2nd Chemo Treatment (Day 8)

Just a quick update:

My chemo regime is Cisplatin/Gemcitabine first week, just the Gem second week, nothing the third week, and start all over the next week and repeat this cycle 4 times.  There is only one day per week when I get the actual chemo infusion.  Last week the Cisplatin, the tough one,  kicked my tail for 5 days.  The medication I took absolutely helped with the nausea,  but you gotta be diligent and take it whether you feel nauseous or not - because if you don't, you will!  

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.  

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.

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.

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.

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.

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.