One bald step for mankind

The sharing

Some of you have asked whether you can share this blog with others. Others of you went ahead and shared. Please feel free to do so without asking — I would be delighted if it would be helpful to others, and as I mentioned before, because this is a rare cancer I’ve decided to be very public with it, which has been helpful to me in getting to the right specialists.

And side note: I mentioned that I get chemo brain after my infusions, and my portable infuser just finished piping some drugs into me a few minutes ago, so please know that we are heading into the dumb days again and forgive any typos, errors, conspiracy theories, etc.

The shearing

You could probably tell from my last post that I was ready to get rid of the pixie.

My hair started coming out in clumps in the shower. At first it was a like a little game — I would run my fingers through my hair and see how much hair come out with each round. But there was always more hair, and I could have stayed in the shower for hours, so I got out and then as an experiment, blow-dried it — dandelion fuzz everywhere. I knew it was time.

I ate a last snack with hair — these beet puffs are really good if you’re looking for something crunchy — and then headed up for the shearing.

I had a debate as to how to approach it — do I make it public, and invite friends? Or do I keep it private? I decided on the latter. I wasn’t sure how it would go, or if I would (as I deeply suspected) have a deformed head, and as it turned out, it felt like an intensely personal experience.

I thought I was ready. But when we started shaving it, I got really sad. Not because of the hair — I was really ready to let that go — but because of everything else: that my husband had to shave his wife’s head (though he is uniquely qualified in that regard); that I would now for sure look like a cancer patient — sick, vulnerable and exposed; that my kids would be embarrassed to have me around their friends (then again, they’re teenaged girls so that could equally happen with hair). I thought of our wedding vows — all that in sickness and health stuff — but I always assumed it would be more like, you know, the flu.

I was pretty upset about the shearing all night. But the next day, I got up, put in contacts, brought out my arsenal of makeup, and took a good look in the mirror. I’m happy to report that my head is in actuality not deformed. And you know what? I think I actually look better with my head shaved than with a pixie, and I feel kind of fierce!

I answer the door all the time now with my shaved head. A sweet friend sent me a collection of her grandmother’s scarves, so I’ve been having fun with those too, and with my killer collection of hats from friends around the country. Balds have more fun! (That thing on my neck is the tube of my chemo port, in case you’re wondering.)


Cycle 2

I had my second infusion yesterday, and it was rougher than the first — to be expected. The infusion process itself was kind of fun since I had two of my guardian angel friends visiting (which is more than recommended, but it wasn’t that crowded that day at the center and we had a nice time!), but once I left, I started getting stabbing pains in my hands, as if someone where knifing me repeatedly. I went back inside to talk to the team and they told me to monitor. Afterwards, I noticed that my palms were covered in dark purple capillaries — just like in the movies where some guy ingests a magic potion and turns into either a superhero or a monster. I’m hoping for superhero.

I’m definitely more tired this time around, slept most of today, and didn’t feel so great last night. But two infusions done!

Mama mia

My mom is still in the hospital with a lung that leaks. As I write the doctors are conferring about what to do. More surgery? Other options? She’s been in the hospital now for two weeks, so if you’re the praying type, please keep her in your prayers.

Her pathology also came back as a Stage 2, so once she’s released from the hospital, we’ll get some opinions on any follow-on therapies that might be recommended. But for now, I’d love for her to be able to recover and to go home, where I think recovery happens best.

The bright side

On Sunday, we made a pit stop and dropped our knives off at a farmer’s market, where there is a Japanese guy who is the only one to whom I trust my Japanese knives (and is also a small enough market there weren’t too many people around, so I was able to take a quick wander). As we arrived, a woman handed me a sunflower bouquet. The sunflower is the official sarcoma flower. Of all the bouquets she had, she handed me this one!

I was also able to pick up a few fresh flowers, since this is an ok-for-flowers week, and I got some sweet peas and ranunculus which I love.

Earlier in the week, I dropped my car off for its 45K mile service. And guess what — it was right at 45,000 miles as I pulled into the service area! I was pretty proud of that, though no one else seemed quite as impressed.


May unexpected coincidences bring brightness to your day.

