Todd's Journey

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.

Sciatica seems to be (fingers crossed) slowly healing. I am having a bit of an easier time moving around now without the aid of a cane or walker. Still have aches and pains from the sciatica, but much more bearable. I am using Dilaudid to keep ahead of any flare-up pain.

Due to the increase in creatinine, they have moved me up from 40mg of Presnidone (steroid) to 75mg. This is a normal course of action when trying to supress immunotherapy since at times when the steroid dose may be too low, the immunotherapy kicks back in. The rise in this dose has caused me difficulty in managing my blood glucose levels. Not a big deal though, as I can somewhat manage it through insulin dose changes. It's just not an exacting science, so sometimes the dose works, and other times it takes more.

I had my cancer CT scans yesterday on my chest and abdomin. We can expect the results of the scan to be available next week sometime. Hopefully the scans will be all clear with no further signs of cancer or cancer spread. I will keep you posted on the results.

I always try to remember what Dr. Morash (my urology oncologist) once told me. He said I have to remember that my bladder, ureters, kidneys, and all that area have been through a lot in the last nine months. It takes time for all of that to heal and get better. So I take every positive as just that. Positive. The number of negatives gets smaller and smaller. Good progress.

I had my weekly creatinine level check today. Unfortunately it did go up (instead of down) but only by 12 points. So while the increase was not terribly significant, it has gone in the wrong direction this week.

It is quite possible (because it is not an exact science) that my current lower dose of steroids might not be sufficiently suppressing my immune system, which would allow the immunotherapy to continue to damage my kidneys a bit. It is also possible the increase in creatinine is being caused by something else (medication, dehyrdration, etc.)

However, the Oncologists believe it's likely the tapering off of the steroids has made the current dose too low to continue to shut down the immunotherapy. They will move me back up a bit on steroids, and retest in a week. If my creatinine goes down, it was likely a dosing issue with the steroids.

So, not a terrible creatinine report, but we need to get back on track now.

We are in to the 2nd day of significant sciatica of my left leg. It is so bad at times, I am unable to put any pressure on my leg at all, and if I do, my leg will buckle and tumble me to the floor.

This leg issue as been around for about 4 weeks, but in the last two days has gotten progressively worse.

I have a progress CT scan on Tuesday for my cancer check, so the Doctors are going to take a look to see if anything is going on down there.

One theory they are currently looking at is related to the steroids. If my sciatica issue occurred during my stent replacement surgery (4 weeks ago) the start of the steroids (high dose) may have been masking the pain. As they continue to lower my steroid dose, it is possible the pain is much more noticeable now. It does seem like a workable theory as the pain has been increasing slowly as the steroids have been reduced.

Hopefully the sciatica issue will get better with some more time (can take up to 6 to 8 weeks) otherwise they will have to look at other options like surgical intervention to heal my sciatica.

For now they want me to use my Dilaudid (pain killer) as often as I need just so I can try and be somewhat able to move around a bit and help the sciatica.

Unfortunately for me, it's another one of the two steps forward, one step back.