The Anxiety of Something New

In a few days, I will have some blood drawn for a liquid biopsy. After 40 rounds of chemotherapy, my oncologist and I have determined that it is time to try something new and different to treat my lung cancer. We revisited an old biopsy sample to check for any newly understood genetic aberrations that might account for the cancer and nothing targetable came up. But then, it could just have been that the sample was not good enough. It turns out that a small but significant percentage of biopsies do not provide sufficiently valuable tissue, and maybe this was the problem. I was faced with the choice of either having a new surgical biopsy or having blood drawn for a liquid biopsy. The interesting thing about liquid biopsies is that a small but significant percentage of them fail to offer accurate results -- so neither procedure is perfect. My oncologist, in his wisdom, suggested we go with the easier option. What he will be looking for is any reason to not put me into a new immunotherapy clinical trial. I am hoping he does not find one.

A Crossroads in the Lung Cancer Journey

It is a crossroads, and there will be change, but we cannot yet know exactly what that will be. Beginning any new treatment is anxiety-inducing. Back in the halcyon days of my youth when I was merely suffering from shortness of breath and the lingering effects of a lung infection and the X-ray to check for pneumonia that would reveal a mass in my lung had yet to be taken, everything seemed so clear and easy. I was going to traverse a familiar path, take a round of antibiotics and be well, get my lung capacity back, and rebuild my waning stamina. It was how these things were supposed to work. Then there was that discovery of the mass and resulting anxiety about what it could be, anxiety about what treatments there were, anxiety about the misinformation and falsehoods spread all over the Internet, anxiety about whether my body would respond, or whether the side effects would be intolerable, or whether I might die.

I was fortunate in that I was given very clear guidance by my medical team, so there was no additional anxiety from confusion or miscommunication, and my choices were very limited due to the late-stage of the cancer. For me, it was chemo or nothing, and the "nothing" had a pretty grim outlook, so I had but one real choice and had to face it quickly. The anxiety was replaced by acceptance and determination to slog through the process. The slogging eventually eased up as the process became more routine. After a few months, it seemed that I more or less knew what to expect -- in spite of every round being slightly different, it all seemed more and more the same. People kept referring to these cycles as my "new normal," and as much as I disliked the term, it kind of made sense. And for two years it was progressively easy to relax into it, to just go with the flow. Until a couple months ago.

With Change Comes Uncertainty (and Anxiety)

I could sense that something needed to change. Maybe it was me just starting to get fed up with the routine, maybe I was getting tired of almost forgetting to take my steroids right before each infusion. But when my oncologist sat down with me after my last scan, I could immediately sense it: change was coming again. And now, for whatever reason, the anxiety about that change seems more palpable even than when I started chemotherapy. Perhaps it is because I have more riding on this change -- three years into a stage IV lung cancer diagnosis is still has not locked me into the two percent of patients who statistically are able to pass the five-year mark. And I want to pass that milestone, to see my daughter enter high school, to finish some of the projects that are still on my desk.

But the anxiety is always strongest when you don't know what the change is going to be. We determined that I would switch treatments to try and get away from just slowing the cancer with chemo to doing something that might actually affect a profound change. But the "might" is a big one and we still have not settled on what it will be. So the anxiety continues, spread throughout my family, stretched out now through the coming liquid biopsy, then another scan. Then we will chart our new course and in the process, the anxiety will cause second-guessing.

Will we have chosen the right treatment path?
Will I even respond to the treatment?
Will I be able to tolerate the side effects?
Will this path keep me moving forward for another two years -- one year, even a few months?

Change breeds anxiety. I know that once the direction has been determined, for me the anxiety will go away. Once it is settled, I will accept the new path and move forward. While I am stuck in limbo, at the mercy of biopsy results that might flip the treatment options available to me, I continue to struggle just to keep the anxiety at bay. That new path cannot get mapped out soon enough.

We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.