afternoon surgery was... Tuesday afternoon - not Thursday morning! I made some calls - two to the Urology Clinic. First I left a message for the surgical coordinator who had provided the note. Perhaps she would know the routine for these exceptional situations and could provide guidance to the front office. Second I asked to talk to a nurse for some medical information, and I left another message with no specifics. Then I called my original doctor's office back and left a third message asking them to call back for general medical question. True to form, they never called back. The doctor (who shall remain nameless) is very good, and I like him a lot, but his staff is consistently incompetent. Beyond frustrating!
The Urology nurse called back first, after about half an hour. I went over my math, and she agreed with me. A week is indeed 7 days and not 9! And she took it upon herself to change the appointment from Thursday to Tuesday (tomorrow) afternoon! Oh joyous day!!! The surgical coordinator called back next. Having the main problem resolved, I asked her what would be a normal return to work for my abnormal circumstance. She had no idea - it's that rare a bladder gets nicked and punctured by one of their docs, who do dozens of TURBT surgeries weekly. Lucky me! We agreed I should ask the doctor during my appointment. I called my wife and let her know the good news. We were scheduled to meet Dr. Hopkins at 2PM the next day! Even if he would not take the tube out, we would have the lab results and know the pathology and prognosis.
On Tuesday we set out for the doctor's office, arrived, signed in, and were promptly shown to an exam room. Each time I had been in a different exam room. They were very similar, but this one had something taped to the paper towel dispenser. I went over and looked - smelling salts! Kathryn said they probably all had them and I had never noticed. I disagreed. We waited about 20 minutes for Dr. Hopkins to come in. He was all cheery and professional, "Ready to get that Foley out?" While the answer was "Hell yes!" I allowed my intellect to lead the way on this. "We're more interested in the pathology first." He cocked and eyebrow and went with it. "I described to you the best case and worst case scenarios before. Your case is neither - it's right in the middle. The good news is your tumors are non-invasive." THIS WAS A HUGE RELIEF!!! This is because all the cancer is now confined to the bladder, and has not spread outside (metastasized) to threaten other organs and systems. He continued, "Your bladder has 3 layers, and your tumors have penetrated into the middle layer, and they are also quite strong tumors. Treatments range from complete bladder removal to bio-therapy. If we remove the bladder, the easiest thing is to route a tube out your midsection." Such a procedure is known as an ostomy, and I was very familiar with them from my CNA days. And the prospect was unpleasant. And all the blood drained from my head. And I glanced at the paper towel dispenser and smelling salts. Now I knew why THIS room was different.
Kathryn was quick to notice, and interjected, "You wouldn't do that at his age?" The doc replied, "Not typically. Bladder removal was not how I was trained, and we reserve chemo and radiation for those that can't handle the surgery. If you are 80 years old, these can buy you plenty of time. But at your age we would probably recommend bio-immuno-therapy. He went on to explain in detail (found here - 3 out of 10 on the gross-out scale), and it's better because it specifically targets the cancer cells and uses the body's own defenses. Like anything there is a small risk of a big side effects, and large probability of discomfort in the short term. But it will likely just be a big nuisance. And last for a while.
The real question is how aggressive the cancer is. We know how far it went (into the middle layer) and how strong it is (pretty strong), but we don't know how fast it grows. My tumors could be recent, or the product of years. If the cancer is slow growing, the therapy can likely stay ahead of it and ultimately beat it down. If it's fast growing, such measures are postponing the inevitable loss of the bladder, and you realize that discomfort for nothing. So guess what? We get to go back to surgery for another TURBT to do biopsies to see how fast it's coming back. In 4 weeks - on May 14! 10 days before my 49th birthday! (For those of you shopping for presents, please be advised that I have expensive tastes and am now back to a normal life expectancy.) This time the doctor plans to do the chemo for a coupe of hours (reduces recurrence probability by 10%) and NOT to puncture the bladder. We had a candid conversation on how it happened, and lessons were learned to almost guarantee it would not happen again. Good enough, and no hard feeling on my part.
Next he brought in Gloria, an attractive, young, female nursing assistant, who would be removing my tube. Kathryn immediately volunteered to leave the room. "You are going to leave me alone with her?" I asked. "She is a trained professional, and it won't take long." Gloria was just as uncomfortable and also wanted Kathryn to stay, so she did. Three minutes later the damned tube was out. I felt like dancing! But I won't dance for 2 reasons: 1) I look ridiculous when I dance and it makes my wife giggle uncontrollably; and 2) Things are slightly tender inside, and there is still blood and occasional clots coming out in the urine stream. Doctor said that the blood is not a concern at this level. After two blinks and three signatures the surgery was all set up and scheduled. I had just done the exact same paperwork 10 days earlier, so it was all too familiar. Today was tax day, April 15 - the perfect day to get such news...
My official staging is T1-G3, T1 indicating the tumor got into the middle layer, and G3 which is the strongest non-invasive state. Not great, but not awful! The biggest thing is the uncertainty is reduced, and the range of possibilities is MUCH narrower now. It's no longer a matter of life and death, but it's still a battle for the bladder. And the outcome is very much in doubt at this point. I will have surgery on Wednesday, May 14. The lab results will be available on Monday, May 19, and we hope to meet with Dr. Hopkins that day or the next to see what he recommends. Virtually everyone in the know has insisted that whatever he says should be evaluated for a second opinion, so we are spending some time doing research on who, where, and how to proceed with that. In the meantime your prayers (and positive thoughts) are appreciated.
I have the doctor's permission to return to work as normal next week, and to work from home the balance of this week. So other than having to be careful to schedule things around treatments and miss a day now and then for immuno-therapy in the future, all should be relatively normal. I finish off the antibiotics on Thursday, and will definitely have a nice bottle of wine on hand for Friday evening!
