People, not meat

Lying on the bed of the CT machine, after having been offered a blanket, I wondered why they kept the rooms so cold.

“Ah don’t know WAH they do it,” said the scan technician in an endearing Texas drawl. “Cause we’re PEOPLE, right? Not meat.”

It’s spring break in Houston, which explained why I didn’t have to wait long for my blood draw, or even for my scan, and my appointment with the Godfather happened within an hour of the scheduled time. That meant that I didn’t have wait long for the good news: I’m still NED! Because I’m people, not meat, baby!

The Godfather said that everything looked great, he heard that I did a half marathon (false: it was only a 5K), and that he would see me again in three months. We ended the consult with him patting my hair as if I were a collie, and his signature healing hug.

Our flight was delayed so we had some time to visit the Houston Museum of Fine Art, where there this floor to ceiling video of kittens drinking milk was on loop.



I recently transitioned from calling myself a cancer “patient” to a “survivor.” It feels pretty great to say that. I have hair now, so people don’t generally know that I have this haircut not because I’m emulating Jim Carrey in Dumb and Dumber. I drive kids to practices. I make dinner. I work.

Current hair situation

Some things are different from before the diagnosis: I feel like I have a full-time job making self-care a top priority – being diligent about what I eat, and making time for sleep and exercise. Also I’m in menopause.

I also feel an enormous weight – or a compulsion – to make things better for other patients. I don’t know if it’s survivors’ guilt – I mean, I don’t think that I feel guilty, but I know that I’m incredibly lucky – but I spend a lot of time thinking about how I should channel my energies. Some of you may have seen that I wrote an article for Rare Disease Day – these lessons really apply to cancer at large. There are so many things I want people to know. I mean, if you grew up in the 70s like I did, you know very well that on the off chance that you catch on fire, you should stop, drop and roll – but if you’re diagnosed with cancer? How do you even start?

I’m still figuring out the best way to help advance research. This is partly self-serving of course. My surgeon is doing some interesting work and I set up a fund at UC San Diego to help support it. But I also want to diversify the efforts that are out there too, because we do need to do a bit of throwing things on a wall and seeing what sticks. At the same time, because I don’t have control of these organizations, and some involve large amounts of bureaucracy, I don’t feel I can fully optimize my efforts. So do I start my own organization (not my first choice – I have enough going on already)? Still figuring all of that out.

The bright side

In the months following my surgery, I started suddenly and mysteriously experiencing moments of euphoria. I’d be driving in a car on the way to pick up the kids, for instance, and the sun would hit me just right, a song would play, I’d catch of whiff of the native plants in the canyon and suddenly feel an inexplicable wave of joy. I’d smile like an idiot by myself in the car, just like people do in the cancer movies, just happy to have sun and wheels and plants. (Note: this does not happen all the time.)

I’ve also started deciding to just carpe diem every so often. The old, sensible me would have opted to tidy up the house or buy groceries in a spare hour and a half before having to drive someone somewhere. The new me goes on impulse to vintage flea markets and buys French engravings from a collector who’s downsizing. Never seen me at a business school reunion? I’m going to the next one! My 30th high school reunion? Wouldn’t miss it!

So what’s next? Three more months of doing everything. Just one of the benefits of being people, not meat.

Oh so soft and cuddly

The eye of the tiger

What I thought recovery was: a few days of misery, a week or so of discomfort, followed by days lounging around in a fuzzy robe in soft focus with good lighting and spa music…and then mostly back to normal.

What it actually was: a long, hard road that entailed a lot of groaning, weeks of not wearing anything that would be typically described as clothes, and spending a lot of time like a cockroach on its back. I used to think it was dumb that cockroaches pawed the air desperately on their backs, but turns out that I did the same thing. Also, guess what – you need abs to do just about anything!

During those cockroach days, I’d sleep. I’d eat. I’d paw the air. If someone would kindly pull me up, I’d walk, hunched over, slowly in circles around the house. Walking around the house in circles can be a little boring, so I listened to a lot of podcasts.

