How I told my family and friends about my cancer

You’ve just found out you have a life-threatening disease. Whom do you tell? And what the heck do you tell them? Figuring this out has been both perplexing and illuminating.

In this installment of what I call my “living with dying” series, I’m going to share how I told my friends about my terminal diagnosis. As with all of these pieces, one size does not fit all. But I hope others might snag something useful from it.

A lot of people keep bad medical news to themselves or restrict it to a very small circle of confidants. Others just won’t shut up about it.

As for me, I have one of those expressive faces that reveals my every thought, making me a total disaster for poker, union contract negotiations, or subterfuge regarding my state of being. But these essays notwithstanding, I also have no desire to bore friends (and myself) with endless yakking about my life on the off-ramp.

There are consequences either way. Once you tell people, they will often clutter your space with their own needs or argue with you about the choices you are making. On the other hand, if you don’t tell people, then you might not have the support you need to make the journey easier and less lonely.

When I learned that I had a disease that would probably kill me, I processed it with my husband, Alec (who has since died), my siblings, and my nephews. Happily, we are of similar minds on facing up to realities and living with dignity, so this was depressing but not contentious. A lot of families do not have it so easy and may have to struggle through tougher conversations.

And then there was my lifetime wealth of friendships. When I compiled the list with whom to share my news, I was astounded to discover an “inner circle” of 62 and a larger circle of more than 100 friends and colleagues who would probably want to know and whom I liked well enough to tell.

I’ve watched others go through this. Some of my friends have handled their sharing process by handing it off to a trusted family member or friend, or through a “big reveal” on Facebook and online updates. Many people find CaringBridge helpful.

But for me, the process of generating a special list was instructive and also provided avenues for more targeted interaction and support. I was filled with gratitude to have such a robust ecosystem to rely on if the going got rough. I also realized that there were some people with whom I was no longer close, or who were on the list because I felt an obligation rather than a true bond. With a more limited life span, I felt liberated to be pickier about whom I wanted to engage.

I first reached out to the closest of the inner circle in person. Then, with the help of two friends, I put the lists into a spreadsheet; and did a questionnaire, asking people what they were willing to do (drive, cook, stay with Alec, visit, etc.). Up until early June, I needed relatively little, although since I hate to drive, I was happy for rides. And I’ve loved the company and tasty treats that have found their way to my door.

And since even friends don’t always know what to say, or want to help but don’t know how, I sent group emails to keep them apprised of my progress and gave them as much guidance as I could into what would help me, and what would make me wince and roll my eyes.

Here are two excerpts of what I shared, one from the first letter in 2023 when I told folks about the diagnosis, and one from this past October, when I learned the sarcoma had metastasized. They might give you some ideas if you find yourself in similar territory.

Because you’re my near and dear, I’m sharing this note about my upcoming travels to the tropic of cancer. Not the trip I was expecting or desiring, but there it is. ...

Given the sucky news, I’m relatively lucky in that the tumor was small and a PET scan two weeks ago showed no metastasis. However, since this cancer is very aggressive, known for dancing through the blood and lymph to colonize distant parts of the body, it must be treated swiftly and with massive amounts of chemo …

Staying in touch: My way of dealing with all this is to follow my mantra, “Don’t let the fear outrun the information,” enjoy every day as much as I can, live through it all as normally as possible, and accommodate the fact that there will be plenty of abnormality. I’m not big on effusive thoughts and prayers, various ribbons, valiant struggles/wars with cancer, blah blah. I’m tackling this more like a journalist, trying to learn what I can and have as much agency as possible as a partner in my care and treatment.

The best way to get in touch is via email, then we can schedule time to talk or to Zoom.

On Oct. 28, 2024, as the sarcoma continued to spread, I added:

At the moment, I’m fine. It’s a weird window of time, with a lot of cognitive dissonance between how I feel and what is likely to follow. I’m finding that I do best by being curious and interested in the science, and by dealing with stuff pretty directly. Please do not cluck over me or treat me as though I were suddenly made of glass.

To that point, it worked out fine.

But a few weeks ago, the ground suddenly shifted. Within a few days, I went from living my odd but largely normal life to gasping for breath — from functional to unable to move more than from one room to the next. I needed oxygen and oxycodone and someone with me pretty much all the time.

So my June 16 note was tougher:

I suspect my relatively buoyant journey so far kept both you and me in blissful denial. But the illness is following its usual course, and this cliff in my health came up very suddenly. I think we are indeed arriving at the terminal.

So, here’s my rudimentary but pleasing-to-me plan — subject to change:

In the next three weeks, give or take, I am hoping to finish some thinking and project work that is important to me.

Please do not bombard me with calls or texts — or demands to visit. If you want to be in touch, send an email. Either I or some personal minion will respond.

My brother will be hanging out with me a lot this summer, and my sister in the fall, with other family and a few friends in the mix. No doubt we will appreciate some help, but we’ll have to get back to you on that.

My hope is to have a relaxing last number of months getting stuff in an order that suits me and spending the time I need with those who are closest to me. And to feel my lovely home and community surrounding me. Whether or not we get together, your presence will be felt.

This feels a lot harder, both for me and for them.

My friends have been such wonderful support and sustenance. Yet at this moment, when they want to see me more, and when we need more tangible help, I crave to declutter my closets — and my calendar. I feel like I need time and space, just to be with the gentle pleasures of home and family and to wrap my life around me. I’m hoping for a good balance, and for the best.