Post-surgery there are a number of things to deal with. The top matter of strategic importance is that my "bouncing baby tumors" were sent to a lab for analysis. The lab can determine how deep the cancer has penetrated to confirm the doctor's suspicion that the cancer is non-invasive. They will also rate the strength of the cancer, high, medium, or low. This process is called "staging" and uses a standardized alphanumeric system that will be explained later, when we get the staging. Jackie, the surgical coordinator, says it takes 3 days for the lab to get the results back to them, so that would be on Monday. According to Dr. Chuck, these things are NEVER discussed on the phone. I called Dr. Hopkins' office on both Thursday and Friday and asked for a post-surgical appointment. They told me that the doc still has my chart, and therefore they have no instructions. I will try again Monday.
Keep in mind that my surgery was not normal, because I also had a nicked/perforated bladder that needed to heal. Other things to deal with are diet, pain management, and the rubber tube that is draining my urine. We shall take each in turn.
Diet - Kyle, the helpful CNA at St. Marks who had the same procedure, strongly recommended not to eat much for a while. Nurse Vicki recommended stool softeners. Keep in mind that I had no solid food for about 18 hours, except some crackers and some cranapple juice with my Lortabs just before leaving the hospital. I would be taking Lortabs for a while, and these are known for their constipating effects. I was not overly starving, but hungry. We decided to stick with high fiber and carbohydrate foods, low fat and no protein or dairy products at all for a while. The issue is that food (and gas) that move through your large intestine pass behind the bladder, adding pressure to the injured organ. Also any straining to get things out of the bowel would put lots of pressure on the bladder. So I had a few Golden Oreos and whole grain toast with jelly and no butter for dinner, with several glasses of iced tea. Breakfast consisted of oatmeal (no milk) and fruit. Lunch was vegetable soup and more whole grain toast. For the first few days, dinner was the same as lunch. Afternoon snacks were a cut-up apple. By the end of Thursday the GI system had still not shown signs of activity - not good. In addition to the stool softeners I took 4 ounces of Milk of Magnesia (MOM) Thursday night. I called Dr. Chuck, as this is truly his area of expertise. He was disdainful of diet, stool softeners, and MOM, but said to let the MOM work overnight and see. If that didn't work, he suggested the "nuclear option" of Magnesium Citrate solution. Get the one in the green bottle, chill it, chug it, then stand by to evacuate VERY SOON. It would do the job in one fell swoop (plus some aftershocks), and it's what they use to get folks ready for colonoscopy. We got some (no longer sold in a green bottle) and had it available, just in case. Friday morning I did another 2 oz of MOM, and decided to wait a bit before employing the "nuclear option." Friday during the day the gas generator (from all the fruit and fiber) was in high gear, and that night we could both hear (and I could feel) things sliding about the intestines - I discontinued the MOM after that morning and the stool softeners after a week. And when I went to bed I made sure the door to the bathroom was open! No worries though. About 2 minutes after I got up the next morning everything was working again, and over the next 5-6 days things progressed from liquid to normal. And the fiber content of my diet has continued to be high, and will probably need to stay that way. The Magnesium Citrate is in reserve for any future needs, or a really mean practical joke.
Pain Management - Nurse Vicki familiarized me with the hospital's pain management philosophy. They use a scale of 10, where 1 is no pain (with a happy face) and 10 is unbearable pain (with a crying face). She advised me to take the Lortabs when the pain approached 5, and not to try to be a hero about it. Dr. Chuck's wife is a registered pharmacist, and she advised not to let the pain get to any significant level, or it's difficult to use Lortabs to get back ahead of it. I had not experienced any pain at all, and was taking one Lortab every 4 hours the first day. This was probably more than I needed, and went to 5 hours on Thursday evening, and on Friday I decided to shoot for 6 hours, but there was pretty decent pain at 5 and a half. On Saturday I could go a full 8 hours, and Saturday night before bed I took my last one. Had to be very careful moving around on Sunday, and had a full day killer withdrawal headache all day Monday. Tylenol barely made a dent in it, but 3 aspirins taken with dinner seemed to do the trick. Tuesday was near normal. If I had to do it again, I'd let some pain come after the first night to judge when to take the Lortabs, because they effectively shield it, and you tend to move around more than you should the first couple of days. Also, when it does hurt, and then you take the Lortab, you feel TOO good and need to be careful in movement.
Drainage Tube - Moving about with the tube and receptacle felt weird, but wasn't too bad. It really did not add to the pain at all during the day, just some discomfort. Nights were a different story. The only advice I have for everyone is to drink lots of fluids (at least a gallon per day) and pay attention to keep the parts that you see as clean as possible. Details are too graphic for this page, so they are elaborated here: FOR MEN ONLY. Not recommended for women (anatomically incompatible with the graphic descriptions) or the squeamish...
So through the week and weekend we are still standing by for staging and pathology. My guess is the doctor is waiting for the pathology results before he sets up an appointment, which probably means Tuesday at the soonest. He may be waiting to evaluate whether to shoot me with chemo while the tube is in, after which the tube will have to STAY in for a couple more days. After that long some muscle re-training may be required. Might be messy. Oh joy. One thing you can count on is an eating/exercising lifestyle change for me (probably for both of us), given the high probability of prognosis for recovery/survival. There is still a small chance of X months to live. Then it’s chicken fried steak, mashed potatoes, cream gravy, and milkshakes, every day! Of course this is a low probability outcome, so I'm probably just hungry...
Hello all and thanks for your concern, prayers, and kind thoughts!
