Arn’s Story

[Nightingale]

Diagnosis: Muscle Invasive Carcinoma In Situ

Treatment: Radical cystectomy, neo bladder diversion

I first found blood in my urine in 2014.  It only happened once.  When I had my first bladder examination I was told it was bladder cancer. I only had one tiny tumour.  My wife had to use the washroom during my examination that only took 10 minutes.  I was standing in the middle of the waiting area clad only in a hospital gown waiting for her to return.  She had my clothes, shoes and wallet.

When she returned, I said to her, “I wasn’t expecting that!” My Dad died from prostate cancer at age 73 after being clear for 10 years.  I thought that I might have prostate cancer as well.  My wife, Kory said she felt like I’d been given a death sentence.

The recommended treatment was a TURBT and BCG. During 2015-16 I had 4 TURBTs (basically one every three months), and 3 cystoscopies. They all came back showing new cancer tumours. The tumours were never staged for cancer as they were very tiny and slow growing. In fact, the first TURBT result was expected to be all clear.  Even the urologist was surprised being as it had been found very early.

The pathology reports were similar and came back as fragments of grade 2/3 papillary transitional cell carcinoma in-situ. Thankfully no invasive carcinoma identified. The Muscularis propria (muscle layer) was sampled and was negative for malignancy.

I got really worn down healing from one TURBT, then having to undergo another one a short time later.  I had a lot of back pain.  The waiting to heal, for follow-up surgeries, and test results was very stressful but I tried to keep up a positive attitude.  I worked full time during all of this.

After so many negative results, I was not certain how I felt anymore. I was certainly not blindly optimistic.  I kept hoping each TURBT would come back clear.  I said to Kory, “I can’t catch a break”.  I never did get an “all clear”.  During the recovery at home after the TURBTs, the catheter drove me nuts. Being tethered to a tube was my biggest complaint.  I only had to wait 3 days.  I think I’m cautiously optimistic now but I’m still not so sure everything will be okay.  My positive mental attitude has taken a real beating. The reoccurrence of bladder cancer is hard to accept. You never feel safe.  They also found out that I had an aggressive form of prostate cancer during the bladder operation.  The CT scans never showed any signs of prostate cancer. My PSA tests were all normal.  I wasn’t in pain. So, I wonder, is there cancer hiding somewhere else? Where?

I did get a second opinion from a different oncologist/urologist.  I also did 6 weeks of BCG treatment that I managed to tolerate very well.  I didn’t experience any bad side effects, and was hopeful of the treatments preventing the cancer from coming back. It didn’t work. The bladder cancer came back.

I tried to keep a good mental outlook but kept my feelings to myself.  I just wanted to take everything one step at a time.  I told Kory that if I had the radical cystectomy operation “something would go wrong”.  I get premonitions about things at times so she listens to me.  I cancelled one cystoscopy and was crying and shaking at home.  This was not like me at all.  The TURBT was re-scheduled. Nothing went wrong.  I was able to follow the treatments well, and co-operate with my doctors.

By 2016 we realized that the TURBTs and BCG treatments weren’t working.  Chemotherapy would not solve the problem. No clinical trials at this time.

On June 22, 2016 I was referred to a bladder specialist/oncologist surgeon at a major cancer centre.  I was told that the cancer was getting more aggressive and would likely start spreading within 3 months. The surgeon recommended I undergo bladder removal and have a neobladder diversion created.  I would not have to wear a bag. I was optimistic that I could still pee normally.  I asked to have the surgery.  After some guidance from members of the Bladder Cancer Canada website, I felt I had received positive feedback from others who had the same surgery.

I had the Radical cystectomy operation on September 2, 2016.  I was leery about the surgery but went ahead with it.  I died on the operating table 10 minutes into the operation, as my wife and I both found out later.  I told Kory that I felt my body rise up off the table and then come back down.  They performed CPR and got me back quickly and decided to continue with the surgery.  There were no complications.

The surgeon called my wife after the operation and asked, “Did Arnold ever get kicked in the left testicle?”  Not a question we would expect to hear.  Ha hah.  “Uh,no.” Kory told him, “Not as far as I know, except he played soccer a lot when he was younger.”