The wilderness

The hair

Cut your hair into a pixie, they said. You’ll be so glad it’s short when it starts to fall out.

I was told to expect to shave my head by week 2. Not one to deprive the kids of the opportunity to have two bald parents, I was ready.

Friends, my hair is glued to my head. It is falling out less than ever before. It is also growing — into a Wayne’s World style mullet. I am wondering if I am going to be the first person ever to keep their hair on this regimen, at which point I will be doing two of the hardest things in the world at the same time: undergoing chemotherapy, and growing out a pixie.

I had an appointment this week with my oncologist here in San Diego, and she assured me that my hair would fall out. I realize I am probably the only person to ever wish for this to happen, but this haircut was part of that plan. Time will tell.

And to add insult to injury, I was reading that the steroids in the regimen cause some side effects too. While I have not developed an incredible amount of muscle mass, it has caused my skin to break out. Mullet + glasses + acne — I know you’re all jealous.

Mi madre

My mom is still in the hospital. We thought she’d be out by Monday, but it looks like the lung isn’t inflating fast enough — and that there might be some air bubbles that still need to be worked out. It’s been a full week now and she’s eager to go home — and really eager to wash her hair. So fingers crossed that she recovers quickly and gets to head home soon.

Luckily, some friends happen to work at the hospital where she’s staying — including the wife of a childhood friend / sometime bully (I seem to recall games during family gatherings that involved excessive consumption of Sprite followed by blocked bathroom doors) — so she has a nice room, and has had visits from doctor friends. That’s made a huge difference in her spirits and her experience. Still, I’m sad that I’m not able to be there to be an advocate on site. Hoping for a speedy recovery.

The chemo

This week I was less tired, so put in some long walks and did some light cardio. I also drove short distances a couple of times. One night, to get me out of the house, Sacha took me on a late night excursion to Target. They told us if you need to do stuff, like go to the grocery store, to go late at night when the stores are empty. I bought everything I didn’t need at Target, and it was glorious.

This past weekend I started to have some back pain and pressure on my right side, which made me fearful — is it working? Is the tumor growing? Overall, I’ve managed to stay positive — and I think for the most part I still am — but every once in a while these things cross my mind. The response rate for this drug — our best first shot — is about 30%. And I really want to be part of that 30%.

Then I get anxious about all the things I haven’t taught the kids, like how to properly optimize a dishwasher and care for an end-grain cutting board, and then things get crazy. I’d like to say that all I’m doing is hugging the kids all the time, but I’m not. In fact, I get agitated and probably overly critical because I want them to know how to do things the right way. And I realize all this is ludicrous and all I should be focused on is love and encouragement and happiness, but I’m on a lot of drugs right now so cut me some slack.

The God part

The relationship between faith and hardship is a funny one. Do I think that faith saves you from hardship? No — anyone who’s read the book of Job can attest to that. Does it guarantee you what you want, like a magic genie? No — though I must confess that if there were a magic genie type of faith that worked I would most probably sign up.

On Easter Sunday, Sacha and the kids went to church, but I stayed home, and found one of the sermons from John Buchanan, the very gifted pastor of the church I went to in Chicago. It was about the forty days that Jesus spent in the wilderness, alone. It’s about the wilderness of Moses after he surprisingly succeeds in liberating his people from Egypt. It’s about hardship, and loneliness.

“That’s the kind of thing that happens in the wilderness,” Buchanan writes. “You may not volunteer to go there. You may not like it there at all. But the strong biblical suggestion is that in the wilderness it is highly likely that God will come to you and things will change and you will never be quite the same again.”

I think that’s just it — for sure, I’ll never be quite the same again after this. That’s probably a good thing. But the other thing with faith — that God will come to you — is that you are not alone. Even at the darkest hours of the night, there is someone to turn to. A friend gave me a book called Help Thanks Wow: The Three Essential Prayers — and though I haven’t finished it, the title is right on point. Those are the prayers I pray.

Another friend shared Everything Happens for a Reason, and Other Lies I’ve Loved, written by a Kate Bowler, professor at Duke Divinity School who at age 35 was diagnosed with Stage 4 cancer. I read the first few pages, and wasn’t ready then to absorb Kate’s sadness — but again, I think the title of the book alone speaks to me. The important thing in suffering is not to feel alone. That’s what community, friends, family and faith gives me, and it has made all the difference.


