Todd's Journey

We have been trying different approaches to my pain management in terms of my leg and sciatica. As mentioned, Dr. Morash is going to send me for an MRI just to see if there is anything specific around my piriformis muscle or with my lower back that may be impeding upon my sciatica nerve.

The only real way to resolve this issue is through movement of that muscle and rest at the same time. This was just not possible with the level of pain I was having with my leg.

We are now taking the approach of keeping on top of the pain by taking a pain killer every 4 hours, like clockwork, whether I need it or not, just to maintain a baseline of pain control.

This does seem to help a lot, (not so much overnight and first thing in the morning) but it is much more controlled during the day with less flareups and more relief.

The drawback to the pain management working is it causes me to be very drowsy during the day now. I nap almost every couple of hours for a half hour or so, but even that helps me a lot. Given my lack of sleep at night sometimes, I do feel like I am catching up on some sleep issues.

The pain in the muscle could still be a side effect of the immunotherapy that hasn't quite stopped yet. Until we get back the results of the MRI and X-Ray of that area, we don't yet have a good idea of what is going on there, and so it's difficult to start treatment without risking causing further problems.

But for now, it's back to napping for me. Just wanted to keep you all updated.

Thanks again for keeping in touch with me. It's always so good to hear from everyone. I could not have beat this major battle in my life without all of your support, prayers and wishes.

We have reached a pivotal moment in my cancer journey. Today, my oncologist confirmed that I am currently cancer free. Although there may still be microscopic traces of cancer in my body, they are not visible or detectable at all. My scans are the equivallent to someone who does not have cancer.

The bigger part of the news is how exceptionally well I responded to the chemotherapy and immunotherapy treatments. For someone to be diagnosed with high-grade, muscle evasive bladder cancer that has metasticized to their lungs, to achieve cancer free status in five months is remarkable. Only 5% of bladder cancer patients have done this.

Now this does not mean that my cancer will not be back. But it does up the chances that it may stay away. As mentioned in a previous post, if I can go two years of cancer free status, the likelihood it will return lowers. That will be my next goal and milestone. (well, every scan from this point on will be a milestone)

So what's next? Well, I will continue to be monitored for cancer signs going forward, and may at some point go back on some form of immunotherapy maintenance. They are not sure of this option yet, as they continue to work on lowering my creatinine levels. I also have a follow up with a nephrologist (kidney doctor) just so they can have a quick look at my kidneys and treat any damage that may have been caused by the immunotherapy.

My oncologist also ordered an MRI be done on my lumbar spine area to get a better look at what might be going on with my leg pain and stiffness. Once they have figured that out, they will be able to treat it appropriately. At this point they just aren't sure what is going on with it.

Finally, my urological oncologist believes it's time now to take out my ureteral stents. He will make arrangements for that somewhere toward the end of April. With the stents out, the frequency of urination (which keeps me up at night) should go away, and I should be back to normal urinary frequency.

If not for the leg issue, and the stents in place, I would pretty much be back to myself pre-cancer. (with the exception of the weight gain and puffy face due to the steroids, and the immunotherapy) The weight should go back to normal for me, but it's going to take some time for sure.

Hello all,

The abdominal CT scan was released today. The scan showed no signs of cancer recurrence, or abnormalities in any of the abdominal organs.

This, along with the previously released chest scan pretty much indicate I am practically cancer free at this time. Overall great news, but it's still got a ways to go.

Scanning will continue for the next several years, with changes in the timing of the scans based on progress. Right now they will continue with every 3 months. May move to six months at one point, then possibly annually.

Given the good news on the cancer front, there are just a few leftover health issues we are actively dealing with.

My leg issue is one. This will take some time, and can only really get better once I can gain better pain management. They have asked me to go in for an X-ray on my hip and that general area to see if anything is going on around there.

My creatinine (which partly measures the efficacy and efficiency of my kidney function) continues to go down indicating my kidneys are getting better and healing. I am almost where I need to be with my kidney function.

The final issue is the ureteral stents. Dr. Morash had put them in in order to allow me an opportunity to lose the nephrostomy tubes. The stents gave me a much better quality of life, with the exception of the frequent urination is often results in. Now that the scans have come back so positively, and the ultra sound showed my kidneys, ureters and bladder were functionning normally (filling and emptying), he may decide to take the stents out all together and just let my natural functions take over.

I am realistic however. There are always small (sometimes not so small) issues that will crop up as I continue my cancer journey. But getting to this point has been miraculous for me.

And again, I have all of you, Dr. Morash, Dr. Beltran, Dr. Reaume, Dr. Seguin and their colleagues and Residents to thank.

Took a bit of a spill this morning. While getting ready to head in for an x-ray on my hip and leg region, I reached to grab a pair of shoes, but while doing so, my left leg gave out, and I took a flat fall onto the floor. Pain was quite intense as it did pull quite significantly on my muscle.

