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.
Thursday, October 29, 2015
My RC/IC Surgery
This post is mostly written to benefit anyone who may have to have my procedure in the future, to let you know my experience. Your experience very well may differ based on age or sex, I imagine. There are typos but really not in the mood to correct them, sorry. When they tell you they are going to remove your bladder, prostate, cut your small intestine into two, create a stoma by cutting a hole through your abdomen, and reattach your remaining small intestine it sound painful right?
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 (pic of me below on 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 (pic below) 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.
Greg
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 (pic of me below on Sunday) :
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 (pic below) 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.
Greg
Monday, October 19, 2015
Its Time For Sugery
I have put off writing this blog for a long time. Everyday I planned to write it another awesome excuse came to postpone it. And then I finally figured out what I wanted to say. I planned to start it this way:
"When I first started blogging about having bladder cancer, I did not realize then the complete ramifications of the cystectomy procedure - taking the back-stabbing bladder out. While taking out the cancerous bladder was obviously required to rid the body of cancer, that meant writing about a lot of delicate anatomical issues - embarrassing stuff. Because of that, not much is written about bladder cancer and people don't confirm having it. Also, it lags behind cancer research funding even though its the fourth most diagnosed cancer. And I BET you don't know ONE famous person who has ever publicly acknowledged having bladder cancer."
Then Phil Lesh of the Grateful Dead releases a public statement this week saying he has bladder cancer. Great, blew my whole thesis. So I'll just get to the point. (He has non muscle invasive and his prognosis is good.)
I had a CT scan about 3 weeks ago to determine how my body responded to the chemotherapy...which had just ended at that time. The CT scan came back showing no obvious signs of cancer in the areas one would be concerned about; local lymph nodes, liver, lung, bones. Whew! No spread at this time.
They always do a CT scan before surgery because if it had showed up anywhere the surgery would have been cancelled. No need to go through the removal of the bladder if the cancer had already escaped the bladder.
So, the plan has always been, 1) Cisplatin/Gemcitabin chemo to kill any cancer cells that have escaped the bladder and kill the cancer in the bladder, 2) remove the bladder, prostate and as many lymph nodes in the area as you can possibly reach and hope that is all the cancer there remains in the body. 70% of the time, if I am still Stage 2 after post-operative pathology, that is all the cancer there is.
Soooooo....the surgery is Friday, October 23. Been trying not to think about this one. I've had surgery before. Major surgery too. When I was young I had multiple ear surgeries that required general anesthesia and hospital stays. But this is different. This time they are going to re-engineer my insides. Cut things out; re-attach things here; completely cut holes in things. A lot of bad shit. Scary. I've read a lot about how folks say after 3 months they are back on their feet doing everything they used to do. I hope so.
I got the doctor I wanted. Dr. Nix is the surgeon who does a lot of these procedures. Only met him once. His Intern comes in first; to brief me on the surgery. We talk about a lot of things, and the subject turned to "Nerve sparring to save sexual function". The Intern says, "Well, the doctor will do all he can but this is a delicate procedure, its 50/50." I was stoic.
Then the doctor comes in, looks like maybe 30; Janice says 38. He's confident. Real confidant. I mean REAL confident. Strides in and takes a seat.
"I'm going to go over a few things, and then I'm going to let (forget the Intern's name) go over a few things and evaluate his responses". I really only remember two things:
First, when the subject turned to the Nerve Sparring Surgery again he pipes in...
"Hell, I have done a lot of these surgeries and I get pissed off, I mean REALLY PISSED OFF if you don't get a boner in 3 months or less!"
Okay, I thought, I like that enthusiasm and attitude.
The second thing I remember, when I asked what to do if something doesn't feel right when I get home since I'm so far away? ER, local doctor?
"Text me. You'll have my cell phone number before you leave. Text me first and I'll text you what to do." He's waving his cell phone at me. He was also returning texts while the other doctor was talking to me...I forgive you now!
So that's all I know for now. The big update will be 10 days to 2 weeks after the surgery when the pathology comes back from everything they removed from me. Was the cancer contained in the bladder, if so, how far in the muscle layer? Lymph nodes clean? Prostate? That's when the prognosis is much clearer.
I would like to take a moment and thank everyone who has messaged me an encouraging comment, came up to me and said you were praying for me or thinking about me, and those who have done the same to Janice. There have been so many and it has really been a blessing.
Until next time! Below is Dr. Jeffery Nix. The future of my junk is in his hands!
"When I first started blogging about having bladder cancer, I did not realize then the complete ramifications of the cystectomy procedure - taking the back-stabbing bladder out. While taking out the cancerous bladder was obviously required to rid the body of cancer, that meant writing about a lot of delicate anatomical issues - embarrassing stuff. Because of that, not much is written about bladder cancer and people don't confirm having it. Also, it lags behind cancer research funding even though its the fourth most diagnosed cancer. And I BET you don't know ONE famous person who has ever publicly acknowledged having bladder cancer."
Then Phil Lesh of the Grateful Dead releases a public statement this week saying he has bladder cancer. Great, blew my whole thesis. So I'll just get to the point. (He has non muscle invasive and his prognosis is good.)
I had a CT scan about 3 weeks ago to determine how my body responded to the chemotherapy...which had just ended at that time. The CT scan came back showing no obvious signs of cancer in the areas one would be concerned about; local lymph nodes, liver, lung, bones. Whew! No spread at this time.
They always do a CT scan before surgery because if it had showed up anywhere the surgery would have been cancelled. No need to go through the removal of the bladder if the cancer had already escaped the bladder.
So, the plan has always been, 1) Cisplatin/Gemcitabin chemo to kill any cancer cells that have escaped the bladder and kill the cancer in the bladder, 2) remove the bladder, prostate and as many lymph nodes in the area as you can possibly reach and hope that is all the cancer there remains in the body. 70% of the time, if I am still Stage 2 after post-operative pathology, that is all the cancer there is.
Soooooo....the surgery is Friday, October 23. Been trying not to think about this one. I've had surgery before. Major surgery too. When I was young I had multiple ear surgeries that required general anesthesia and hospital stays. But this is different. This time they are going to re-engineer my insides. Cut things out; re-attach things here; completely cut holes in things. A lot of bad shit. Scary. I've read a lot about how folks say after 3 months they are back on their feet doing everything they used to do. I hope so.
I got the doctor I wanted. Dr. Nix is the surgeon who does a lot of these procedures. Only met him once. His Intern comes in first; to brief me on the surgery. We talk about a lot of things, and the subject turned to "Nerve sparring to save sexual function". The Intern says, "Well, the doctor will do all he can but this is a delicate procedure, its 50/50." I was stoic.
Then the doctor comes in, looks like maybe 30; Janice says 38. He's confident. Real confidant. I mean REAL confident. Strides in and takes a seat.
"I'm going to go over a few things, and then I'm going to let (forget the Intern's name) go over a few things and evaluate his responses". I really only remember two things:
First, when the subject turned to the Nerve Sparring Surgery again he pipes in...
"Hell, I have done a lot of these surgeries and I get pissed off, I mean REALLY PISSED OFF if you don't get a boner in 3 months or less!"
Okay, I thought, I like that enthusiasm and attitude.
The second thing I remember, when I asked what to do if something doesn't feel right when I get home since I'm so far away? ER, local doctor?
"Text me. You'll have my cell phone number before you leave. Text me first and I'll text you what to do." He's waving his cell phone at me. He was also returning texts while the other doctor was talking to me...I forgive you now!
So that's all I know for now. The big update will be 10 days to 2 weeks after the surgery when the pathology comes back from everything they removed from me. Was the cancer contained in the bladder, if so, how far in the muscle layer? Lymph nodes clean? Prostate? That's when the prognosis is much clearer.
I would like to take a moment and thank everyone who has messaged me an encouraging comment, came up to me and said you were praying for me or thinking about me, and those who have done the same to Janice. There have been so many and it has really been a blessing.
Until next time! Below is Dr. Jeffery Nix. The future of my junk is in his hands!
Tuesday, August 4, 2015
Checking on those two things on the lungs
One thing I really like about UAB is that they have a patient portal, and you can email your physician a question at any time. They promise a business day response, and the two times I've used it, they respond.