The bright side

  • I’ve made it through my first cycle of chemo! Ready for the next one next week.
  • The dumb chemo brain days aren’t every day — just some days.
  • We continue to be very well fed — thank you, friends!
  • My hairdresser gave me a complimentary trim to get rid of the mullet-ness of my hair.
  • Every night I can see the sunset from my house.

I love the prayer that Rev. Buchanan quotes in his sermon (it’s worth reading, linked again here, if you have a moment):

This is another day, O Lord.
I know not what it will bring forth,
but make me ready, Lord, for whatever it may be.
If I am to stand up, help me to stand bravely.
If I am to sit still, help me to sit quietly.
If I am to lie low, help me to do it patiently.
And if I am to do nothing, let me do it gallantly.
Make these words more than words,
and give me the Spirit of Jesus. Amen.

Kathleen Norris
Acedia and Me




Chemical warfare

Mustard gas was first used in World War I, and found to be a suppressor of blood production. During World War II, nitrogen mustard was shown to reduce white blood cell counts, and after the war, presumably when gassing people became a lot less popular, a commercial application was found in cytotoxic treatments for cancer. Complicating the storyline around treatment are the kickbacks doctors get from prescribing chemotherapy; there’s a website where you can find out how much your doctor has gotten in kickbacks from your drugs.

I happen to think that chemotherapy is the right course of action for me — for the reasons I shared previously (stopping early spread of the cancer; shrinking the tumor to make a difficult surgery a little easier) — but it seems barbaric nonetheless. I willingly have these toxic substances, which systemically attack normal and cancerous cells alike — injected into a vein going directly into my heart. The symptoms —  odd physical sensations, numbness, nausea, changes in taste, skin inflammations, fatigue and cognitive impairment — are all par for the course. It’s kind of a spray and pray — really hard — strategy.

With chemotherapy comes reluctant resignation of things I can’t do. Tomorrow, my mom is having surgery for her lung cancer — removing 2/3 of her lung. Because I’m in my low immunity period, I won’t be able to be at the hospital, to support or advocate. (Thankfully, my brother came into town and will handle all of that.) Last week and into early this week, one of the kids was really sick — and I could only care for her as if she were prisoner, knocking and leaving a tray of food outside her door throughout the day (at least it was a pretty gold tray).

Cycle 1 is supposed to be the easiest, before the toxins have a cumulative effect on the body, and so far it has been manageable. I’m diligent about my nausea meds, I hydrate like crazy (my Plant Nanny plant is happy and has sprouted a flower!), and eat small meals throughout the day. I haven’t been driving because sometimes the fatigue hits me like a tranquilizer dart; the other day I was in the midst of chewing some food and made it my goal to stay awake til I got far enough along to swallow. I live the same life as my one-year-old goddaughter: wake up, eat, do a little activity if I can, and sleep again.

Right around Day 4 I had a real Flowers for Algernon moment. I was trying to do just a few minutes of work, and found it nearly impossible to think. I knew I used to be able to read, but it was really hard, and composing any cohesive content was totally out of bounds. I had to just lie down after trying to read.

I make myself exercise a little every day — maybe a 30-40 minute walk — though on these drugs I have to keep myself covered up (people on the patient boards said that on one the drugs I’m on, it feels like you have hot oil poured all over your skin if you let direct sunlight onto it), so if you see someone dressed like a Franciscan monk about to pick coffee beans wandering along the canyon trails, feel free to say hello.

Be still


This has always been one of my favorite verses, because of its deceptive simplicity: the command to be still, which for me, used to require an incredible amount of effort, followed by a comfort that demands nothing but receiving.

I’ve been still a lot lately, and with it comes wonder of all the things you never noticed before: the little purple veins in a cauliflower floret; the hand-painted artistry on a pretty ceramic plate (those of you who know my penchant for pretty plates will be glad to know that not for one second have I regretted the acquisition of a single one). With stillness comes focus, especially on days where you can only manage one thought at a time.

