What We Can Do For Each Other: Chemo, Comfort Food, Conversations, & Lainie's Smile

So I am on my third round of the “lightweight maintenance chemo” and so far, so good. There is some tiredness but no chemo brain and although I know I have been poisoned – hard to describe, as it is more of existential mood that invades the body (more on this below) than it is physical suffering – I manage to keep a positive spirit and do pretty much everything I want to do. Part of that is finding ways to help others, offering and receiving comfort food, and – here’s the news – creating a space for others to help too.

On the basic side of the “helping others” formula for living I’m pretty much doing what I like to do: I am teaching two classes, finished a new article on the future of higher education, and last night I made chicken Tikka Masala for the family. Due to the neuropathy in my fingers I have to be very careful around knives and there is some clumsiness associated with the lack of feeling in my fingertips and feet, but as long as I can do simple daily tasks and still take some joy from being of service to others as a teacher, a scholar, a friend, and a family member, I’m good.

But we can do better. I can do better.

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Yesterday Nic took me to the Clinic for blood work, or what I jokingly refer to as “the Zombie procedure.” Go ahead, take my blood if it means I can live forever! Dr. Robin admitted she enjoys “The Walking Dead” so I might be on to something … [image error]

Anyway, kidding aside, the Room of Orange Chairs was as welcoming as ever and I got to spend a little quality time sharing conversation with Jobbee (who is now down to two more treatments!) and exchange some fun banter with Jan, Monica, Ashley, and Lauren. As Nic and I were leaving was when it occurred to me that visiting that room with these good people and enjoying the talk is a lot like giving and getting comfort food – say James Beard’s version of homemade mac and cheese – on a mid-winter’s day when comfort food is just what the doctor ordered. Just being there helping others is oddly reassuring. 

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Returned to the clinic for the actual chemo treatment today and even though my platelets were a little low I was allowed to undergo it. Next week I have “off” chemo so that extra time should give me enough of a rest from the toxins to more fully recover. Hurrah! And so it is with chemo, always a biochemical balancing act wherein the forces of good (in the form of really bad poisons) fight the good fight against the forces of evil (the rogue cells/mutant ninja proteins) and the best result is not total victory (despite the Zombie procedure we cannot live forever) but a kind of glasnost “trust, but verify” chronic drama – trust the chemo, but verify the results with blood work and markers and scans – that will continue until … well, let’s just leave it at that. For now. 

As I was explaining to Monica, Jan, and Lauren, if coming here feels like comfort food, then this “lightweight maintenance chemo” plan feels strangely like a security blanket. I know it seems like I’m mixing my metaphors, but often when we are sick we wrap ourselves up in a security blanket and enjoy our comfort food from a mostly prone position. So the metaphors are not entirely mixed if you understand the context, if you visit the Room of the Orange Chairs. It is in this ironic sense – if not obscene sense – of security through poisoning that my new relationship to chemo is forged. Will I miss the chemo next week? Not at all. But when I return to it the following week, perhaps it will be with a curious sense of relief. I suppose that is at least part of what a drug habit feels like, sans the fine high. Which leads me to another crazy thought: Why can’t they lace this badass chemo stuff with, I dunno, cocaine?

Just kidding. Kids, as we all know, cocaine is very, very bad for you. So it’s not that one. But as Huey Lewis once put it:

I want a new drug 
One that won't make me sick 
One that won't make me crash my car 
Or make me feel three feet thick 

I want a new drug 
One that won't hurt my head 
One that won't make my mouth too dry 
Or make my eyes too red 

Sigh.

I guess shared talk, laughter, and a good attitude will have to suffice. Those things and what we can do for others. It’s a natural high. And it is sustainable. If nothing else, it wards off what the Beatles’ once brilliantly labeled “the blue meanies.” That doesn’t mean that good deeds and a positive attitude prevents us from having those inevitable, maybe even necessary thoughts about cancer, about our treatments and our bodies and how long we have left and the rest of the messiness that comes with it, but it does mean that we build reserves for helping us – and helping others – deal with it. 

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When I do think about it, which is fortunately not that often or for that long, it does seem odd to me to crave this comfort food, to want this toxic security blanket, both of which are signs not of a blip on my screen and a eventual return to rosy good health so much as it is a sign of a “new normal” defined by a steady reliance on drugs of mass destruction and my relationship to them and to my own body.

This is what I mean when my answer to the question people ask me these days about how I feel: “Not bad, but I know I’m not that good either.” I say it with a smile. I am still happy to be here, grateful for every day of life. Happy to be useful, and to be of service.

The difference between bad and good in relation to how I feel that matters to me is one more of an existential nature rather than strictly a physical one. I know ‘something” is going on inside of me. I know that when the chemo flows and for a few days afterward that “something” is more fully engaged and that some parts of my bodily system is being violently disrupted. The fight against the mutant Ninja proteins is on and the good guys are attacking the beachhead at bodypoint everywhere there is one. 

I can feel it. Or at least I imagine that I can. It is not painful. It is not awful. It is not making me sicker or even particularly weaker. But “something” is evident in my felt relationship to my body and in the ways I think about it. Also to the ways I think about comfort food and security blankets. And how we can think about our relationship to others. 

It is in this spirit that San, Nic, and I joined forces with Angela Trethewey, Anna Brown, and Alyssa Patmos to create a new foundation, Lainie's Smile, for information, outreach, and help for children with Venous Malformations. Why? Because we want to give back to our caregivers, and one of them you’ve gotten to know through my blog posts, Monica, has a beautiful smart delightful child – Lainie – who suffers from this disease. If you have a minute, take a look at the link above to learn more. The official “launch” is still a few weeks away, but we wanted to give a pre-announcement to share our news of its formation.

In the end it really all comes down to people and what we can do for each other. No matter what disease we have or suffer from, that always makes us feel better. I don’t need a new drug. Not when we have this …

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Back to the clinic.

Today we were introduced to Matt and his wife Annie, Matt undergoing treatment for testicular cancer and Annie 2 weeks away from giving birth to their third child. Nice people. People you don’t want this damned disease to be happening to. We chat about the usual stuff – treatments, food, cravings, neuropathy, and this wonderful clinic – and I am reminded once again of how truly lucky we are. Lucky to be here. Lucky that Nic is grown up. Lucky that these truly nice people are getting the care they need.

On the other side of my chair are Shirley and Sherry, Shirley in for treatment for advanced lung cancer and yet still dreaming of a trip to Ireland. More nice people. More talk about the usual subjects. More gratitude in my heart for the caregivers, who, despite being busy busy busy find time for each of us, find time to cheer us, find time to serve us comfort food while we are each connected to our toxic security blankets. 

A new woman takes a chair on the other side of the room but I do not catch her name. She is a young woman, African-American, and she has a port like me. The oncology nurses set to work for her and I can see that just being able to tell someone who truly cares what she is going through matters a great deal to her. The chemo drip begins and she is eased into our larger conversation as naturally as she can be. Sometimes just sharing a little honest conversation helps.

We all share the same fears, doubts, and uncertainties. We also share in the comfort food. We all help out where we can.

And our story continues … 

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