We were told to report to the hospital at 11:30AM for a 1:00PM starting time. I was to be the doc's third from last surgery that day. We arrived a few minutes early, got questioned and processed and paid (a little). Then we went to the Ambulatory Care Center, where they showed us to a semi-private cubby. The room was nice, with a personal cable TV, phone, recliner, and window. It was overcast with snow flurries in SLC yesterday, but we occasionally saw sun. Vicki, my outptient nurse, was most excellent and sympathetic. She instructed me to put my clothes in the closet and don the hospital gown and special socks (with rubberized traction soles). Then she came back and got me comfortable on the gurney, elevating the back like a deck chair, and covered my exposed legs and feet with a blanket. She offered to hook the gown to a warm air source. I thought she was kidding, but they really have those now to help you stay warm. I was comfortable as is, so I declined. She took and recorded my temperature (normal) and blood pressure (overly elevated) a couple of times, and asked me several questions about the last time I ate/drank anything and if I had taken any pills recently. Vicki went to check the schedule, and they were ahead, so we were bumped up to 12:30. By that time it was almost noon. I had brought tunes & headphones and a pile of reading materials for the long wait, but for only half an hour I didn't need them.
I decided that it would be better to use the time for relaxation. My "New Age Guy" buddy had thoughtfully emailed some instructions for deep-breathing self-hypnosis for relaxation. I used the time to modify the regimen into something like a more Christian-ized version to try. I don't believe I made it to semi-trance, but I do think it helped relax me a lot. My blood pressure dropped from high 170s to 150 or so, and pulse was also higher than usual, but not racing. Kathryn said I looked flushed, probably because of all the oxygen and being under blankets in a comfortably warm room. She lovingly tried to massage the heat out of my head, and that was also quite helpful. Both hypnosis techniques are described on THIS PAGE. For those who would like more details, please refer to the two related links in the USEFUL LINKS area on the bottom left side of the page.
After 40 minutes we were bored enough to try the TV, which had both KSL and KBYU for your Mormon fix (in a formerly Episcopal hospital), plus all the other locals, a couple of music-only feeds, and the hospital channel which advertised a full service Subway deli, just outside the Ambulatory area. Unusual that there were no Spanish channels. I had no solid food since 8:30PM the night before, and no liquids since 4:30 that morning, so the smell of the deli was semi-torture, though Kathryn found it to be unsavory. At 2PM they announced that they were behind - Duh! And that there was one person still before me. So Kathryn, who had packed herself a lunch, went out to the cafeteria to eat. I told her to just stay and eat there in the room, but she felt it would be cruel. About 15 minutes later they came in and announced they were ready for me. I asked them to double check to be sure they weren't grabbing me instead of the guy before, but my number was up. Nurse Vicki very kindly went and found Kathryn and she accompanied me and the orderly for a push stroll through the hospital. They directed Kathryn to the waiting area and me to a holding area. I was there at least half an hour, listening to docs and nurses talk to others behind other curtains. Everyone else but one was much worse off than I was and quite fearful. So no matter how bad things are, there's always time for a proper perspective!
Dr. Hopkins the urologist came in first. He looked relaxed and said some cheery things, for him. He asked if I had any questions. I asked if HE was feeling good, had lunch, etc. He laughed and said no, but he'd slept at a Holiday Inn Express last night. I just said to take his time, do it right, and be gentle. He advised me that he was going to do chemo for an hour or two after surgery, and it would require special handling to empty the catheter for the next two days. He also mentioned there was a 10-15% chance the bladder wall would be nicked, and if so there would be no chemo - since they didn't want it leaking into the abdomen. This was the first I'd heard about that possibility. Then I followed my friend Mike's advice (which had been reported to and wholeheartedly seconded by Kathryn) and asked him to make sure not to cut off anything I'd be wanting to use later.
Next came in the OR nurse, a nice fellow who asked me 20 questions or so. Then Dr. Smith, the anesthesiologist, who was very good, answered all my questions, and was also cool, calm, and collected. Dr. Smith and the nurse wheeled me into the OR where I slid onto the table, hooked up the IV, and all went black. I awoke in recovery an unknown amount of time later and spent another unknown amount of time having temperature and blood pressure monitored while in a semi-dream state. I discovered, much to my annoyance, that I was not getting the "chemo bake" because my bladder had been nicked or perforated in surgery. Furthermore the catheter would have to stay in a full week instead of two days! I was taken back to the Ambulatory ward where Kathryn and Nurse Vicki awaited, and tried to calm me down. Kathryn informed me that the urologist had visited her after surgery, and he told her he had removed all of the two tumors and he felt they were probably non-invasive. That's a testimony to how cute she is, since the doctor rarely makes such statements! My anger had subsided by the time Dr. Hopkins came in and gave me some last-minute instructions for care, and I got dressed, wheelchaired to the car, and driven home. Nurse Vicki had given me TWO Lortabs (narcotic codeine), so there was no pain or discomfort that I could feel. I got a ton of useful advice from Kyle, the Ambulatory Ward CNA, who had been through this procedure himself. I think Kyle's advice was the most valuable of any I received for getting through the recovery period.
For those readers who may be curious about details of surgery, recovery room, cleanup, and the first night, they rate about 8 out of 10 (where 10 is max gross-out), so they are relegated to this BACKUP PAGE.
I did get some indirectly encouraging input when I asked the doctor's office to send a form to work in the event I miss more than 3 days. The surgical coordinator refused, saying that such NEVER happens, and of course I will be back to work on Monday next. What if it's bad? Well were still a month or more away from more surgery, and that's VERY rare. So the lady who deals with this on a daily basis has experienced much more positive percentages than the doc suggested, probably because he has to guard against lawsuits. So the best outcome is the most likely, though not guaranteed.