The bright side

I’ll let you in on a little secret: the best restaurant in town is at my house, on the meal train. How I became blessed with friends with such good taste across food, flora and fashion will forever remain a mystery for which I am eternally grateful.

This week came with news of a new scientific discovery as well, that might explain the spread of cancer (and the mystery of qi). One of the things they say on the patient boards is that all you have to do is to stay alive long enough for them to find a cure. So fingers crossed that day isn’t so far away.

Also, someone wrote a really good article about the state of leiomyosarcomas treatment today — probably the best consolidated summary I’ve seen.

Timothy Keller talks about the birth of a baby: how in that moment, the baby who was perfectly happy and warm in the womb, is annoyed and wondering why he’s been slapped on the butt and in a cold room with everyone staring at him. What he doesn’t realize is that everything — from the slapping to the cold to the attention of the doctors and the parents — is being done for his benefit. I’m keeping that analogy in mind.

Finally, it brings me to much joy to hear of the actions you’ve taken after reading my updates. I’ll keep adding as I remember them (caveat that chemo brain can kick in any time!):

  • In addition to the soaps and body washes I mentioned last time, avoid toothpastes with triclosan — even though the FDA has ruled that it’s potentially harmful, it still appears in some products like Colgate Total toothpaste. Heck, just avoid triclosan. And whatever you do, don’t put it in your mouth. I like Dr Bronner’s toothpaste.
  • You can use EWG’s Skin Deep database to search consumer products you’re using to determine toxicity. Use it to search for particular brands and items, or to just check out the ingredients in something you already have.
  • This blog triangulates EWG’s ratings, Amazon ratings and Fakespot to come up with recommendations on body and facial care products that are good choices to consider. There are some natural beauty brands out there that produce terrible and expensive products, and then there are affordable mass market brands that produce perfectly good products. My general rule of thumb is to target products that don’t promise to do too much — they’re more likely to have inert ingredients. Plus, I’ve come to realize, aging is a privilege — we don’t have to fight it.

Go Blue (and Red) Devils

The day before

On Tuesday, before my first infusion, I wanted to get out and do things I wouldn’t be able to do for a while. So a friend and I went around and had breakfast at Good On Ya in Encinitas, where I ran into one of the girls’ beach volleyball coaches, walked over to the nearby Meditation Gardens, walked down to Swami’s beach, and stopped into Patagonia, where we saw another volleyball coach (pro tip: if you’re in the market for a volleyball coach, go to Encinitas on Tuesdays).

I just wanted to see a bunch of beautiful things that day. All is well in the world when you’re looking out and seeing this:

Neither of us (embarrassingly), has ever walked down to Swami’s Beach either, and it was so private and peaceful, it felt like a secret getaway:

It was a great last day filling my heart with wonder and beauty before filling my body with toxins. And thanks for all the flowers — I’m enjoying the heck out of them before I’m banned from them (and gardening!) for the second week of the cycle.

Infusion day 1

Did anyone else pick UVA to win it all in your March Madness bracket? Well, at least Duke still has a shot. Which would make me happier anyway. Go Blue Devils!!!

I’d heard that the first access of your chemo port was particularly painful, so super grateful when a friend gave me a tip to ask for a lidocaine prescription and apply it 30 minutes beforehand. Painless poke. I know you’re all wishing you had a resealable valve in your chests right now.

I used an old diaper bag to prepare a days’ worth of snacks, entertainment, and hydration. I was glad I did when I walked by the magazine rack and saw an assortment of publications there that were comparable to the most prominently featured Diabetes magazine.

The chemo people told me to hydrate — it makes a big difference in how you feel — so I am HYDRATING. I am the same person who in elementary school was so proactive about wiggling out my baby teeth for efficiency’s sake that I removed a permanent one (my dentist encouraged me to channel my energies in more productive ways going forward). Anyway, Plant Nanny is a great app (for anyone, not just patients) that gamifies hydration, and you get to feed a cute little plant you can name (I’ve been telling all the oncology folks I see about it):


I also downloaded ChemoWave, which is a helpful app for patients where you can track symptoms, medications (I need it to keep me on track with the crazy schedules), and how you feel on which days of the cycle so that you can better plan your life.

