Cancer Rocks My Boat One More Time

I’ve had what most would call an easy journey fighting lung cancer, especially compared to a lot of my friends. Only three times in 6-1/2 years has my boat been rocked. The rest of the time, I’ve sailed relatively smooth waters.

Navigating troubled waters

The first two times my boat capsized; it was because scans showed my cancer was growing. The first time I got that news, I ended up joining a clinical trial for what turned out to be nivolumab (aka, Opdivo). The second time, I stopped my immunotherapy treatment for a couple of months, had the errant tumor radiated, and returned to treatment as usual.

I've been lucky with my treatments

While traditional chemotherapy made me ill, immunotherapy has been easy on me. The only side effect of significance I have had is a thyroid that quit working right. A little pill swallowed everyday controls that.

Some people aren’t as fortunate when getting immunotherapy. It is not uncommon to experience thyroid issues, but rashes, swelling, changes in eyesight, colitis, gastritis, and a bunch of other “itises” also can occur due to a super-charged immune system.

I am a person who tends to take a lot of little aches and pains in stride. Besides that, I have a short memory so if something is not bothering me at the very moment when I see the doctor, I will probably forget to mention it. It is rare for me to bring up any health issues when I go for my appointments.

What are these new, mysterious symptoms?

Last week, though, I remembered to mention a few issues I had been experiencing. I had an ugly rash on my face, sometimes my limbs were swelling so much that my shoes and watch were too tight, and my eyes have been very dry and red and sometimes my vision seems compromised.

When I mentioned the symptoms to my nurse practitioner, I anticipated a referral to an ophthalmologist for my eyes and some cream for my face. I knew that both symptoms could be related to my treatments, but I wasn’t concerned about it.

Taking a break from treatment

She wasn’t quite as cavalier about my symptoms. The small list of what I considered insignificant complaints got my boat rocked again.

My oncologist surprised us both when he suggested that I take a break in treatments. For the first time since I was diagnosed with lung cancer in October 2012, I am not getting any kind of treatment.

At first, I was excited about that prospect. I imagine a lot of you can relate when I say that I was tired of going to treatments every month. To get a break seemed like a gift. I came home and posted it to Facebook. And, I got a ton of congratulatory messages.

Gambling with my life

I think it was those messages that made me stop and think about the significance of what had just happened. I am not NED (no evidence of disease). My tumors are stable, but they are not gone. And, I have willingly stopped treatments...

A gambler I am not. And yet, I feel like that is what I’m doing right now – gambling with my life. No one really knows if the tumors will remain stable without a regular dose of Opdivo. The drug is too new for there to be very much history upon which to rely.

Unsure about what's to come

So, while I am ecstatic to get a break from treatments for a little while, I am a bit nervous about what my next scan will show. Naturally, I have my fingers crossed that the cancer cells won’t grow or spread. Realistically I know it is probable that I’ll be facing some tough decisions in the months to come. When that time comes, I hope my boat only rocks and doesn’t completely wreck.