The Update We Didn’t Plan to Write

It’s been a while since we’ve posted an update, and for a while, that was a very good thing.

After our last update at the end of February, when we learned that Dave would not need the year-long immunotherapy treatment we had been preparing for, things were…normal. Or at least as normal as life can be after chemotherapy, a seven-hour bladder removal surgery, and two hospitalizations.

March, April, and most of May were relatively uneventful. Dave focused on rebuilding his strength and endurance, with the goal of eventually returning to work. He had two clean scans, both of which gave us the reassurance we desperately wanted: there was still no evidence of cancer recurrence.

For a family that had spent the better part of a year waiting for the other shoe to drop, it felt pretty damn good to just…live.

And then, in mid-May, the other shoe dropped.

Round One: The Kidney Infection

In the middle of May, Dave developed a fever and started shaking uncontrollably. He was admitted to Highland Park Hospital, where we learned he had a kidney infection.

Given the urinary diversion created during his surgery in January, Dave is at a somewhat higher risk for urinary and kidney infections, so while this was certainly not ideal, it wasn’t immediately alarming. He was given IV antibiotics, spent several days in the hospital, and was eventually sent home with a longer course of oral antibiotics to finish the job.

We thought that was that. Two weeks later, it wasn’t.

Dave developed another fever and was admitted to Evanston Hospital with high blood pressure, a high heart rate, an elevated white blood cell count, and sepsis — thankfully, without septic shock. The initial thinking was that the original kidney infection either hadn’t fully cleared or required a different and longer course of antibiotics.

During this hospitalization, we also received another delightful surprise: Dave, my mom, and the boys had lost their health insurance coverage for the entire month of June because Dave had been unable to work the minimum number of hours required the previous month.

Thanks for the heads up, NO ONE! Fortunately, coverage was reinstated July 1. As it turns out, that was going to be extremely important.

Before being discharged from Evanston, the team performed a loopogram, which showed a potential blockage near Dave’s left kidney. He was sent home with more antibiotics and instructions to follow up with his surgeon.

Round Three: The Plot Thickens

On the evening of June 30, Dave developed another fever and was extremely weak.

The timing was almost comically perfect: his insurance coverage was reinstated the very next day, July 1, and we were able to get him into the Northwestern oncology clinic that morning.

He was admitted immediately. Testing showed that Dave has only 50% kidney function.

As the team dug through his bloodwork from the previous four months, they realized this wasn't an acute problem that had appeared out of nowhere. His creatinine had been steadily increasing since March, indicating a much more chronic kidney injury.

Creatinine is a waste product that healthy kidneys filter out of the blood and eliminate through urine. In general, a lower number means the kidneys are doing their job. At this point, Dave’s creatinine was 2.86 — more than double what it had been at the beginning of June.

After what felt like approximately one million scans, tests, consults, and conversations, the team finally identified the problem: There was a complete blockage between Dave’s left kidney and ureter.

And, unfortunately, they had a pretty good idea why.

So…How Did This Happen?

During Dave’s surgery in January, his urinary system had to be reconstructed as part of the process of creating his urinary diversion. Stents were placed to help support the newly constructed connection between his kidney and ureter while it healed.

Those stents fell out prematurely.

The concern is that without the stents keeping that connection open, the newly constructed ureter-to-kidney connection began to heal shut. And now, months later, Dave’s left kidney was essentially trying to drain through a door that had closed.

Because his kidney function was already significantly compromised — and because the blockage had caused severe swelling and stress on the kidney — the immediate priority was to get some help to it.

On July 6, Dave was taken into surgery to have a percutaneous nephrostomy (PCN) tube placed directly into his left kidney. The tube runs from the kidney through his back and drains urine into a bag. Dave has had that tube since July 6.

It is uncomfortable. It limits his movement. It makes sleeping difficult. It makes doing just about anything more complicated.

And it has become a constant reminder that this is not the recovery we thought we were in.

What Happens Next?

Tomorrow, August 10, Dave heads back to Northwestern to have his current PCN tube removed and a new one placed.

Then, on Friday, he’ll be back again — this time under general anesthesia — for a series of procedures including a looposcopy, loopogram, left retrograde and antegrade pyelogram, and ureteroscopy.

If you know what any of those things mean, congratulations. Your Google search history is probably significantly more interesting than ours.

The important part is that these tests will give the reconstructive surgeon a detailed picture of exactly what is happening inside Dave’s urinary tract and help determine how he will approach the next surgery.

That surgery is currently scheduled for August 24. And this is where things get a little scary.

In several ways, this reconstructive surgery is more complex — and carries more risk — than the radical cystectomy Dave underwent in January. The goal is to repair the blockage and restore a functioning pathway for urine to drain from his left kidney.

We don't know exactly what that surgery will look like yet. Friday’s testing should give the surgical team the information they need to make that determination.

We Didn’t See This Coming

This was not the update we thought we would be writing.

We thought we would be writing about Dave getting stronger. About returning to work. About his clean scans. About life slowly settling back into something resembling normal. Instead, we’re talking about kidney function, nephrostomy tubes, reconstructive surgery, and another stretch of hospital stays and recovery.

Physically, this has been a lot for Dave. Emotionally, it has been a lot for all of us.

But here we are.

Tomorrow starts another round of procedures, and the next few weeks will bring more testing, another surgery, and another recovery. So, as always, we’re asking everyone who has followed Dave’s journey to keep him — and our family — in your thoughts as he heads back to Northwestern tomorrow and through the weeks ahead.

And if there’s one thing we’ve learned through all of this, it’s that “one step at a time” sounds a lot easier when you’re not carrying a nephrostomy bag.