I decided to ask about those two things on my lungs from the latest CT scan as I recall before there was only one. So sent this late on a Friday, so they got it on Monday, and I got my response this morning:
===================
I decided to ask about those two things on my lungs from the latest CT scan as I recall before there was only one. So sent this late on a Friday, so they got it on Monday, and I got my response this morning:
===================
To: Sonpavde, Guru - Hematology/ Oncology (Patient Portal - Hematology/Oncology)
Sent: 08/01/2015 01:42 p.m. CDT
Subject: CT Scan
Thank you for your message. It has been successfully sent to the appropriate care team.
Dr. Sonpavde,
Something has been on my mind since my visit Thursday. The Resident, I believe that is what he was that went over my CT Scan results, said that there were two nodules on my lung but nothing to worry about because they were there before. I do not have access to the CT Scan report when I received the PET scan but I seem to recall only 1 small mass on my lung; The latest CT Scan shows two, both that appears to be larger than the original mass identified with the PET scan.
Thank you for your message. It has been successfully sent to the appropriate care team.
Dr. Sonpavde,
Something has been on my mind since my visit Thursday. The Resident, I believe that is what he was that went over my CT Scan results, said that there were two nodules on my lung but nothing to worry about because they were there before. I do not have access to the CT Scan report when I received the PET scan but I seem to recall only 1 small mass on my lung; The latest CT Scan shows two, both that appears to be larger than the original mass identified with the PET scan.
Can you check this for me? I don’t have access to the reports using this online portal.
Many thanks,
Greg Loughlin
251.767.0985
=============================================
He replied:
From: Sonpavde, Guru P MD
To: Patient Portal - Hematology/Oncology;
Cc: Subramaniam, Sandy;
Sent: 8/4/2015 09:56:25
Subject: RE: Sonpavde, Guru - Hematology/ Oncology : CT Scan
To: Patient Portal - Hematology/Oncology;
Cc: Subramaniam, Sandy;
Sent: 8/4/2015 09:56:25
Subject: RE: Sonpavde, Guru - Hematology/ Oncology : CT Scan
This is the CT chest report and I would monitor but not change therapy now- changes at this size are not interpretable- unlikely cancer in my opinion:
Tiny 6 x 5 mm subpleural left lower lobe triangular shaped nodule, very likely a benign intrapulmonary lymph node. This does appear increased slightly in size in comparison with the outside diagnostic chest CT, probably due to differences in slice thickness but CT surveillance is suggested in this patient with known malignancy.No other potential intrathoracic metastatic disease.
==============================================
I really like this quick, matter of fact communication between my doctor and me.
Saturday, August 1, 2015
It didn't have to come to this
I am shivering as I write this due to one of the, thankfully infrequent, waves of nausea that has overcome me for a minute. But it goes away. The frustrating thing is, as I learned this past Thursday, it didn't have to be this way.
Thursday I went in for my CT Scan to see how my cancer was responding to chemo. A resident was brought in to compare this scan with the previous to see if the cancer had spread. He stated everywhere looked good, no new growth. He pointed out that there were two lesions on my lung, they were noted there before, hadn't grown, and didn't show metabolic activity so they were probably just cysts. So that's all good news, except I distinctly recall one cyst on my lung not two. I didn't really follow up on that because I was totally shocked by the next revelation.
If you have read my blog you recall I had a biopsy done on by bladder in December 2014. That biopsy came back negative for cancer; just "cell material and fibrin". Based on this cancer was off the table and that area of my bladder was labeled "Chronic Inflammation Disease". I kept going back to my doctor with the same symptoms and finally, 5 months after the first biopsy he decide to do another. Both biopsies my physician noted a pinkish area with a white (probably stone material) in the middle. The first biopsy had around a 2mm specimen and the second over 1.5 X 3 CM specimen, much larger the second time.
The second biopsy came back with Muscle Invading TCC Hi Grade. A dangerous situation. I had always assumed the physician just didn't get a large enough sample the first time. Obviously there was cancer there so how did he miss is it when collecting the specimen?
Well, he didn't miss it. I had the original slides from the first biopsy sent to UAB Hospital Lab to re-examine those slides. The UAB lab report, on the slides that Mobile Infirmary lab said was clear of cancer, stated that "Most of the lesions represent NON-INVASIVE, high-grade papillary urothelial carcinoma". Basically the slides in December showed a dangerous cancer caught early that had not yet invaded the muscle layer of the bladder. Papillary cancers look like "Pimples" growing inward from the bladder wall. Basically, pink with a white head.
All literature says treatment must begin within 3 months of diagnoses or risk of death is much greater. With a non-invasive diagnoses in December, I could have had that area resected with margins via a procedure known as a TUR and then BCG treatments. I would not have had to have my bladder removed, my prostate removed, and a urinary diversion performed and this awful Chemo. Treatment with non-invasive cancer has a 96% 5-year survival rate. Treatment with Muscle Invasive like I have now, depending on final bladder pathology, the 5-year survival is anywhere from 46% to 69%.
That's the difference 5 months delay in treatment makes.
Anyway, that's the shocker for me but I realize I cannot focus on that because as it is I have to deal with the reality of where I am at and not where I could have been. I'll pick my head back up and keep fighting this thing.
Thursday I went in for my CT Scan to see how my cancer was responding to chemo. A resident was brought in to compare this scan with the previous to see if the cancer had spread. He stated everywhere looked good, no new growth. He pointed out that there were two lesions on my lung, they were noted there before, hadn't grown, and didn't show metabolic activity so they were probably just cysts. So that's all good news, except I distinctly recall one cyst on my lung not two. I didn't really follow up on that because I was totally shocked by the next revelation.
If you have read my blog you recall I had a biopsy done on by bladder in December 2014. That biopsy came back negative for cancer; just "cell material and fibrin". Based on this cancer was off the table and that area of my bladder was labeled "Chronic Inflammation Disease". I kept going back to my doctor with the same symptoms and finally, 5 months after the first biopsy he decide to do another. Both biopsies my physician noted a pinkish area with a white (probably stone material) in the middle. The first biopsy had around a 2mm specimen and the second over 1.5 X 3 CM specimen, much larger the second time.
The second biopsy came back with Muscle Invading TCC Hi Grade. A dangerous situation. I had always assumed the physician just didn't get a large enough sample the first time. Obviously there was cancer there so how did he miss is it when collecting the specimen?
Well, he didn't miss it. I had the original slides from the first biopsy sent to UAB Hospital Lab to re-examine those slides. The UAB lab report, on the slides that Mobile Infirmary lab said was clear of cancer, stated that "Most of the lesions represent NON-INVASIVE, high-grade papillary urothelial carcinoma". Basically the slides in December showed a dangerous cancer caught early that had not yet invaded the muscle layer of the bladder. Papillary cancers look like "Pimples" growing inward from the bladder wall. Basically, pink with a white head.
All literature says treatment must begin within 3 months of diagnoses or risk of death is much greater. With a non-invasive diagnoses in December, I could have had that area resected with margins via a procedure known as a TUR and then BCG treatments. I would not have had to have my bladder removed, my prostate removed, and a urinary diversion performed and this awful Chemo. Treatment with non-invasive cancer has a 96% 5-year survival rate. Treatment with Muscle Invasive like I have now, depending on final bladder pathology, the 5-year survival is anywhere from 46% to 69%.
That's the difference 5 months delay in treatment makes.
Anyway, that's the shocker for me but I realize I cannot focus on that because as it is I have to deal with the reality of where I am at and not where I could have been. I'll pick my head back up and keep fighting this thing.
Thursday, July 16, 2015
Round 2 of Chemo
THE WEEK THAT WAS: This was a TOUGH week. As I write this, the Wednesday following the Cisplatin infusion last Thursday, I feel wonderful. I had actually forgotten how bad the first five days after Cisplatin Chemo would be since during the first round, after the first five days, it was relatively easy. I take a two drug nausea regime which mostly keeps the nausea in check - but it is always right there in the pit of my stomach letting me know it can arrive at any moment. On the very few occasions where vomiting won out it came quickly, left quickly, but was surprisingly powerful. Not to be gross, well kinda gross, but it was otherworldly strong. Nothing came forth (dry heaves) but in the midst of the throes I was weirdly fascinated by the sounds and the force I have never experienced before. But gone quickly. Yesterday, Tuesday, I woke up feeling pretty well but that went away right after breakfast and I took by two drug regimen and they quickly put me to sleep and ended the day for me.