Friends and family have been really supportive. The Christians, of course, are all praying, and asking their friends and family to pray. Many churches have prayer chains, which send out email and phone alerts for things like this. So there is a veritable army of friends and strangers praying for me. It feels strange, because I have received many such emails and offered many prayers, but I have never before needed to be the beneficiary. I do appreciate it, a lot. Also many of my friends are not Christians, so they have been directing "positive energy" my direction, and I appreciate the gesture. (Think of Donald Sutherland's character Oddball in Kelly's Heroes) One of my "new age" friends made a TRULY SUPPORTIVE OFFER (readers beware - graphic content), and I was pleased to accept it.
Other friends came to the house on Monday night for dinner and a quick church meeting followed by snacks, beer and basketball. April 7 was the final game of March Madness, and it was a barn-burner with Kansas defeating Memphis in overtime. Great friends, food, fellowship, and basketball. I used the DirecTV DVR to record the game so that our meeting would not be rushed, and we were able to watch the game and skip nearly all the commercials! Someone decided sometime that church meetings should be boring and tedious, but our church has never felt a compulsion to follow that model!
St. Mark's in their efficiency had already called to get my basic info. They had also done their homework on my insurance, so that was pretty easy, too. On Tuesday they called back and asked us to report to the Outpatient Ward the next morning at 11:30, with a scheduled surgery time of 1PM. I was to have no food at all after midnight, and no water at all after 5AM. We finished dinner by 8:30, and I set my alarm for 4:30 to drink a quart of water. Bracing myself mentally did not seem to work, so I just kept busy focusing on things I could control. The oddest thing of it all is that I felt just fine, no visible blood, and no pain at all. It seemed really needless to disrupt my well-being with surgery, outpatient non-invasive surgery notwithstanding. Good thing our intellect can rein in our emotions and will on occasion...
When I got home I took an entire pint of Ben & Jerry's vanilla, half a quart or more of whole milk, and some Hershey's SPECIAL DARK chocolate syrup and dumped it in a blender. Drank the resulting milkshake right out of the blender bucket. It may be the best thing I have ever put in my mouth. It's something I never do, and it's HIGHLY RECOMMENDED for putting things in perspective, plus a general feeling of well being. Afterwards, life seemed a lot better. So I cracked open a bottle of good Cabernet and slowly drank the whole thing as I watched TV through the evening. That was probably a bad idea, as I woke up at 1:30 AM with a hangover and could not sleep.
In one of my several phone calls, I vetted the Urologist's process, diagnosis, recommendations, and probabilities with Dr. Chuck. He took the news well, having dealt with much worse multiple times daily in his career. Though he specializes in the other end of things down there, I trust him. He says that Dr. Hopkins is spot on.
My personality type (Myers-Briggs ISTJ) will react to change with extremes and foolishness, so my brain is a whirlwind, and it's not slowing down. My mind has been racing, day and night, on random topics. Wills, living trusts, selling/buying vehicles, canceling travel plans, refusing to make travel plans for June/July, writing my memoirs, doing every deferred home maintenance project, doing a parachute jump, writing a book (not my memoirs), etc. Most of it's insane, some isn't. I have to churn through a lot of BS to come up with things that practically should (or not) be done now (or later). Despite trying to rationalize and man-up, I was pretty freaked out when I found out that it's cancer. Focusing on anything - work or TV or whatever seems to help. Writing out the story helps a lot, too.
So how do I describe to you how I am feeling and taking all this? As for BIG QUESTIONS like mortality, etc. I am pretty sanguine. I have done many fun and good things in my lifetime, thanks in large part to the generosity of friends. There are still some things I would like to do (like a parachute jump and motorcycling around New Zealand), but nothing major that I would say is a missing element. And of course my religious views come under test, and they are holding fast. I feel like I know what will come - more than some sort of blind hope. Your Obamas and Hillarys believe that religion is the opiate of the masses, blind faith for the uninformed and ignorant - something to cling onto to fill the void of knowledge and science. I don't believe that I fit that mold at all.
I was scheduled to travel on the Sunday after surgery (Wednesday) to teach a process improvement class. Doc says no big deal to go, but after sleeping on it followed by some thought and analysis, I decided against taking on unnecessary risk and canceled. I learned quickly that it really freaks people out in a MAJOR way when you call them and drop the "C Word Bomb." I'm ashamed to confess that I may have enjoyed it a couple of times. You also learn that you are not alone. There are a LOT of cancer survivors out there, and they usually will share that they can relate to your situation. My cancer had not been staged at this time, so death in a few months is still possible, albeit with low probability. So even though we've all conditioned ourselves that cancer is a death sentence, it's simply not so. All of the survivors will tell you that your life will change. Believe it.
One change is that I have to stop taking allopurinol immediately to prep for surgery. Stopping or starting this medication puts you at high risk for a gout attack, which is quite painful. And I can't take the pain medicine or anti-inflammatory if I do have an attack. So keeping super-hydrated is even more important. And the worst part is that I know in a few days I will be violated in a sensitive area by medical instruments, but I'm trying not to think about it.
It's Monday afternoon, and I showed up to the Urologist's office with my packet of X-rays and my collection of tiny stones. Really it was a tiny collection of specks. After the sign-in (where they took the X-rays) and a short wait I was shown to the exam room with a shorter table and the scope tidily covered with a big napkin-like thing. The assistant came in and had me remove my shoes, slacks, and shirt and gave me a gown. I did the pee-in-a-cup thing, and then she did a quick ultrasound on my empty bladder. The ultrasound is not a big deal - sort of being pressed gently by a warm baseball through a puddle of clear (and also warm) goo. As she prepared to leave, I produced my stones and asked who would want them. She said she would take them. I said that I was hoping Doctor Hopkins would see them, and we could skip the rest. She said, "I don't know. I'll ask him." She seemed hopeful. I certainly was.
