Good timber does not grow with ease,
The stronger wind, the stronger trees,
The further sky, the greater length,
The more the storm, the more the strength.
By sun and cold, by rain and snow,
In trees and men good timbers grow.
— from Good Timber, by Douglas Malloch
A very happy birthday
The first time I cried in the past week was after I posted a Facebook birthday fundraiser for the National Leiomyosarcoma (LMS) Foundation. As I’ve shared before, research is woefully lacking for LMS, resulting in studies that commingle many of the over fifty types of sarcomas, all of which behave differently – rendering the studies inconclusive. The most effective of drug therapies have a mere 30 or so percent response rate.
Ten minutes after I posted the fundraiser, I had met my goal.
As of this writing, we’ve exceeded that goal by 1,391%. I don’t know that I’ve ever beaten a financial target by that much (a good reason to cry, though that’s not why I did). Friends and family from around the world and all stages of my life, as well as people I don’t even know, kindly and generously gave toward research for a disease with limited market value. Even though LMS makes up only 0.2% of cancers, the impact is still significant — 13,040 people in the U.S. alone are expected to be diagnosed in 2018, with 5,150 deaths projected in the U.S. this year.
The second time I cried was yesterday, while waiting to see The Godfather (as if I weren’t already puffy enough from chemo), when Sacha shared with me a video compilation of messages from friends and family wishing me a happy birthday. I don’t know who you guys were talking about in the video, but I’m flattered to think that even some of it might be true (except that part about me as a kid leading the charge amongst my cousins in creating an illustrated book about butts – that part I know to be true).
The third time was this morning when I went out for a (short and slow) run — and this song came on. The video is kind of distracting for me, because it features the girl who throws up at the beginning of Pitch Perfect, but I’ve always loved this song and I hereby dedicate it 1984-style to my husband.
Two takeaways: one, that I have been inexplicably blessed with the best, kindest, most eloquent of friends and family. Two: that anything is possible.
Above: my niece and I celebrating our September birthdays together (photo credit to my sister-in-law Amy)
I was never one for making a big deal about my birthday, but this year, I saw it for what it was: a celebration of life. I’ve made it for a whole 47 years. Cheers to that!
“So you finally realized that you’re on chemo,” the Godfather joked when he reviewed my latest symptoms. This past round was rough. I’ve been remarkably fortunate in how well I’ve tolerated the chemo to date – 24 infusions of high toxicity – but it did finally catch up with me.
Two weeks out from my last infusion I am finally feeling better, and did my first run in a while three days ago. Most octogenarians would have passed me in a race (full disclosure: this happened to me in an actual race even before I had cancer), but it felt good to know that I was telling my legs to move, and that they were actually doing it.
Based on our last visit, where the Godfather shared that there was only about a 20% chance that we’d see a major response from the tumor after chemo, I was expecting a report of stable disease. And that’s what I got: after this past four rounds, there wasn’t any change in the tumor. We had hoped for some further reduction in tumor size (I guess my hyperthermia experiment wasn’t a huge success), but yay for no spread to other organs.
And, as anticipated, the next step is the surgery, where we harvest a bunch of organs. That is likely to be in early October. Between now and then, my job is to get as strong as possible so that I can recover well from a long and complicated surgery. As a refresher, the organs in play are the liver, right kidney, inferior vena cava (the primary vein in the body) and right adrenal gland.
Now the part I wasn’t expecting was this: based on the location of my tumor, it is not likely that the surgeon will be able get wide negative margins – that is, that we will be able to remove the tumor with at least 2 mm of disease-free tissue around it. That means that there is likely to be cancer cells left in the body, which is in turn almost guaranteed to result in recurrence. So, it is looking like I will need to do more chemo 4-6 weeks after The Harvest, in hopes of killing the remaining cancer. That’s going to be kind of rough, with a bunch of missing organs.
I’d just started growing some very confused hair, the texture of a 14-year-old boy’s mustache if he had inserted his finger into a light socket. It’s growing in a George Costanza male pattern baldness formation, but it is hair nonetheless. So now I’ve resigned myself to the fact that I may sport the Yoda ‘do for a while.
And you are…?
Speaking of hair, what’s been amusing about this experience is how confused people are about my appearance. When I’m feeling well enough to be out and about, I don’t look particularly sick. I’ve gotten almost okay at putting on fake eyelashes for the odd outing.
It’s confusing for people. I can hear them thinking, is she…transgender? A Tibetan monk (not helped by the fact that I have devolved from wearing elastic waistbands to wearing no waistbands at all)? Heaven’s Gate?
I’ve reduced these findings to a few basic formulas:
- wig + false eyelashes + lipstick + dress = drag queen
- no wig + no makeup + flowy sack dress = Hare Krishna
- no wig + no makeup + bald husband + Nike sneakers = cult member
The combo I rock most often in public is:
- no wig + fake eyelashes + earrings = cancer patient
At home, it’s Hare Krishna all the way.
The bright side
I’ve had a lot of infusions, and it is amazing to me that I haven’t done a single one alone. When I go to the infusion center, or as I like to call it, the Cancer Country Club (CCC), I am usually accompanied by one or two friends – often, someone who also gets treated there. Our little group is a known entity at the CCC, with staff members asking after people in the crew. And infusion nurses – they’re just the most incredible people.
The CCC is the only place I’ve ever been a regular – where everybody knows my name, where I have a special parking code, and where we actually laugh a lot. It would be just perfect if I weren’t having toxic drugs pumped directly into my heart. To my CCC crew: I couldn’t have made it this far without you. Your grace, your friendship and your strength have carried me.
Every morning when I wake up, I have a routine. First, I make sure my brain is wired the way I need it to be, so I meditate for about 15 minutes. Then, I pray (this coincides with my reluctance to actually open my eyes in the morning). I start by giving thanks for all that I have – my friends, my family, the opportunities I’ve been given, the resources that I have, the chance to do interesting work, my relative health despite the circumstances – and every single day, I stop there and think, holy crap – I have everything.
Just to balance things out though, click here for some kind of depressing research about alcohol.
Some things that bring me joy:
- Performing activities like scrubbing the fuzz off of our garden cucumbers while saying things like Hulk-style, like, “Voldemort clean fuzz off cucumbers!”
- This brilliantly written article about Gwyneth Paltrow’s Goop
- Exit West by Mohsin Hamid – he was apparently at McKinsey when I was, and I am dying to see if his decks were as beautifully written as this book (thanks, for sending it, SW!)
- Meredith Toering’s Instagram feed – Meredith works at an orphanage in China that cares for children who need lifesaving heart surgery, and is nothing short of extraordinary
- My fruit and vegetable garden
The bar for experiencing joy is exceptionally low if you allow it to be. That in itself is cause for celebration.