ABOUT NAUSEA MEDICINE: During the first round I took one drug, Promethazine, every 8 hours and another, Zofran, every 8 hours as needed. Taken together, I am in a semi-conscious state; which is how I like it those first days after Cisplatin. My stomach mostly feels empty? I use a question mark because I am eating well, but the feeling might be just the effect the chemo has on the cells lining my stomach. That empty feeling is my stomach's way of letting me know to keep taking the Zofran because overwhelming nausea is always just a step away. The only time I truly get nauseous is when I begin to feel better about days 4-5 and stop taking the Zofran until "as needed". Sometimes I'm off by a half hour but its pretty fast acting, within minutes actually.
During this round I used a patch, much like a nicotine patch, that lasts one week and slowly keeps Zofran continuously in my blood stream. Two things. First, Zofran in pill form costs $40.00 for a 2 week supply. The patch form costs $1,400 for one month supply. My insurance, BCBS, paid for almost all of both types, which is ridiculous to me. Why should BCBS pay 17.5 times as much for the convenience of me not having to pop a pill every 8 hours? Secondly, the patch didn't work nearly as well as the pill form. I got sick a few times with the patch and had to pop a pill for extra help - which causes extreme constipation. After a couple days I took the patch off and went back to the pills. They are fast acting and if taken timely, better for me. I guess that's a waste of $1,400. Sorry about that BCBS.
AFTER THE CHEMO: I didn't realize I was supposed to be embarrassed about the cancer I have, otherwise I might not have started this blog. Come to find out, it is very hard to find famous people who have had bladder cancer because most don't like to admit it. Bladder cancer is the 4th most common cancer, but the most expensive to treat by far. I guess the issue that causes celebrities to hide the fact they have this cancer is "The Bag". With this cancer, the bladder must go and you have to decide which diversion method to use to remove urine from the body. All methods use some portion of the intestines to create a conduit for the urine to leave the body. The most common currently for people my age I understand is the "Neo-Bladder". That is cutting out a section of the intestine, forming a "bladder" like balloon, attaching the ureters from the kidney and the attaching this new bladder to the urethra to pee through the penis as usual. Upside is you most likely will pee normally, though not guaranteed. Downsides are many, such as this new "bladder" will only hold pee for about 3 hours and you will have to urinate every three hours for the rest of your life. Even during the night. Plus there are infections, and catheterizing and generally about 50% of the time, serious complications requiring hospital stays and further surgeries. Another form is the Indiana Pouch. Pretty similar except this pouch is attached to the inside of the abdominal wall with a little hole. Again, about every 3 hours you put a little straw in the hole to drain out the urine. (Now you understand why famous people don't tell a lot of people they have/had bladder cancer?) Lastly, the tried and true Illeal Conduit. This take a section of the small intestine and creates a "stoma", or hole, in the abdomen that a bag attaches too to collect the urine. Very unsexy, but less much less complications. Another benefit of the "bag" method to me is that the other methods take a lot of time, energy, work, follow up treatments for complications to finally get it right. If the cancer comes back, and my cancer has a pretty big recurrence rate, I'd hate to be dealing with all that in the last months of my life.
I have about two months to decide. The surgeries are pretty major. About 2 weeks in the hospital and about 6 weeks recovery time. I'm trying not to think about that honestly, and just focus on Chemo. I imagine surgery will be in early October - an incredibly busy time at work.
On a personal note: I'm looking forward to ending chemo just in time to celebrate my 30th wedding anniversary with my beautiful bride Janice. Throughout all this I can't escape the knowledge that I have been incredibly blessed. I have been in love with her everyday since I first met her and have been completely satisfied with the life and family we have created. It is very hard to have a pity party for yourself when you are in a period of reflection of 30 years together with another person and know that the the life you have led with her has been one that has exceeded any possible hope when you exchanged those vows. 1,2,3.
ABOUT NAUSEA MEDICINE: During the first round I took one drug, Promethazine, every 8 hours and another, Zofran, every 8 hours as needed. Taken together, I am in a semi-conscious state; which is how I like it those first days after Cisplatin. My stomach mostly feels empty? I use a question mark because I am eating well, but the feeling might be just the effect the chemo has on the cells lining my stomach. That empty feeling is my stomach's way of letting me know to keep taking the Zofran because overwhelming nausea is always just a step away. The only time I truly get nauseous is when I begin to feel better about days 4-5 and stop taking the Zofran until "as needed". Sometimes I'm off by a half hour but its pretty fast acting, within minutes actually.
During this round I used a patch, much like a nicotine patch, that lasts one week and slowly keeps Zofran continuously in my blood stream. Two things. First, Zofran in pill form costs $40.00 for a 2 week supply. The patch form costs $1,400 for one month supply. My insurance, BCBS, paid for almost all of both types, which is ridiculous to me. Why should BCBS pay 17.5 times as much for the convenience of me not having to pop a pill every 8 hours? Secondly, the patch didn't work nearly as well as the pill form. I got sick a few times with the patch and had to pop a pill for extra help - which causes extreme constipation. After a couple days I took the patch off and went back to the pills. They are fast acting and if taken timely, better for me. I guess that's a waste of $1,400. Sorry about that BCBS.
AFTER THE CHEMO: I didn't realize I was supposed to be embarrassed about the cancer I have, otherwise I might not have started this blog. Come to find out, it is very hard to find famous people who have had bladder cancer because most don't like to admit it. Bladder cancer is the 4th most common cancer, but the most expensive to treat by far. I guess the issue that causes celebrities to hide the fact they have this cancer is "The Bag". With this cancer, the bladder must go and you have to decide which diversion method to use to remove urine from the body. All methods use some portion of the intestines to create a conduit for the urine to leave the body. The most common currently for people my age I understand is the "Neo-Bladder". That is cutting out a section of the intestine, forming a "bladder" like balloon, attaching the ureters from the kidney and the attaching this new bladder to the urethra to pee through the penis as usual. Upside is you most likely will pee normally, though not guaranteed. Downsides are many, such as this new "bladder" will only hold pee for about 3 hours and you will have to urinate every three hours for the rest of your life. Even during the night. Plus there are infections, and catheterizing and generally about 50% of the time, serious complications requiring hospital stays and further surgeries. Another form is the Indiana Pouch. Pretty similar except this pouch is attached to the inside of the abdominal wall with a little hole. Again, about every 3 hours you put a little straw in the hole to drain out the urine. (Now you understand why famous people don't tell a lot of people they have/had bladder cancer?) Lastly, the tried and true Illeal Conduit. This take a section of the small intestine and creates a "stoma", or hole, in the abdomen that a bag attaches too to collect the urine. Very unsexy, but less much less complications. Another benefit of the "bag" method to me is that the other methods take a lot of time, energy, work, follow up treatments for complications to finally get it right. If the cancer comes back, and my cancer has a pretty big recurrence rate, I'd hate to be dealing with all that in the last months of my life.
I have about two months to decide. The surgeries are pretty major. About 2 weeks in the hospital and about 6 weeks recovery time. I'm trying not to think about that honestly, and just focus on Chemo. I imagine surgery will be in early October - an incredibly busy time at work.
On a personal note: I'm looking forward to ending chemo just in time to celebrate my 30th wedding anniversary with my beautiful bride Janice. Throughout all this I can't escape the knowledge that I have been incredibly blessed. I have been in love with her everyday since I first met her and have been completely satisfied with the life and family we have created. It is very hard to have a pity party for yourself when you are in a period of reflection of 30 years together with another person and know that the the life you have led with her has been one that has exceeded any possible hope when you exchanged those vows. 1,2,3.
Wednesday, July 1, 2015
First Week Off Chemo..
There is no Chemo this week; its the week off. Actually, I mostly feel like I've already had a week off as the Gemzar I got last week didn't really affect me except baaareely felt like I might get nauseous the day of and the next but a couple pills and that quickly went away. Right now, I wonder if it wouldn't be more effective to kick this treatment into high gear and shove more of that harsh Cisplatin in my veins. That kicked my butt and I could feel it doing something right where the cancer is at. But I reckon I'll get more next week soon enough. But for right now, have all my hair and doing all right.
I've got to start wrapping my head around the fact they are going to take out my bladder and create a diversion and I've got to determine for certain which one I want.
I've got to start wrapping my head around the fact they are going to take out my bladder and create a diversion and I've got to determine for certain which one I want.
Friday, June 26, 2015
2nd Chemo Treatment (Day 8)
Just a quick update:
I had just the Gemcitabine chemo yesterday. The physician suggested I not take the Promethazine for nausea right now as it will/does make me very tired. The Zofran works really fast and since the Gem isn't as toxic as Cisplatin I may or may not need it. I took a couple Zofran pills yesterday and never felt anything close to nausea so today I haven't taken any so far. I feel fine after that chemo but I recall I felt the same after Cisplatin until the following evening. Fingers crossed for tonight. But so far so good. So far, it seems the first week of each chemo cycle will be the toughest one.