The hardest part was not being able to laugh. When I got a little stronger and could sit up for longer periods of time, I started watching some TV. But I didn’t want to watch anything that was depressing or stressful (you know, missing an adrenal gland and all), so I couldn’t resist watching a few episodes of Crazy Ex-Girlfriend — which resulted in laughing followed by crying from pain. On more than one occasion, family members had to be banished from the room in order to prevent me from popping myself open. I tried my best only to have boring conversations.

Then came the Rocky Balboa days. I started being able to walk outside, for longer and longer distances. I started being able to stand up a little straighter, and raising my arms a little higher. I developed a technique using my legs as levers for getting myself out of bed. I’m still pretty tired, and standing for long periods of time is tough, but healing, I’m told, takes a year.

On November 25th, almost seven weeks after surgery, I tried my first run. It was so slow – over a 17-minute mile – but it was a comeback run. I might have cried a little. And best of all, I could watch a Trevor Noah comedy special and laugh that all I wanted.

It’s beginning to look a lot like Christmas

I waited to post an update until my next appointment at MD Anderson, since next treatment options were on the agenda. UCSD’s pathology team had done an analysis of my tumor, and determined that they got clear margins. Only 20% of the tumor was dead. But The Godfather had said that more than likely, I was going to have to have more chemo after surgery – to kill off any micro-metastatic disease – disease that we can’t see yet.

When I saw The Godfather, he started with his usual healing hug of course, and then said that he saw on the scan that I had a very pretty surgical site – he showed me on CT image how I had a perfectly symmetrical elliptical shape made out of staples. I guess I was happy about that – good job on internal aesthetics, surgical team!

Then he said that everything on the scan looked perfect. No sign of disease, and I’m healing up well. And – no more chemo.

You guys!!! This is exactly what I wanted for Christmas. It’s a Christmas miracle!!! I’m going to be able to enjoy the holidays without infusions hanging over my head, and getting to keep my Monchichi hair!

Monchichi about to make an appearance at her first public event…getting tired 30 minutes later.

More than PhD, MBA or Mrs…the initials I’ve wanted more than anything are NED — No Evidence of Disease. I am currently NED!!!

Now, this is actually mixed news. It’s good news for me, because I don’t want to have any more chemo. But it does mean that the drugs didn’t work as well as we had hoped (only 20% of the tumor was dead). Which means that if in the future we have to treat it again, we don’t have a silver bullet in hand. But whatever, I’m not going to worry about that now…I have presents to wrap!

Me and The Godfather — those pins hurt patients during the healing hugs. Worth it though!

Going forward, I’ll have CT scans and checkups every 90 days – like a quarterly board meeting – and regular appointments every 4 weeks to flush my port, which we’re keeping in for now.

Speaking of Christmas, my mom has been at MD Anderson getting treated since October. She was initially scheduled for surgery, but a scan upon arrival showed another mass, which negated the benefits of surgery. She’s been having chemo and radiation, which she’s been tolerating reasonably well, and has booked a flight home on December 24th – just in time for Christmas!

The bright side

The other day, I was standing in line at a store. The woman behind me said that she liked my hair, and asked if there was a reason that I had it that way. It was clear to me that this wasn’t about liking my hair, so I confirmed for her that I had gone through chemotherapy. She said that she had done the same, pulling off her cap, but that she didn’t have the courage to go out without a hat yet. We chatted briefly, and then she asked how I was able to stay so positive. She said that she was cancer-free now, but that she was depressed and feared recurrence and death all the time. She saw a special light, she said, and she was wondering how I managed it.

I was a little taken aback since the only special light I knew of came from the liberal use of moisturizers and a radioactive glow from treatments, but I shared my approach to staying alive, which is to control the things that I can – focusing on mental health, spiritual health, physical fitness, and watching what I eat – and living one day at a time. I don’t think I said anything useful, or anything she didn’t already know, but I gave her my number so that we could stay in touch.

Afterwards, I realized why it is that I’m doing so well. It is because I have been incredibly blessed with a community of friends and family that showed me, day in and day out, what it means to be loved. She didn’t tell anyone about her cancer, and suffered through it alone; I told everyone, and never felt alone. I am fortunate beyond measure to have a husband who loved and cared for me from the pixie and Voldemort days through surgery and now the Monchichi phase. I have a family that is loving and supportive. I have friends who have met my every need and spoiled me with luxuries. I have colleagues who stepped up and delivered when I was a cockroach on my back.

