Checking in, Checking out, Checking tyranny

An update on how I’m doing with cancer, a defense of doing nearly nothing and a nudge to defend democracy Saturday.

I’m going to write short today.

At least I’m going to try.

And I appreciate all of you who have read my looooonnnggger posts.

Today, I’m sharing an update on how I’m doing with cancer, a defense of doing nearly nothing and a nudge to defend democracy Saturday.

Update: I’m doing okay.

I remain elated and relieved that my chemo seems to be working as I try to heal from appendix cancer.

But things aren’t perfect.

I’ve experienced growing discomfort as the chemo rounds advance. I’m hooked up to chemo infusion number nine as I type this. The poisons are flowing into the Port of Frauenheim.

The main challenge recently has been neuropathy in my fingers that’s lingered longer and longer with each infusion. I’m feeling tingling, numbness and pain in my fingertips as the medicines tackling cancer cells also do a number on my nerve cells. There’s a risk that one of the chemo drugs I’m on–oxaliplatin–can cause permanent neuropathy.

But the tingling faded a bit in recent days. And I felt 90 percent myself prior to the infusion.

Plus I had other good days this past two-week cycle. I felt well enough, for example, to be a care partner besides a patient.

My buddy Art came down with a case of appendicitis. (Am I now a curse related to appendix issues?!)

I fed Art’s cats and visited him in the hospital. Nice to be a visitor rather than someone needing the ER myself!

In fact, I love the visitor pass photo I got that day.

Don’t I look like a character in a spy thriller?!

Watch out, Jason Bourne. Here comes the Frauenheim Identity (Badge)!

Not that I did much to support Art. Mostly hung out with him in the ER hallway and later his hospital room. But he is doing much better.

***

I’m also happy to have some clarity around my overall cancer treatment plan.

Last week meant some tough decisions. I was trying to balance basic survival against future quality of life. Especially the health of my fingers.

Ultimately, I talked to my cancer team at Kaiser, and we’re reducing the level of oxaliplatin by 20% this time, and probably in round 10.

I also got clear that we’ll probably stop the oxaliplatin altogether at 10 rounds and have the other chemo and drugs by themselves for rounds 11 and 12.

It’s a relief to have a plan.

***

Another reason I’m doing okay–probably the main reason–is that I continue to be blown away by people supporting us. Loving on us.

Teresa Iafola brought homemade chicken soup and tea.

Martina Lauchengco Jones gave me the biggest Ball jar of chicken soup I’ve ever seen--again, homemade. Despite its volume, we quickly gobbled it up.

***

More recently, our dear friend Helen Nadel arrived from Utah and occupied our kitchen for several days. She made steak. She made a massive vat of chicken broth. She made chicken soup, a tasty salad and lastly a melt-in-your-mouth beef stew.

Unbelievable.

Helen is the executive director of Summit Community Gardens + EATS, a Park City, Utah nonprofit focused on community gardening, food education and food security. She’s busy, busy, busy.

And she spent her vacation time working her butt off in our kitchen for my health.

As a bonus, Helen served up oxytocin rushes in the form of her pooch, Skylar. This is the service-dog-in-training that Helen and her husband Joel have been raising for about a year. Skylar may become a companion for someone who experiences post-traumatic stress disorder (PTSD).

I don’t think I have that mental health challenge exactly. But as someone who’s wrestled with fear during cancer–and panic attacks at different moments in my life–it was awfully nice to have Skylar cuddle up with me.

I also had Joel close to me this week. He couldn’t stay as long as Helen. But both he and Helen joined Rowena and me to talk through the chemo options with Kaiser folks. I introduced Joel as my Chief Fitness Officer, given that he’s completed an Ironman race and is a fitness inspiration to me.

But I expanded his title to include Chief Analytics Officer, because he did such a great job helping to break down and clarify the treatment options. He reassured me that my reasoning was solid, which gave me confidence to proceed.

And there are still more Joels, Helens, Teresas and Martinas. Pretty much every day someone checks up on me or offers to bring food. And this is on top of the generous contributions to a gofundme that is allowing me to focus on healing, not making money this year.

***

Increasingly, that focus on healing is about doing veeerrrryyyyy little. Chemo-related fatigue has me spending many of my days in a dozy, resting state.

In other words, I’ve been checking out.

On the one hand, this inactivity and tiredness is maddening. I often don’t even have the energy to spark up conversations with Rowena or others–and talking is one of my favorite activities!

But as Joel and other pals have pointed out–remaining silent is an act of self-care. I’m choosing to preserve my energy. To heal.

This isn’t to say I’ve become entirely passive. My son Julius pointed me to research showing that exercise helps cancer patients not only with their quality of life but also survival rates. Julius set up a Google Doc for tracking exercise and nutrition–and I’m working on walking twice a day, if not doing more rigorous activities like yoga.

But apart from the physical movement, I’m largely taking it easy. And I’m largely fine with this. As I wrote earlier, as a society I think we put far too little emphasis on leisure and free time. We literally work ourselves to death.

When I first got diagnosed with appendix cancer, I talked about heading into cancerland for a year-long adventure. I remain hopeful that this adventure will be as a visitor only, rather than a permanent resident. But I can’t deny that cancer has come with gifts. Revelations mostly, about how good human beings can be, about how commercial concerns can warp our perceptions, about my own tenacity, about suffering and how to make sense of it.

***

I think my bout with cancer and chemotherapy has helped me sense of the suffering of others in our nation and world more acutely. And to want to do more to transform this suffering into something closer to peace and joy.

In his book, How to Fight, Thich Nhat Hanh writes that:

“When someone hurts us, our first reaction is to want to punish or hurt them. But when we understand that others are already suffering, we don’t want to punish them anymore. Listening to the suffering inside of you and inside of the other person allows understanding and compassion to be born. When compassion in born in your heart, it begins to heal and transform the anger and suffering in your heart and in every cell of your body.”

I’m feeling for our nation’s woundedness right now. The deep divisions. The sense of many Trump supporters that they’ve been left behind. The legitimate fears on the part of marginal folks.

At the same time that I’m trying to feel it all, I think we need to protest the tyranny unfolding today in the U.S.

It is like a cancer that is spreading.

We have to articulate a more promising, inclusive future. We have to resist it publicly. As David Brooks just wrote in The Atlantic, we can prevent dictatorship and “strongman” leadership from taking root here.

And we can protest from a place of love. Of compassion.

I’m going to be out at the San Francisco version of the No Kings protest this Saturday. I may not last terribly long given the fatigue I feel most days. But I want to stand up for democracy and a better, kinder society.

Will you join me?