Decision about surgery, and discussion of empathy vs toxic positivity

Something I want to talk about is positivity and toxic positivity. Some people have told me that I've inspired them with my positivity.  That's wonderful, but I wanted to note that anybody dealing with a hard thing is inspiring, whether or not you can see that it is hard for them.

I am generally a positive person, and I feel better when I am focused on good things. I’ve been keeping a gratitude journal during this whole process, in which I tried to note at least one positive thing each day. I also got outside and walked the vast majority of days since chemo started, and enlisted friends and family to walk with me to help me get outside. These things definitely helped me not wallow in worry or sadness, and I value them. But this is not the only reasonable way to approach a challenge. Other people might do better by exploring their feelings of anger, sadness, anxiety or other strong feelings that society deems more negative. They might meditate, make art, talk about it with friends, go running, punch pillows, scream, have therapy, or other things. Each person's emotions they are feeling are valid.

Toxic positivity is about dismissing a person's negative emotions, and giving the person false reassurance instead of empathy. Many situations in life, including a cancer diagnosis, involve lots of negative emotions, and these are better addressed rather than getting stuffed down and ignored. 

Some examples of toxic positivity comments are “Good vibes only!", "Don't think about it; stay positive", "A positive attitude makes all the difference", "Happiness is a choice", "Everything happens for a reason", "Look on the bright side", "It could be worse", "You're only given what you can handle”, etc. 

People who say these are generally trying to be helpful, and people can even do it to themselves. If someone's statement (or your own thought) makes you feel shame, guilt or overwhelm, or if you are trying to hide your emotions, it might be toxic positivity. 

If you are trying to figure out what to say to someone else who is dealing with a tough situation, think about whether you are trying to make a person stop feeling hard emotions, or if it is uncomfortable for you to think about their emotions. If so, maybe what you're considering saying might be toxic. I definitely have a tendency to look at what's happening in a scientific or logical way, which maybe helps me avoid dealing with some of my emotions, and definitely makes me tend towards helping fix things rather than sitting with the emotions.

Some helpful, empathetic, non-toxic statements to say to another person might include "That sounds really hard", "I'm here to listen if you’d like to talk", "That's really a lot. How can I help?". Even "I don't know what to say. How are you dealing with this?" is good. 

When you are thinking to yourself, maybe "I'm angry. What can I do to express that in a safe way?", or "I'm sad. This is so upsetting. What normally helps me when I'm sad?" "Or I feel really scared. There's sure a lot to be afraid of. Maybe I can list out all my concerns then call a friend who's good at listening or make a therapy appointment." Or "I'm anxious, and that's reasonable. There are so many unknowns!”

That last part is where I was sitting with my emotions last week. I was anxious and worried, and it was reasonable to be so. When we met with the surgeon, she was concerned that a stroke would be more likely if I had a mastectomy due to the longer surgery and recovery, since I’ve had a couple blood clots and strokes run in my family. She also said that the scans showed I could have lumpectomy, but if I wanted a mastectomy or a double mastectomy, she would do that. We researched everything we could find about whether I should have a lumpectomy followed by radiation or get a mastectomy, and there were no clearcut answers. Everything we could find said there was no difference in longevity, and very little difference in recurrence. Even with a mastectomy, you can get cancer in the remaining skin or other cells that needed to be left behind to have a successful closure after surgery.

I have made a decision to have a lumpectomy, and I am left wondering whether it’s the right decision. Will cancer return? Or will I go many cancer-free years and live a long life? Would the side effects of mastectomy have made my life harder? Would I have had a stroke? I am going to have to internalize that my choice was the best I could do at the time, and if I get cancer again, it will not have been due to my choice. This was a choice recommended by the doctors, and it was reasonable.

I did feel a sense of relief when I made the decision, simply because the mastectomy is a much more serious operation with the possibility of lifelong adverse side-effects, and of course, now I have a plan. I have also had quick pangs of wondering if I am making the right choice, but I assumed I would have those thoughts. So I’m moving forward.

So here’s a chance to practice empathy rather than toxic positivity in your mind. Was your immediate reaction to think something like “You made the right choice - you are going to beat this!” or more like “Oh, that sounds like a really hard decision”? Both sound positive, and are meant to be supportive, but the first one dismisses the anxiety and the second one acknowledges it. It’s an ongoing thought process to practice!

My lumpectomy surgery is scheduled for June 6th, with a procedure just beforehand to place a radioactive marker where the tumor was. The surgery will be an hour or two procedure, and I will go home the same day.

I will be getting radiation treatments for 6 weeks, starting pretty soon after the surgery. They’ll determine any further treatment based on what they find during surgery.

I’ll be spending these next 4 weeks before the surgery staying fairly isolated (since my white blood cells are the lowest they have been) and working on building up my strength, lung power, and endurance. I felt great on Thursday and Friday, and walked 3 miles (the furthest I’ve been able to go since chemo started), and kind of forgot that weekends after chemo have been the hardest. I did a lot more resting and napping over the weekend, but yesterday I made my first trip to the dump in months, and I went for a 15-minute slow jog/walk!

Yesterday, we had an outdoor distanced celebration with those stalwart few who walked with me each week no matter the weather, or came over and ran our errands and boosted my mood each week. For the party, we served ice cream, berries, and goody good sauce! Frank and I definitely felt like a party was in order! Plus we needed something to do on a Wednesday!

Over the weekend, we gathered with our kids and their partners to celebrate Mothers' Day and Suzi's birthday. Always nice to see them and hang out for an afternoon! 

Our family celebrating with yummy birthday cake and ice cream!

Our small gathering of constant supporters! My sister Janet and her husband Keven joined us too - but on zoom. I forgot to take a photo of the decorated table with all the yummy ice cream, berries, chocolate sauce, and lemonade!

Some of my latest kiln firings. These are piles of frit (crushed up glass bits) that are fired to be lacy results, which will eventually be used in a portrait to give texture and interest.

Here are a bunch of pieces of glass that have been piled in the kiln with three times as much clear glass, on a slope, to drip down and get a painterly watercolor effect that will be cut up and used in a portrait.

Here's the final results of both kilns, displayed on a light table.