Read Ken's blog today...guy is having amazing results! If you have BC I advise you to read his story at the link to the right.
Tuesday, June 23, 2015
5 Days post Cisplatin/GS Chemo
Finally a good day. Woke up pretty hungry and feeling pretty good. Still lethargic but not ill. Goi g to see the doctor at the infusion clinic I'm going to on use locally when not in Birmingham today.
Saturday, June 20, 2015
2nd Night After First Chemo Treatment
After having an easy first night after chemo Thursday, and an easy Friday and Friday evening, I had assumed I was going to breeze by chemo without many side effects. Wrong. Early Saturday morning, about 5am, the nausea came in fierce and surprising waves. I yelled out for Janice and she ran for my pills, which I didn't take earlier like I should have. After about 20 minutes of awful nausea and fighting off vomiting it eased up. Then a burning sensation kicked in right about the spot where my tumor is/was at the neck of my bladder. I wonder if the chemo and the cancer in that area are in a fight for that spot of my bladder? If so, its now Saturday afternoon and all that has gone away now and resting comfortably. I have taken my nausea medicine today like clockwork and so far, so good.
Friday, June 19, 2015
Finally, Some Good News...
On Wednesday, June 17, 2015 I went in for my PET scan. This is an important scan as it can detect areas of "high metabolic activity". Mean fast dividing cancer cells. You don't eat for 6 hours prior to the scan to allow for your cancer cells to be "hungry" so that when the chemical radioactive material is inserted into your blood stream, they attach to your cancer cells the same way cancer cells attract sugar for energy. They radioactive agent gives off gamma rays that glow in the scan. Where you glow, you got cancer. Took about 40 minutes. No problems or other than remaining still. The machines are now "doughnuts" so you aren't stuck in a small tube. (I thought I could eat up to 4 hours before so I had to wait for an hour before I could test.)
I went to get my Power Port put in. This is a device they implant under the skin layer of your upper right chest, and then run a line under your clavicle into your jugular vein. This allows your chemo to go directly into your heart and circulatory system without having to find new veins every time you need blood pulled and chemo inserted. There is a circular opening under your skin that they find with their finger and just insert the needle there. Also, eliminate burning of chemo going in through smaller veins in your inner elbow. The procedure is outpatient surgery with a some medicine to make you loopy, but not out, and local anesthesia in the chest area. No pain at all, takes about 2 hours from check-in to discharge. The procedure itself is 30 minutes to an hour. They take an xray of your chest and I imagine this updates repeatedly as the surgeon guides the line to your vein. I could see the xray above me...and there it was. A small, perfectly round object, obviously out of place, right in the area where my right lung was. Nothing like that anywhere else on the xray. Hmmmm, bet I'll hear more about that tomorrow.
On Thursday, June 18, I went for a follow up with Dr. Sonpavde for the results of my scan. I had prepared myself extensively for the bad news. only 10% of Bladder Cancer patients are under the age of 55, only 30% of Bladder Cancer is High Grade, Aggressive. I was beating all the bad odds so I figured the die was cast. I tried preparing my wife, Janice, for the news too. I didn't want her to be shocked by anymore bad news. She wasn't having it for the most part. Plus, the radiologist wouldn't look me in the eye as I asked him on the way out, "See anything? Can't say? Wink if you did..."
Dr. Sonpavde came into the room, and from the first visit pretty unemotional guy, but this time, happy. He smilingly said the PET scan came back with no cancer detected anywhere in my body other than my bladder. Liver functions are perfect (always good news for a bar owner), Kidney clear, lymph node, nada. There was a small 9mm thing on my right lung he said, (here we go...) but that too looks to be nothing. We'll keep an eye on it but it didn't "glow" at all. People have these cysts so not uncommon.
I had to let it sink in for a second. Wasn't expecting this news. You see, when you set yourself up for really bad news, its as much a shock when you get good news as when you expect good news but get bad. Confusing you? Sorry. But after a second I said, "Are you saying you didn't find cancer anywhere else, still contained to the bladder?" "Yes, it is the best possible news". "HURRAY! I got stage II cancer!" I said and he smiled. Perspective is everything. So this means I have a fighting chance. If it would have spread already, I'd have about 70% chance of dying in 5 years, most likely much less than 5 years. Now were talking CURE rate of 65% to 70% percent with Chemo and Radical Cystectomy (RC). There are most likely little pissed off individual cancer cells floating in my blood stream that haven't yet figured out how to latch on to something and start making cancer cell babies in enough mass to show up on anything. So we do Chemo first to kill them, and shrink my original tumor prior to surgery. No one really knows what the size of my tumor is since some of it (maybe all, don't know) was taken out during the second biopsy. And in the PET scan my bladder just glowed as that where the cancer was and where the injected material gathers before I urinate it out. We'll run more test after my two rounds of Chemo.
NOTE TO CANCER PATIENTS: I did myself zero good by feeling sorry for myself and thinking the universe was setting me up to die and all the news would be bad. That was a lot of sleepness nights and unnecessary worry. Try to stay positive because all the news will not be bad. This is a tough illness, and the news won't always be good, but don't assume bad news before you know it. Rest your mind if you can.
I went to get my first Chemo treatment that afternoon and that was pretty routine as well, if not long. I had one bag of saline first, so my body would be ready to pee out this poison they were about to fill me with. When it hits the kidneys you want it out of there as fast as possible to prevent Kidney damage, so drink LOTS of Gator-Aid. Water is good too, but you need electrolyte replacement as well so my nurse recommended the drink created for the Florida football team, GO SEC! First chemo treatment consists of 1 hour saline, 1 hour Gencitabin, 2 hours of Cisplatin (the mean one), then another hour of saline. Long day. They'll also put in some anti-nausea medicine, in addition to what you'll already be taking in pill form. They say nausea is hard to beat once it sets in so important to stay a step ahead of it. Also, this chemo is platinum based so may leave a metal taste in your mouth. They advise not to eat your favorite foods on chemo because you may create an aversion to it later.
Friday, June 19 I have pretty much stayed in bed. Didn't have to, just haven't had any reason to get up and a little tired. Nausea felt like it was coming on a couple times but Janice chunks pills down my throat when I tell her and been mostly fine all day. Shorts posts later in the week to update chemo effects as I go along. I just have a 1 hour chemo the second week so going to try and have that in Daphne rather than Birmingham. I will see my doctor every three weeks, unless something changes, and that when I have the 6 hour chemo treatment which I will have in Birmingham at the same time. I included a picture of me getting some work done while getting chemo treatment.
I went to get my Power Port put in. This is a device they implant under the skin layer of your upper right chest, and then run a line under your clavicle into your jugular vein. This allows your chemo to go directly into your heart and circulatory system without having to find new veins every time you need blood pulled and chemo inserted. There is a circular opening under your skin that they find with their finger and just insert the needle there. Also, eliminate burning of chemo going in through smaller veins in your inner elbow. The procedure is outpatient surgery with a some medicine to make you loopy, but not out, and local anesthesia in the chest area. No pain at all, takes about 2 hours from check-in to discharge. The procedure itself is 30 minutes to an hour. They take an xray of your chest and I imagine this updates repeatedly as the surgeon guides the line to your vein. I could see the xray above me...and there it was. A small, perfectly round object, obviously out of place, right in the area where my right lung was. Nothing like that anywhere else on the xray. Hmmmm, bet I'll hear more about that tomorrow.
On Thursday, June 18, I went for a follow up with Dr. Sonpavde for the results of my scan. I had prepared myself extensively for the bad news. only 10% of Bladder Cancer patients are under the age of 55, only 30% of Bladder Cancer is High Grade, Aggressive. I was beating all the bad odds so I figured the die was cast. I tried preparing my wife, Janice, for the news too. I didn't want her to be shocked by anymore bad news. She wasn't having it for the most part. Plus, the radiologist wouldn't look me in the eye as I asked him on the way out, "See anything? Can't say? Wink if you did..."
Dr. Sonpavde came into the room, and from the first visit pretty unemotional guy, but this time, happy. He smilingly said the PET scan came back with no cancer detected anywhere in my body other than my bladder. Liver functions are perfect (always good news for a bar owner), Kidney clear, lymph node, nada. There was a small 9mm thing on my right lung he said, (here we go...) but that too looks to be nothing. We'll keep an eye on it but it didn't "glow" at all. People have these cysts so not uncommon.
