18 Years

Today is my diagnosiversary. I was diagnosed with Follicular Lymphoma 18 years ago today.

It's also the 16th anniversary of my first Rituxan treatment. I haven't needed any treatment since.  

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If you've been reading for a while, you know that I like to take this day to do some reflecting. 18 years is a long time. I've seen a lot. I remember when I was diagnosed in 2008, the accepted median survival for FL was 8-10 years. It's about double that now. So I'm not really all that special. I hope all of you who are fairly newly diagnosed will keep that in mind. If you're like me, you'll have a long, happy life ahead of you. It's hard to see that far ahead sometimes.

A couple of months ago, I was fortunate to be part of a Zoom call with about 15 other FL patients. That kind of gathering is always a special time, because you realize (or you are reminded) that you really aren't all that special -- your experiences and feelings are shared by many others. And that's a good thing. Hard things are easier when you understand that other people have gone through the same thing and come out the other side. I always feel better after a meeting like that. 

One of the other participants in that meeting said something that I have been thinking about for 18 years. We were talking about the emotional side of having FL and she said something like, "Everyone says cancer changes you, and it does. But I'm trying to figure out what it changed me into. Who am I supposed to be?"

That question -- who am I supposed to be? --always comes to me as a song, for some reason. The third verse from the song "Rainbow Connection," sung most famously by Kermit the Frog.    

Have you been half-asleep, and have you heard voices? I've heard them calling my name. 

Is this the sweet sound that calls the young sailors? The voice might be one and the same.

I've heard it too many times to ignore it. It's something that I'm supposed to be. 

That's the line that always gets me. What am I supposed to be? If you know your Greek mythology, you know the sweet sound calling to sailors is a Siren, and things don't work out too well for the sailors. There's always that bit of doubt about who I am, who I'm becoming, what I'm supposed to be doing. 

So here's the wisdom that I want to share on my diagnosiversary -- some ways to think about who we are and who we've become. I don't really have an answer to the question. But I have some ways to think about it.

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A couple of months ago, I shared a link here in the blog to an essay that I wrote called "Restoration." It was published in Intima: A Journal of Narrative Medicine. If you're not familiar with the term "narrative medicine," it's the idea that writing about health issues can be a kind of medicine in itself. Narrative medicine was first applied to doctors, who could use writing to work through some of the emotions that come from dealing with patients, especially when all of a doctor's best efforts can't help someone. The idea of narrative medicine is broader now, and applies to all kind of healthcare professionals, and patients, and survivors, and caregivers. Writing about a difficult thing can be a great way to deal with it. (I know -- I've been doing it for 18 years.)

In the essay, I wrote about how the process of repairing and restoring a tea wagon helped me think more about that question of who I'm supposed to be. I didn't put it that way exactly in the essay, but it's really the point of it all.

I enjoy restoring furniture. It's very satisfying to take something that seems useless and turn it into something useful. If you're curious, this is the tea wagon that I restored and wrote about:

   

I was proud of the tea wagon, and I was even more proud of the essay. It took me months to write, until I finally found the words that reflected what I was feeling. In want to talk more about that, because it gets at that question of who we're supposed to be.

I watch a lot of furniture restoration videos. I have a bunch of favorite restorers. They do lots of different things with the furniture they work with. Some of them are professionals who make their living restoring furniture. These are true restorations -- they work to bring them back to something close to their original state. These folks are amazing. They are hired by antique dealers and museums to work on valuable pieces and keep them from losing their value.

Other folks recognize that aren't doing actual restorations. They might change the color of the piece or change the handles on the drawers to make a 50 year old dresser look more contemporary. They might take broken piece of furniture that they bought for $20 and fix them up and sell them for $200. They're not trying to bring something back to its original state. They're making it something new. It's not restoration, it's renovation -- literally "making something new." 

My tea wagon is not a restoration. I used different materials than were used on the original, like gel stain and polyurethane instead of tinted lacquer. The small wheels on the back were not original, either -- they were put there by my father-in-law, who made his own attempt at renovation may years ago. 

And as I said in the Intima essay, I'm not sure there really is such a thing as true renovation. We can't really bring something back to the way it was in the past, not after it's been through something that damaged it. We can pretend it's the old thing. It might look like the old thing. But it's not the old thing. It has to be something new.

And that's one way of thinking about who we've become. 

Cancer changes us. There's no getting around that. We can try to restore ourselves, try to get back to who were. But it won't ever be the same. We've changed physically, emotionally, mentally, spiritually. We're someone else.

