Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer
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“I was such an asshole back then”

If you are a woman or nonbinary person who dates men, you’ve probably dated a man who, when talking about his past relationships, admitted to you that he “used to be such an asshole.”

Sometimes this is accompanied by a story, told shamefacedly, about how he was manipulative or even coercive in his past relationships, or how he made his female partners do all of the emotional labor in the relationship (although he rarely uses this term). Sometimes untreated mental illness is part of the story, although of course, mental illness doesn’t make people assholes. How they choose to deal with it sometimes does.

Regardless of the particular details, many men in their 20s and 30s have these stories. In fact, I think this describes all of the men I dated except for the ones who were still assholes at the time I dated them.

I was talking about this with a friend recently and we started asking ourselves how exactly all of these men ceased to be assholes. How did they figure out that their behavior in their past relationships was wrong? Who told them?

The answer is as obvious as it is depressing: usually, the women in their lives told them, either during the course of the relationship or while breaking up with them. Often, the lesson didn’t sink in until the relationship was long over. I know a few men who learned to be better by reading blogs like Dr. NerdLove and Captain Awkward, but for the most part, it takes a person you love pushing you to do better.

It brought to mind all of the emotional labor I’ve done with men in my own life—telling them to stop comparing sexual assault to totally asinine things that have nothing to do with structural oppression; pointing out to them that every time I disagree with them, no matter how mildly, their tone almost instantly becomes irritated or even resentful; reminding them that “no” is a complete sentence and I don’t owe them further explanations; explaining to them that they can’t refuse to be in a committed relationship with me and then get upset at me for dating other people; telling them to stop pressuring me to have an orgasm like it’s a referendum on their sexual abilities; and so on.

How many of these men now tell their girlfriends with an embarrassed chuckle that they used to be “such an asshole”? How many of them give credit where credit is due?

In our conversation, my friend and I laughed mirthlessly as we realized that so many of our relationships with men involve us essentially preparing these men for future relationships with other women. And our own loving partners were prepared for their relationships with us by other women, too. It’s a cycle of emotional labor that’s rarely acknowledged.

If you are a man who dates women who’s ever found yourself reflecting on past relationships and realizing that you used to be an asshole, I want to invite you to ask yourself these questions:

1) How were you an asshole?
2) How did you learn that you were being an asshole?
3) How were you able to change that behavior?
4) Who helped you?
5) Have you thanked that person?

Obviously, if you don’t think that person wants to hear from you, then don’t do #5. But most of the time, your exes would probably be relieved to know their labor had an impact. I know I would be, when I think about all the thankless hours I spent calmly explaining things to my male partners only to have them respond with “ok, fine,” and then years later tell their new girlfriends what assholes they used to be.

I forget who said it now, but I saw a tweet once along the lines of “behind every ‘woke’ man is an exhausted feminist.” I believe it.

Whether or not you ever go back and thank the people who made you who you are today, I would love to see more men reframe the way they approach this conversation. Instead of “I was such an asshole back then, lol,” I would love to hear, “I used to be a really difficult person to be in relationship with, but my ex taught me a lot about how to be better and I’m in her debt for that.”

None of us become better people by accident. We have to be taught—by parents, by friends, my partners, by writers whose work we read. Yes, you make an effort too, and that matters. But someone helped you make that effort, and they deserve recognition.


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“I was such an asshole back then”

How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

Okay, maybe this is kind of turning into a Cancer Blog.

[Content note: medical stuff]

One of the first things my oncologist said to me at the beginning of this whole wild ride was, “Don’t Google.”

Wise words. For the most part, I haven’t. I’ve used some well-vetted websites (such as the American Cancer Society) to help myself prepare for things, but I’ve never intentionally sought out other types of medical information and narratives.

However, Google being how you access legit medical websites as well as blogs, things have nevertheless found their ways onto my screen that shouldn’t have. Some of this was probably unavoidable; some of it definitely wasn’t, especially when people sent me links or I clicked on them.

There’s a lot I didn’t understand about the psychological side of medicine until recently, but once I did, things started to make sense and I started to notice things I’d never noticed before.

For instance, well-trained doctors and nurses who are not characters in TV shows or moralizing children’s books never say “THIS WILL HURT A LOT.” Actually, they don’t even say, “This will hurt.” They say, “You will feel a pinch.” They say, “There might be a burning sensation at first, but it’ll go away in a few seconds.” They say, “You’ll feel a sting when I numb the area, but after that you won’t feel anything. If you do, tell me.” They say, “Some patients find this uncomfortable. If it’s too much for you, let me know and we’ll see what we can do.”

I started to notice that as much as possible, they stay away from words like “hurt,” “pain,” and anything vague or emotionally-charged.

Then I noticed how my doctor responded when I asked about pain management post-mastectomy. He said, “We use a multi-modal pain management protocol. You get four different medications, one of which is an opioid. We find that when patients return for their one week follow-up, the majority of them voluntarily return the opioids to us, saying that they only took a few of them or never needed them at all.”

Next I asked about chemo side effects. He said, “The main side effect patients experience nowadays is fatigue. Everything else is very well-controlled with medication, so if you’re still experiencing nausea or other side effects, let us know and we’ll add medications to control it or reduce the dose of the chemo. Even with fatigue, it varies. The best way to counteract it is exercise. Try to get yourself moving at least a little bit every day. Most of my patients continue to work during chemo, if not full-time. One of them even ran the Columbus Marathon during her treatment.”

Notice what’s going on?

Whenever the question of pain, discomfort, and side effects comes up, good medical providers do several things:

1) They are honest about what most patients can expect, but
2) They don’t focus on the negative aspects or use emotionally charged language to describe it
3) When most patients can expect a positive outcome, they emphasize that
4) When discussing pain or other side effects, they quickly shift focus to what THEY plan to do to address it.

