I've always found tremendous safety in numbers. I mean real numbers and I'm talking business management. Understanding the relationship of one set of numbers with another set is key to creating metrics to manage by. Even in the bar business. Seriously, I've been ridiculed by plenty of bar people who say that's not how this business is done. If you go into Hayley's bar in downtown Mobile, AL - a famous and probably my favorite dive bar ever - etched forever into one of the tables there is a caricature of me saying "The liquor cost is too high!" I get the joke and I know it was you Brent Turner! There is a relationship of not only liquor cost to sales but also door charges to sales, sales per person per hour, credit vs. cash, etc, etc, etc. If one knows his/her numbers you don't even have to be present to understand what is going on.. Liquor cost too low, not pouring fair/accurate shots. Sales per person per hour to low, probably not serving customers timely, and the ratio of door charges to sales to high, might be customers aren't sticking around as long as they usually do. These and other metrics just highlight there is an issue worth exploring to ensure you are delivering the product your customers expect. Bar people say, that's not really necessary in this business; you are over-analyzing. I don't respond, but if I did it would probably be something like, "Hey kid, that attitude is why so many bars fail; you can't recognize a problem before its way too late". You got to know your numbers.
BY THE NUMBERS:
So I guess its not surprising that in my case, when faced with life or death decisions, I ran to the safety of numbers. And the numbers were not good. But if I understood the numbers I could ensure that the treatment I was being offered was the "Gold Standard" and more importantly understand the chances and length of survival. I just wanted to know. When I first presented with symptoms, readers of my blog will recall, my first biopsy in December 2014 was declared benign. It was later re-analyzed by the absolutely world class University of Alabama - Birmingham National Cancer Institute hospital laboratory and the true results would be classified as Stage 1, High Grade, Non-invasive. If accurately diagnosed in December 2014 my chances of long-term survival would have been 95%. By May 2015, when I was accurately diagnosed with cancer, the cancer had progressed to Stage 2, Muscle Invasive, High Grade, TCC. Now my odds of survival had diminished to between 49% to 60%. The lower number was if the tumor was still contained in the bladder but had grown through the muscle layer and touched the fatty layer of the bladder wall and that no one could tell until they had the bladder on the laboratory table. But one also had to factor in that survival also greatly diminished if treatment was delayed greater than 90 days. Damn!
The first thing I did was make the first appointment I could at UAB Urology/Oncology. Data showed the best outcomes are at NCI centers with physicians who specialize in Urology Cancer. Any Urologist simply would not do. I made the decision to delay my treatment 10 days to go there. I agonized over that one; but the numbers were clear. I met with an outstanding physician who specialized in Kidney issues but was well versed in bladder cancer as well. But his partner specialized in bladder cancer; he wrote papers about bladder cancer. He performed the surgery I would need, literally hundreds of times versus tens of times for the first doctor. I was upfront with the doctor when I told him I wanted to start treatment with him, but I would really hope he would refer me to his partner for the actual surgery. That was hard to do, this guy was SMART, but this is my life and I was already behind the 8 ball in my opinion. And that's what happened.
I went through Chemo in the hope that it would kill the cancer cells that may or may not be floating around my body, living in lymph nodes, and certainly the actual tumor itself. On bad days I would imagine the little bastards laughing at me. I noticed my bladder function improve with the first dose of chemo. To me, that was a good sign. But in the end, it all comes down to the final staging based on the pathologists report of the tissue removed during surgery. That is an anxious waiting game.
THE SURGERY
The surgery lasted 9.5 hours. Well, it lasted 9.5 hours for Janice and the doctors; for me it lasted 1 minute. They removed my bladder, prostate, cut a section of my small intestine, and every lymph node they could reach across my pelvic area up to the point where the abdominal aorta splits. The first thing I realized when I awoke was I wasn't in pain. I was surprised. I have another post just below about the blow by blow of the surgery for those who may find this blog on Google and are about to go through the same procedure. I was released in 4 days versus the 6-10 I was told to expect. It was a pretty easy recovery for what I had done. Now we waited for the pathology results. Ten long, excruciating days.