The surgeon said I had a violent reaction when he touched an area near there.  It’s a mystery. I think my heart stopped at that point.  I had had 2 EKG’s done a week earlier and my heart was fine. I was in surgery for 6 1/2 hours and in recovery for 20 hours.

The healing then began with the neobladder.  Well, this operation, and all the succeeding days and weeks were filled with pain, exhaustion, bowel problems, lots of catheters, and lots to learn about how to get better. Neither one of us fully understood how stressful, complicated, time-consuming and exhausting this would be.  Kory took a month off work to care for me.  I’m still recovering almost 5 months later.  It takes a long time to recover from this surgery.  I’ve been told it involves over 5 body systems. The bowels are the hardest to get working properly again.  One’s patience is stretched to the limit.

It’s now Jan 9, 2017. I had hoped to back to work on Dec. 1, 2016, 3 months after surgery.  There was no way that I could have done that by December.  I was and still am, having problems with day time incontinence.  I have lots of leaking, and am changing pads every 2 hours, coming home within 2 hours of going shopping, etc. and I’m still tired a lot.  There is one suture that hasn’t totally healed yet at the back of the neobladder. This is what is causing the leakage.  My surgeon says it will take 2 months or so for it to heal and close. Then we can expect that the leakage will stop.  I’m going to call him and ask if there is something that can be done like maybe more surgery to speed up the process.

I had to fight with Employment Insurance to get 15 weeks of paid sick insurance.  My EI ends on Feb 1st.  I’ve been spending a lot of money on pads, supplies, special underwear etc. My only income will be the Canada Pension.  I applied for it earlier than 65.  I will be 64 in March and will receive $932.00.  That’s it if I can’t return to work.  I have some RRSP’s but not a lot.  Kory has been saving money to cover our expenses.  You have to think of everything, even financial worries.

While I was off, the company I’ve worked at for 20 years was sold. We were fortunate everybody kept their jobs.  I am the only person on sick leave.  I will have to find out if they will let me go on their long-term disability plan if I can’t return to work. Even if I’m on their plan, it will only last for 1 year, until age 65.

My main goal for 2017 is getting healed and going back to work. I’ve always had a strong mind, and tend to take things as they come. I don’t freak out, even with this whole process.  I am angry though that it’s taking so long to heal, and tired of always waiting for something to happen.  My main outlet used to be bowling, but I haven’t been able to do that for 5 years or more because of my back.  My other outlet is watching TV. I think I’m addicted to the TV. My constant companion is our orange and white tabby cat, Pumpkin.  He’s a real blessing for sure.  He climbs on my lap, likes to cuddle, and is a great de-stressor.  I think he sees me as his personal pillow, playmate, butler, etc.  He always has at least one toe touching me.  This cat is so comical, he makes both of us laugh.

As of today the change in lifestyle has mainly been constantly changing pads, and wearing Depends type underwear.  I’m okay with it to a point but am very tired of feeling “wet”.  I have to plan ahead to be home in 2 hours to do a complete change.  The more active I am, the more it leaks.  It has restricted the length of time we can be out to do shopping etc.  I am able to drive, go to the local casino, the bank, all normal stuff.  Once the leakage is under control things will be much better.

I handle the Depends and pads routine very well. Kory was a little concerned that I would not want any part of it.  I think I have just accepted that this is the way it is, and I don’t let it get me down.  I try to keep myself and the bathroom clean, and get rid of the used pads. I now start dinner for us. Kory always thanks me for the things I’ve done, and appreciates everything especially now that she has returned to work.

I feel negative about this experience, but hopeful at times.  I’m not sure what the future holds.  I will see my surgeon in 2 days (Jan 11, 2017) for another cystoscopy to see why the bladder is still leaking.  We trust him totally.  Maybe I will need some minor surgery to repair the leaking suture?  The surgeon will tell me what the options are.  We’re both hopeful that the answer will be found and recovery will be complete!  Kory will be with me.

[Author]

Posts