The Clinical Trial

Everyone is dying. Some of us are just doing it faster than others.

Today was exhausting. We were up at 6:00 am to eat breakfast at the hotel. Mom's CT was at 9 and she was supposed to be done eating at least 2 hours before.

So, 6:30 am breakfast it was. At 8:15 am she had a blood draw and urine analysis. They were late. This should have been my first omen for how the day would go. They are never late at Mayo. 

It was 9:00 am on the dot when she got done. As I wheeled her as quickly as I could to the building next door she casually mentioned that she couldn't really full her urine cup. Omen #2. She has lymphoma. She can always fill a urine cup in the morning. 

We made it to her CT by 9:10. They didn't call her name until 9:30. Late again. They gave her her contrast. Two bottles to drink. One by 10 & the 2nd by 10:20 am. Her ECG was scheduled at 10:20. Not happening. 

Her CT finished up around 10:40 and we hussled over to her ECG. About 11:15 all her testing was finally over.

We grabbed some lunch at a nearby restaurant and then settled in to the waiting room for an hour before she met with the clinical trial team.

First it was the nurse who broke the news that all her tests looked great except her kidney function. Those levels were too high. Was she dehydrated? We weren't sure. But there was bacteria in her urine. The start of a UTI? Perhaps.

This was strike 1, but not necessarily a deal breaker. Push fluids, take antibiotics, & retest on Friday. Still start the trial on Monday.

Then came the real blow. The nurse came back to drop the bomb. The biopsy sample they did on 01/08 at home did not contain enough tumor tissue for them to test. They were going to try to re-run the test but the most likely scenario: she will have to have a new biopsy.

This pushes her start date back to 03/04 at a minimum. This is best case scenario. Otherwise it could be 03/11 before she can start. Which means some tests that only last 14 days fir the purpose of this study may also have to be redone.

We left Mayo about 4 pm feeling completely defeated. Her scans show the tumors are continuing to grow,  only millimeters, but still growing.

But more than that, at least for mom, it's the constant pain and the still not knowing if there's a possible treatment in sight.

She cried most if the way home. Wouldn't talk when her best friend or my sister called.

She's tired. We're all tired.

I'm hoping a good night's sleep will give us all some clarity and perspective. One foot in front of the other. One day at a time.