Progression from start to current 4/2017-12/16/2017

So it began in April, 2017                                                              Back to In the Beginning

Suddenly one day I was urinating blood.  Not just blood but clots too.  Some the size of leeches.  What a weird feeling that is.  I had to strain to get them out and they with the added velocity, would SPLAT against the urinal. Once or twice I left them to freak out the next guy.

 I went to Southwest Medical in the Centennial Hills area of Las Vegas. They took a sample and prescribed Cipro, saying it was probably a UTI.  Two weeks on Cipro and the hematuria stops.  Nothing more until October.

October 6th, the hematuria comes back.  I call my daughter to see if she can prescribe more Cipro, but she convinces me to go back to SW Med. I do and go through the same routine.  After two weeks, it hadn't cleared up. Lisa and Rabbi suggested I go to a real doctor, as the ones at urgent care places are the bottom of the heap.  Rabbi gave me a recommendation to an Internal Medicine specialist in the building where his practice is, Dr. Nouhad Damaj.

I give their office a call and it is about a month before I could see the doc or one week for a Physician's Assistant.  I took the latter and we got an appointment on our wedding anniversary on the 17th.  The hematuria came and went, sometimes just came on for a couple hours a day, then normal. When I finally got to see the PA, Kelly, we ran through the usual list of history questions and urine sample.  Dr. Damaj comes in after and lets us know that we will get started on some tests.

The next day I went to SDMI for a chest Xray and back to the doctor's office for a blood draw.  It took until the 27th to get an appointment for an ultrasound from SDMI. Another appointment with the doc to review the results and it showed that my right kidney was blocked from draining into the bladder and showed that it was swollen due to the trapped urine - hyrdonephrosis. 

[Kidney on the right shows the fluid build up, but mine wasn't due to a stone.]

Nothing else was noticed out of the ordinary in the bladder.  The ultrasound report was cryptic and the bladder section just said to refer to the kidney section.  It appeared that the kidney had the tumor, and I figured, meh, so what...got two of them. 

The radiologist recommended a CT scan.

I also had an appointment with Dr. Bipin Saud, a gastroenterologist in Dr. Damaj's practice to schedule a colonoscopy.  That was a quick visit, since I had no complaints and it was strictly preventive.

Back to SDMI for the CT Scan on Nov 1st. They gave me a CD with the scan results.  So of course I had to go home and load it onto my PC.  Easier said than done to navigate the tool and see anything meaningful.  At least there was the radiologist's report that came with it. This time they said the right kidney was atrophied and there was a 3cm mass where in the bladder where the ureter meets it in similar terms to the ultrasound. So we still think it's the kidney. Dr. Damaj refers me to a urologist who was on my plan.  I didn't like his reviews and found someone I liked and told him to refer me to that doctor.  It turned out to be a larger practice (Urology Specialists of Nevada).

They had another doctor assigned besides the one I picked, who specifically handles urinary tract cancers, Dr. Mulugeta Kassahun.

I was able to get an appointment with Dr. Kassahun for Nov 6th.  He was a former colonel in the Army and served two tours in Iraq.  No nonsense, straight talk, no beating around the bush.  A bit dismissive as far as questions go, but all I care is that he is technically competent.  He could probably take care of that tumor with a bottle of bourbon, a bayonet and a bootlace.  One look at the CT and he says we're going for surgery on the 18th to do a biopsy of the bladder.  He said it was probably cancer.  I had to go back on Nov 10th to Damaj for more blood tests and other checks to make sure I was fit for surgery.

Given that it appeared that it was going to be a while before I actually started treatment, Mikki found Essiac online and I started taking 3 capsules twice a day to see if it did anything. We used to have the book Gary Glum wrote about Rene Caisse and her herbal mixture of sheep sorrel, burdock room, turkey rhubarb and slippery elm bark. We had used it on my father in law and it seemed to actually work. 

We contemplated buying weed for the pain...yay it's legal here, but never got around to it.  May still, and more on that later.  Problem with having a medical marijuana card is that the County Sheriff checks those rolls and denies CCW and gun purchases to anyone with a card.  So it would have to be a recreational purchase, and I can't walk around work stoned out of my mind.

The urologist's scheduler called on the 17th said I was scheduled for 10am on Nov 18, first day of my two week vacation.  Woohoo.  The morning of the 18th, they called again and pushed us back to 2pm.  So that gave me time to drop the mutts off at the groomer and pick up our friend Lucille at the airport who was coming to town for a memorial service. 