You may recall that the doctor had promised that, after his scope inspection, that I would NOT ask him for another one. And Dr. Hopkins is kind of a stone specialist, so he would now know that what we have here is no big deal. After about 10 minutes she returned and said that he wants to proceed anyway, so I should lose my underwear also. Sigh. About 20 minutes later the doc came in. "How did you like those films?" I asked in a preemptive strike. "Saw a few things. You have diverticulosis." I had no idea what that was, so he explained it to me. Click the link above if you're curious, but it turns out that it's something to watch, and not a big deal. And not related to the problem at hand. "I also saw a couple of bumps in your bladder that I want to take a look at." As he and the assistant began washing and donning gloves, I contemplated that. Surely the ultrasound should have shown anything significant? What a waste of time and money that was!
The inspection procedure was very quick. Details of the procedure are a bit graphic (6 out of 10 where 10 is max gross-out), and they may be interesting to some. To spare our more sensitive readers, such details are provided on a backup page.
When he was finished he announced, "You have two papillary tumors in your bladder. They are a form of cancer, and they are usually pretty easy to take care of. Go ahead and get dressed and come see me in my office, so we can go over the details when you are more comfortable." Then he and the assistant left the room.
There's no good way to convey that kind of news, and I appreciated the doctor not leaving me in the dark while I cleaned and dressed, and the upbeat attitude that it was no big deal. But he had dropped "The C Word," and I was in a state of shock physically from the procedure (which is not that big of a deal after the first time) and mentally from this new and unwelcome information.
So I have been diagnosed with bladder cancer. It changes your life. It's up to you (a little) and God (a LOT) whether that will be for the better or not. I went in to see the doctor. He used a 3-D model of the bladder to explain it to me. I have two papillary tumors, and they protrude into the bladder from the walls. He was going to schedule me to have surgery to remove them. It was Monday and he did surgeries every Wednesday. Because I take allopurinol for gout, I could not go this week - you have to be off of it for a week. So we were looking at the following Wednesday. I was scheduled to fly back to the DC area the Sunday after that to teach a class. He mused, "We do this on an outpatient basis. You will go home after surgery Wednesday, two days to recover is Friday, you should be fine to travel on Sunday. We're not going to cut into you - it can all be done with a scope, with general anesthesia." Thank God for that last part.
I had to love his cavalier attitude. Sounded hardly worse than having a tooth filled - or maybe a root canal. I can do this. He continued, "There's a 60-70% chance that these are non-invasive, and depending on the staging, we may pretty much be done after next week. I'm going to give you an hour of chemo, post-surgery, to make sure all the bad stuff is killed. They often grow back, though, so we will have to do some periodic checks." I knew that he meant the scope, but I planned to negotiate for a pee test or something later!
I reconciled the information quickly into a model I could understand. These things sounded very much like internal moles (my description, not the doc's). High probability is they are OK, and maybe they will grow back like moles sometimes do. Really seems like no big deal. But until the lab comes back, we still don't know if it's invasive (Big-C Cancer) or non-invasive (Little-c cancer). That 60-70% chance of the non-invasive is on the right side of 50/50. I'd like bigger numbers, but we are at least on the right side of 50/50. I can do this. And the doc says no reason to suspect the worse alternative.
The procedure using the scope is laughingly characterized as "non-invasive surgery." Guess it depends on who's being invaded and how!
I gathered my thoughts and paperwork and headed back to my vehicle. It was after 5, and the very full parking lot was buzzing with folks headed home. I picked up my cell and called my parents. They took the news well, and were very supportive. My mom made notes of all the technical terms, and I knew she would research it pretty well on the internet and in her medical books. Then I called my pastor. I laid it out as no big deal, but he seemed pretty upset by the news. Then I called my boss, a great lady who has had her own issues with dire diseases, and she took it pretty well. I insisted that I would be OK to travel and do the training, and she urged me to reconsider. I agreed to sleep on it. My boss asked how my wife was taking it, and I said that I wasn't ready to call her yet. But I called her next, and she took it really well, accepting it as no big deal. This is exactly the reaction I needed from her, and it was helpful for me not to need to worry about her.
It should be said that she was in Tucson at the time, visiting her birdwatching friend, and that was probably a good thing. Because there she could share her real feelings and get some comfort from her friend, and save the brave face I needed for me. We had opted not to cancel her trip, because, up until now it was no big deal. It's still not THAT big a deal, but the "C Word Bomb" had been dropped, and there's no return after that happens.
I looked around and the parking lot was deserted. I had been on the phone with various people for about 90 minutes. I took the scenic drive home, through Parley's Canyon and Park City. I resisted the urge to stop somewhere for a beer, and got home around 8 PM. My mind was reeling. How could it be that I've got bladder cancer?
The best (and most probable) outcome for all this is that next week will be unpleasant, followed by an unpleasant recovery, and that's the end of it. No guarantees about regrowth, so I will need to be watched somehow for recurrence or other cancers, I think. At this point there's no reason to expect less than the best outcome, so I am proceeding along those lines. Or so I led myself to believe...
I was able to track him down on the internet, though he was able to stay incognito for the prior year. Found his home and office numbers and got in touch with him. I spent about 5 minutes bringing him up to speed and explained that I wanted X-ray training. He told me what to look for in great detail (stones would be bright white in the non-contrast films) and asked me to keep him in the loop. Turning back to the films, Kathryn and I were able to find nothing that resembled stones, but I did observe a cyst (always benign) on one kidney. All in all I had more information, but I still didn't know anything new.