You did this.

I am here and well today because you made sure that I was not forgotten even when I was housebound, and that I felt loved at a time when it would have been easy to fall into despair. You prayed for me, you cried with me, and you fed me.

I read a book recently called Radical Remission, which is a study into thousands of cases of cancer patients who, despite having exhausted their medical options, were able to become cancer-free. These aren’t studies of miracles; on the contrary, there were nine common behaviors that these patients worked very hard at implementing. One of these was having strong social networks – being loved. The Godfather says it’s the secret to why his patients live longer.

There are many terms that people use to describe themselves after treatment: in remission, cancer survivor, cancer thriver…I haven’t yet figured out what’s right for me. For now, I’m just going to say that I’m lucky.







Hello from the other side

When I turned on my phone, it lit up with hundreds of notifications. It wasn’t until today that I could scroll on a phone without feeling nauseous, so I am working my way through all your messages and comments, and just wanted to say thank you — thank your for all your prayers, for your encouragement, for your love and support. I was carried by it all, and it made me feel invincible. And now, after having demonstrated my pee and poo skills (strangely not endorsed on LinkedIn), I have been liberated from the hospital and am recovering at home!

Big Dig recap

You pretty much got the play by play thanks to Sacha during the surgery, but I thought I’d do a quick Q&A here too. Feel free to post any other questions and I’ll answer them!

How do you feel about the outcome of the surgery?

As Richie posted, yay liver!!! Thrilled to have a gall bladder too, and the grossly clear margins are promising. The surprise was learning that the surgeon actually found and removed a 1 cm tumor on my stomach, which he suspects is GIST tumor (pathology needs to confirm). These tumors are even more rare than LMS tumors and occur about 4-6,000 times per year annually in the U.S. But, he said that my prognosis will be primarily determined by the LMS tumor, and that the maybe-GIST has a low likelihood of recurrence particularly when they find it early.

Were you a little scared that you might die?

Yes. Like 5% scared. Sacha said that he was more like 15% scared. I had one meltdown before surgery entitled “I Don’t Want to Die,” where I just needed to put it out there in case anyone was wondering. After that, I might have hugged my family a little tighter, teared up a little more at everyday things, and held off on ordering a few items that were on sale because who would be able to return them if I died, but mostly I was ready to do this.

During the surgery, were you able to astral project and haunt your children at school as you had hoped?


What’s recovery been like so far?

Far worse than the pain was the debilitating nausea, which was constant for the first few days. I wasn’t allowed food or water on days 1 and 2 — and was only allowed to have a mouth swab, which is a small sponge attached to a lollipop stick, every so often. I spent what felt like an eternity shaking, unable to open my eyes, and feeling sick. I did a lot of meditating and praying to pass the time. The narcotics made me really ill (vomiting after having your guts removed: not recommended), and the anti-nausea meds didn’t really help, so I started refusing pain meds.

Since they had operated on my stomach and manhandled my intestines, they wanted to be sure that both were working before allowing me too much food or liquid. Thing is, my digestive system is probably the most efficient thing about me, and I had a chat with it beforehand just to say, hey, step it up soon after surgery — so even though I could feel that peristalsis was starting, no one else could.

Not helping the situation was the fact that we were put in an overflow ICU unit, which was basically a 9×9 room with no windows or bathroom and little room for the bed and equipment. It’s meant for quick interventional radiology procedures — not for long term patient care — and it was so tight that the nurses often had trouble maneuvering around the bed to get to all my tubes. We couldn’t take out my catheter since there wasn’t a bathroom nearby.

Things got a little better when I was able to have tiny sips of water — a cup to last me a day. They were even better once I could have clear liquids (I had a broth which I later confirmed was disgusting, but the first bowl I had tasted divine, in contrast to sucking on a sponge), and was moved into an actual patient room. I continued to feel nauseous since I was getting pumped full of medications on an empty stomach. Please, I begged them, if I could have just one grape, or a slice of banana, I would feel better.