I had to let it sink in for a second. Wasn't expecting this news. You see, when you set yourself up for really bad news, its as much a shock when you get good news as when you expect good news but get bad. Confusing you? Sorry. But after a second I said, "Are you saying you didn't find cancer anywhere else, still contained to the bladder?" "Yes, it is the best possible news". "HURRAY! I got stage II cancer!" I said and he smiled. Perspective is everything. So this means I have a fighting chance. If it would have spread already, I'd have about 70% chance of dying in 5 years, most likely much less than 5 years. Now were talking CURE rate of 65% to 70% percent with Chemo and Radical Cystectomy (RC). There are most likely little pissed off individual cancer cells floating in my blood stream that haven't yet figured out how to latch on to something and start making cancer cell babies in enough mass to show up on anything. So we do Chemo first to kill them, and shrink my original tumor prior to surgery. No one really knows what the size of my tumor is since some of it (maybe all, don't know) was taken out during the second biopsy. And in the PET scan my bladder just glowed as that where the cancer was and where the injected material gathers before I urinate it out. We'll run more test after my two rounds of Chemo.
NOTE TO CANCER PATIENTS: I did myself zero good by feeling sorry for myself and thinking the universe was setting me up to die and all the news would be bad. That was a lot of sleepness nights and unnecessary worry. Try to stay positive because all the news will not be bad. This is a tough illness, and the news won't always be good, but don't assume bad news before you know it. Rest your mind if you can.
I went to get my first Chemo treatment that afternoon and that was pretty routine as well, if not long. I had one bag of saline first, so my body would be ready to pee out this poison they were about to fill me with. When it hits the kidneys you want it out of there as fast as possible to prevent Kidney damage, so drink LOTS of Gator-Aid. Water is good too, but you need electrolyte replacement as well so my nurse recommended the drink created for the Florida football team, GO SEC! First chemo treatment consists of 1 hour saline, 1 hour Gencitabin, 2 hours of Cisplatin (the mean one), then another hour of saline. Long day. They'll also put in some anti-nausea medicine, in addition to what you'll already be taking in pill form. They say nausea is hard to beat once it sets in so important to stay a step ahead of it. Also, this chemo is platinum based so may leave a metal taste in your mouth. They advise not to eat your favorite foods on chemo because you may create an aversion to it later.
Friday, June 19 I have pretty much stayed in bed. Didn't have to, just haven't had any reason to get up and a little tired. Nausea felt like it was coming on a couple times but Janice chunks pills down my throat when I tell her and been mostly fine all day. Shorts posts later in the week to update chemo effects as I go along. I just have a 1 hour chemo the second week so going to try and have that in Daphne rather than Birmingham. I will see my doctor every three weeks, unless something changes, and that when I have the 6 hour chemo treatment which I will have in Birmingham at the same time. I included a picture of me getting some work done while getting chemo treatment.
Monday, June 15, 2015
First Visit to UAB Doctors to Plan Treatment
I went to my first visit at UAB last Thursday, 6/11/15. Drove up Wednesday and stayed the night at the Courtyard attached to the hospital since we had an appointment an early appointment. I met with my urologist/oncologist, Dr. Sunil Sudarshan at 8am. He had already had my specimen looked at by his lab, and sure enough, High Grade, Aggressive TCC of the bladder. No surprise there. He mentioned that is was "through" the muscle, kind of as an aside. I immediately stopped the conversation. "Is it 'through' the muscle or 'in' the muscle. Those are two very different animals with very different life expectancy. In the muscle, but confined to the bladder, I have about a 65-75% chance to live 5 years. (Believe me, I've researched the hell out of this) and through the muscle and out the bladder drops it to about 30%. If you recognized I gave myself about a 98% chance to live 5 years 3 weeks ago, now its dropped to 65-70, I am fighting for every percentage point. Dr. Sudarshan immediately understood my question and said, "No, no. I mean we know its in the muscle. How far we cannot say, there is no evidence it left the bladder." [Not really buying that either but I'll explain that in a bit]. Basically, and I knew this up front, my treatment will be 4 rounds of 3 weeks of chemo, followed by a Radical Cystectomy (RC). More on that when I wrap my head around that.
I went the Kirkland Clinic at UAB because everything I've read says RUN to a National Cancer Institute designated hospital. And UAB is one. There was however, another doctor I preferred when I researched the available doctors at this clinic. I'm already a bad patient, but remember from the first blog I said I wasn't allowing anyone else to decide for me after the first doctor. Okay, so here's the deal. This doctor has credentials to die for. He graduated from Duke University Medical School, He did is residency at USC Medical School, and then did a fellowship at the National Cancer Institute specializing, and studying, Urology Cancers. But then my sister pointed out; all his research papers focus on kidney cancers; not bladder. hmmmmmmmmm. I have to approach this delicately."
"Umm, Doc. I'm here because of your credentials and those of your partners. They are impeccable specifically for my kind of cancers. I don't want to infer anything or insult you in any way, and if I do, just shut me up. But I noticed that most of your research has been with Kidney cancers. However, how familiar are you with performing an RC procedure?" He replied that he does a few a month, more one month than another. Comes in spurts. And he's about to start using the robot for minimally invasive (GOOD, that was my next question, do they have that). I asked him about nerve sparing and he said its about 50/50. NOT what I wanted to hear. He mentioned that his partner, does quite a few. [I already researched his partner, definitely was my FIRST choice because he also was a fellow at the NCI and his focus was on Bladder Cancer. The wait was too long for him] Dr. Sudarshan said if I was more comfortable that I could have Dr. Nix perform the RC. Then he paused, and said, "Everything you are asking is EXACTLY what I would be asking. Let's just make Dr. Nix performing the surgery the default option. I have absolutely no problem with that" I now love this doctor. He is going to have his radiologist re-examine my CT as well. I mentioned that I no longer wish to see the urologist here. Keep my family practice doctor in Daphne in the loop, but I'm not going back to the urologist that got my original biopsy wrong. He said fine. I had mentioned to Dr. Sudarshan my spine would get sore after a while, most likely age, and he agreed. He requested a bone scan to be sure though, and that's really what I wanted - did research.
We were now done and I was off to the next doctor. He pretty much was cutting me loose till after chemo. Okay, that's the plan.
Next I went to see my new hematologist/oncologist. His name is Dr. Guru Sonpavde. His credentials didn't stand out to me, but what do I know. He went to medical school in India and his residency and the rest in the US. He is board certified in oncology, hematology, and internal medicine. He was very matter of fact. I liked that. In fact, he noticed the "low density" nodule in my right lobe mentioned in the CT scan (most people have these, likely nothing) and something about two Lymph Nodes in the back of my abdomen. Again, probably nothing the other doctors said. He wanted to be sure. He cancelled my bone scan and order a PET scan. My heart leapt. I really wanted that. This scan just looks for abnormal cell activity. Everywhere.
After 8 months of bleeding, a bad biopsy, going back to the doctor for the same thing 3 times subsequent before a rebiopsy was performed to find the cancer was now 3.5 X 3 CM in my bladder neck, I simply find it hard to believe my cancer is still confined to my bladder. If it is, I have a good chance, but fact is, with cancer, time is not on your side. I feel like the window of opportunity was missed. Just a feeling though, the PET scan will tell the tale.
Dr. Sonpavde new about all the studies. In fact, he's leading one. We talked about GC and MVAC. I said I just wanted GC. The outcome seems to be the same on both arms of that trial, but GC, while toxic, less than MVAC. Dying from Chemo in GC is abou 3%, from MVAC about 5% with the same outcome. Again, I gotta play the odds. I mentioned that I might want to have my chemo infusion done in Daphne under his direction. He was very hesitant about this. Of course, it was my call. He said in that case he would be the consulting doctor, and the guy in Daphne, down from the Home Depot would be the primary oncologist. He would confer with the doctor but they don't always do what he tells them.
"WHOA!" I actually said whoa. The reality hit me. I don't have a doctor. I LOVE this doctor. He knows his stuff. Dr. Sudarshan cut me loose until after Chemo. I basically fired my hometown Urologist. I came to UAB for UAB doctors. I'm sure the guy in Daphne is fine, but my sister did hours of research to find the best facility with the best doctors.
"WHOA! I need you to know YOU are my doctor. No one in Daphne, not the urologist in Daphne. I will do exactly what you tell me to do. We will decide together my treatment. I need someone who specifically gives a damn about me personally. I want that to be you. Do you want that to be you? If so, everything we do is with that in mind. If the guy in Daphne will do what you say verbatim, okay, if not, I'm driving here."