Sacha brought me to the Infusion Center and stayed for a bit while they took my labs…then an amazing friend who I only met because I had cancer came and stayed with me for most of the time, taking notes on my meds, asking for blankets and pillows, buying me lunch…it was nice to have a pro along for my first rodeo.

Because it was my first time, they gave me a primo spot by a window. It was so nice and private and lovely.


One of the medications isn’t one they typically administer, so we had to stop at one point to wait for someone to run around looking for it at the in-patient facility. It’s the one that goes in within 30 minutes before the the infamous Red Devil, so they wanted to be sure they had it on hand before starting. Below you can see the Red Devil in action being rapidly injected. Note the friendly warning on the red label.


At one point they stopped the infusion because my heart started racing, and I was really hoping that it wasn’t an allergy to the dacarbazine which is a key part of the regimen. Luckily, we think it was the steroid they put in, and it calmed down by the time I left. I don’t even drink much caffeine so I’m sure my body had no idea what to think of the steroid.

Here I am eating salad to help me restore my healthy cells!


Everyone said that the steroids amp you up and give you tons of energy, but I was actually pretty tired afterwards and took a nap in the early evening.

They gave me a patch with a pump which will start injecting some other meds into me starting at 5 PM tonight. Last night I kept seeing these flashing lights that seemed to change direction whenever I turned. I thought I was losing my mind. Turned out it was just the flashing light on the pump on my arm.

The first 24 hours is supposed to be the best, so we’ll see how it goes from here. I’ve spent the day getting caught up on things that require actual brain processing power, because I’m not sure what the next few days bring. I’m told that the first cycle is the nicest…but it gets progressively worse each time as the toxins accumulate. My regimen is an aggressive one, so they gave me four different nausea drugs which I am taking religiously…but apparently you can get some on this even a couple of weeks into the cycle. So far all good today.

The bright side

Stripper wig

Ok first of all, in response to all the demands to see the stripper wig — I hyperlinked to the actual wig’s online listing in the previous post. The only other pic I have before I cut it is one with one of my kids wearing it, and I asked if I could post it and she was like no, it’s a violation of my privacy, and I said I HAVE CANCER LET ME POST IT and she said I could only do it if I blurred out her face AND her body which destroys the whole effect of the picture, so I said face only and she said I WILL REPORT YOU. Those of you who know my girls will know exactly which kid that is.

I really don’t need any more problems right now, so just go to the hyperlink.

I smell like Whole Foods

Second, one of the things I have heard so much which makes me so happy lately is that many of you have made lifestyle changes because of my cancer. I really hope this means you will never have to have cancer. But if it’s helpful, here’s a list of practices I’ve implemented. Keep in mind I’m not likely to have done all of these when I thought I was just a normal, healthy person, but I’m kind of putting myself into a zero risk zone at the moment. Again, everything I’ve ever mocked I’ve now become:

  • I stopped using the microwave altogether. Sacha measured the radiation emitted from our microwave and it was alarming, even several feet away. And, it changes the chemical structure of foods, so who knows what that does. Now I warm things up in the oven or on the stovetop. It’s less work than it sounds.
  • I try only to buy organic produce, and even then I wash the pesticides off using the water and baking soda method. I admit to you, Chinese mothers everywhere, I was wrong and the Chinese newspaper was right.
  • The only non-stick pans I use are those from Scanpan, which are ceramic and titanium (inert) and the only ceramics I’ve found that perform as well as if not better than the traditional Teflon non-stick pans. Teflon, you don’t want that in your body. Apparently it’s so prevalent that traces can be found in most Americans’ bodies.
  • I don’t drink water from plastic bottles, or store foods in them unless I need to because I’m on the go. There’s an environmental component to this as well. And, this one I’m not very good at sticking to because it requires energy — I try not to put plastic containers in the dishwasher.
  • I read up a lot on diets: vegan, ketogenic, whole foods. All have interesting and compelling arguments and reasonably defensible studies behind them (I am a tough critic on studies as you know by now).
    • Before chemo, I focused on having a plant based diet, making sure I got plenty of protein and fats, and having just occasional organic animal-based proteins since those tend to be more inflammatory — and with cancer, you want to limit inflammation as much as possible. Any of those diets probably work relatively well for a healthy person.
    • Now that chemo’s started, all cells, cancerous and healthy, are being killed off, and most of all my body needs nourishment — so I think I’m moving more toward the whole foods diet, because there’s a greater variety of nutrients to replenish. The Godfather says during chemo he is a fan of the “See-Food” diet — when you see food that you like to eat, eat it. The most important thing is getting food into your body, especially when it can be hard. So I’m relying on my body to let me know what I should be eating. I’m learning to listen to it more.
  • I’ve always talked to my cells, especially when I’m sick, just asking them to do specific things for me. Now that I know a bit more about this cancer, I give them really specific instructions for my T-cells not to be fooled by the sneaky sarcoma cells. But I learned that I’m not the only loon who talks to my cells, and there are great meditations on YouTube that I use a lot. I’m not necessarily recommending my cell-talking ways to everyone, but I do think meditation is a great thing to do. One app I use frequently is Simple Habit, which just happens to be founded by a Duke grad, and which can be used really effectively during your workday or going about your business whenever you need some focus or relief.
  • I’ve started incorporating qi gong, which has roots in Chinese medicine, into my exercise regimen — mostly started when I had the chemo port surgery and my range of motion was limited. I figured, why not move my qi around a bit and see what happens. This is my favorite video, because all these random people walk past this girl who’s filming and stare at her, and she can’t help but crack up.
  • I limit what I put on my skin: the only moisturizer I use now is olive oil. For years now the only deodorant I’ll use is Native, which is the best performing aluminum free one I’ve found. They were recently acquired but maintain good quality.
  • I carry a triclosan-free hand sanitizer and wipes wherever I go. This one is my favorite.
  • I don’t use soap or shower gel that has any hormone disruptors. I like the Dr Bonners Castille soaps, which have 18 uses listed on the bottle (detergent, shampoo, etc) and a little goes a long way.

Chemo chameleon

What is the opposite of insurance?

Last week, after the visit to MD Anderson (MDA), I was feeling good about where we were headed. On Tuesday, talked to my medical oncologist (MO) at UCSD and she was on board with implementing the protocol locally. I was told that usually it takes 2-3 days to get approval, so I figured I’d probably start treatment early this week. Friday we met again to go over the details of the plan.

I hadn’t heard anything by Friday afternoon, so I followed up with her office (which had just moved, and some of the phone numbers weren’t working). Still pending. I called the insurance company, and they said they had faxed over a request for peer-to-peer review between my MO and the insurance company’s MO.

Because my MO said she had never prescribed this regimen, and I knew the importance of the peer-to-peer in establishing medical necessity and clinical evidence (tough for a rare cancer), I tried to get ahead of the game by working with the team at MDA to get her talking points in case it became down to a Texas-rodeo-style showdown. That didn’t quite work; MDA said they could probably get it pushed through more easily and sent their own request — which meant that if approved, I’d have to travel to Houston to get my infusions. Which would be ok, except that I wasn’t super excited about flying after chemo, or spending weeks or months in Houston (at least not on short notice).

Yesterday I woke up early and spent the first four hours of the day navigating the insurance situation. The insurance company had gotten a response from my MO on Friday, but then requested another peer-to-peer. They said they were sending the fax out and it could take up to 48 hours for the fax to go out (yes, I said fax. And 48 hours. Queue for the fax!). This is when I started digging up numbers and calling the numbers meant for medical providers, and projecting the authority of a person employed by a medical facility without actually lying using my high school drama club acting skills, made it through the system far enough to talk to a nurse who said their issue was that the regimen didn’t conform to NCCN standards.

I would just like point out to the insurance company that if I were looking for recreational drugs, I would not be seeking out ones that cause nausea, mouth sores or bone pain.

Instead of waiting 48 hours for the fax to come through, I let my MO’s office know the details. And…through the miracle of annoying but polite persistence, crisis communication tactics, and prayer, it was approved! So my first day of chemo is tomorrow!!!