Once I was allowed soft foods, things improved immensely. The nausea was drastically reduced and I started taking IV Tylenol. Now, I just have pain, which in contrast to nausea, is really no big deal (except when I cough — ouch). And of course, being freed from tubes and wires attached to the nine holes they made in my body was a huge relief.

What does your incision look like?

Find the bottom of your sternum. Now start drawing dark purple a line about 1/2 inch thick down to your belly button. Then, make a rounded 45 degree angle toward the right, and go straight all the way to the right hip. Instagram-ready!

What did the tumor look like?

An uncooked pork roast. It completely encapsulated my kidney and part of my inferior vena cava (IVC), so it was impossible to distinguish between organ and tumor. The total length of what they took out was 15 cm. The graft on my IVC is a piece of plastic pipe that looks like the accordion part of a straw. So I guess technically you could say I got plastic surgery.

How long is recovery?

Full recovery apparently takes a year, and I’ll feel about 80% at 6 months. Fatigue is the primary long-term side effect as my body figures out how to work with a couple of missing organs and a grafted inferior vena cava. Oh, and I’m on aspirin for life, to prevent clogging of the graft.

Does it still hurt?

Yes. Especially when I cough.

This is a long post. You must feel great!

Nope. This took me all day to write.

What do you hope happens next?

Since I’m the proud owner of a full gall bladder and 99.5% of a liver, I’m emboldened to ask for more. I pray boldly for the pathology to show no visible cancer left behind. I hope for a miracle that eliminates the need for me to go back on chemotherapy right away. I want to be well enough take full advantage of what a friend described as my membership in the Second Chance Club.

Moving the needle

I had a chat with my surgeon about how to advance LMS research. We don’t have drugs that meaningfully affect the tumors; we don’t understand its causes or why it is so apt to spread.

It sounds like there are three main obstacles: money, people, and collaboration. For instance, he has a lot of data — but he doesn’t have the $40-60K per year to hire an analyst to actually input that data so that he can actually start asking important questions about LMS. Some institutions are reluctant to collaborate and share data with other organizations — something that is critical to a disease as rare as LMS where you’ll never get a big enough concentration of patients to conduct a meaningful trial. So things labor on with poorly constructed, commingled studies.

It seems like there are many solvable things that could at least get us moving in the right direction. So I said that after my belly closes up, we could talk more about ways to push things forward.

The bright side

Let’s start with the obvious: I’m alive. I’m home.

I’m so grateful to my surgical team for doing their best and for not eating Subway sandwiches over my open abdomen despite the very long procedure.

I’m amazed by the nurses who carried me through with I’m imaginable care and grace: the nurse who sat and held my hand at night when I couldn’t even figure out what I needed to feel better. The nurses who came in repeatedly without complaint to move and rearrange tubes so that I could rotate myself in bed just a little. The Mark Zuckerburg doppelganger who advocated for me to get oral potassium pills when the IV infusion burned my veins. The young A-Rod look-alike who happy-danced for my amusement when we found out I was getting a real hospital room. Nurses, I salute you.

My friends and family: you lifted me up to God until he was like, alright, alright, shut up already, she’s gonna be fine. You waited on updates. You sent along encouragement. You took care of my kids. You lit up the world with your positive thoughts and healing energy. Thank you.

I was home after just four days — well before the expected six to ten. I am so thankful to be recovering at home with my three untrained nurses. They’re strong enough to pull me up from a reclined position, and that’s good enough.

It’s been a long time since I’ve been praised and high-fived for passing gas and bowel movements. I’ll take it.

This morning, I got my two teenaged girls to color with me. Check out the coloring skills of a high school sophomore — she made mine look preschool:


Yesterday, from the hospital window, I saw this sunrise:


And then from home, I saw this sunset:


Hello from the other side.

Last day with a full set

By this time tomorrow, I will be lying on a table and a surgeon will be brandishing his scalpel. I imagine that it comes in a neat little robin’s egg blue box like the one I had in college. I hope that his, in contrast to mine, is properly disinfected.

By this time tomorrow I will know what it’s like to have an IV in my neck (Right??!? Apparently they can’t use my chest port since they need a way to get high volumes of blood in fast, in case they need to.) and possibly try to astral-project myself into the kids’ classrooms while I’m under anesthesia, just to say hi and pay attention because I’m watching you.

But today, I’m getting ready. I’m going to do the last run I’ll do for a while, eat a giant breakfast, and then embark on a bowel cleanse. I’m setting expectations with the organs that are staying that something unusual is about to happen, but that they need to get a grip and step up. Also, I need to figure out how to get Post-It notes inside with friendly reminders like “Don’t forget to put the intestines back!” and “Bowels are like vowels — they’re important!”

So just a few things I wanted to pass along. First, thank you for all your pre-surgical messages of encouragement and prayers. I’m sorry if I don’t get to respond to all of you in advance, but know that I receive and treasure your messages. I can’t imagine that anyone could go into this in a better situation than I.

Secondly, thanks for your concern and requests to be notified of updates. Sacha is going to update the blog tomorrow when I come out of surgery. I would expect an update maybe around early to mid-evening Pacific time, since we’re told to that the surgery will run all day.

Finally, I’m going to borrow a phrase from a friend and say that I send you all oceans of love.

Who needs those organs anyway

The Big Dig

I’ve got a surgery date: October 9. In less than two weeks, I will weigh about 4.5 pounds less.

It’s an auspicious date. Historically, on October 9:

  • My maid of honor got married
  • Charles the Bald was crowned king of Lotharingia
  • Slavery was abolished in Costa Rica
  • Laura Ingalls was the first woman to complete a transcontinental flight (are they sure about that one…not Little House on the Prairie?)
  • Kathy Sullivan became the first US woman to walk in space
  • The Dow Jones Industrial Average closed at an all-time high

During my last surgical consult we talked about lots of things…blood transfusions (hoping I won’t need one), epidurals (too risky to give me one), recovery (long), and Heaven’s Gate (potential Halloween costume if in Rancho Santa Fe). The surgery should take up the good part of a day.

They won’t know until they open me up exactly what they’ll take out, but the definite ones are the kidney and adrenal gland; possibly half the liver, gall bladder (that was new) and then there’s the potential reconstruction of the inferior vena cava. I don’t remember if I shared this before, but I actually have an extra one — an inferior vena cava — apparently awaiting 47 years for its moment of glory. We don’t know yet if the extra one is actually going to be helpful, but I like to think so — why else would I have one?

The surgeon told me not to eat anything after midnight the day before surgery, but then his nurse called to tell me that he had ordered a “bowel prep” the day before, which means no eating after breakfast the day before surgery, and 300 ml of liquid magnesium citrate for lunch. I enjoy eating so much that for the removal of my wisdom teeth I opted for local anesthesia so that I could optimize my food intake the day before (a story for another time). I am not very nice when I’m hungry, so avoid me the day before surgery.

I’m ready. I’ve been waiting a long time to get to this point, and even though I’m likely to have chemo afterwards, it’s a big milestone. Sacha asked the surgeon to take pictures of the tumor — so we can, you know, include it in our Christmas letter.

In other news

My mom has also started being treated at MD Anderson. They weren’t able to remove all the cancer in her first surgery, so now, since there’s been growth, she needs to decide whether to have a second surgery to remove the lung completely, or to head down the radiation / chemo path. Each choice has its own benefits and drawbacks. Once again, we’ll both be enduring major medical treatments at the same time.

Another strange development is that in the course of just a few months, there have been three other people in my extended family, and a former classmate, who have been diagnosed with cancer. I don’t know if that’s unusual but it seems like a lot. Especially because I’m always on the lookout for other bald people free of eyelashes and eyebrows, so I can share a knowing look like we’re in some kind of fight club, and I hardly ever see them.

I’ve been keeping busy. I work out with the diligence of a person training for a race, and I’m trying to get my work wrapped up and in a good place before the 9th. I go to the kids’ games and events whenever I can. If you had asked me years ago if I’d be working during cancer treatment, I would’ve said no way. But I don’t get stressed about work anymore (turns out, cancer is more stressful than work). It’s a welcome distraction, and a good way to keep my brain tuned up while it’s fighting the brain damage from the chemo.

The bright side

I went to see my niece in a kindergarten soccer game last weekend, and it delightful. It was like watching foosball…or as my brother said, foosball where the handles are loose and you can’t quite control the players. At the end, the girls didn’t care who won or lost, and after shaking hands the sea of red and purple uniforms commingled and they were alternately holding hands, spinning around and hugging one another, like they were doing the Virginia reel, which I actually learned how to do in a Virginia public school.

My best friend from elementary school surprised me by mailing me a package of notes I wrote in the early ’80s and shoved into her locker. I appeared to be a prolific note writer, favoring cursive writing, obsessed with something we were plotting called “Project Boogeyman”. I am 100% sure that these notes were composed during class, which makes all the more remarkable the fact that I now possess a college education.

Separately, a friend from high school also sent me photos of notes that I had written in the mid-’80s. As my kids would say, they were very “cringe-y”. I never would have survived anywhere outside of that science high school.

In my last post, I linked to this article in the New York Times about Gwyneth Paltrow, which I read no fewer than ten times and gleefully quoted and sent to some of you, possibly more than once. So you won’t be surprised to know that when I received a message from the author — one of my writing idols — I nearly fell out of my chair (I didn’t was because I was in a car, secured by a seatbelt). Turns out she is the cousin of one of my business school friends, who shared my blog with her, and in an ultimate display of grace and eloquence, I responded to her: “Eeeeeeeeeeeeeeeeeeeeee!!!”

Which is what I’m hoping I’m going to say after the surgery.

Good timber

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!

The harvest

“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.

Play it again, Sam

Back on the plane again after a full day at MD Anderson. I had back-to-back appointments, each of which took longer than anticipated (with instructions not to eat before the scan), so by the time we finished up, around 3 PM, people’s legs were starting to look like more and more like chicken drumsticks to me and I was gnawing on my arm. We had 15 minutes to scarf down some sandwiches before hopping into a car to the airport.

I was eagerly anticipating this appointment because I knew that my surgeon and The Godfather had had a few exchanges on my case, and The Godfather had presented my case at MD Anderson’s equivalent of a tumor board, a cross-disciplinary team of sarcoma doctors.


The report

After two cycles of the new drugs, gemcitabine and taxotere (gem/tax), we have once again stable disease. The tumor is about the same volume overall as it was last time, with some promising indicators: the perimeter of the tumor looks darker, which may indicate necrosis (decayed tissue), and there are a few darker rivulets throughout the mass. No evidence of spread to other areas of the scanned (chest to pelvic) area.

This is similar to what we saw after two cycles of the previous drugs: overall volume of the mass was the same, when you balanced out the tumor growth with areas of necrosis. After four cycles of the previous drugs, we saw no change, so switched over to gem/tax.

The path forward: two more cycles of gem/tax, and then another trip to MD Anderson for scan and assessment. Unless something drastic happens, like we get extreme shrinkage of the tumor (20% chance that that happens, and if so, we’ll probably do a few more rounds of chemo), we will most likely go to surgery 4-6 weeks after cycle 4 (so maybe late September). No one on the tumor board, nor my surgeon, was advocating for radiation pre-surgery. I was kind of hoping for no more chemo, because I’m kind of tired of it, but that timing works great for me – I can get the kids back into the swing of school before we do the Big Dig.


A/B Testing

I’ve been conducting a little experiment: after reading about a study in which regional hyperthermia (heat), enhanced the efficacy of chemotherapy drugs (the study is relatively new and the availability of this type of treatment seems limited, and isn’t available at MD Anderson), I decided to administer my own type of local hyperthermia (some of you may know about my past DIY healthcare initiatives, including home surgery, and won’t find this surprising in the least).

During cycles 1 and 2 of the first set of drugs, I used a heating pad in the area of my tumor, for at least 20 minutes a day. Result: necrosis on the scans. In cycles 3 and 4 of the first set of drugs, I didn’t do this; result: no further necrosis. During cycles 1 and 2 of gem/tax, I resumed the heating pad application; result: necrosis. It’s not a perfect experiment but I only have one mouse to work with, so based on the above, I intend to continue the heat applications for the next two cycles.