He got that. It clicked. This is when he ordered my PET scan. He also said for me to talk to the doctor here in Daphne, and if I'm comfortable he will follow direction, okay, if not, drive here. I never talked to the doctor in Daphne, I plan on driving to Birmingham weekly for the next 3 months. PLUS, I need them to see me. I need them to think of me when ideas come up or opportunities arise. I got a doctor, and for the next 3 months, his name is Guru. And I'm very comfortable with that.
Well, that's it until Wednesday, June 17 I go in for my PET scan and that afternoon I get my "Port" put in my chest. This is what they'll run the chemo through. Shouldn't hurt and I'll have anesthesia to put it in. Thursday I meet with Dr. Sonpavde at 8am to go over the results of the PET scan from the day before and start the first 6 hour chemo infusion at 10am. Regardless of what the PET scan shows. the treatment is the same. Its just if its confined to the bladder we are trying for a cure, otherwise, we are fighting for time.
Well, that's all I know right now. I am attaching a picture of Dr. Sonpavde, right now, this is the guy that directs my care.
I went the Kirkland Clinic at UAB because everything I've read says RUN to a National Cancer Institute designated hospital. And UAB is one. There was however, another doctor I preferred when I researched the available doctors at this clinic. I'm already a bad patient, but remember from the first blog I said I wasn't allowing anyone else to decide for me after the first doctor. Okay, so here's the deal. This doctor has credentials to die for. He graduated from Duke University Medical School, He did is residency at USC Medical School, and then did a fellowship at the National Cancer Institute specializing, and studying, Urology Cancers. But then my sister pointed out; all his research papers focus on kidney cancers; not bladder. hmmmmmmmmm. I have to approach this delicately."
"Umm, Doc. I'm here because of your credentials and those of your partners. They are impeccable specifically for my kind of cancers. I don't want to infer anything or insult you in any way, and if I do, just shut me up. But I noticed that most of your research has been with Kidney cancers. However, how familiar are you with performing an RC procedure?" He replied that he does a few a month, more one month than another. Comes in spurts. And he's about to start using the robot for minimally invasive (GOOD, that was my next question, do they have that). I asked him about nerve sparing and he said its about 50/50. NOT what I wanted to hear. He mentioned that his partner, does quite a few. [I already researched his partner, definitely was my FIRST choice because he also was a fellow at the NCI and his focus was on Bladder Cancer. The wait was too long for him] Dr. Sudarshan said if I was more comfortable that I could have Dr. Nix perform the RC. Then he paused, and said, "Everything you are asking is EXACTLY what I would be asking. Let's just make Dr. Nix performing the surgery the default option. I have absolutely no problem with that" I now love this doctor. He is going to have his radiologist re-examine my CT as well. I mentioned that I no longer wish to see the urologist here. Keep my family practice doctor in Daphne in the loop, but I'm not going back to the urologist that got my original biopsy wrong. He said fine. I had mentioned to Dr. Sudarshan my spine would get sore after a while, most likely age, and he agreed. He requested a bone scan to be sure though, and that's really what I wanted - did research.
We were now done and I was off to the next doctor. He pretty much was cutting me loose till after chemo. Okay, that's the plan.
Next I went to see my new hematologist/oncologist. His name is Dr. Guru Sonpavde. His credentials didn't stand out to me, but what do I know. He went to medical school in India and his residency and the rest in the US. He is board certified in oncology, hematology, and internal medicine. He was very matter of fact. I liked that. In fact, he noticed the "low density" nodule in my right lobe mentioned in the CT scan (most people have these, likely nothing) and something about two Lymph Nodes in the back of my abdomen. Again, probably nothing the other doctors said. He wanted to be sure. He cancelled my bone scan and order a PET scan. My heart leapt. I really wanted that. This scan just looks for abnormal cell activity. Everywhere.
After 8 months of bleeding, a bad biopsy, going back to the doctor for the same thing 3 times subsequent before a rebiopsy was performed to find the cancer was now 3.5 X 3 CM in my bladder neck, I simply find it hard to believe my cancer is still confined to my bladder. If it is, I have a good chance, but fact is, with cancer, time is not on your side. I feel like the window of opportunity was missed. Just a feeling though, the PET scan will tell the tale.
Dr. Sonpavde new about all the studies. In fact, he's leading one. We talked about GC and MVAC. I said I just wanted GC. The outcome seems to be the same on both arms of that trial, but GC, while toxic, less than MVAC. Dying from Chemo in GC is abou 3%, from MVAC about 5% with the same outcome. Again, I gotta play the odds. I mentioned that I might want to have my chemo infusion done in Daphne under his direction. He was very hesitant about this. Of course, it was my call. He said in that case he would be the consulting doctor, and the guy in Daphne, down from the Home Depot would be the primary oncologist. He would confer with the doctor but they don't always do what he tells them.
"WHOA!" I actually said whoa. The reality hit me. I don't have a doctor. I LOVE this doctor. He knows his stuff. Dr. Sudarshan cut me loose until after Chemo. I basically fired my hometown Urologist. I came to UAB for UAB doctors. I'm sure the guy in Daphne is fine, but my sister did hours of research to find the best facility with the best doctors.
"WHOA! I need you to know YOU are my doctor. No one in Daphne, not the urologist in Daphne. I will do exactly what you tell me to do. We will decide together my treatment. I need someone who specifically gives a damn about me personally. I want that to be you. Do you want that to be you? If so, everything we do is with that in mind. If the guy in Daphne will do what you say verbatim, okay, if not, I'm driving here."
He got that. It clicked. This is when he ordered my PET scan. He also said for me to talk to the doctor here in Daphne, and if I'm comfortable he will follow direction, okay, if not, drive here. I never talked to the doctor in Daphne, I plan on driving to Birmingham weekly for the next 3 months. PLUS, I need them to see me. I need them to think of me when ideas come up or opportunities arise. I got a doctor, and for the next 3 months, his name is Guru. And I'm very comfortable with that.
Well, that's it until Wednesday, June 17 I go in for my PET scan and that afternoon I get my "Port" put in my chest. This is what they'll run the chemo through. Shouldn't hurt and I'll have anesthesia to put it in. Thursday I meet with Dr. Sonpavde at 8am to go over the results of the PET scan from the day before and start the first 6 hour chemo infusion at 10am. Regardless of what the PET scan shows. the treatment is the same. Its just if its confined to the bladder we are trying for a cure, otherwise, we are fighting for time.
Well, that's all I know right now. I am attaching a picture of Dr. Sonpavde, right now, this is the guy that directs my care.
Monday, June 8, 2015
Highly Aggressive, Invasive Transitional Cell Carcinoma into the Muscularis Propria
I have Bladder Cancer. I got this news May 28, 2015 and it has been a whirlwind of emotions. Why am I writing this blog? My sister suggested it as we have both received significant information and just plain real info and no b.s. detail of what to expect from another bladder cancer fighter named Ken by reading his blog. It is comforting to know what to expect, to eliminate the fear of the unknown - so this blog is mostly for future unfortunate members of my club - as another survivor called me. It is also for my family and friends to know what is happening with me. Friends who really care and might not know how to ask. You can share this journey with me, but be forewarned, don't know how it is going to end. If it becomes too much, stop reading - you have your life, be happy! So with that, I will, to the best of my ability document my experiences. Because this is this first post of my blog, and I'm including as much history as I can recall for background - its gonna be a long one.
I have had scar tissue in my penis since I was 6. I was taking a bath after swimming one day, saw pine straws floating on the water, and decided to see how far I could put it up my wahoo. Pretty far it turned out. I had to get scar tissue out once every 10 years after turning 21. When I was about 47 my need to urinate became much more urgent. I mentioned this to my GP during a physical, he gave me a prostate check and I was good. Prescribe me Flonase to see if it helped. It didn't. I just made sure to be closer to a bathroom when the urge hit. Also, figured I was just dehydrated, which I was, and that could have been what it was back then. Who knows?
The urgency to urinate came to a climax in early 2014 and by November it was bleeding. That doesn't seem right. Never bled before. Just a little strip of blood after I urinated. I tend to urinate sitting at home since the scar tissue makes a straight stream from a standing position impossible. But after a pee, I would get a tiny pain sensation and a little stripe of blood in the toilet, about a pencil lead wide, that would stream to the bottom and stay clearly separate from the urine and water. I saw my new GP (we had moved) and he wanted me to be seen by a urologist right away. Took a month to get an appointment so I finally got in to an office visit in early December 2014. The doctor said because of my relatively young age probably the stricture popped a vessel, its what I thought too, definitely wasn't considering cancer. I went in for an ultrasound on my Kidneys, forgot what I thought that was for, but again, not cancer. I was a terribly ill informed early patient.