I unpacked my new screening device in the airport parking lot. It's like an old collapsible cup - a series of concentric plastic hoops that expand out into a cup-shape, in medical white, with a very fine screen at the bottom. It also had a nice cover and a compartment for storing any stones found. Fit easily in my pocket. Inside the Salt Lake City Airport there are a couple of men's rooms that are not heavily trafficked, and NO, I won't tell you where they are. Sharing intimate details of my anatomy and biological functions is one thing, but useful information like restrooms you can use is quite another! I made my way through security and found the one nearest my gate. Empty, as I had hoped. I grabbed the screen, expanded the cup, pulled up to a urinal, and let fly. It was certainly awkward, and the screen tended to disperse the splash in unpredictable ways, but no harm done. Once finished I inspected the screen to find - nothing. But now I have a pee dampened screen in one hand, my junk in another hand, and how to proceed next without a third hand was not obvious. I ended up setting the cup on top of the urinal to finish my business. Then I quickly rinsed the cup in the sink and took a paper towel to clean the urinal top. Clearly this approach would need modification. Carefully dried the cup and collapsed it, then stuck it back in my pocket. Off to Tucson!
Over the next several days at hotel and office I found an approach for screening that worked pretty well. Using a toilet stall, unwind some TP and place it (3-layers, folded) on a flat surface, often the top of the TP dispenser. Take out the dry cup and place it on the TP. Stand OVER the toilet (not just in front). Pee straight down through the cup into the center of the toilet. When complete, set the wet cup on the TP, finish business, inspect for stones, and then proceed to the sink for rinsing. Dry carefully (so as not to damage the screen) with a paper towel and return to pocket. Given some practice, all of this can be done quickly and discreetly. All week I screened and found NOTHING.
When the weekend came I had a dull ache in the lower abdomen, just above the groin, where the bladder is. This grew to become quite painful by Saturday night, but only once for a few seconds could it have been described as intense enough to be thought of as kidney/bladder stone pain. By Sunday night it was pretty much gone. Still screening pee and finding NOTHING.
Monday afternoon I headed to St. Mark's Hospital for my CT. I had learned from my previous doctor that locations convenient for me were inconvenient for the medical people, and not following the norms would likely result in delays and mishandling of information. So with my own best interests at heart I changed my behavior to make their system work better. St. Mark's, formerly an Episcopal hospital, is now part of Columbia/HCA out of Nashville, and it is a very efficiently run business. The radiology admissions department had called me the week before to take most of the routine information, and the doctor's office has provided most of the necessary forms to fill out in advance. When I showed up, I had to sign a couple of things, fork over ID and benefits card, and wait maybe 10 minutes.
The X-ray tech came and escorted me to the changing room. No pants, shoes, socks. Underwear and shirt OK. You get gown and booties. No problem. I opted to remove my long sleeve dress shirt to make starting the IV possible. It's been 31 years since I've seen a hospital gown, and longer since I've worn one. Progress is a wonderful thing. Apparently the "ass in the wind" style with closure in the middle of the back has been replaced by a half-wraparound style that overlaps in the back and closes on the side. Brilliant! A few minutes later the tech returned to escort me to the CT chamber. I was pleased to see they had the latest ones, donut-shaped, rather than the old, claustrophobic "Star Trek Tubes." I needn't have worried as this procedure was done feet first.
So here's my confession. During college my summer job for 3 years was as a Nurse's Assistant (now called CNA) working graveyard shifts at Deaconess Hospital (now known as Forest Park Hospital) in St. Louis, Missouri. I was trained to do, and DID do, many unspeakable things to other people without blinking or losing a day's sleep. I think I was pretty good at it, as I got few complaints, and the nurses loved having me on their shifts. Unfortunately the entire universe changes when the subject is ME, and I have been known to faint when being poked to get a blood sample. Irony at its worst. So I have learned to caution anyone who is starting an IV on me that I might faint, and that I am a "hard stick." So even if the vein looks good, it will roll over and hide from a needle. The upside is that I would make a horrible drug addict.
The technician got the IV started without incident, and she let me know that she did not like me putting all that pressure on her. Sorry, but apparently it worked! The IV was hooked to a ginormous robotic arm with two HUGE syringes. One was saline and the other an iodine solution that provides X-ray contrast. The tech walked me through the process. I would lie on my back on a table, the machine would pump me up with saline, then I would slide in and the machine would give me breathing instructions. Then they would do some shots with a trace of iodine, which would make me feel warm and funny. Then I would wait 20 minutes, and they would repeat the whole deal while pumping me full of iodine, making me very warm indeed. The whole thing went exactly as described, and I could actually taste the metallic flavor of iodine and feel it warmly flow into my body. I handled it well, and the warm feeling was not at all uncomfortable. Some don't, and you will see shyster lawyers advertising everywhere looking for victims to sue deep pockets. This process is also known as IVP, or intravenous pyelogram. I tend to think of it as the world's slowest and most expensive carnival ride.
If you don't know, CT stands for Computerized Tomography, which is a technique to use X-rays taken at several focus levels by spinning the camera around you - hence the donut shape. These films may be examined like normal films, and they may also be used to generate a computerized 3-dimensional image of your organs (for additional cost). My doctor was happy with the films, and I was instructed to collect them today and bring them along the following Monday. This system puts the information in the hands of the person most interested in getting it to the right place, so it's a good one!