FINAL PATHOLOGY RESULTS
They ultimately removed 52 lymph nodes. That is an extraordinary number; really the most I had heard of. That is called an Extended Lymphandectomy; and that's important. Some surgeons remove between 7-24; with 20-30 being about average. One factor is that I have, er had, a lot of lymph nodes, and the other is my doctor realized the latest data shows a slight survival benefit the more nodes are removed and in this business, every benefit counts. He had a team of residents with him and they must have taken turns to last that long. The idea is, if indeed the cancer has left the bladder, real bad news, there is a slight chance they may still just be in the lymph nodes and not an organ like the liver, kidney, lungs, brain or bones. Slight, but still a chance.
Again, I knew the numbers. Doesn't really matter what your stage was prior to surgery but its the final staging that matters the most. Prognosis is easy then. Its all right there on the table to slice and dice. 45 percent of the time the stage of the cancer is increased in the final pathology. 25% of the time the stage is decreased. About a third of the time the Stage is the same as the original diagnosis. Assuming I stayed at Stage 2 and NO lymph nodes were positive out of the 52, my 2 year survival rate was 69%. If I was upstaged to 3 and no positive nodes, 2 year survival odds was 55% to 60%. If one node was positive at Stage 2, survival odds were 49% and if 2 or more nodes were positive, 2 year survival fell to 20%. So we waited for 10 long days.
The first thing the doctor said was, all nodes were clean. Janice and I just clenched our hands tighter because that gave us a chance. After all the bad news, finally some good news! Then he told me the stage: pTcisN0M0 - p stands for pathology (final staging), T is for original Tumor, N is for how many positive nodes, and M stands for metastasize; 1 for yes, 0 for no.
I didn't know those numbers. Honestly I didn't even know where that T stage fell but it had to be less than 1??? I didn't calculate going all the way back to less than 1; how often does that happen? Actually, less than 10% of the time. It turns out the chemo regimen totally kicked my high grade, aggressive cancer cells ass; totally wiped them out. The cis stands for "carcinoma in situ" or "pre-cancer" cells and that was all there was left. I was calculating in my head as the doctor was speaking and he said my survival rate was about 90-95%; period. Not 2 year survival; period! This, really, was shocking. My head was spinning. Bad news, upon bad news, and now THIS? Could it still kill me? For the stray cancer cell to kill me now it has to be a Cancer Stem Cell (CSC), they make up a small percentage of the overall cancer cells. Those cells would have to dodge all 52 lymph nodes whose function it is to grab them, suck them in, and attack them (that's why cancer is found in lymph nodes first), all the while surviving against a chemo attack that was able to kill all its sister cells. That's a tall order! Can it happen, yes, that's why its not 100% certain, but I like my 90-95% odds. Certainly mentally I'm going about my business of assuming I beat this thing.
THEY FOUND ANOTHER CANCER?
Yes, kind of. When they examined my prostate they determined I had an unrelated Stage 2 tumor in my left lobe with a gleason score of 3+3=6. Fact is, there is a debate now if they should even call this cancer as it hardly ever metastasizes with that gleason score and retrospectively they find a very large percentage of males who underwent autopsies but who died of unrelated causes also have this "cancer" That's why they no longer recommend PSA tests for men because it causes over-diagnosis and treatment. Prostate cancer is still dangerous of course, but it requires a gleason score of 7-8; but really, usually 9-10 - which means highly aggressive. Gleason score of 6 they won't usually even treat anymore.
THE ROAD FROM HERE
Well, for the first time in 6 months I have no treatment plans for cancer. My next appointment is in December for scans to ensure the cancer hasn't come back, and I'll have those scans every 3 months for the next 2 years. If I make it 2 years then it will be something else that kills me. Right now I am battling a bad UTI for the last 4 days; a not uncommon complication. With my weakened immune system I need to be careful for the next 3 months or so. I've been loaded up with antibiotics orally and intravenously, but I'm beginning to feel a little better. Hopefully, this blows over soon and I'm back to how I was right after surgery. Peace and blessings for everyone that prayed for Janice and I as we went through this; this has been, and in some ways continues to be, a trial of a lifetime.
Tuesday, November 10, 2015
RC/IC Surgery Detailed Experience
Because I was seriously concerned, to say the least, about how I would do with the Robotic Arm, Nerve Sparing RC, now that its over I thought I'd write up my experience for others about to have the same procedure. If you've had this already, or not having it, probably boring to you. First, I am 51, 275lbs, 6'4, stage 2 at diagnosis, being treated at UAB in Birmingham by Dr. Nix.
I went in Friday, 10.23.15, at 5am for my RC. I was brought back almost immediately and they prepped me and X marks the spot for my Stoma. I chose the left side. I chose the left side because I sleep on the right side of the bed, lay on my right side, and didn't want to have to switch sides. Now that I have it; messed that up - didn't understand how the bag and night bag would "hang" so wife and I gotta learn a new side of the bed after 30 years. My bad.
FRIDAY: Anyway, I went back on time at 7am. About the only thing I remember nothing about the procedure. Not even being wheeled into the operating room. They gave me a shot before taking me back and I was out 2 minutes later. Woke up in the recovery room about 5:30pm. My actual surgery was 9.5 hours. I was told is was much longer than usual because, 1) some people have more lymph nodes than others, 2) some people have more fat and tissue surrounding theirs than others (skinny people have a lot of fat, skinny people have little, fat people (like me) have a lot, also some have little - no correlation they said). I had a lot of tissue I was told and they wanted to get everything south of where the major vein (artery?) splits at the top of the abdomen. Also, took out the bladder, of course, the prostate, and the tip of the urethra. Not sure why the top of the urethra as I don't think that was mentioned before, but might be standard.
Was not in pain when I woke up but could tell I had been in surgery could feel tightness in my abdomen. Took me to my room pretty quickly. I had the Holister Bag on that will be a new part of my body from now on, and in it were two stents, or very thin tubes, each going directly from the bag through the stoma, each tube then going through one of the ureters and into a kindey. I had a JP drain on my right side with a tube attached to a rubber ball that was sucking fluid out of my abdomen. I had one IV apparatus with two needles in my left wrist, one needle for the drip and one for access point for pain medicine and whatever else. I had a 4" straight line suture below my belly button from where they removed the organs and tissue. I also have two closed and sutured 1" holes on my front left side, one in my belly button, and one on my right front side. The surprising thing was I was in slight discomfort but no real pain. I slept from about 8pm until 3am. I slept pretty good.
SATURDAY: I had numbness on my right calf about half way down on the right side to the top of my foot all the way through my 3 inner toes. They did a bedside ultrasound and didn't see a clot but did see some fluid build up. I did have some blisters on the back of my left shoulder. The next day, I got out of the bed for the first time to walk about 7am. I was pretty steady on my feet, but again, surprised at little to no pain. I put on my PJs and walked around the hall way for about 5 minutes. Went back to sleep. Woke about about 2pm, felt really good, zero pain, and strong while prone. Got up, walked around the ward for about 30 minutes. Then sat in a chair for about 3 hours. Back to bed for a bit. I was eating each meal, appetites was good, but filled up quickly and didn't finish everything. Walked again later. Didn't feel any real pain but hit the pain button when I saw it available because I read to stay ahead of the pain. Started passing gas early Saturday; no poop.
