A Tough Day

Yesterday was a tough day. My plan was to meet with Dr. Fisher and then start back on my wonderful PDL-1. But that was not to be.

Apparently, I had a bladder infection. This is my third infection since getting the stent placed in my ureter in December. There is a strict guidance from Genentech that PDL-1 cannot be taken if you have an infection. Their concern is that since we are playing around with the body’s immune system that they don’t want any confusion about what the immune system should be fighting. There is a safety concern and if something was to go wrong, I could jeopardize the entire trial.

Therefore, they have now put me on a high dose antibiotic for 5 days and then I have to wait another 2 weeks after I finish the antibiotic. That’s another 3 week delay. This is not great. Dr. Fisher wasn’t happy, Maria (my new study coordinator) was upset and I was distraught. My treatment had already been delayed because of paperwork and waiting another 3 weeks is excruciating.

But that wasn’t the end of the bad news. It appears that cancer has now spread in the lining in my diaphragm. This is the first real growth that we’ve seen for over a year. One thing that has been in my favor is that the cancer has never spread to the liver or lungs. With it going in the diaphragm, it is much closer to those sites, which truly scares me.

When I pressed Dr. Fisher as to what could be done, he told me that his hands were tied. We had to follow protocol. None of my efforts to charm him into giving me the drug worked. He told me that if I really really wanted, I could go on chemotherapy, but that he truly believed that PDL-1 was the best option for me and urged me to wait.

As I drove teary-eyed the two hours back to my office in Sacramento, it hit me that I was being so ungrateful. I am lucky that I will have access to this amazing treatment. So many others do not have this opportunity. I continue to live a full life. But, it’s hard. The disappointment was crushing. I had my heart set on finally getting back on treatment and I will have to wait while knowing that the cancer is growing.

My girls could tell something was wrong when I was preoccupied last night. They could tell I had heard bad news, but they have faith that everything will be fine – because it always has been. As Ariel was about to go to bed, she opened her arms wide, climbed onto my lap, gave me the longest, biggest hug imaginable and told me that I was the best mom in the whole wide world.

At the end of a really rough day, she knew exactly what I needed. Ok. I’ll wait. It’s just another 3 weeks. I’ll get my PDL-1 and my body will spring back into action. I just need to be a patient patient. Fortunately, I’m up for the challenge.