Anticipating the Bus

This week provided a poignant example to share with you some of the emotional toll of staring down a bus intent on hitting you (see post Ten Years!). As I mentioned in a previous post, I've had a cough since starting my current treatment, which is keeping me up at night and making me exhausted all day. At first, I thought it might be an allergic reaction to the treatment (this treatment has a higher risk of allergic reaction than others I've been on), but as it's continued on for weeks and weeks, I've started to fear the coughing is the result of known treatment side effects - either interstitial lung disease or pneumonitis. Scary diagnoses. Or maybe it's just an allergy. I don't know, but when you have cancer, these are the kinds of things that go through your mind with every little symptom. 

Finally, I decided I needed to reach out to my oncologist to see if there was something they could suggest for treating the cough. I'd tried cough drops, cough syrup, Mucinex, Benadryl, sore throat lozenges, Chloraseptic spray, honey lozenges, copious amounts of water, and probably other things I'm forgetting to mention. I was desperate. Thankfully, they were concerned about the cough. They ordered a chest CT scan for the next morning and said my oncologist would call right away with the results.

I went for the CT. Within ten minutes, I had results posted in MyChart. That is unheard-of speed! I've never gotten results that quickly. I couldn't wait to see what they found. No pneumonia; that's good. No pleural effusion; also good. But immediately, my eyes are drawn to the impression section of the report, which says, "Evidence of new thoracic malignancies." Cancer in my lungs?? Nooooooo. That has been my biggest fear, that I'll get cancer in my lungs and won't be able to breathe. Is that what I'm facing?

I jumped down to the detailed findings, but there was nothing that looked like a description of a new thoracic malignancy. How can that be? There's always mention of some lesion when they find new cancer. It was puzzling. But I knew my oncologist would be calling soon, and he would explain it to me. I waited on high alert, jumping at every notification on my phone. But he didn't call. Hour after hour ticked by. 

In the meantime, I re-read the report. I noticed it also said (as part of a confusing mashup of what looked like should have been two sentences), "mild lateral right lobe subpleural fibrosis." I consulted Dr. Google. Among other things, it mentions "interstitial lung disease" and "a dry cough, particularly when lying down, is a common symptom associated with pulmonary fibrosis." 

Both of these seem consistent with my symptoms and the known treatment side effects. But they're not things I want to be dealing with. Interstitial lung disease says it's usually not reversible. Will I be coughing for the rest of my life? What does this mean for my treatment? Surely I can't stay on something that's permanently damaging my lungs. I'll have to switch drugs. What options do I even have left? They had previously mentioned clinical trials as my next step. Did that mean that was the only option left? Why hasn't my oncologist called? Is it because he's trying to find a new treatment option for me before calling? Maybe he'll call on his lunch break. 

He still hasn't called. Maybe he can't find another treatment for me. Maybe this is the end of the line for me. I know that's been the case for a couple of others in my Facebook support group. I get on clinicaltrials.gov myself and start looking for options but don't find any. Is that because the ones he was hoping to enroll me in have been cancelled by our current government? What will I do now?

I know my oncologist is in clinic today, and I'm sure he's busy. Maybe he'll call once clinic is closed for the day. I sit by my phone until 7:30, when I finally conclude he's not calling that day.

I know he's doing hospital rounds the next day. Surely he'll call before he starts his rounds. That's happened before. So I turn my phone on as soon as I wake up, to make sure I don't miss his early call. But there isn't a call. I go back to my CT results. Read them again. Could the "new thoracic malignancies" be a typo? Should it have said "NO thoracic malignancies"? No, the wording is "Evidence of new thoracic malignancies." That can't just be a typo. Sigh. Then I notice that my results say, "Not yet reviewed by care team." What is going on? Why haven't they looked at my report? Did my oncologist speak to the radiologist but not look at the report? 

Finally, after 30 hours of this excruciating waiting and wondering, I decide I have to message my oncologist. What are the new thoracic malignancies? What's the deal with the subpleural fibrosis? Why haven't you called? I wanted to ask but didn't. I got a response an hour or so later: "The report has been corrected. There are no thoracic malignancies. The subpleural fibrosis is tiny and not a reason to change treatments yet. We can discuss further at your July 8 appointment." He didn't say, "You're making too much of this," but it's the feeling I got from his response. 

"No thoracic malignancies"?! You tell me there are new thoracic malignancies, but actually there aren't?! I've been planning my funeral for the past 30 hours! And the subpleural fibrosis is tiny and not terribly concerning at this point? How was I supposed to know that? It just said "mild." I feel chastened, but I'm also angry at feeling chastened, because they put me in a terrible position. Who wouldn't see these results and be fearful? 

My oncologist is a caring person, and I like him. I'm sure he was also trying not to highlight his radiologist colleague's error, but I would really have appreciated an apology. Some expression of regret for causing me unnecessary worry. At the very least, not making me feel like I was being paranoid and wasting his time by messaging him instead of waiting to talk at my appointment two weeks later.

This is the life I live. These are the ups and downs of living from scan to scan. This is what it's like staring down the oncoming bus but having no idea when it's going to hit you. You never know if today is going to be that day. I have seen so many fellow MBC patients who are posting happy, active selfies on Facebook one day and gone from this life days later. I know the end can be fast. I know my treatment options are getting fewer, possibly only clinical trials at this point. I could be one bad scan away from putting my affairs in order. That bus is coming. I just don't know when.