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.

One of the issues I have experienced on my cancer journey has not received a lot of attention on this blog, but with some upcoming optical appointments, I thought I give you an update on it.

Back in July of last year, much prior to starting cancer treatment, I suffered an optical nerve damage event due to inflammation of the nerve probably caused by the cancer. It caused the peripheral vision in my left eye to be impaired by a darker, cloudy area to the lower left of my eye.

The damage to the optical nerve is likely permanent, as optical nerve repair is not possible.

I have an upcoming optical appointment with an optical nerve damage specialist at the Ottawa Eye Institute. Not sure if they can do anything to repair it, or at least improve my vision from what it is today.

My vision issue is likely to be collateral damage from the cancer. And all part of the battle. It is what it is. I keep my fingers crossed that they can do anything to help my left eye vision.

Will keep you posted.

As you know, I ended up in Emergency over the weekend, feeling very weak, not eating, dehydrated, abdominal pain and not well overall. They thought I might be septic, so ran a bunch of tests on me, while giving me antibiotics just in case I had an infection.

The on-call Oncologist felt that the symptoms I had were more indicative of a reaction to the immunotherapy session. After some steroids I felt much better and was sent home.

While I was at the hospital they did a blood culture and urine culture to check for potential infections. Both results came back today showing I did have infections in both my blood and my urine. But the strain of infections were different. The infection in my blood is a more commonly known Staph infection that some of us naturally carry and is known to be a contaminate often in blood cultures. The urine infection is often related to a urinary tract infection, although I do not have many other symptoms of a UTI.

Nonetheless, the Doctors are now looking at what antibiotics they can put me on to fight these infections, and trying to determine if the infections are coincidence or a result of the immunotherapy (which can temporarily cause my immune system to ignore certain infections as it fights other diseases).

All in all I feel ok, and not sick at all. Will keep you posted as to what progress I make on the infection front.

For those of you who are asking me about how my bladder training is going, I am currently up to almost 2 and a half hours between urges to urinate.

I continue to try and allow more urine to sit in my bladder before going to the washroom so that my bladder will learn to expand a bit and understand it can hold more urine than it thinks.

The ends of the ureteral stents in my bladder do not seem to be irritating me as much, and there is now very little pain associated with urination.

So all in all, much improvement on that front. I will keep at the bladder training for a while still.

I have pretty much recovered from my immunotherapy reaction over the weekend. The small dose steroids I was given seemed to help a lot. I have my appetite back, am holding down my food, no fever, and no chills or rigors.

We'll have to see what, if anything, the Oncologist will do with my next immuno session. They may just add the small dose steroids to help prevent recurrence of the reaction.

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.