After about 20 minutes of resting on the floor, and with the help of Jamie, I was able to get up again, and make my way back to the living room couch to recuperate.

I have to be very careful going forward because the last thing I need is to break something. For now I have to use my available walk aids (cane, walker, etc) in order to safely maintain stability while my leg heals.

We cancelled our trip to Las Vegas in May, as it is highly unlikely my leg will be in sufficient enough shape to manage 5 days in Las Vegas. And we just don't want to travel there, only to have a miserable trip.

We will get back to Vegas at some point, but right now Jamie and I are setting our goals on our 2025 April cruise to Hawaii. Hopefully by then (a year from now) we will be able to enjoy a very happy, successful vacation and honeymoon.

Hi All,

The results of my last chest CT scan came in. If you can recall, during my December 6th scan, they identified that most of the nodules (bladder cancer) that had mestasticized to my lungs had significantly reduced in size or were almost undetectable at that point.

The results of my recent scan show that all of those remaining nodules had resolved (meaning they could not be seen anymore). There were no new nodules in the lungs or in relation to the lymph nodes.

This report in essences is showing a clear scan. No new cancer, no signs of cancer return, or cancer progression. Although not cancer free, that's the closest you can come to a cancer free diagnosis.

I am awaiting the results of the abdominal scan which should be coming in any day now.

Overall good news.

On another note, Jamie and I have had to cancel our planned trip to Las Vegas simply due to the current leg issues I am having. The trip was planned for less than 6 weeks from now, and it is not likely my leg will be in good enough shape at that time for a 5 day visit to Las Vegas. Fortunately, all our trip was refundable, and our aim now is to get ourselves on our Hawaii cruise in April of 2025.

I will update you as soon as I get the abdominal scan results.

Hi All,

If yo yu have been following my journey, you will have learned by now that when you get Cancer, you enter a war with one of the worst diseases known. Cancer doesn't care about you, it cares about itself.

When you face Cancer head on, you truly go to war against it. And as in any war, to win you have to keep fighting the battles of war. Just when you've beaten one battle, another comes along. Some of those battles aren't directly cancer related, but they are collateral damage caused by your fight against the cancer.

Case in point. The biggest battle for me so far has been beating back the cancer to the point of regression, and in some cases almost making the cancer undetectable. That was a huge win in this war. However, to win that battle, I had to put my body through 5 surgeries, 2 nephrostomy tubes, one radiation treatment, 4 rounds of chemotherapy, and two rounds of immunotherapy. From all that, I suffered some collateral damage to other parts of my body.

My kidneys took a significant beating through all of this. They had to seriously work overtime at clearing out toxins, and the cancer had blocked my ureters from allowing my kidneys to drain that they became inflamed and damaged. The immunotherapy treatments were also found to have been damaging my kidneys. With the steroid treatment I am now undergoing, my kidneys are returning to normal function again. Slowly but surely.

The other major collateral damage I suffered during the battle with cancer, was a weakening/stiffening of certain muscle groups in my body.

For the better part of nine months, I have not been able to be very active for very long. This was due to the sheer amount of time I was either bed ridden for not able to actively move around (with nephrostomy tubes, catheters, recovery from surgery, etc.) While I tried to keep my muscles moving as much as I could, it was not easy.

It seems that one of the large muscles (the piriformis) muscle (basically your glute muscle) has stiffened and tightened. The muscle then pushes on my sciatica nerve which is causing me great pain in my left leg at times, making it difficult to move or get appropriate exercise to help the muscle.

To fix this problem, I will have to do regular, stretching and strengthening exercises on that muscle, however given the pain right now, it is very difficult.

The doctors are now trying to develop a good pain management plan in order to allow me to get through the days with minimal pain, and allow me to do more active movements.

Obviously beating back the cancer to the point of remission was the biggest battle won so far. These collateral damage battles will get fixed too. It just takes time, patience, and "less pain".

Spoke this morning with my medical oncologist who was very pleased with the decrease in creatinine levels yesterday.

We are now back on track to slowly reducing the steroid doses again. This time we won't reduce the dose by as much, as as quickly. We will reduce the dose weekly by just 10 mg. This should help keep us on track without cutting the steroids back too much, too quickly.

So, all in all, back on the original treatment plan.

Had the weekly creatinine level check done today, and it has once again dropped. Seems the increase in steroid dose last week has now put me back on track to lowering my creatinine level to normal values. Not quite there, but getting closer.

The other good news with the blood work is my hemoglobin, which has been low (at times very low) for the past 9 months is almost back up into the normal range. That will help with any fatigue issues I may have had in the past.

That's the update. Will let you all know when we get the cancer scan results back. Should be any day now.