The Hope Window

A friend suggested one experience from the past couple weeks might help other people if I wrote about it. It wasn’t something I was planning to talk about in detail because it was unusual–not a “normal” part of dealing with cancer. The friend said it was relevant because it’s about how you handle false hope, and that is at the heart of this experience. For me, it’s not about false hope though. It’s about how far you’re willing to open the hope window.

I had a CT-guided needle biopsy of the mass in my lung. I was conscious during the procedure and could feel them moving the needle, pausing for guidance, then moving the needle again. I could hear when they took the samples: snap, snap, snap. Then I felt a second sharp pain and the doctor said he was inserting a second sample needle. There were more gradual needle moves, more guidance, and finally a second set of samples: snap, snap, snap.

slides

As the nurses wheeled the gurney from the procedure room, the doctor stopped them. He was sitting at a computer, and he turned to look at me. “I ended up taking two sets of samples because I didn’t see any tumor cells in the first. I didn’t see any tumor cells in the second, either. I thought you should know.”

I stared at him for a second then asked what the sample looked like. He shrugged and said, “Infection?”

I was still sedated but although it made me a little drowsy, I was fully awake and cognizant. I absolutely understood what he said. After they wheeled me into recovery, I asked for my boyfriend, Charlie, to be sent in. I started crying when I told him what the doctor said: he saw no visible cancer cells in either sample.

Charlie was floored and confused. Once I was over the sedation, I was too. Charlie kept coming back to one sentence: “He shouldn’t have said that.” He knew as well as I did that you almost never get on-the-spot evaluation of a major scan or test, especially not in that situation–certainly not when it’s news like “there’s no cancer.”

We went straight to my PET scan, so we didn’t have a lot of time to talk. But I had a lot of time to think. When you’re getting a PET scan you’re injected with radioactive glucose then you have to sit completely still in a dark room for 45 minutes. During that time, I reflected on what had happened at the end of the biopsy, then Charlie and I talked about it on the way home.

THink

The first decision was that we should tell very, very few people. Charlie had already talked to two friends about the biopsy experience and later shared it with his mom, and I spoke with a handful of people when I got home. That was it: only about 6 people knew what had happened. The data is very clear: lung masses that look like cancer but are actually infection are far more rare than lung cancer–and that’s before you take my previous cancer into consideration.  There was no reason to drag people through 24 hours of hope that there was no cancer when there almost certainly was.

The second decision was that we were going to look at it as something that raised questions rather than answered them. For the next 24 hours, I was going to proceed with the assumption that I had cancer but I might also have some kind of infection. Understanding which lymph nodes were cancer and which were potentially infection could affect staging and radiation fields. We were determined to avoid any “you may not have cancer!” conversations.

In that situation, though, there’s some part of your brain that won’t let go. You can be as pragmatic and determined as you want but there will still be a tiny voice whispering, “He saw no tumor cells…” I didn’t dwell on that voice, but I couldn’t get rid of it. And as I’ll explain in a minute, I don’t want to ever get rid of that tiny voice.

Of course, the next day we got the preliminary pathology results from the radiation oncologist: it was cancer, squamous cell carcinoma. I’ve never gotten an explanation for why the doctor who performed the biopsy didn’t see cancer cells or why he decided to share preliminary positive results on the spot. I emailed him two days after the biopsy to ask about what infection might mean, and he never responded. He’s probably embarrassed–there are clear rules around communicating in diagnostic test situations. The truth is that I’ll probably never know why it happened.

uncertainty-ahead

That’s always true though: you’ll never really know why lots of things happened, or didn’t happen. Dealing with cancer is a crash course in living with uncertainty. The same logic that applies to how you approach statistics and research is relevant here. You never know what side of a statistic you’re on until things happen or don’t happen. Here’s an example of what I mean.

The prevailing stats at the time said there was only a 10% chance of my original cancer recurring. If I was in the 10% of patients for whom it recurred, there was a 90% chance it would be in the first two years. If this is a recurrence, I’m in the non-winning 10% of the non-winning 10% for a cancer that I had very very low odds of having in the first place.

I’ll never know why I ended up on the wrong side of those statistics. In fact, I’ll never even know if this is a recurrence or new primary. I need to be OK with never knowing, but more important I need to be vigilant that frustration never leads me to expect the worst. After all, I haven’t been on the “non-winning” side in all the dice rolls. I had a fantastic medical team. My cancer responded very quickly and well to treatments. I made it through with only a few side effects and in generally good health. I had three more years with friends, family, and my work. I’ve got a great medical team this time, too. I’ve had some great dice rolls and I expect to have more in the future.

That’s why for me the story about my needle biopsy is really about balancing optimism and realism. I’ll never be the type of person to greet the biopsy doctor’s words with a flat “nope, he’s wrong. I am certain I have cancer.” I don’t believe in dwelling on–much less assuming–negative outcomes. But being optimistic doesn’t mean I’m unrealistic. I understand the bad things that can happen over the coming months and years… but I understand that great things can happen too.

That’s why this is really about the hope window, and why I never want to get rid of that tiny voice of optimism. I believe visualizing positive results helps increase the likelihood of success. I believed that even before I read data about how a positive outlook can improve health. It makes sense to me: you can’t visualize positive results if you don’t have at least a bit of hope they they could happen.

It’s why my hope window is always at least partly open for all weather, sunny or foul.

open-window

Related Posts

Be Your Own Advocate

I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I

Read More »

Head and Neck Cancer Awareness Month

April is head and neck cancer awareness month! Be aware of the causes and symptoms, summarized in the graphic at the bottom. For me, it was a swollen lymph node below my jaw that didn’t

Read More »

Clinical Trial Math

Clinical trial math example: Monday + every two months = time to start worrying about my scan the following Monday. Tuesday + pain below my right ribs = worry about that AND the scan the

Read More »

My Best Days Are Ahead Of Me

Last year, I was in the hospital from chemo for my birthday, not knowing the cancer would blossom again months later. This year, I’m walking around San Francisco–short of breath sometimes, but walking–looking forward to

Read More »

Unpredictability and Patterns

The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and

Read More »

Speaking Out and its Price

I’m exhausted and stressed and sad and angry. I try to keep my posts here focused and positive, but it’s really hard at this point. I was contacted last week by the Organizing Director of

Read More »