I share all of the above in great detail to make the point (if you haven’t gotten it already) that your healthcare is no one’s number one priority but your own. Question things that you’re not sure are right. Ask yourself, what isn’t happening now that I can make happen? Advocate for yourself, think outside of the box, and strategize ways to get your case the attention it needs.

I wish I could say that we had a system where there’s a reliable quarterback coordinating your care. There isn’t. That quarterback has to be you. And if you’ve ever seen me throw, you’ll know how scary that is.

Going for the gold

I mentioned last week that I went wig shopping and left empty-handed. Honestly I don’t think I’ll be much of a wig person — a close friend has already sent me an enviable collection of cute hats (and eyebrow stencils!) — but another friend said that there would be occasions where I might want one — when I just didn’t want to have to deal with questions or people staring at me.

I thought it’d be fun to take the family wig shopping. The American Cancer Society provides free wigs, so we got one there first. There wasn’t much selection, so we got pretty much the only dark wig. It’s super long with cascading waves, and I’m pretty sure it’s a stripper wig. When we got home I had Audrey wear the wig and I gave it a haircut, to shoulder length, but it has these weird bangs that don’t line up with the fake hair part, and the wave made it all crazy, but I suppose it’s workable if I wear a hat.

The next place we went to was a little better, but the only wig I liked happened to be blonde. So…I got it. I figured if you’re going to be fake, be really fake. My niece loves Chloe Kim so I threw on a hat and voila! Now available for birthday parties and bar mitzvahs!


The bright side

I picked up my prescriptions to take during chemo, and can say that I now have a very well stocked pharmacy. If you know me, you know that I avoid drugs and resort to Tylenol only if I’ve had a surgical procedure, but I like nausea and mouth sores less than I like drugs, so I will be taking these.


My mom and I have the same haircut (um, and cancer)! It’s looking like they’ll be removing about 2/3 of one of her lungs, but Stage 1 is still relatively good news.


I received a handmade card recently from my best friend in elementary school. We haven’t been in close contact in years, but as she wrote, being best friends during childhood gives us an eternal bond. The letter was so beautiful, reminding me of so many things I’d forgotten (like how for about 20 years I thought David Bowie’s Major Tom was “Tomato Tom”, adventures with our adversaries, and so on), and I read it over and over again.

When we were kids I was obsessed with penmanship (making me as cool as you would have imagined), and in particular I thought this friend’s dad had the most amazing handwriting. We might have tried to replicate it, to improve our penmanship. Or maybe there were some homework excuse forgeries thrown in, I’m not sure. But I was astounded to see that her penmanship now looked like her dad’s.

There was really no point to that last part except that I have cancer and I can write what I want.

All of your comments, notes, gifts, prayers and encouragement mean so much to me. There are so many of you that I wish I had spent more time with over the past month and a half, but managing a rare cancer (as a data-driven person) is surprisingly time-consuming. So even though there are many of you that I haven’t spent time with recently, please know that I’m so grateful to count you as friends, and especially during the quarantined sections of my chemotherapy I’ll revisit all your kind words to keep my spirits up. When I see the meal train coming four times a week through July, I am overwhelmed by your love and generosity. Thank you, thank you, thank you.


God bless Texas

Lightning strikes

A friend told me that getting sarcoma is like getting struck by lightning — they don’t believe it’s genetic (though the Godfather thinks it probably is — but it’s genetic in such a complex way that it’s too hard to predict), or because of anything I did or ate — it’s just bad luck. Turns out the idea that lightning never strikes the same place twice is a myth: last week, we found out that my mom has lung cancer.

The good news is that it looks to be Stage 1. I shared this with a friend with Stage 4 cancer and she was overjoyed. That’s what’s so funny about this cancer thing — it’s all relative. When you have what we have, then Stage 1 is almost like having a cold. (Ok, not really — cancer is cancer, so we’re taking it seriously…but Stage 1 is really good, considering.)

So we’re navigating this other (luckily better-understood) cancer, and thankfully my brother is doing the heavy lifting on this one. Poor guy is supposed to be in three places at once in the coming weeks, but thank God for FaceTime.

Rice Village

On Sunday, Sacha and I flew to Houston for our MD Anderson appointment. I wore a surgical mask to ward off germs, and in hopes that it would scare people away from sitting next to me. That second part totally didn’t work.

