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.