This is very important, and that’s where the psychology of pain comes in. Research shows that expectations of pain play a huge role in our subjective experience of pain—expect something to hurt a lot, and it probably will; expect it to be tolerable, and it’ll hurt less. That doesn’t mean you’re going to magically feel no pain—we have nerves, after all—but there’s a degree of subjectivity to it and we’re learning that it’s a rather large degree.

Unfortunately, once you’ve become convinced for whatever reason that something is going to be very painful, it’s very difficult to un-convince yourself of that, because at that point your brain’s fear response has sort of taken over. That’s why it’s important to manage what information you receive beforehand so you don’t end up with an expectation of intolerable pain.

And that’s why my doctor told me not to google stuff.

Doctors don’t want patients freaking themselves out with graphic descriptions of painful procedures not just because they want to help you avoid panic attacks and unnecessary stress. It’s also because expecting severe pain can lead to experiencing severe pain. More pain means more pain medications, a greater risk of complications and addiction to those pain medications, a longer recovery time, and a generally all-around shitty experience.

A wonderful book I just read, What Patients Say, What Doctors Hear by Dr. Danielle Ofri, describes this phenomenon and cites research dating back decades. From a Washington Post review of the book:

We’ve known for decades that doctors who offer empathy, build trust and set expectations help their patients fare better. As far back as 1964, a study conducted with abdominal-surgery patients illustrated what Ofri calls the “demonstrable effect of the simple act of talking.” Before surgery, half of the patients were visited by an anesthetist who said pain afterward would be normal and would last a limited amount of time, and explained how patients could relax their muscles to lessen the pain. These patients needed half the pain medication of others who didn’t receive a pain talk. If we are an overmedicated nation, better communication would seem an easy and cheap way to relieve that burden — except that listening takes time, and doctors don’t usually have that.

If doctors don’t always have the time to talk to patients about pain in this calming, practical way, we now have the internet to step in and fill the gap. Sometimes it does this well, but often it does it very poorly.

We all know cognitively that you’re likely to find a disproportionate number of negative stories online because people who have a positive or neutral experience are less likely to take the time to describe it, whether that experience is with a restaurant, lawn care service, book, or medical procedure. We know this, but when you’re scared about your upcoming surgery and you stumble upon some first-person accounts, you’re not thinking of it that way and you can’t think of it that way. The fear response takes over.

Even if the experience being described is quite typical and probably fair to expect, it still does patients like me few favors to read those descriptions. First of all, subjective experiences of pain are, well, subjective. One person’s terrible pain could be my absolutely tolerable pain, and there’s no way to know it. Pretty much everyone has pain after surgery; that’s to be expected. But reading about it can still harm me by causing me to expect more pain than I would’ve otherwise had.

Different online sources also have different motivations. I’ve read a few blogs by cancer patients and found most of the accounts there to be pretty neutral and even-handed when it comes to describing cancer treatment. Yes, it sucks, but since these bloggers were documenting their journeys overall, they also described the parts that were okay, and the parts that were just boring, and even the parts that were interesting and better than they expected.

But as soon as you get into first-person narratives being published on websites like Buzzfeed and Slate and whatever, you’re going to see a much more skewed version of things because, as I’m furiously finding out, people love a graphic, miserable cancer narrative. People eat that shit up. Painful medical procedures, disgusting post-op symptoms, bizarre side effects, the works. It gets clicks. It infuriates me.

Even if those experiences are very much real, it doesn’t do someone like me any good to read it. Some patients justify it by claiming that it helps us be better “prepared”—I used to do this too—the fact is that it doesn’t make is better prepared. It makes us less prepared, because it makes us expect the worst and therefore ultimately have a worse experience.

So, when you come across these “raw” and “honest” cancer narratives and you feel the urge to send them to your friend with cancer to help “prepare” them or because you think they might find it validating, take a pause and ask yourself 1) who this is primarily being written for and 2) how exactly this will prepare your friend for what they’re about to face. Put yourself in their shoes. Imagine you’re going through treatment for a deadly illness, and you don’t know if the treatment will even work or how much damage it’ll do to you in the process. Would reading this material help you? If not, it won’t help me either.

What I do find helpful is neutral, matter-of-fact explanations of what I can expect. The best of these have come from my hospital itself, which makes tons of handouts available to patients. Here are some pages from the one they gave me about mastectomy and reconstruction surgery:

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Websites like the American Cancer Society, the National Breast Cancer Foundation, and BreastCancer.org also do this well. When I do google, these are the websites I usually click on.

And in terms of speaking to people, two conversations have made a big difference in calming me down and setting more positive expectations for surgery. One was the appointment in which my doctor told me about how most of the opioid medications get returned within a week. The other was when my mom, who had a c-section twice, told me that post-surgery pain just felt like a very strong muscle ache, as if you’d worked out super hard the day before. That was very reassuring. I am no stranger to strong muscle aches.

In my social circles, we generally value sharing and listening to people’s personal experiences, and we emphasize that everyone’s experience is valid and important and so on. I agree with this, generally. But right now, as I’m going through cancer treatment, everyone’s personal experience is not important to me, and I shouldn’t read and give credence to something just because it’s someone’s personal experience. Doing so can not only give me panic attacks, but literally cause me to feel more pain.

So for the time being, I’m trying to stay away from negative and emotionally-charged accounts of cancer treatments, and my friends can help by not encouraging me to read them. If necessary, I’ll “prepare” myself by talking to my doctors. They have yet to make me regret it.


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How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain