Bitches survive too

I recently published a post that basically says, hey, look, some people who have a serious illness with a fairly high likelihood of dying relatively soon will actually want to talk about it. Or even do a little planning around the possibility of dying, prior to being certain they’re actually terminal. And that’s not abnormal, depressive, or harmful. And it will in NO way increase their likelihood of dying soon.

I included some rather startling data about my life expectancy in that post, and I’ve had some of you express surprise that my doctors are actually giving me such clear and blunt information about my cancer. The answer is a resounding no, my doctors are not providing useful information at all. My doctors have not been candid. All the data and cancer information in my blog is the result of careful research that John and I have done. I believe the data I’m publishing is accurate, based on the reputations of the science journals where it was originally published.

Only once did I have an actual meaningfully candid conversation with a doctor. The only doctor who was remotely straightforward with me was the guy who did my first colonoscopy screening and discovered the cancer. He told me as soon as I was coming out of anesthesia that I had cancer. He didn’t wait for the pathology report and he didn’t add any caveats. He said quite directly that it definitely was cancer and that I would need surgery. He also, surprisingly, agreed that I would be better off getting my surgery in a larger city, rather than Albuquerque, when I mentioned I had the ability to get it done in the Bay Area, or Houston, or Boston. He recommended Boston.

Since then, I’ve had almost zero guidance. I was completely unprepared for the severity of the surgery, the months and months of recovery, and the permanent damage (I am lucky not to have a colostomy bag, but I will never be the same again).

Not only was I not remotely prepared for the difficulty of the surgery, I was also entirely, pathetically – almost laughably – unprepared for the effects of the chemo. It was vastly worse than I had been led to believe. Not only was I far sicker than I expected, I also was not warned of the permanent damage it would cause. I have permanent nerve damage in my hands and feet which causes pain, tingling and poor coordination. I also seem to have developed something like ADHD. I get distracted and lose track of my tasks. I drop a lot of balls, and I never used to be that way.

I don’t know why doctors are so cagy, and unwilling to give it to you straight. I gather it’s better than it used to be. I’ve heard that patients didn’t used to even be told that they had cancer. Patients didn’t want their families to know, families didn’t want the patient to know. Everybody knew and everybody pretended it wasn’t so. In my opinion, that’s nuts. It’s still that way in some places.

I can guess that one reason doctors don’t want to level with patients about the severity of treatment is they don’t want their patients to give up and refuse treatment. And for some people, that’s probably valid. However, I would have done better with my chemo treatments, and probably been able to stick with it longer, had I been more aware of what to expect.

Another reason, I’m guessing, is no one wants to give bad news, especially when it’s not for sure. It’s one thing to say, “yes, you have cancer” or “you are terminal.” But my odds are 50-50. What does that even mean? It’s almost meaningless. I might die, I might not. 50% – cancer free in 5 years. 50% – looks like I’m probably gonna die. It’s a complete toss up. It’s a complete unknown. How do you give that news? If you’re going to say, “I don’t know”, I guess you might as well not say anything at all, right?

I also get vague, sugar-coated answers from doctors – sugar coated to the extent of almost being not true. I’m not sure why I’ve had a couple of doctors give me generalized, overly optimistic odds. They’ll cheerfully name vague numbers better than 50-50, which might be true for an average of all colon cancers, but is definitely not true for those of us with lymph node involvement. Do the doctors not actually realize the devil in the details? Or are they just choosing to not mention that? I don’t know.

Advocates say you have to manage your own care, and it’s really true. It’s hard too, because a there’s a big learning curve. I knew next to nothing about cancer when I was diagnosed. There are several things I would have done differently during treatment if I had known then what I know now. But I just keep learning as much as I can as fast as I can, so I can make better decisions going forward.

Secondly, I want to thank you all for your supportive comments. You’ve sent me a couple of good, relevant articles that I’m going to pass along.

The first, sent by Laura, is a podcast about the 5 stages of grief.

https://podcasts.apple.com/us/podcast/radiolab/id152249110?i=1000529808434

We’ve all heard of the 5 stages of grief, right? Turns out it was originally the 5 stages of dying, not the 5 stages of grief. The original author of that theory was studying what people who were in the process of dying had to say about dying. The study found that people who are dying often really want to talk about dying, but the people around them, who aren’t dying, don’t tend to be comfortable with that. I guess there’s not really any big surprise there!

The second article is by Caitlin Flanagan and it made me both laugh and cry.

Her first paragraph reads, “Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. Laugh and the world laughs with you; get cancer and the world can’t shut its trap.”

Of particular concern to her was everybody’s insistence that she stay positive when she was going through a horrendous time in her life. The mandate to stay positive (and her failing attempts to do so) added enormously to her overall burden during that hugely challenging time.

Her main point is this:

“There isn’t a single bit of evidence that having a positive attitude helps heal cancer…I didn’t cause my cancer by having a bad attitude, and I wasn’t going to cure it by having a good one.“

Flanagan ends her article with a huge and transforming insight from her therapist.

“…over the years, many wonderful and generous women had come to her clinic, and some of them had died very quickly. Yikes. I had to come clean: Not only was I un-wonderful. I was also kind of a bitch.

God love her, she came through with exactly what I needed to hear:  “I’ve seen some of the biggest bitches come in, and they’re still alive.”

And that, my friends, was when I had my very first positive thought. I imagined all those bitches getting healthy, and I said to myself, I think I’m going to beat this thing.“

Here’s the full article: https://www.theatlantic.com/health/archive/2021/08/caitlin-flanagan-secret-of-surviving-cancer/619844/ (If you want to read the article but encounter a paywall, let me know, I can send a “gift” article to you.)

So here’s the thing – I will not increase the likelihood that my cancer will come back by thinking or talking about the possibility of death. Nor will I increase my survival chances by trying to stay positive. I don’t have that power. And I don’t have that responsibility. And I don’t have that obligation.

I think our culture’s mandate that we all stay positive at all times, especially when we’re seriously ill, is one of the biggest roadblocks to our ability to talk about death and prepare for death. How does one think about and talk about death and simultaneously be positive? And how does one prepare for something without thinking about it and talking about it?

Since this is a heavy post with no pictures, I’m going to end by sharing a beautiful photo of Albuquerque at night, recently sent to me by an old friend of mine. I had to reduce the resolution for this blog, but hopefully it still shows up crystal clear. It’s a fantastic photo. (photo credit, Robert Hohlfelder, thank you).

To send Kristina a comment, email turning51bykristina@gmail.com