Living with Chronic Cancer

I was diagnosed with stage IV metastatic bladder cancer. The cancer had invaded my bladder muscle wall, I had a grapefruit-sized tumor, and after pathology, we discovered 4 involved lymph nodes. After my radical cystectomy and having an ileal conduit placed our initial plan was for a round of radiation and chemo.

My body was losing to cancer

The plan completely fell apart at my radiation consultation. We discovered I had a constant low-grade fever and a raging white cell count of 47000. After confirming there was no infection, we quickly learned my body was fighting and losing quickly to my cancer. I ended up with 4 lymph nodes in my pelvis swelling to golf ball size with one pushing directly on my sciatic nerve. I was in incredible pain and was very, very sick.

A genetic panel revealed important findings

Because of my age, being a nonsmoker, and generally having none of the typical symptoms or concerns that should have caused this particular type of cancer, my lead oncologist had ordered a genetic panel pretty early on. We discovered two big things. The first being that I had Lynch Syndrome. The second, and most important, finding out I was PDL1 positive.

Trying an immunotherapy called Keytruda

My oncologist was very hesitant to try radiation or traditional chemotherapy because I was so sick. He felt my body would not be able to handle it, but being PDL1 positive meant I might respond favorably to immunotherapy. He pushed through my approval because typically you would have needed to try and fail with more traditional therapies before moving to immunotherapy. One month after my first infusion of Keytruda, my white count dropped from 47000 to 4000. In general, all my labs finally showed improvement. Today, I am down to just 3 lymph nodes we are monitoring and are so close to being within normal range.

I will never be NED (no evidence of disease)

But here’s the thing. Even if these lymph nodes completely shrink, I will never technically be NED. I will need maintenance and monitoring of my cancer for the rest of my life. Because of the lymph node involvement, there is a 40-50% chance that my cancer could jump somewhere. Essentially, I am a chronic cancer patient. This is how my medical team and I choose to look at the situation.

We are always striving for being stable

When I began treatment, we decided to not aim for being cancer-free. We also do not talk about the statistics and the grim reality that could lurk in the background. Being a patient with mets means you celebrate any small improvement, and scans that show nothing has changed are a big deal. Stable, we are always aiming at stable. So, I go about living my life and once a month have my infusion with scans every third. I look at it like getting a monthly tune-up to make my body fight off the cancer.

Learning to stop fearing the future

Being “chronic” comes with its own set of emotions beyond knowing you have cancer. I know I will never ring the bell to signal the end of treatment. I know I’ll never have a piece of paper declaring me cancer-free. It is a strange mental hurdle to overcome, knowing that it will never “end”. I take each day at a time, and I’m learning to not be afraid to plan for the future. I’ve enjoyed planning vacations for next year, building a house, and settling into a new normal life routine. Maybe one day Keytruda won’t work, maybe one day my cancer will jump, but maybe one day will never happen. If I can give one advice to my fellow chronic patients, don’t let your diagnosis be a constant dark cloud. Understand the realities of this disease, but make sure you live all the days you are allowed.