SUNDAY: The JP Drain leaked bloody fluid all over me overnight so the next morning the dr. clip the ball off the end and put the tub in another holister bag on the right side. So now I was double bagging. They took off the IV this morning and the pain pump as I wasn't using it and I walked a lot this day. When down to the starbucks about 2 blocks away (all inside the hospital via walkways - this is a huge complex.). Later this evening I started getting significant pain in my lower abdomen/upper groin, started getting chills. I went to take a walk to see if it would warm me up. I realized my bag was way full and I needed to go empty it before walking. (ooops, too full right now, brb) Anyway, as I was emptying it I lifted it up and it became dislodged from my body on the bottom side and started spilling all the urine down my pajama leg and onto the floor. YIKES! I was pretty frantic. I called the nurses, took off the soiled clothes, cleaned up, put on another bag and got in bed exhausted, Pretty immediately starting feeling pain in my lower abdomen above my pelvic bone. Resident came, didn't know why I would feel pain there so they have me a pain shot and said to watch it. It got worse and then pain started in my right back side. The pain in my back right side got significantly worse pretty quickly so we called the resident again. Within about 30 minutes of the pain starting I started to get really nauseous. I got out of the bed to lean over it to see if that helped, didn't, and I began to throw up into a pan. With each "heave" a very large stream of bloody water would shoot out of my penis; this is the same fluid that is collected in the drain on my right side. (I had had the top of the urethra sutured so this was both terrifying and shocking). I was this time covered in bloody water goo. This fluid is called seroma? and is a normal part of the healing process. The resident took about 3 hours to arrive and I was in the worst pain I had ever experienced. The nurses kept calling and telling me they got no answers to their calls. I was nauseated, in excrutiating pain, and no relief in sight. Finally, my wife asked for a wheelchair because she was going to take me to the emergency room. They said the resident on call finally called back and said he'd be there in 10 minutes. 30 minutes later he came in and took off my hollister bag with the stents going to my kidney, put a needle into one stent, suck some little bloody clot thing out (again, the stent tubes are very small) and IMMEDIATELY I began to feel relief. Basically, the stent going to my right kidney got a clog and wasn't letting my kidney drain. It was like having a kidney stone when the urine flow is blocked and the kidney becomes painfully clogged with urine. Slept like a baby this night. No poop.
MONDAY: Great day, no pain. Walked about 5 times; 30 minutes each and sat up a lot. Walking pooped me out and I napped this afternoon. Dr. said when I poop, I can go home as everything else is great. Nothing really to report anymore. No more pain - at all. Struggled to poop a dinky bit; didn't count.
TUESDAY: Woke up, put on street clothes and walked about 1.5 miles; all inside the large complex, with walkways over the streets connecting the buildings. This tired me out and was probably too much. Oh, POOPED before I took a nap at 10am. Got released from the hospital about 3pm. The wife wasn't thrilled with me getting out so soon, but I felt really good. She got a room to stay in town overnight, we live 4 hours a way. Went to a Hooters and picked up 10 wings, breaded, fried, and hot, salad, curly fries, bowl of chili, and coke. Ate...it....all. Was curious how the wings would feel going over those parts of my small intestine that were cut and restiched together. Nothing, pain free.
WEDNESDAY: Drove home. About halfway home I noticed my drain - they left the stents and the drain inuntil I go back for follow up next week - was not really draining near as much as the day before. I thought maybe the fluid is decreasing as expected. Then my penis started leaking this "seroma". A lot. Got home, pain free, and had to change my underwear twice and couldn't keep up with the fluid coming out my penis. Then fluid started coming out of my belly button where I had a hole stitched from the surgery. A lot of fluid. I had to put a cut up diaper in my underwear and tape the other half over my belly button to sop up the fluid. Very little fluid in my collection bag. I could be I had fluid on inside me building up on my hips and I think when the level rose from my pubic area to my belly button, it just started flowing from there. Osmosis.
THURSDAY: When I woke up, today, I noticed that there was a lot of fluid on the belly button diaper, but very little in the diaper in my underwear. My collection bag had filled up much, much more than the previous day, about 3 times as much, just overnight. I logged the amount, and the bag filled up over the next 3 hours about 4 times. THAT WAS A LOT OF FLUID and belly button and penis dried up. Turns out, I had another little clog, this time in the drain tube, and I was filling up with this fluid on the inside. Once that cleared, the faucet was turned on. As of now, Thursday afternoon, the fluid seems to have resolved and I have counted about 800 ml of fluid from 7am to 3pm. But, I think I might be drying out as it has back way off on draining to more "normal" levels.