On December 15, 2014 I had a Cystoscopy and the doctor identified an area of "inflammation" at the neck of my bladder. The procedure last only about 15 minutes. He did a biopsy and delivered 2mm of material to the pathologist. After the procedure he told my wife there was a little white spot but it didn't look like anything, probably a stone caused an irritation. He later told me it came back negative for cancer. Good, I didn't even realize a biopsy was on the table? I found out when I got my records that the sample came back as Fibrin and broken cell fragments. He did remove scar tissue, which he was most concerned about it seems, and I left the hospital with a Foley catheter. I removed the catheter after 3 days without problem. The bleeding was pretty red and dripping, not like before, but more and obviously I had a wound. Urinating was painful peeing over an open wound. But after 3 days most bleeding went away...except for that little pencil lead width strip at the end of my urination.
I went back to the urologist for post procedure follow up on December 29 and told him everything else was fine but I still had that bleeding. He told me maybe if I self catheterize myself it would stretch it out my scar tissue and maybe less urine pressure would let whatever was bleeding heal. I went back again in March 2015 still bleeding. He said I needed to self-cath myself to see if that helped. I wasn't sure why sticking something up my penis daily would help with the bleeding rather than aggravate whatever was causing the bleeding. Well, I just bled until April and finally ordered the caths. The first time I stuck one up me it went in the penis pretty easily, my flow had been fine since the surgery, but it got stuck at a place inside me about at the anus. It took a could of tries and pushing but I finally got it into the bladder as immediately urine began flowing through the cath. I was pleased with myself. When I took it out, I put in a slight wider one he want me to try and met the same resistance I had to push through. When I removed this cath and went to the bathroom, BLOOD like just after surgery. Didn't hurt much but just a larger amount and totally different bleeding issue. I repeated this the next day and stopped, and made another appointment with my urologist for May. I told him my experience and that it made no sense to me that self-cath is doing anything postive for my bleeding. Once I stopped the bleeding stopped again...except for that little pencil lead width strip at the end of urination. I became fascinated by this fricken strip of blood that would not stop. I analyzed it in the bowl bef do renI flushed. Is there more? Isnt that a micro piece of red flesh? I went in for another Cystoscopy. I later learned he had diagnosed the neck of my bladder as "Chronic Inflammation Disease".
Again, wasn't expecting cancer - idiot. The procedure was just like the other one except when I awoke I noticed immediately that I had been out for at least an hour. Hmmmm. Didn't think anything about it. Everything went as it did after the first procedure except there was definitely more pain, could tell he went deeper. Figured he really wanted to cauterize that spot on the neck good. Again told my wife about that spot but it didn't look like anything to him. The procedure was on a Monday. He called me Thursday morning, May 30, 2015. I was surprised and happy to know he cared enough to call. I was lying in bed, feeling great, the bleeding had completely stopped. Not even a pencil lead amount. He asked how I was, I told him the pain was much deeper this time, but in the end, "I think you got it! I'm cured, no bleeding!" He said, "Well, about that...Greg, not sure how it was missed the first time, but you have Transitional Cell Carcinoma. That's a real bad cancer. Its a highly aggressive cancer, and its in the muscle." Whaaaaaaa????? I told him I had been coughing, I thought it was just congestion. My doctor said, "Yes, well, maybeeeee......" Ugh. Now its in the lungs!
I'm not going through that conversation in total though. It was crazy. And I hung up feeling like I was about to die within days or months. I had a highly aggressive cancer. It had invaded the muscle of the bladder. Might have spread more. Bladder and prostate out if lucky, if spread, just a matter of time. OMG! My wife heard my half of the conversation and we were devastated to say the least. I went into hyperdrive.
Called my sister Lynn. We cried, talked, discussed, tried to get our heads around this news. Then she went into hyperdrive research mode. Talked to my daughters. That was awful. Telling your babies, One 27 and the other 25, you have a very bad, highly aggressive, invasive cancer (I didn't know what all that meant, that's what the doctor said and I was just relaying the information). My daughter who lives in Texas made plans to visit that very weekend. I hate she needed to come home to be with us under these circumstances - but any chance to spend with my babies is a good time for me! Later that night, Janice and I went to work at our nightclub, Saddle Up Saloon. Life goes on and we had to host Trivia.
I didn't even want to visit my urologist. I was angry. How in the hell could be have missed my cancer in the same spot he biopsied and noticed the "white spot" back in December? He set me up with a CT scan the following Monday and would go over it with me in our already scheduled post procedure follow up appointment the Wednesday after.
On the way to the CT scan I made a decision- with sisters insistence. I have been called a micro manager at every job I've every held. Its what made me certain things got done right, and on time. Well, I let this doctor string me along with bleeding too long without researching myself. No more! I was going to take charge of my treatment. Still in hyperdrive I called for an appointment at UAB in Birmingham; an NCI center my sister had identified. After calling around and working through different people I got to the scheduler for the doctor I wanted. Got an appointment and his aide told me to collect all records. The aide called back while I was at my urologists office for the CT scan and said he spoke to the doctor about me and he would need the results of the CT Scan before he could set an appointment. Damn. I thought I had one just 6 days later but I knew I kind of pushed him to make it. Wasn't surprised when I called back and he said he never actually set it after the doctor said to wait till I had the CT results. The CT scan was simple, no issues. I realized this was going to be an emotional journey.
When I went to get my medical records, the clerk asked why I need them, and I immediately choked and teared up, couldn't speak. I couldn't say the words "Because I got cancer" It came out as me just mouthing it. She could read lips good because she said "For the oncologist?" I shook my head in the affirmative.
My urologist called the next day, said they found no evidence of spread outside my bladder. Lymph nodes looked unremarkable, Pelvic area, Lungs, Kidney all no signs of cancer. I didn't want to see this doctor the next day for consult, I just needed to pick up the report of the CT and the disk. I had a doctor in Birmingham, he has some of the best credentials in the country for my specific cancer. He wouldn't have missed this so many precious months before. If caught early, this cancer is beatable. Later an uphill battle. So I told him to cancel it. Later that day, I regretted canceling that appointment. I had sooooo many questions and I didn't want to wait until the following week and my real appointment, set and solid with Dr. Sunil Sudarshan for Thursday, June 11, 2015. I remembered an episode of "Seinfeld" where George Castanza was fired. He wanted his job back and so he just went back to work like nothing happened, like he was never fired. I decided on that tack. I went to my doctor's appointment and signed in like I never cancelled it. I got in, asked tons of questions...none of which he really had any answers for. I finally asked how the cancer was missed in December. He stated it was just under the surface, deeper than he went for the biopsy.
Well, after research that's all I know. I do believe there is a chance this will kill me; but it won't be immediate and I might just beat it. I have a business, a nightclub I opened a few years ago. I let my staff know what is going on, and let them know it doesn't have to be a secret, but I didn't plan on blasting it everyday on FB. But they could tell the people that have gotten close to my wife and I, who would want to know...but to BE SURE to include that business goes on, nothing changes, I'm sick (feel great now tho) but getting treatment, the party continues and my staff have the business well in hand. We need this business now more than ever.
That's really all I know at the moment. Those are the facts. How I feel personally? I'm not afraid of dying, not yet. I'm afraid of leaving my wife alone. I'm afraid of my daughters missing me, and of my grandkids I have, and the grandkids to come, missing me. I've told my wife many times, if my live ever ended, I would die feeling blessed. And that's how I feel personally. Blessed to have known and loved her, blessed to have shared my life with my wonderful children and grandchildren. Blessed! But I plan on living more so......I will write with updates. I can't promise and uplifting blog, or one with a happy ending, just my reality as it happens.
I have had scar tissue in my penis since I was 6. I was taking a bath after swimming one day, saw pine straws floating on the water, and decided to see how far I could put it up my wahoo. Pretty far it turned out. I had to get scar tissue out once every 10 years after turning 21. When I was about 47 my need to urinate became much more urgent. I mentioned this to my GP during a physical, he gave me a prostate check and I was good. Prescribe me Flonase to see if it helped. It didn't. I just made sure to be closer to a bathroom when the urge hit. Also, figured I was just dehydrated, which I was, and that could have been what it was back then. Who knows?
The urgency to urinate came to a climax in early 2014 and by November it was bleeding. That doesn't seem right. Never bled before. Just a little strip of blood after I urinated. I tend to urinate sitting at home since the scar tissue makes a straight stream from a standing position impossible. But after a pee, I would get a tiny pain sensation and a little stripe of blood in the toilet, about a pencil lead wide, that would stream to the bottom and stay clearly separate from the urine and water. I saw my new GP (we had moved) and he wanted me to be seen by a urologist right away. Took a month to get an appointment so I finally got in to an office visit in early December 2014. The doctor said because of my relatively young age probably the stricture popped a vessel, its what I thought too, definitely wasn't considering cancer. I went in for an ultrasound on my Kidneys, forgot what I thought that was for, but again, not cancer. I was a terribly ill informed early patient.
On December 15, 2014 I had a Cystoscopy and the doctor identified an area of "inflammation" at the neck of my bladder. The procedure last only about 15 minutes. He did a biopsy and delivered 2mm of material to the pathologist. After the procedure he told my wife there was a little white spot but it didn't look like anything, probably a stone caused an irritation. He later told me it came back negative for cancer. Good, I didn't even realize a biopsy was on the table? I found out when I got my records that the sample came back as Fibrin and broken cell fragments. He did remove scar tissue, which he was most concerned about it seems, and I left the hospital with a Foley catheter. I removed the catheter after 3 days without problem. The bleeding was pretty red and dripping, not like before, but more and obviously I had a wound. Urinating was painful peeing over an open wound. But after 3 days most bleeding went away...except for that little pencil lead width strip at the end of my urination.
I went back to the urologist for post procedure follow up on December 29 and told him everything else was fine but I still had that bleeding. He told me maybe if I self catheterize myself it would stretch it out my scar tissue and maybe less urine pressure would let whatever was bleeding heal. I went back again in March 2015 still bleeding. He said I needed to self-cath myself to see if that helped. I wasn't sure why sticking something up my penis daily would help with the bleeding rather than aggravate whatever was causing the bleeding. Well, I just bled until April and finally ordered the caths. The first time I stuck one up me it went in the penis pretty easily, my flow had been fine since the surgery, but it got stuck at a place inside me about at the anus. It took a could of tries and pushing but I finally got it into the bladder as immediately urine began flowing through the cath. I was pleased with myself. When I took it out, I put in a slight wider one he want me to try and met the same resistance I had to push through. When I removed this cath and went to the bathroom, BLOOD like just after surgery. Didn't hurt much but just a larger amount and totally different bleeding issue. I repeated this the next day and stopped, and made another appointment with my urologist for May. I told him my experience and that it made no sense to me that self-cath is doing anything postive for my bleeding. Once I stopped the bleeding stopped again...except for that little pencil lead width strip at the end of urination. I became fascinated by this fricken strip of blood that would not stop. I analyzed it in the bowl bef do renI flushed. Is there more? Isnt that a micro piece of red flesh? I went in for another Cystoscopy. I later learned he had diagnosed the neck of my bladder as "Chronic Inflammation Disease".
Again, wasn't expecting cancer - idiot. The procedure was just like the other one except when I awoke I noticed immediately that I had been out for at least an hour. Hmmmm. Didn't think anything about it. Everything went as it did after the first procedure except there was definitely more pain, could tell he went deeper. Figured he really wanted to cauterize that spot on the neck good. Again told my wife about that spot but it didn't look like anything to him. The procedure was on a Monday. He called me Thursday morning, May 30, 2015. I was surprised and happy to know he cared enough to call. I was lying in bed, feeling great, the bleeding had completely stopped. Not even a pencil lead amount. He asked how I was, I told him the pain was much deeper this time, but in the end, "I think you got it! I'm cured, no bleeding!" He said, "Well, about that...Greg, not sure how it was missed the first time, but you have Transitional Cell Carcinoma. That's a real bad cancer. Its a highly aggressive cancer, and its in the muscle." Whaaaaaaa????? I told him I had been coughing, I thought it was just congestion. My doctor said, "Yes, well, maybeeeee......" Ugh. Now its in the lungs!
I'm not going through that conversation in total though. It was crazy. And I hung up feeling like I was about to die within days or months. I had a highly aggressive cancer. It had invaded the muscle of the bladder. Might have spread more. Bladder and prostate out if lucky, if spread, just a matter of time. OMG! My wife heard my half of the conversation and we were devastated to say the least. I went into hyperdrive.
Called my sister Lynn. We cried, talked, discussed, tried to get our heads around this news. Then she went into hyperdrive research mode. Talked to my daughters. That was awful. Telling your babies, One 27 and the other 25, you have a very bad, highly aggressive, invasive cancer (I didn't know what all that meant, that's what the doctor said and I was just relaying the information). My daughter who lives in Texas made plans to visit that very weekend. I hate she needed to come home to be with us under these circumstances - but any chance to spend with my babies is a good time for me! Later that night, Janice and I went to work at our nightclub, Saddle Up Saloon. Life goes on and we had to host Trivia.
I didn't even want to visit my urologist. I was angry. How in the hell could be have missed my cancer in the same spot he biopsied and noticed the "white spot" back in December? He set me up with a CT scan the following Monday and would go over it with me in our already scheduled post procedure follow up appointment the Wednesday after.
On the way to the CT scan I made a decision- with sisters insistence. I have been called a micro manager at every job I've every held. Its what made me certain things got done right, and on time. Well, I let this doctor string me along with bleeding too long without researching myself. No more! I was going to take charge of my treatment. Still in hyperdrive I called for an appointment at UAB in Birmingham; an NCI center my sister had identified. After calling around and working through different people I got to the scheduler for the doctor I wanted. Got an appointment and his aide told me to collect all records. The aide called back while I was at my urologists office for the CT scan and said he spoke to the doctor about me and he would need the results of the CT Scan before he could set an appointment. Damn. I thought I had one just 6 days later but I knew I kind of pushed him to make it. Wasn't surprised when I called back and he said he never actually set it after the doctor said to wait till I had the CT results. The CT scan was simple, no issues. I realized this was going to be an emotional journey.
When I went to get my medical records, the clerk asked why I need them, and I immediately choked and teared up, couldn't speak. I couldn't say the words "Because I got cancer" It came out as me just mouthing it. She could read lips good because she said "For the oncologist?" I shook my head in the affirmative.
My urologist called the next day, said they found no evidence of spread outside my bladder. Lymph nodes looked unremarkable, Pelvic area, Lungs, Kidney all no signs of cancer. I didn't want to see this doctor the next day for consult, I just needed to pick up the report of the CT and the disk. I had a doctor in Birmingham, he has some of the best credentials in the country for my specific cancer. He wouldn't have missed this so many precious months before. If caught early, this cancer is beatable. Later an uphill battle. So I told him to cancel it. Later that day, I regretted canceling that appointment. I had sooooo many questions and I didn't want to wait until the following week and my real appointment, set and solid with Dr. Sunil Sudarshan for Thursday, June 11, 2015. I remembered an episode of "Seinfeld" where George Castanza was fired. He wanted his job back and so he just went back to work like nothing happened, like he was never fired. I decided on that tack. I went to my doctor's appointment and signed in like I never cancelled it. I got in, asked tons of questions...none of which he really had any answers for. I finally asked how the cancer was missed in December. He stated it was just under the surface, deeper than he went for the biopsy.
Well, after research that's all I know. I do believe there is a chance this will kill me; but it won't be immediate and I might just beat it. I have a business, a nightclub I opened a few years ago. I let my staff know what is going on, and let them know it doesn't have to be a secret, but I didn't plan on blasting it everyday on FB. But they could tell the people that have gotten close to my wife and I, who would want to know...but to BE SURE to include that business goes on, nothing changes, I'm sick (feel great now tho) but getting treatment, the party continues and my staff have the business well in hand. We need this business now more than ever.
That's really all I know at the moment. Those are the facts. How I feel personally? I'm not afraid of dying, not yet. I'm afraid of leaving my wife alone. I'm afraid of my daughters missing me, and of my grandkids I have, and the grandkids to come, missing me. I've told my wife many times, if my live ever ended, I would die feeling blessed. And that's how I feel personally. Blessed to have known and loved her, blessed to have shared my life with my wonderful children and grandchildren. Blessed! But I plan on living more so......I will write with updates. I can't promise and uplifting blog, or one with a happy ending, just my reality as it happens.
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