He who must not be named

A couple of weeks ago I was in the shower, which faces a mirror. I caught a glance of my eyebrow-less, eyelash-free visage, and was reminded of a celebrity that I couldn’t quite place…I looked like someone really familiar. It struck me as I was toweling off: Voldemort. I look like Voldemort.

Still, he is a celebrity.

Having no eyebrows, I have to sketch them on, so they’re a little different every day – and I alternate between looking angrier and more surprised depending on how they come out.

I’ve often thought that one’s appearance was an expression of one’s inner self. But what I never realized was how much your physical appearance influences how you perceive yourself and your environment. Often times now, I walk around bald – it’s warm outside, and it’s just more comfortable. If I’m motivated I put on earrings, just to signal that I’m female. And sometimes I’ll wear bright lipstick, as if to say, “at least I still have lips!”.

When I see a bald person now, I almost always assume it’s a woman.

Because I look like this, I often feel that I should have an (unlit – because cancer) cigarette handing out of the corner of my mouth, and maybe a box of cigarettes rolled up into the cuff of a white Hanes t-shirt. I sometimes think I should ride a motorcycle, and maybe a sleeve of tattoos on each arm (white blood cell count permitting).

One day, my bald self and I were waiting on a field to pick up one of the kids, wearing bright lipstick and earrings, when a car drove by slowly and the woman inside peered over at me. I looked away, fearing, I don’t know, maybe a confrontation of some kind because I looked so creepy? “Hey!” she shouted as I hoped she would go away.

“I just wanted to say,” she said. “That you have the most strikingly perfect head. You look beautiful!”

I was so relieved. And thankful. Because even though I knew deep down in my heart that I look like Voldemort, it was nice that someone took the time to make me feel like I was okay.


Training for the big one

In the meantime, while I go through chemo and in the time before surgery, I’m focused on getting really strong. When I feel well, I train hard; one day I took one of the kids to the beach where we did stair sprints, 4 steep flights each way. They kicked my butt, but that didn’t stop me from yelling, “keep up with the cancer patient!” to her the whole time.

I’m diligent about doing something active every day (though I cut myself some slack on infusion days), and alternate between cardio, strength training and yoga. I know of a woman who recently had a similar surgery, and at five weeks she was still hospitalized, and last I heard they were going to have to remove her stomach because it stopped working after the surgery. I don’t know the details of her case, or her backstory, but I like my stomach, and I’m going to try to do all I can to make sure that I come out of the surgery strong – even if missing a few organs.

I’m also keeping up with my mental training. One of my friends is the CEO of Wellbrain, which is a company that works with clinicians to implement mindfulness into their pain management practices. There are some interesting studies showing that even just 10 minutes of daily mindfulness practice 4-6 weeks before surgery can improve pain tolerance by 50%, reducing the need for narcotics. I’ve meditated daily for about two years now, and am keeping it up because I know I’ll need it, not only to get through my current chemo treatments, but especially the post-surgical period.


The bright side

  • I’ve noticed, based on movies, that there are more bald people in space and in the future than anywhere else. This bodes well for me.
  • My mom was able to get consults at Stanford and at MD Anderson (with the generous help of The Godfather), so we’re feeling a lot better about her care. She’s going to be treated at MD Anderson as well.
  • We had a scare with one of the kids – an apparent sports injury unveiled a tumor on her femur. After a nail-biting couple of weeks we were relieved to find out that it was benign – and she’s back in full force with her sport.
  • I had to go in person to renew my drivers license. Though I had high hopes of having a blue wig for my photo, technically they don’t allow wigs, so I went in with my most believable one – the Chloe Kim. Nobody questioned it, I passed the eye exam (which I was worried about given the way the chemo’s been affecting my vision), and I successfully renewed my license.
  • I love seeing everyone’s vacation pictures. Thanks for sharing all your amazing, happy experiences. I love seeing people happy and living life.
  • I continue to be reminded that I have won the friend lottery, with the most generous, tireless and entertaining friends. Thank you.

I saw a meme this week that reflects my thoughts exactly: Thank you cancer, for showing me what’s really important in life. You can go now.