So I went home and spread out my X-ray films on the kitchen table. There was one full-sized one and hundreds of others at 20 per page. I set them in time order, and tried to look for stuff. I could identify the spine, hip bones, kidneys, liver, and bladder, but detail was just whooshes and blobs and swirls to me. Nothing that looked like stones. Kathryn (my wife) had pretty much the same impression. So we had data, but it was a mystery to us.
Tuesday morning I got up at 5AM to head for a 6AM prayer breakfast meeting with my friend Frank, his son Benjamin, and any others who might show up. Did the pee through the screen routine, and suddenly there was SOMETHING. Tiny, smaller than grains of fine sand, colored dark red - 2 grains and a speck. I grabbed an Exacto knife and carefully guided them into the storage container. Eureka, we have stones! I crushed the smallest one to make sure it was solid, and it was - hard as glass. I must admit my smugness level was getting pretty high. During the balance of the week I collected some lighter colored (and less dense) stuff - 2 or 3 tiny ones, and some stuff that was very light, like dandruff. All carefully collected dried, and stored. We'll see what Dr. Hopkins has to say about THIS!
Frank, Benjamin, and I had a great breakfast, and I told them the short version of the story with the found stones as a great punchline. We prayed for my health and several other things and went our separate ways.
On Sunday night my urine looked like cranapple juice. One time. Never happened before. Not good. I sneaked into the kitchen and appropriated the smallest kitchen sieve to pee through. Did not catch anything with it. Holes probably way too big.
As a hedge I book the 6:30 flight to Tucson instead of the 5:00. Headed down to the office, which is in the Sugar House area of Salt Lake City. About 10 minutes further than the first doctor. I hope this lady knows her stuff, for all this hassle. I find the building and go in to the second floor. Nice place, and there are about 20 folks in line, and the place is REALLY BUSY. It looks like a McDonald's at lunchtime. Mostly men, many holding their abdomens, all walking slowly, and a few women who were clearly there to support their men. Some needed it. Compared to everyone in line I was the picture of health and youth. I noticed the doctors' names on the door coming in, and Dr. Darling was not one of them. Seemed odd. After 20 minutes in line I was near the front (with a new 15 people behind me), and I see a poster on the door: Welcome to our newest member of staff, Elizabeth Darling, P.A. What the hell? I soon reach a friendly yet harried lady who is wearing a green "Cat in the Hat" style hat to celebrate the holiday. I explained that I was there to see a doctor, but appear to be scheduled with a PA. She verified that was the case and asked, "Do you want to cancel, or reschedule?" I said I really need to see a doctor TODAY, and that I had rearranged travel plans and driven 50 miles for that purpose. She persisted, "Cancel or reschedule?" I persisted back, "Are you telling me there is NO WAY to see a doctor today?" I was trying very hard to be charming, and failing miserably. She said, "We'll work you in," and turned into an icy bitch queen. I kept on trying to be nice, but there was no forgiveness for upsetting the norms.
After some paperwork, most of which I had filled out in advance, the angry Cat-in-Hat lady said, "We don't have the records from your doctor, so you are in a holding pattern until we do." I asked if she wanted me to call for them, and she said,"Up to you. I don't care." It's always good to know where you stand. I called the incompetent staff at the other office and ultimately convinced them to fax the stuff. To two different fax numbers. Twice each. Folks were still pouring in, through, and out. It was an amazing volume of slow-moving men. I waited about an hour for the line to dwindle, and got back in queue to ask them to look for the faxes. Just before I reached the front I was paged to go to the back, weighed, temperatured, and blood-pressured, told to pee in a cup, then left in an exam room. For 90 minutes. I was back with Dr. Hopkins, though, and he came in quickly and apologized for the wait. I was just happy to be there, finally, even if I sacrificed all future dealings with Ms. Cat-in-Hat.
Dr. Hopkins is the F-16 fighter pilot of Urologists. Youngish, fit, good-looking, and reeking confidence from every pore. He did a history and physical exam, including prostate, all in less than 2 minutes. He asked me numerous times about smoking, looking at me askance at my repeated denials. He told me, "We're going to do a CT scan of your kidneys and bladder, then bring you back in and look inside your bladder, since the X-rays won't tell us as much about the bladder as the kidneys and ureters. Afterwards, you won't ask me to do it again." Doc's got it all going on, and he's a comedian too. Whatever. He directed me to a staffer who set up the CT for the following Monday, and the scoping for the Monday afterward. I asked if I was supposed to pee through a screen, and they gave me one. My wife was not all that happy to get her kitchen sieve back, though!
I could tell the doc suspected cancer, but I suspected stones - either an adjunct of the gout I have, or hereditary - my dad had stones back in the day, younger than my current age. And what did the doctor know? There is NO family history of cancer, on either side, for several generations. Which he never asked about. All I needed to do was pass a couple of stones, and we could all relax. I was aware that there should be intense pain, though I had none, so I braced myself for impending pain. I would take it as a good sign. And I'm supposed to be tough. I'm Irish, after all! I headed for the airport and a couple of pre-flight beers at the Uinta Brewery, conveniently located 5 minutes from airport parking. Hefeweizens, not green ones.
The doc said I should get it done near my work and save a trip to their normal hospital in Salt Lake City. It turns out that the Davis (County) Hospital, a few blocks from work, took my insurance and had a really good contract rate. We scheduled the ultrasound for February 20, the following Wednesday, and I got a call early in the week that the blood work was all normal. The ultrasound is run by a tech, just like for pregnant women. The young lady was pleasant and professional. I asked her if she could see anything, and she said she wasn't allowed to say - a radiologist had to interpret the results. A few minutes later she asked why we were doing ultrasound rather than CT. I told her we were looking for big things. She said only the CT would show the smaller stuff like little stones. I said, "I guess I'll be back next week for the CT, then?" and she agreed, indicating to me that SHE didn't see anything.