Bottom line is; I feel really good. I don't have any pain to speak of. I can eat, walk, etc. I get tired relatively easily but rest up quickly just by sitting down for a bit. Now its the waiting game. I am incredibly nervous, and a little pessimistic waiting for the results of the pathology of the lymph nodes and tissue removed. The prognosis is sooooooo different, drastically, based on lymph node positive or negative. So I wait. Waiting is harder than the surgery and recovery to date; not even close.
I went in Friday, 10.23.15, at 5am for my RC. I was brought back almost immediately and they prepped me and X marks the spot for my Stoma. I chose the left side. I chose the left side because I sleep on the right side of the bed, lay on my right side, and didn't want to have to switch sides. Now that I have it; messed that up - didn't understand how the bag and night bag would "hang" so wife and I gotta learn a new side of the bed after 30 years. My bad.
FRIDAY: Anyway, I went back on time at 7am. About the only thing I remember nothing about the procedure. Not even being wheeled into the operating room. They gave me a shot before taking me back and I was out 2 minutes later. Woke up in the recovery room about 5:30pm. My actual surgery was 9.5 hours. I was told is was much longer than usual because, 1) some people have more lymph nodes than others, 2) some people have more fat and tissue surrounding theirs than others (skinny people have a lot of fat, skinny people have little, fat people (like me) have a lot, also some have little - no correlation they said). I had a lot of tissue I was told and they wanted to get everything south of where the major vein (artery?) splits at the top of the abdomen. Also, took out the bladder, of course, the prostate, and the tip of the urethra. Not sure why the top of the urethra as I don't think that was mentioned before, but might be standard.
Was not in pain when I woke up but could tell I had been in surgery could feel tightness in my abdomen. Took me to my room pretty quickly. I had the Holister Bag on that will be a new part of my body from now on, and in it were two stents, or very thin tubes, each going directly from the bag through the stoma, each tube then going through one of the ureters and into a kindey. I had a JP drain on my right side with a tube attached to a rubber ball that was sucking fluid out of my abdomen. I had one IV apparatus with two needles in my left wrist, one needle for the drip and one for access point for pain medicine and whatever else. I had a 4" straight line suture below my belly button from where they removed the organs and tissue. I also have two closed and sutured 1" holes on my front left side, one in my belly button, and one on my right front side. The surprising thing was I was in slight discomfort but no real pain. I slept from about 8pm until 3am. I slept pretty good.
SATURDAY: I had numbness on my right calf about half way down on the right side to the top of my foot all the way through my 3 inner toes. They did a bedside ultrasound and didn't see a clot but did see some fluid build up. I did have some blisters on the back of my left shoulder. The next day, I got out of the bed for the first time to walk about 7am. I was pretty steady on my feet, but again, surprised at little to no pain. I put on my PJs and walked around the hall way for about 5 minutes. Went back to sleep. Woke about about 2pm, felt really good, zero pain, and strong while prone. Got up, walked around the ward for about 30 minutes. Then sat in a chair for about 3 hours. Back to bed for a bit. I was eating each meal, appetites was good, but filled up quickly and didn't finish everything. Walked again later. Didn't feel any real pain but hit the pain button when I saw it available because I read to stay ahead of the pain. Started passing gas early Saturday; no poop.
