Todd's Journey

Had a very good conversation this afternoon with Dr. Morash, who is my Urological Oncologist and Primary lead in my Cancer treatment journey.

He believes there are a few possibilities as to why my creatinine levels are going up. One may be the stents, two it may be the antibiotic I am taking called Trimethoprim, or three it may be the immunotherapy itself that is causing the rise.

The simplest thing to do right now is to replace the stents and see if that improves drainage from the kidney to the bladder, ultimately reducing my creatinine levels.

If the stent replacement does not work, we will try removing the Trimethoprim and see if that reduces the creatinine levels.

If that doesn't work, then we may have to look at going back to nephrostomy tubes. Which could end up being a permanent requirement. But that decision is still a little ways down the road.

I am hopeful we won't have to go back to the nephrostomy tubes, as it severely affects my quality of life and makes travel something of the past for me.

We will see after Thursday if the creatinine is coming down.

Will keep you posted.

My immunotherapy scheduled for Friday this week had to be postponed as my creatinine levels are way up again. They believe this may be related to my stents not functionning properly, so they are sending me back into the OR next Thursday (the 8th) to remove and replace the stents. Hopefully this will work to bring down my creatinine levels or we may have no option but to go back to the neph tubes. That would definitely not be my preference as it's a huge impediment to my quality of life, and really restricts what I can and cannot do.

Will keep you posted.

Well, it's been almost 6 months since Jamie and I have had to go to Emergency on a weekend (or day for that matter) but that streak came to a halt on Saturday. I appear to have been having another reaction to my immunotherapy session on Friday. All afternoon Friday, I was feeling cold, fatigued and had abdominal pain. I had no appetite, and was fairly nauseous.

This continued through the night. Saturday morning I woke up with more intense symptoms, plus I had a fever. We went to Emergency shortly after lunch where they put me on strong antibiotics as a precaution, and ran a whole slew of tests. Most of my bloodwork came back fairly normal, and they ruled out septis.

The ER doctors contacted Oncology at the Ottawa General Hospital who reviewed the symptoms and blood work and concluded that I was having a reaction to the last immunotherapy session.

He explained that the immunotherapy can mimik an infection, and even cause a fever. All of my symptoms were signs of an infection, so it was imperative of me to go into ER. Once they had determined it was a reaction, they gave me some steroids to take for a few days, which made me feel much better.

I am pretty much back to normal today, but our streak of staying out of ER on the weekends finally came to an end.

Hey everyone. I am still adjusting to the ureteral stents that are in place, causing the frequent urination issues. I still get fatigued but not as quickly as before. I have had some abdominal pain due to the stents and constipation caused by a few of my medications.

The immunotherapy session I had went well (other than the infusion reaction I got), so the oncologists were happy about that. The added aggravation that I live with now is feeling cold much more often, and brief bouts of shivering.

I have also been having some mental struggles the last few days. The feeling of guilt I have watching people (especially Jamie) have to do so much for me, and because I am still weak (from the chemo - can last up to six months) I cannot help him much. Things we used to do together, he has to now do himself. So I am feeling a real level of guilt.

The Doctors keep reminding me that I am still early in this Journey. I just finished a very successful chemo treatment, a month and a half ago. They infused me with a significant amount of chemo. The effects of the chemo (fatigue, weakness, etc) can carry on for up to six months following the end of chemo. Right now I am still dealing with the effects of the chemo.

They also reminded me that I just started immunotherapy that has it's own set of challenges. And that will take a while for me to get used to.

I know none of this is my fault, and I know that Jamie helps me because he loves me and is in this journey with me, but it doesn't erase the guilt I feel some days. It's been a tough few days.

I am sure it will pass. Like my Doctors say, it takes time.

Here is Chapter 16 of my cancer Jouney.

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!!!

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