Finally we go to Summerlin Hospital and fortunately, I went to the inpatient registration area, because the clerk said no one was at the outpatient area anyway.  She got us squared away, I paid a fee and she sent us to the outpatient waiting room.  We barely sat down and they called me in.  I gave the nurse my CD of the CT scan.  That was the last time I saw that.  Got into a gown and kicked back on a bed for the next 5 or so hours. 

Mikki, Lucille and Andrew hung around for a while, but finally decided to go for lunch.  Lisa came by right before Dr Kassahun showed up. I told him about the pain I was having for the last two weeks and that the hematuria had only occurred twice the day before and not for a couple days prior to that. The constant pain started in the lower back, went down through my right testicle and into the upper right leg to the knee. 

We talked about the cystoscopy procedure and he said he had one more patient ahead of me.  Earlier I had joked with Lisa that I was probably waiting for him to get off the greens.  After he left, she said, he was definitely not on the greens.  Pretty sure he was carving and probing bodies all day.

Finally they came and got me and wheeled me all over the place to the OR.  Transferred to the operating table, injected with Propophyl and lights out.  Woke up with a catheter still in and back in my room.  So much for being an outpatient.  Have no idea how long it took, but I was pretty uncomfortable with that catheter that appeared to be at least 5mm in diameter.  Dr. Kassahun comes by and says he resected the mass, but couldn't find the ureter opening in the bladder due to the placement of the tumor.  After this I never had any further hematuria.  The doc informs me that there will be an additional surgery the next day by a radiologist to put a drain tube into the right kidney's hilum area (right above the ureter).

So no food since last night until tomorrow and well after the surgery.  Stayed up late watching a movie on my phone until I was dead enough to crash.

The next morning, Rabbi and Ellie came to visit after breakfast.  Rabbi transposed the room number and ended up in a deserted wing.  He asked Ellie, "How are we going to find Pop pop?"  Ellie belts out, "POP POP, where are you?"  Would have given anything to hear her.  Everyone she saw, she told them that Pop pop was sick.  While they are visiting, they take me down to Radiology.  Rabbi and Ellie hang out as long as Ellie can stand, but they leave right before I'm wheeled in to what looks like the room that the aliens put the probes in you.  Incredible array of technology.  Transferred to the CT Scan table that they would be doing the surgery on and watching their progress through the CT.

Don't even remember where I woke up, but now I had a tube coming out of my side to a bag strapped to my leg.  They got a good quantity of old urine out of that kidney.  After that it slowed to less than 100cc per day.  I am pretty sure it was early afternoon when I got back to my room and by now famished.  The nurse wrote the cafeteria's number on the white board and I called to see if I could get something.  They whipped up a Chicken Cordon Bleu that was probably the best hospital food I'd ever tasted.  I had hoped I would get discharged that night, but no such luck.  Got up and hobbled around with my IV pole, still with the same pain.

Tomorrow comes with all the routine of BP, pulse and temperature checks and long waits to see when I was getting out.  Later in the afternoon, the hospitalist shows up and asks a bunch of lame questions and prescribes Oxy, a stool softener and an antibiotic.  I only filled the first and last and really mostly only took the antibiotic.  With all the noise about Oxy, I was just going to take it if it was really bad.  Turned out it wasn't any more effective than two 500mg of Tylenol, so I took those instead.  Finally it is time to go and the nurse hands over all my documentation and I ask for my CT scan CD.  Good luck.  No one knew where it went.  The big finale is taking the catheter out. 

Whatever pain I was already feeling was nothing compared to having this thing ripped out like a lawnmower starting cord.

Mikki and Andrew came back in, and I finally get into street clothes, and I get wheeled out to the car for the trip home.  Peeing had to be done sitting down, because that catheter tore things up enough that I never knew which direction or which two directions it was going to go.

A few days later we go back to Kassahun's office and he confirms that it is Stage II bladder cancer, meaning it had gotten into the muscle of the bladder.  He picks up the phone and calls Comprehensive Cancer Center of Nevada (CCCN), Dr. Nicholas Vogelzang.  He describes me as a young 66 year old male... which I guess means I still have some hair and don't look as pathetic as the other people in the waiting room.  He really put some immediacy into his referral and Dr. Vogelzang saw me after hours on Dec 6th.

While I'm waiting for the 6th to come around, I made an appointment for Dec 22 with a Traditional Chinese Medicine Doctor, Dr. Vincent Link. I ended up cancelling it as acupuncture is contraindicated for chemo patients and I didn't want to mix herbs and chemo.  I also had the colonoscopy on the 30th and at least that was clear.  Never knew the inside of the intestine was pink.  The bowel cleanse drink tastes awful and gets atomic in about 10 minutes and for every 10 minutes over the course of an hour.  By the time I was done, I'd lost 15 pounds.