SUNDAY: The JP Drain leaked bloody fluid all over me overnight so the next morning the dr. clip the ball off the end and put the tub in another holister bag on the right side. So now I was double bagging. They took off the IV this morning and the pain pump as I wasn't using it and I walked a lot this day. When down to the starbucks about 2 blocks away (all inside the hospital via walkways - this is a huge complex.). Later this evening I started getting significant pain in my lower abdomen/upper groin, started getting chills. I went to take a walk to see if it would warm me up. I realized my bag was way full and I needed to go empty it before walking. (ooops, too full right now, brb) Anyway, as I was emptying it I lifted it up and it became dislodged from my body on the bottom side and started spilling all the urine down my pajama leg and onto the floor. YIKES! I was pretty frantic. I called the nurses, took off the soiled clothes, cleaned up, put on another bag and got in bed exhausted, Pretty immediately starting feeling pain in my lower abdomen above my pelvic bone. Resident came, didn't know why I would feel pain there so they have me a pain shot and said to watch it. It got worse and then pain started in my right back side. The pain in my back right side got significantly worse pretty quickly so we called the resident again. Within about 30 minutes of the pain starting I started to get really nauseous. I got out of the bed to lean over it to see if that helped, didn't, and I began to throw up into a pan. With each "heave" a very large stream of bloody water would shoot out of my penis; this is the same fluid that is collected in the drain on my right side. (I had had the top of the urethra sutured so this was both terrifying and shocking). I was this time covered in bloody water goo. This fluid is called seroma? and is a normal part of the healing process. The resident took about 3 hours to arrive and I was in the worst pain I had ever experienced. The nurses kept calling and telling me they got no answers to their calls. I was nauseated, in excrutiating pain, and no relief in sight. Finally, my wife asked for a wheelchair because she was going to take me to the emergency room. They said the resident on call finally called back and said he'd be there in 10 minutes. 30 minutes later he came in and took off my hollister bag with the stents going to my kidney, put a needle into one stent, suck some little bloody clot thing out (again, the stent tubes are very small) and IMMEDIATELY I began to feel relief. Basically, the stent going to my right kidney got a clog and wasn't letting my kidney drain. It was like having a kidney stone when the urine flow is blocked and the kidney becomes painfully clogged with urine. Slept like a baby this night. No poop.
MONDAY: Great day, no pain. Walked about 5 times; 30 minutes each and sat up a lot. Walking pooped me out and I napped this afternoon. Dr. said when I poop, I can go home as everything else is great. Nothing really to report anymore. No more pain - at all. Struggled to poop a dinky bit; didn't count.
TUESDAY: Woke up, put on street clothes and walked about 1.5 miles; all inside the large complex, with walkways over the streets connecting the buildings. This tired me out and was probably too much. Oh, POOPED before I took a nap at 10am. Got released from the hospital about 3pm. The wife wasn't thrilled with me getting out so soon, but I felt really good. She got a room to stay in town overnight, we live 4 hours a way. Went to a Hooters and picked up 10 wings, breaded, fried, and hot, salad, curly fries, bowl of chili, and coke. Ate...it....all. Was curious how the wings would feel going over those parts of my small intestine that were cut and restiched together. Nothing, pain free.
WEDNESDAY: Drove home. About halfway home I noticed my drain - they left the stents and the drain inuntil I go back for follow up next week - was not really draining near as much as the day before. I thought maybe the fluid is decreasing as expected. Then my penis started leaking this "seroma". A lot. Got home, pain free, and had to change my underwear twice and couldn't keep up with the fluid coming out my penis. Then fluid started coming out of my belly button where I had a hole stitched from the surgery. A lot of fluid. I had to put a cut up diaper in my underwear and tape the other half over my belly button to sop up the fluid. Very little fluid in my collection bag. I could be I had fluid on inside me building up on my hips and I think when the level rose from my pubic area to my belly button, it just started flowing from there. Osmosis.
THURSDAY: When I woke up, today, I noticed that there was a lot of fluid on the belly button diaper, but very little in the diaper in my underwear. My collection bag had filled up much, much more than the previous day, about 3 times as much, just overnight. I logged the amount, and the bag filled up over the next 3 hours about 4 times. THAT WAS A LOT OF FLUID and belly button and penis dried up. Turns out, I had another little clog, this time in the drain tube, and I was filling up with this fluid on the inside. Once that cleared, the faucet was turned on. As of now, Thursday afternoon, the fluid seems to have resolved and I have counted about 800 ml of fluid from 7am to 3pm. But, I think I might be drying out as it has back way off on draining to more "normal" levels.
Bottom line is; I feel really good. I don't have any pain to speak of. I can eat, walk, etc. I get tired relatively easily but rest up quickly just by sitting down for a bit. Now its the waiting game. I am incredibly nervous, and a little pessimistic waiting for the results of the pathology of the lymph nodes and tissue removed. The prognosis is sooooooo different, drastically, based on lymph node positive or negative. So I wait. Waiting is harder than the surgery and recovery to date; not even close.
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