The MD Anderson facility is like its own little town — with 20,000 employees. When we checked into the hotel, there was a patient representative from MD Anderson there with my appointment schedule printed out, a bio of my doctor, and tons of information on all the services available to patients. There’s a hair salon, free massage, libraries, research resource centers, gardens…I felt like I was at a resort that just happened to be full of people with cancer.

A college friend who works at MD Anderson met us for dinner. She gave us the after-hours tour of the facility. She asked where we wanted to go to dinner; we said we were up for anything so she suggested Rice Village. I was surprised there were enough Asians in Houston to warrant a “Rice Village” but agreed.

On our way over, she asked if I’d ever been to Houston. I didn’t think I had, but then recalled a time when, as a child, I was running across the (completely flat) lawn at Rice University, when I fell and my mouth landed on a hill full of fire ants (see “lightning never strikes the same place twice”). And that’s when it clicked…that kind of Rice Village!

We were in town during rodeo season, but were too tired to hit up the Rodeo. We did get to meet up with one of Sacha’s childhood friends from France who now lives in Houston — and she went to the rodeo! All I have to say that in my next career I would like to pursue mutton bustin’ (please, watch the video — you won’t be sorry).

The Godfather of sarcoma

On Monday I had an appointment with the Godfather. It was at 3 PM, but the sign at the Sarcoma Center said that he was running 1.5 to 2 hours late. I took that as a good sign — he’s spending as much time with his patients as it takes. So the staff said we could go exploring for a while and come back. We walked around and visited the art gallery, the aquarium, and these giant cowboy boots.


When I finally saw the Godfather, he explained the following:

  • The MD Anderson pathology additionally confirmed retroperitoneal leiomyosarcoma (LMS).
  • We should consider my case an LMS of the inferior vena cava.
  • In my case, it doesn’t look like it has spread to other parts of the body yet (it’s “locally advanced”).
  • The surgery is going to be a very difficult one. So our goal with chemotherapy is to shrink the tumor in order to simplify the surgery. He agreed that my surgeon is excellent.
  • He recommended doxorubicin + dacarbazine, plus dexrazoxane to protect my heart. It’s not clear whether insurance will approve dexrazoxane, since it is technically approved only after two cycles, when I guess your heart is sufficiently damaged in the view of the insurance companies. He recommended against ifosfamide, saying that it was unnecessarily hard on the kidneys (I’m only going to be left with one!) and not as good for treating my tumor subtype.
  • After two cycles, we’ll scan to see if it’s working, and then continue or switch up treatment accordingly.
  • He has a second-line treatment in mind, since this is a cancer that often recurs, and feels it’s easier to take the harder treatment first and then step down from there.
  • He thought the regimen, which is outpatient, could be locally implemented in San Diego assuming my medical oncologist (MO) was on board, with visits to Houston every 6 weeks. We’ll reassess every two chemo cycles.

He gave me a big long bear hug at the end of our session, and said that that was the real secret to why his patients did better.

This treatment still carries the cardiomyopathy and leukemia risk. One of the drugs is nicknamed “The Red Devil” by LMS patients…so pleasant!

I decided to move forward with his recommendation. Over 43 years, and with people coming from all over the world, he’s seen more of my LMS subtype than probably anyone else — and it would be able to be implemented in part remotely. I talked to my MO at UCSD and she was on board with the plan. So…just pending insurance (please, insurance company, have the desire to save my heart!).

The bright side

Sacha and I walked to a nice dinner on Monday night, at a restaurant which featured more vegetables on a menu than any other I’ve seen in Texas.


Logged another week in the books of seeing friends, getting cute comfy clothes, socks with animals donning eyewear, fuzzy socks, wig shopping with a friend (not sure how I’m feeling about wigs just yet) and Texas-specific snacks (Buc-ees Beaver Nuggets, anyone?).

And today, as recommended by so many resources, I cut my hair short to make my inevitable hair loss less depressing. Audrey calls me “Grandma Jr.”, and Amelia thought I was my mom or an elf when she saw me. Whatever, it’s a hairstyle I’ll have for 3 weeks!