Todd's Journey

Had a quick appointment today with my family doctor. She is going to start to get me off the insulin since my chemo is now done, and I can back to my regular diabetes medication again. We will slowly transition off the insulin over the next few months.

The new stents seem to be working well, but my bladder is still not used to having so much urine in it, so it's causing me to go to the bathroom whenever it gets a small amount of urine in it. The only fix for this is time right now. My bladder has to get used to having urine in it, and increasing the volume before it makes me want to go to the washroom.

The stinging and burning during urination is better now, but stilll a bit bothersome. This will also take a bit of time to heal, and is normal following a cystoscopy and stent insertions.

My next big test will be tomorrow when I start my immunotherapy. Hopefully I will not have any major side effects and will have good success with the medication.

I will keep you all posted on my immunotherapy sessions.

Procedure went well this morning. The nephrostomy tubes were removed, and stents were inserted. They seem to be working fine so far, and I seem to be slowly getting back to normal urination.

I do have a bit of pain right now but that is irritation caused by the catheter that was temporarily in place.

The pain should get better over the next few days.

Hi Everyone,

Happy New Year!!

Tomorrow I will be going in for a cystoscopy followed by a potential stent insertion. The whole experience should take about an hour, and I will be out for the procedure.

Since completing my chemotherapy, my urological oncologist has not been able to adequately look at the inside of my bladder. Tomorrow he will do so and determine how well my ureters are draining from my kidney to the bladder. If they look relatively good, he may be able to remove the neph tube, and allow the kidney to drain into the bladder on it's own, or he may insert a stent from the kidney to the bladder along my ureter to assist in the draining, and then remove the neph tube.

The default option for tomorrow will be to insert stents into both my kidneys to the bladder, and to remove the neph tubes.

The stents might then come out in a few months if I can't tolerate them, or the draining continues to improve.

I will post a message to you all on Wednesday to let you know how it all went.

Hello All,

As you probably know, I am to undergo another procedure on January 2nd to determine if my neph tubes can be removed.

Speaking with Dr. Morash today (my urological oncologist) the plan is to enter the bladder to take a good look of the lay of the land. Previously the cancer tumors in my bladder were blocking (or partially blocking) the ureters which did not allow the urine from my kidney to drain into my bladder.

The three previous resections of my bladder attempted to remove as much of the tumor as possible, but they were not able to get at any tumor that was in my ureter. In fact, during those surgeries they were not able to even see the entrance of the ureter from within my bladder.

The hope now is that the chemotherapy, which was highly successful at reducing the tumor and node sizes in my lungs and elsewhere, will have reduced the size of any potential tumor that was in, or around, the ureter entry into the bladder.

The plan is to see if they can identify (see) the entrances to my left and right ureter, and assess if the flow of urine from my kidney is entering my bladder. They can do this using dye to watch the flow.

If the flow appears good, they may put in some stents (temporarily) to ensure the flow remains ok, which would allow me to remove the nephrostomy tubes.

It is also possible that the flow would not be great, in which case the stent would help, but if not enough, the neph tube would have to remain in place.

The goal of the procedure on Tuesday is to try and remove the neph tubes (or at least one of them) to allow me a bit more freedom and convenience in terms of quality of life. They may be able to do this with stents, or if the flow is very good, they may not have to place stents at all.

We won't know what the outcome of my neph tubes are until after the procedure on Tuesday. If I am lucky, I will wake up from surgery with no tubes, or at least one less tube. I will update everyone on Wednesday or Thursday next week.

Wish me luck!!!

First the bad news - in my stupidity, and feeling a bit better, I tried going out to drive my lawn tractor with the snow blower on it on Tuesday to clear the snow from the lane. I didn't really think much about it being too labour intensive, but apparently just the lifting of my blower, and the pushing of the pedals, and maybe the position I sat in for an hour, was enough to pull one of abdominal muscles.

I have to try and remember that my muscles have not been actively used for almost 7 months now, so the easiest of tasks may be a bit of a strain for them. Anyhow, I will just have to rest more and let the abdominal muscle heal up again.

As for my next steps in my cancer treatment, I will begin immunotherapy the first week of January. Bladder cancer cells have a specific protein marker on them that hides the fact they are cancer cells. This marker fools my own immune system into thinking the cancer cells are normal cells. What the immunotherapy will do is remove that specific protein marker on the cancer cells allowing my immune system to hopefully start attacking those cells, therefore keeping the cancer at bay (stop it from growing or spreading). Immunotherapy, if successful, can continue to work for a very long time.

The immunotherapy will be administered by intraveneous drip every two weeks for as long as the immunotherapy keeps working. After several years, if the immunotherapy is still working, they may take me off of it, and simply follow up with scans every so often.

The immunotherapy is likely to cause me fatigue again, but not nearly as significant as the chemotherapy did. It is not expected to make me nauseaus or sick to my stomach.

I will have to have CT scans done every three months now to ensure the cancer isn't returning or growing again.

If, for some reason, the immunotherapy does not work out, or I don't tolerate the immunotherapy drug very well, there are other medication options they can try.

It definetly is no fun knowing I have to go every two weeks for treatment for a long time to come, but I need to do it to keep my cancer under control, and to allow me to live a nice, as close to normal, life again.

Hi Everyone.

I am scheduled for a cystoscopy on January 2nd under anesthesia in order for my urological oncologist, Dr. Morash to take a good look at the inside of my bladder.

He is going to assess whether or not I need to keep the nephrostomy tubes, or if ureteral stents could be put in from below to help the flow of fluid from my kidneys to my bladder.

It is possible that the chemo shrunk the tumors that were originally blocking the flow into my bladder that I will no longer need the nephrostomy tubes or a stent.

All will be figured out on January 2nd. Either I will come home with no neph tubes, or will have to keep wearing them for a while.

Keep your fingers crossed.

Here is the latest update on my cancer journey. I apologize for being so emotional.

Hi Everyone,

My urological oncologist, Dr. Morash, is booking me in for a day proocedure on January 2nd, where he is going to look at the inside of my bladder and possibly place stents in my ureters in order to get rid of the nephrostomy tubes and bags.

This would be so nice for me, as the neph tubes are truly very restrictive and inconvenient. Having the tubes removed will allow me to return to much more normal activity and give me great mobility in my daily life.

So, all in all it looks I may be started off the new year NEPH TUBE FREE!!!! :o)