Ric’s Story

[Nightingale]

My urologist never actually gave me a stage but effectively it was stage 3 as my tumor had entered the muscle wall.  It had not gone outside the bladder.  The pathology report indicated “minimally invasive papillary urothelial carcinoma, high-grade, positive for carcinoma in situ”.  The tumor was 3.2 x 1.8 x 1.2 cm. I have not had any recurrences at this point.

My story started with a routine annual physical.  There was a microscopic amount of blood in my urine sample, hematuria.  Because I was 57 at the time my family doctor sent me for a KUB ultrasound, kidneys, ureters, and bladder.  A mass was found on my bladder so I was referred immediately to an urologist at the Southern Alberta Institute of Urology.  I had a cystoscopy exam done on a Monday which confirmed the tumor.  On Friday the same week my urologist et al. performed a TURBT surgery.  I was supposed to be kept overnight but I had issues with blood clots and the catheter so was actually admitted and spent the weekend in the urology department.  I was more or less OK after a few more days at home.

I waited for what seemed like an eternity, 4 weeks, to get the pathology results.  The result confirmed the tumor and my urologist recommended that I start chemotherapy to be followed with a radical cystectomy.  I was referred to the Tom Baker Cancer Centre.  I started a 3 month protocol of Cisplatin and Gemcitabine followed 3 weeks later with surgery.

Unfortunately, my wife and I got off to a bad start at the cancer clinic.  The oncologist told us that he thought the cancer may be outside the bladder and in the fat surrounding the bladder.  We asked what that meant and he said if it is in the fat that there is no cure.  This sent us on an emotional roller coaster. We left the clinic in tears.  However, my urologist took my case to the Tumor Board, a group of urologists/surgeons, radiologists and oncologists, and as a group of experts they reviewed and analyzed all the data, pathology and CT scan.  From this they determined that the cancer had not left the bladder and was not in the fat.  The recommendation of the chemo followed by the surgery was confirmed as the best path to follow for the highest survival rate.  After a very tough week we were back on a positive mental outlook.

I started the chemo the first week of August in 2015.  The procedure was Cisplatin and Gemcitabine together in week 1, Gem on its own in week 2 and then nothing in week 3, then start over, following this routine for four rounds or 3 months.  I was OK for round 1 but after that I was very ill.  I took all kinds of anti-nausea medications but I was still quite ill.  At one point between the second and third round I was so dehydrated that I ended up being taken to Emergency by ambulance.  After pumping fluids in me they sent me home telling me that with my compromised immune system, I was actually safer at home than in the hospital.  By this point in time I was not sleeping and purging most of what I was eating.  I was physically and emotionally drained and fell into a situation induced depression.  I was referred to and the Tom Baker Department of Psychosocial Oncology and started seeing one of the psychologists to deal with the depression.  My family doctor happened to have training in psychology and started me on a prescription for some antidepressants.  They did seem to help.  In fact, I am still taking a mild antidepressant to this day (Cipralex).  I would have weaned off the Cipralex by now but my family doctor has encouraged me to stay on it until my current issues have all been resolved.

As I was so sick with my response to the chemo, I ended up missing one session of the Gem. I was just too sick to make it to the cancer clinic.  I finished the chemo October 31, 2015 and was in for the cystectomy the third week of November.  Emotionally I was not in a good place.  I was scared of dying.  I did not want to leave my son who was in grade 7 at the time, and my wife.  My sister came up from Lethbridge to stay with us. I really did not want to be alone during the day.  She was here for probably half of my chemo and until just before I went in for the surgery.  I wouldn’t have wanted to go through this without her being around.  Of course, my wife was very supportive throughout all of this but she had to work and keep things as normal as we could for my son.  He was active in hockey and I was just too sick to take him to games and practices.  I look back now and I see that in my mental state at the time I really just assumed that my son and my wife were doing fine and holding up through all this.  I hate to admit it but I now see that I was very centered around my depression.  It wasn’t until May of 2016 that I was talking to my son and he confessed that seeing me so sick was very tough on him.  He told me that it bothered him to see me sick in bed when he left for school each morning.  My wife and I had hired a tutor to help him with math and science but he is doing far better this year without a tutor than he did when my illness was weighing him down so much.  It shows very clearly that this was/is a family affair.  It affects us all and family members need help to cope as well.  We are lucky that there are programs that children and spouses can attend to help them cope.  We didn’t use any but looking back I see that I should have had my son and wife see the Tom Baker psychologists as well as me.  After my surgery I also did see a private psychologist for a few sessions to help me rationalize what I had been through.