That doesn't mean we shouldn't try to go back to who we were. We're not likely to get there. And to be honest, even if I stayed perfectly healthy over the last 18 years, I couldn't really go back to who I was at 40. Things change even without a cancer diagnosis to help the process. But maybe the attempt at restoration results in good things. Maybe we eat better and exercise more and connect with people and work to change the world and try to do all of the things that we did before cancer. Even if we don't get there, maybe the attempt at restoration is a good thing. 

That's one way to figure out who you're supposed to be.

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Another way is renovation -- becoming someone new, or at least accepting that you are someone new. 

One of my more recent renovation projects was an old mahogany end table that I picked out of someone's trash. It was in rough shape. It's probably 100 years old. It had a really beautiful leather top. At least the top was beautiful at one time. When I found it, the leather was stained and torn and someone had tried to glue it back down and that just created more problems. There was no way to save the leather top. I looked into getting a new leather top, but it would have cost about $100 to get one made, and that was way too much for me to pay. (Remember, I'm the kind of person who picks things out of other people's trash.)

I took about 2 years for me to figure out what to do with it. I finally decided to fix the top by adding a kind of patchwork of veneers -- very thin pieces of wood. Lots of the veneers I used were from other pieces of furniture that I found in people's trash. I cut them to fit and glued them in place -- mahogany, walnut, maple, oak, and cherry. This is what it looked like when I was finished:

  

I like it. It's definitely "making it something new." It's a lot different from the 100 year old leather top, and (I think) a little bit fun and funky. There was no way to restore it, to bring it back to what it used to be. But I could make it into something new and different, so I did. It won't end up in a museum, but it could end up in someone's living room.

To me, this table is a second way of figuring out who we're supposed to be. 

It was damaged, taken from the trash. It was fixed with more pieces taken from the trash. I'm using this picture deliberately, because you can't see the flaws from this angle and this distance. And there are definitely flaws. I'm not happy with that back row of veneers, and a couple of them cracked, and one is a little wavy instead of flat. And that's not even getting into the rest of the piece and the bad repairs I made (and hid) in a couple of places.

So many of us hide our damage. And that's an OK way to be, too. People ask "How are you?" and we say "Good. I'm good. I'm fine." Because it's easier to say that and to smile than to detail all of the damage. The neuropathy. The irregular heart beat. The pain in the hip. It's easier to cut some veneers and glue them in place and smile and say everything is fine and hope no one notices. 

That's another way of being who we're supposed to be. We get through the day. Even that's a victory sometimes.

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There's another way of being. I'd love to say I have a piece of furniture that I worked on to demonstrate this, but I don't.

There is an art in Japan called Kintsugi, which means "joining with gold." When a ceramic piece is broken, the parts are joined back together with gold. 

It looks something like this:

 

The idea is that we don't hide the damage -- we celebrate it. We recognize that there is beauty in imperfection, and that repairs are a sign of resilience, not weakness.

And that's another way of being who we're supposed to be.

Recognize the imperfections, and then go beyond that and celebrate them.

I'll put it another way, for those of you who enjoyed the movie KPop Demon Hunters (or who have kids or grandkids who enjoyed it). The song "This Is What It Sounds Like" has the excellent lyrics:

I broke into a million pieces, and I can't go back
But now I'm seeing all the beauty in the broken glass
The scars are part of me, darkness and harmony
My voice without the lies, this is what it sounds like

Why did I cover up the colors stuck inside my head?
I should've let the jagged edges meet the light instead

Beauty in imperfection. Let it shine.

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I'm certainly not the first person to compare being a cancer patient with Kintsugi. 

I'm also not saying that celebrating our flaws is the best way to be who we are.

I suspect that most of us have been all three -- a tea wagon, an end table, a ceramic bowl. We've been restored, renovated, and celebrated. We've tried lots of different ways to be who we are supposed to be.

I suspect most of us are all of those things at the same time. One day we wish things used to be the way they were. The next day, we smile and make the best of the bad things. The next day, we celebrate the flaws and decide we'll live with them openly. A week later, we're back to wishing things were the way they used to be.

And that's OK.

I said I don't have an answer to who we're supposed to be, because I'm not sure there is an answer.

It's not a fixed state. It's not a thing. It's a process.

The important thing is, we keep looking, we keep discovering, and we keep trying. We keep moving forward, even if it's just a little at a time.

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I am so very grateful to all of you who read the blog, and who comment, and who write me emails, and who share posts, and who just remind me to keep writing and to keep trying to figure out who I'm supposed to be.

I'm looking forward to sharing more with you this year.

Thank you all. Stay well.