Dr. Vogelzang wasn't wasting any time, but wanted to wait to start chemo until I got a Pet Scan.  Then he tells me that another of his patients had bladder cancer and my insurance company turned them down for the Pet Scan.  He said if we didn't get it he would treat me optimistically and just focus on the bladder cancer.  Not what I wanted to hear, since it felt like he'd be shooting in the dark. He gives me a 20% chance of 5 yr survival. Fuck that noise. That's based on results from at least 5 years back and sure isn't me.

The next day I went for a renal scan, as Dr. Kassahun wanted to see if anything was flowing through the right kidney.  I thought that was overkill, since I knew where it was going.  So for this test you drink some stuff that shows up on the CT image and you can see the kidney fill up and it go down the ureter and into the bladder.  The left side was all white with evidence of good flow and the right side was like the dark side of the moon.

That week we had our benefits selection at work and I asked the HR rep if she could intervene if I was turned down.  When our good friend Lucille heard that getting rejected was a possibility, her father said, "Fuck the insurance company, put it on my credit card!"  Fortunately three days before my chemo was to start I got the approval and the following day the Pet Scan.

On the 11th I went back to CCCN to have my blood drawn for a pre-treatment test.  That was quick and the clinic is halfway between home and work, so very convenient.  I had a laundry list of questions, but there was no one to ask and the scheduler just said I could ask them on the day of treatment.

Mikki had found a company called Arctic Cold Caps, where you put their gel caps in dry ice and then keep swapping caps onto your head before, throughout and after the chemo treatment.  We thought this would be good just from an aesthetic standpoint and to hide the fact that I had cancer from the people at work.  Once her employer at a pretty sleazy company fired her when he thought she had cancer and wouldn't be able to keep up the pace.  She didn't and beat them in the unemployment hearing.  So we went and bought the Arctic Cold Caps thinking they would work.

The next day, Dec 12th, I had an appointment with Dr. Kassahun, who said regardless of the tiny amount of urine collecting in the bag everyday, he recommends removing the kidney, bladder and ureter after chemo is done.

December 13th was the Pet Scan back at SDMI, no food, drink or exercise for 12 hours before. Took less time than the renal scan.

Finally the big day, Dec 15, and Mikki, Andrew and I go to CCCN for the first chemo treatment.  Mikki and I watch a video with another new patient and talk to the nurses for orientation. Later, we get to see the doctor. First thing Dr. Vogelzang says is what's in the cooler, "Are we having a tailgate party?"  We told him about the caps and he said they won't work anyway due to the strength of the drugs he is prescribing.  Also due to the fact that I only have one functioning kidney, he doesn't want to administer as much chemo as he wants.  From the Pet Scan report he found out that it was actually Stage IV bladder cancer, because the bladder cancer cells had gotten into the bone.  That is what was causing the pain.  He actually wasn't that optimistic that I will beat the odds of making it another 5 years. 

But there's still that 20% and that's all I need...and remember...I'm a YOUNG 66. 

We meet with his finance manager, Lu, who lets us know that the one drug's 20% patient portion  is $1000/shot...one shot every four weeks.   So we settle up and soon they bring me back to get settled in to the chemo chair.  They put in a pic line to my right hand and pushed three of the drugs and used the IV drip for the others.  By now it was 11:30.  Once everything was done, I told Mikki and Andrew they didn't have to stick around, as there was nothing they could do.  We had brought a big duffel with a airline neck pillow, water bottle, fleece blanket, book, charger and cord, and I don't know what else, except that since I had three layers of clothes on, I didn't need the blanket.  Plus it turned out not to be cold in the room.  I finally wrap up about 3:30pm having chatted with one patient's son for a bit, did a little reading, a little sleeping, just passing the time.

I felt fine when it was done and texted my family to come get me.  Unfortunately, they were at Lisa's house on the west side of town and it was approaching rush hour.  Eventually, Lisa picks me up as Mikki and Andrew were in the middle of eating lunch when I texted.  We stop at Café Rio for take out, and don't get back to her house until a bit after 6.

The next day I felt pretty well. I even went for a bike ride to the grocery store about 3 miles round trip.  The pain was subsiding but the leg was still weak. Such that I would have to pick up the leg with my hand to get up a curb.  By Sunday that was no longer the case, but I was groggy and tired all day.  Monday back to work...still foggy in the head, but made it through the day and got on the stationary bike for 15 minutes.  By Thursday, December 21st, no pain and even the weakness has diminished by 35% or so.  Still a bit of a limp.

Well, that brings you up to the current.  Another treatment coming on Dec 29 and two more in January.

Next: Just couldn't get through the week without a Doctor's visit