Not Knowing

It's going to be one of those posts. All introspective and stuff.

Yesterday was my four month anniversary -- I was diagnosed on January 15.

It's been a sort of rough couple of weeks. My time as department chair is almost over. We're just about finished with final exams. I will officially stay department chair until the middle of August, but a lot of the heavy work is just about done. A lot, but not all. I have four or five lingering issues that probably won't go away any time soon, and I may actually be involved with them long after I'm finished as chair. The job is stressful enough, as academic jobs go, but these few issues are making it worse. I usually sleep well, but lately I've been waking up early and not being able to get back to sleep. Too much going through my head. But I'm OK.

I think the hardest part of all of this is the not knowing. There are lots of things I don't know, which, as a professor, I am both used to and frustrated by. We professors like to think we know a lot, if not everything, but we also buy into that whole "The Smartest People Are Those Who Understand How Little They Know" thing. Blah blah blah.


There are still things I don't know about follicular NHL, but I'm feeling more confident that I know what I'm able to know: how it grows, how it transforms, why it does what it does.


But there are lots that I don't know, that no one really knows: The best treatments. The best sequence of treatments. When to begin treatment. That kind of thing.


But the thing about all of this that has been nagging me most lately: I don't know who knows that I have NHL.


Obviously, there are family and friends and colleagues who know, because I have told them, and they have let me know that they know. Everyone reading this obviously knows.


But there are colleagues in other departments at work, parents of the kids' classmates, acquaintances I see just about every day -- people I haven't told directly, but who may have heard from others. They haven't said anything directly to me about it. It's strange not knowing if, when they ask how I'm doing, they mean a normal, polite, greeting-type "How are you doing?" without expecting an answer, or if they mean a whispered, pained, concerned "How are you doing?"


In some ways, I don't really care if people know or not. It's nice to avoid having to tell people how I'm doing. And if people don't act concerned when they see me, it must mean I still look "normal," which is probably a good sign. But I also don't like the idea of people avoiding me because they're uncomfortable asking how I'm doing. Easier to just say a quick hi and move on.


I'm not uncomfortable talking about cancer. But I'm not one to bring it up, either. And if I do, it's by e-mail, usually, with lots of build-up and warning. I inadvertently blindsided someone a couple of weeks ago when I brought it up as we were talking. I assumed she knew; she was part of an e-mail I sent out to a lot of people when I needed to tell colleagues. So when I dropped the cancer bomb on her, she got very upset. Which made me feel bad. I don't know how people will react to the news, but if they get sad, I'd rather they had a chance to do that in private, which is why I tell people by e-mail.


Telling people about cancer is hard, and I don't envy doctors who have to do it. Of course, my own doctor did a crappy job of it.


In some ways, I was prepared for the news long before it came. In October, when I had the CT scan that showed the abnormal node and the spot on my lung, I looked up what the abnormal node might mean. Could mean nothing, I found out, but it could mean a lot of other things, including lymphoma. One general symptom of lymphoma is swollen nodes in two areas of the body. So when the second node popped up in December, the first thing I thought of was the lymphoma possibility. Dr. G, the general practitioner, sent me to a surgeon, who tried antibiotics to make the node go down. When it didn't, he did a biopsy.


When the biopsy results came back, Dr. G left a message for me. When I called back, she said she wanted me to come in to talk to her about the biopsy. "Anything wrong?" I asked. "Why don't you just come in," she said. Well, gosh, I guess everything is fine. She just wants to chat in person. No surprise there; I'm charming as all get-out.


I can't blame her for the attempt at cushioning the blow. Better that she gives it to me face-to-face so she can help me deal with it. But that was such a clear signal that the news was bad, it wiped out any cushioning that the face-to-face meeting might bring.

I saw Dr. G a couple of hours later, with Isabel. She kept us waiting for a while (a bad habit of hers), and then when she came in, she asked how I was doing. "OK," I said. Then she asked me, "Stressed?"


Stressed? Why the hell would I be stressed? You wouldn't give me biopsy results over the phone, and you think I might be feeling some stress? Then she said she had bad news, and told me it was lymphoma. She gave me a little more detail about the biopsy results, and when I started to ask my thousand questions, she cut me off and said the oncologist would be the one to answer them. She then asked if either Isabel or I would like a prescription for anti-anxiety medication. I said No. (I wasn't feeling anxiety, really. A little numb, but, like I said, I'd already told myself the lymphoma was a possibility.) Isabel also declined, pointing out that we had three kids and at least one of us should probably not be drugged up right now.


So, overall, I'd give Dr. G about a 4 out of 10 for how she handled it. But I can also relate. It's hard to tell people. Which brings us back to my not knowing who knows, and why they're probably not going to get the news from me.


The good news is, part of why it's hard to tell people is that I don't look or feel "sick." But then, not looking sick creates problems, too. They want to know why I'm not being treated yet. And then they start wondering if there's really anything wrong, or if it's really as serious as the word "cancer" suggests. So then it takes a half hour to explain what fNHL is, and how it's indolent and slow-growing, but there's a chance it could get aggressive, and yes, it really is serious, and on and on.


So that's where I am. Like with everything else about follicular NHL, how I'm feeling about it is kind of in between. There are people I wish would know about it, but I also don't want to burden them with it until I have to. So I'm in no hurry to break the news.

Feel free to do it yourselves, though. Better you than me.