My wife encouraged me to keep a diary.  I did that but in my lowest time emotionally I found it difficult to put thoughts on paper.  She had me trying to write good things every day.  Looking back I see the positives of this as therapy.  I had also tried mindfulness meditation during some high stress times at work a few years earlier so I also tried this during my chemo and surgery recovery.  I took a 9 week mindfulness course through the Tom Baker clinic in the spring of 2016 as well.

Fear was the single most challenging emotion during this whole ordeal.  Fear of many things.  Leaving my wife and son behind, leaving my brother and sister, other family members and friends and financial worries were at the top of my list.  At first my fears took a grip of me and really made things worse.  Thankfully I had the ability to write down my fears and address them to the point where I could take care of them.  I could see that the financial fear was greatest for me.  Once I could get past everything I could see that my wife and son would survive and that allowed me to settle back down with positive thoughts as opposed to falling into this dark place every day and night.  I could not have done this without my wife as she and I talked about the “what ifs” and how we would deal with them.  My sister helped me tremendously, but my wife was my rock through all this, and continues to be.   Nothing else really matters to me but to be here for my wife and son.  They mean everything to me and always will.

As I mentioned above, I still have issues that I am dealing with.  My right ureter had a blockage from the surgery.  With my regular blood work we noticed that my creatinine level was going up indicating a kidney issue.  I had a nephrostomy tube inserted into my right kidney for 5 months in 2016, allowing the kidney to drain and thus treating the hydro nephrosis.  In October 2016 I had minor surgery to biopsy the blockage and insert a stent.  The biopsy indicated benign scar tissue, which was great news.  However, the stent was removed in January 2017 and at the end of February the nephrosis was visible again on ultrasound.  I have had several tests done, will have a CT on Monday April 10th and then sit down with the surgeons again on Wednesday April 12th.  The options likely range from trying a stent again or open surgery to reattach the ureter.  As my urologist told me, he believes this is just a plumbing issue that we can deal with.  As long as the cancer stays away, I’m good with that.

I am in a much better place today but it is natural to still have worries in the back of my mind.  The trick is to not think about things that could happen and just deal with realities if and when they happen.

Where am I today?

Other than the plumbing issue I am good.  I try to stay active, walking the dog helps.  Life is pretty normal, the new normal they say.

There are lifestyle changes but in the big scheme they are minor.  I chose to have an external urostomy bag and stoma rather that go with a neo bladder.  This means that I have to hook up to a night bag for sleeping and of course I have to change my appliance twice a week.  What I have found is that showering every day is an issue as it tends to create problems with my barrier and I can have leaking issues.  I have tried the saran wrap and waterproof tape trick but at this age I don’t have to be as active so going a few days without a shower has not been an issue so far.  Having said that, I have chosen to not return to work which means that I can get away with that.  If I was dressing up for work I would have to find a way to make showering everyday possible. Others do it and I suppose I could too.  Clothing is a little different as I do not wear tuck in shirts anymore.  This way I do not have to tuck my pouch under my pants and belt.  Again, if dressing up for work or otherwise there are ways to make this possible.  I purchased a stoma guard which a piece of plastic and belt that has a hump in it.  When placed over the stoma it allows the pouch to fill even when you have a belt around your waist.  People use these to dress up in suits etc.  As I said, I don’t use mine much as I don’t dress up but I have it if I need it.  Lastly I’d have to say that as I have allowed my situation to restrict my physical workouts, I find that my belly has become bigger, which I am not happy about.  When I have my plumbing issues taken care of I will talk to my doctors and a physio to see what core muscle exercises I can do without damaging my stoma.