The next week I was in the DC area all week, and had heard nothing. I called the doctor's office, and they said the hospital had not got back to them yet, but they would call. On Thursday when I was boarding a plane in Denver to return to Salt Lake, my cell rang. Having my carry on in one hand and my "personal item" (laptop bag) in the other, I could not access the phone until I was in the tiny Canadair Regional Jet (CRJ, also known as flying instruments of torture). Sure enough it was the doc's office requesting a call back, and they were now closed. The next day was February 29, leap day, and I could not get them to answer - must have taken the day off! Even though they are normally open on Fridays.
On Monday I went back to DC. While walking through Dulles to meet a coworker who was sharing my car, I made several calls. The doctor's office is staffed by very pleasant folks who are really not very competent. They had been calling St. Mark's, their normal hospital, for my results. Naturally St. Mark's had never heard of me. I told them no, it's the Davis Hospital. They called back and said that Davis had never heard of me, and provided a phone number. I dropped my bags in order to write it down and noted the alien area code. "What hospital is this?" I asked. "I Googled Davis Hospital and this came up." So apparently they had called Davis, California instead of Davis County, Utah. "Utah has only two area codes, and this isn't one of them," I explained. Clearly I had to handle it. I called the correct Davis Hospital and they had faxed the results 10 days earlier, to the wrong fax number. I provided the correct number, waited a bit, and called the doctor back. Closed for lunch. Jeez! All this done during a long walk through Dulles airport. If you ever wondered what all those people in airports talking on cell phones and looking annoyed were doing, now you know...
So I had lunch - a pressed Cuban sandwich, salad, and glass of Chardonnay. The sandwich came with a quarter of a fresh pineapple, probably just off a plane from Hawaii. For airport food it wasn't too bad. I finally verified that the doc's office had the data, and they would show it to him and call me back. They did, two days later. All clear, all normal. I felt this was good, as an ultrasound would show any big tumors or whatever. Little did I know. So poking, blood, and ultrasound all clear. Rule out infections and major issues. Still they had detected blood in the urine, but how big a deal could it be? The doc referred me to a specialist, having exhausted his toolkit on me. So they set me up with an appointment the following Wednesday in Salt Lake City with a Urologist.
I stayed at the local Doubletree Hotel, which looked to have been a pretty nice place in the early 1980s, but had seen better days. The staff were having a "score 10 out of 10" promotion, so everyone was friendly and greeted me, which was nice. After a dinner in the room (a "Double Double" In-N-Out Burger & a Beck's beer), I used the toilet. After finishing urination, I noticed a pink color in the front of the toilet. "That seems odd," I thought, then shrugged it off as weirdness from an older hotel.
The next morning I noticed it again, and determined it was not a stain in the porcelain, but something that came from me, at the end of the urine stream. Blood in the urine. I later learned that the technical term for this is terminal (end of stream) hematuria (blood in urine).
Like most American males my age, I was in average health, not eating the best foods (like dinner the previous night) or exercising enough, and a bit overweight. I am actually about 60 pounds overweight, but on my frame it doesn't look so bad, and many are surprised at that figure - having guessed 20-25. Lucky me. No health issues really, except for gout, which was easily controlled with an inexpensive pill daily. Also, like most guys, all I knew about blood in the urine is that it's supposedly a VERY BAD THING.
I poked and prodded myself pretty well externally, and could find NO PAIN AT ALL. In fact, I felt perfectly fine. How bad could it be if nothing hurts? And I was hungry. So I went to breakfast at the hotel (decent and free as a Gold Hilton guy), and drove to the meeting. I met several new folks and took my place, jacking my laptop into the internet via wireless modem. I mostly paid attention while I covertly Googled my symptoms. There were a few suggested causes, and none of them seemed VERY BAD.
One thing about Tucson, it's in the desert. Very comfortable in February, albeit dusty. Being in the desert, water is scarce, and most (if not all) public urinals are "waterless." Perfectly fine and sanitary, but my condition left a distinct pink streak visible for all to see. Sinks were at least 20 feet away, and no way to transport water over for a quick rinse. So I quickly learned to use the regular toilets for my pee business from that point forward!
Finding nothing useful with my cursory internet search, I called my doctors. I have two doctors - one is close and convenient to work and home, and he is a "pill doctor." You got a condition, he's got a prescription. This doctor is fine for simple things that are well understood. The other doctor is a "Holistic MD" which basically means he wants to understand the whole system and symptoms, and then will prescribe the best treatment program - including drugs if necessary, and he is about 45 minutes away from home in Salt Lake City. This situation clearly called for the second doctor. But he does not work on Mondays, and his partner refused to suggest anything unless I came in. Difficult under the circumstances. I asked if I should go to a local Emergency Room or Urgent Care center. They asked, do you feel OK? I felt fine. They said to go if anything changes. I called the pill doctor and got essentially the same advice. So I called the other doctor's office back and scheduled an appointment for Friday, the next day I would be in town.
In the meantime I amused myself by Googling local Urgent Care centers and comparing them against my benefit provider to see where I would be covered. I found half a dozen and programmed them all into my handheld GPS. Can you tell I love high tech toys? So I was covered if the situation changed. And I still felt fine. I was then pretty successful in being able to pay attention to the meetings the rest of the week.
The terminal hematuria continued each time I urinated for three days. 3.5 days if you count Sunday. On Thursday morning it was gone, and stayed gone. Strange. I opted to skip the meeting and catch an earlier flight home, just in case. No hassles or issues. Seemed a lot like much ado about nothing. Still no pain, discomfort, or anything! How bad could it be?