As long as I am on the right side of the grass I can handle anything.

Words of Wisdom

Keep your thoughts on the positives in your life and don’t let the ‘what-ifs’ control your mind.  It is easier said than done but staying positive and clear headed is the way to go.  What seems like an eternity at the time is just a blink of the eye after the fact.  We are lucky we live in a world and specifically a country and a city where we have the medical science and technology to treat so many things.  I’d have to say that at all time when my issues were acute, my treatments and appointments have been swift.  The nurses, technicians and doctors have all been incredible.  I have learned that the system is so pressured and overcrowded that when things are not quite as acute, there are delays in getting things done but overall I count myself lucky.

The only other thing I can think of for newly diagnosed would be the decision to have an external bag or a neo bladder.  My decision was for the external bag as the potential issues after surgery are far less.  I understand that some people have had the neo bladder and able to work through the issues but I think I made the right decision for me.  It is a big decision either way and one must put lots of thought into it, both have positive and negatives.  I do not know anyone personally that has had the neo bladder.

[Edwin Castle]

Ric.   Thank you for sharing your story. As you said the love and support of family is so important.  A small bit of info. about antidepressants, they do tend to put on weight and give you a bit of a belly. I have been on them for years and cannot get rid of mine. Your story is a testament to how cancer treatment  saves lives. I am personally  not sure I could go through the cemo. treatments. I guess you never know until you are faced with it yourself.  You really sent my mind spinning, but in a good way. Again thanks for sharing. Ted.

[Judith]

Ric…. Thank you so much for sharing your story!
My husband has was recently diagnosed with T2 MIBC. He is 68 years old. Quit smoking in 1992.
Like yourself, he has had a nephrostomy tube inserted into his right kidney (bladder was pressing on the kidney, reducing its function, and his urologist wants kidney function as good as possible for chemo).

He started chemo this past week (cisplatin and gemcitabine). Similar to yourself, the plan is 4 cycles (2 weeks on, 1 week off). Then RC surgery.

Thank you for talking about your fears. I am so terrified that he will die :(.  We both take hope from his Urologist, who said (after reviewing his CT to confirm no spread outside the bladder), “You are curable!”. Then his Radiation Oncologist put fear back on the table by saying “50% survival rate, with a 5-10% increase with chemo “.
So it’s been (and will continue to be) a terrifying roller-coaster for both of us. But it is always good to hear of success stories like yourself… so thank you again.

 

[RAC]

Ric here with an update to my story.  It is currently February, 2021.  In December 2020 I celebrated my 5 years clear anniversary.  Back in 2015 when my bladder cancer journey began, my family doctor told me my job was just to breathe and the medical practitioners would do their very best for me.  I’m very happy to report that I’m still breathing and I send my biggest and heartiest thank you to all the wonderful medical practitioners that helped me along the way!!  I continue to have issues with my right kidney, essentially it isn’t contributing much but all my CT scans have been clear.  Living with one kidney is not an issue.  I am active walking the dog each day with regular hikes in the mountains even on warmer days in winter.  I no longer downhill ski but this winter my wife and I purchased cross country skis and snowshoes which has added to our winter activities.  I have also put my skates on for the first time in 5 years, no hockey though.  My wife, son and I continue to travel overseas and other than making sure I take enough ostomy supplies with me, I haven’t had any major issues.  In 2019 I did have reconstructive abdominal surgery to repair a large hernia that had developed caused by my stomach muscle not properly healing after the radical cystectomy surgery.  Recovery was quick and relatively easy.  Overall, life is great.  Hopefully the vaccines will soon allow the world to recover from the destruction of Covid 19.  Take care everyone, stay safe.

[Nightingale]

Hi Ric,

Thanks for the update!  Nice to hear that you have adjusted to the new normal and put your skates on for the first time in 5 years!  Fabulous!  Like you I am praying that we get past this Pandemic so we can do more traveling.  We’ve already postponed our river cruise once…would hate to do so again.

My Best,

[Author]

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