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.

Surgeon’s Update

5 Seconds after I clicked “Publish” on the previous post, the surgeon called.

Continued good news:

  • Tumor out.
  • Right adrenal gland out, as planned.
  • Right kidney out, as planned.
  • Liver spared. “I only had to shave off 0.5% of it”. Had thought up to 50% taken out so this is great news.
  • Gall bladder spared, also great news.
  • Reconstructing Vena Cava, as expected.
  • Pathology currently under way to understand margins.
  • Sandi in stable condition.

He’s expecting they will be done in next 2 hours, so on the earlier side of the estimate.

Dr Rich nailed it on the snack front


Mid Morning Update: Stable

Scottie, an OR nurse with no Scottish accent detected, calls us every couple of hours with an update. Here are the two from this morning:

  • 850am: First incision.
  • 1130am: Stable condition … “boring … which is exactly what we want at this point” … No organs out yet … surgeons are exploring the area, getting it prepped … “it’s going to be a long day”.

The doctors told us at the start of the day that Sandi will most likely be admitted to the ICU given the extent of the surgery so that she gets close monitoring. We are all for micromanagement and precautionary measures.

We parked ourselves at the entrance of the cafeteria, which means we get to see when the OR staff need nutrition. I’m tempted to follow them around and point out healthy options that enhance focus and performance. “Pizza, dude? Really?”.

Thanks for your texts, comments, good vibes, thoughts and prayers. They mean so much to us.

Sandi’s friend Minchi at 530am. 


The fam stalking OR staff in front of the cafeteria.


Dr Rich dishing out snacks and expertise. 


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.

Houston chronicles

The room

There’s something missing from medical centers. Let’s call it a Processing Room. It’s a room you can go to after any consult, diagnosis, result or procedure. In this room would be several sections: first, an area where you can privately shout expletives and shake your fist at the sky. Another might have dolls dressed up as medical personnel or insurance claim reviewers that you can punch. Yet another would have an assortment of snacks that you can binge eat by candlelight while listening to sad music.

I could use a room like that.

I haven’t written much about my mother lately, but let’s just say that her care to date has been disappointing at best, and strange at times, and if rooms number one and two above were available, I would have made ample use of them. They didn’t get all the cancer in the surgery. They didn’t tell us for several weeks. There are other oddities and concerning things that I won’t document here, but suffice it to say that I am frustrated at not having the capacity to be more involved. Not helpful at a time when I’m supposed to be keeping my cortisol levels in check.

Luckily, my brother is taking some time off work to help drive some of this forward, because we need more opinions. She’ll have a consult at Stanford this week, and potential consults at UCSF and MD Anderson. Coordinating the care and finding the right team is a full-time job. Caregivers should be allowed to use the Processing Room too.

As I write, I’m on a flight back from Houston after my scan and consult, binge eating $4.99 bags of popcorn that I bought at the airport. Today I learned that after four cycles, the tumor did not shrink. The good news is that it didn’t grow, but from the standpoint of the goal of the treatment – to shrink the tumor which would also demonstrate that it was likely effective in killing any small areas of spread (called micro metastases) – it was a failure.

I knew that there was no guarantee that it would work, but – I don’t know – I felt like I worked so hard at it. It’s like I studied for 12 weeks for an exam, only to find out that I got a D. So I’m not gonna lie, I’m disappointed. I don’t blame the Godfather though – I’m lucky to have a doctor who actually cares, and we went in with our best, most aggressive shot – I just really wanted it to work.

The pivot

So what’s next? We’re going to try a new regimen. This one’s a combination of gemcitabine and docetaxel. I get it on Day 1 and Day 8, and there are various pills involved too, and apparently on the second week I will feel like I have been smacked upside the head. So we’ll try 6 weeks of this, and then have another scan.

I have just learned to manage one set of side effects and am getting my head around stepping into a whole other set of unknowns. But, I’m grateful that there are other options.

Here’s the hope: this shrinks the tumor. If it doesn’t, maybe we go to surgery. Maybe we try some radiation, though that has its own complications and could make some parts of the surgery harder. The Godfather is going to meet with his team of surgeons and radiation oncologists and coordinate with my surgeon here on next steps.

On Sunday, after my blood work, Sacha and I went to dinner and then walked back to the hotel through Rice University. As we were cutting through some fields, I saw a lone flower – a sunflower – which as you might recall, is the sarcoma flower (why they have a yellow flower but purple ribbon is another marketing matter altogether, one which I feel I need to address with them professionally at some point, but not now). I ran over and snapped a photo of it, taking it as a good omen.

But as I got closer to it, I wasn’t sure anymore if it was a sunflower. Was it some sort of sunflower-ish daisy? Black-eyed Susan?  I spent a good amount of time looking at pictures of sunflowers and daisies and the results were inconclusive.

Apparently sunflowers and daisies are part of the same flower family.

I wondered about this garbled message from the universe. I feel like there is a message, it’s just really muffled and I can’t quite make it out, but I’m still trying to listen. Maybe it’s just saying, keep looking.

The bright side

My driver’s license needs to be renewed soon, and I still won’t have hair. So I can decide what color I’m going to have – I think it’ll probably be blue or pink — or possibly an Hermes scarf I got from a lovely and generous friend. I hate all my driver’s license pictures but I know I’m going to love this one.

I did have a missed opportunity though – I didn’t wear the Ben Franklin to the airport because it was so hot in Houston, so when I was asked to take off my hat there was no freaking out of TSA agents. I’ll have to try again with Ben when it’s cooler out. It is so hot in Houston. I’m not sure it’s really a habitable land.

Some of you have asked if I’ve made any “cancer friends”. The answer is yes! I’m grateful for my cancer friends, even though I had to have cancer to meet them. It’s a funny thing, when you meet other cancer people it’s like your friendships are suddenly fast-tracked and you text each other all the time. It’s nice to know people who understand exactly what it’s like to wish for a Processing Room, for instance.

I have been engaging in some retail therapy. I’m pretty sure studies have shown that you live longer if you buy more clothes, if only out of sheer will for optimizing the cost per wear of each item.

Net neutrality

Would you rather

In high school, I went to a magnet school. This involved taking a bus from my neighborhood to the local high school, and then waiting for another bus to take me to my actual school, which was another 45 minutes away. This was before smart phones and tablets and just shortly after the printing press (or at least the Walkman) was invented, so my classmates and I had to use our actual brains and mouths to provide entertainment. One of these ways was to play “would you rather”.

Would you rather eat a bunch of hair pulled out of a bathtub drain, or would you rather burp every time you spoke? That’s what cancer treatment is like: trading off one not-so-great thing for another.

I’ve noticed that I’ve become oddly possessive of things I once took for granted. My fingernails are turning purple, and sometimes they hurt. I know that other patients on the patient discussion boards I’m on have lost their nails, and I’ve realized that I’m rather partial to having fingernails. I find myself playing “would you rather” on my own nowadays: would I rather have fingernails, or let a tumor eat my insides? Turns out it’s a lot less fun of a game when they’re real choices.


I didn’t post last week because it would have been about my scanxiety – which what on the patient boards is used to describe the anxiety one feels while waiting for scans and results – and there was no point in spreading it unnecessarily. Some of the people on the boards have PTSD from the scanxiety: since leiomyosarcomas have a high rate of recurrence, some of them – the luckier ones, in a sense – have weathered 16 years of scans, 7-8 surgeries, radiation, worked through all the sarcoma chemo regimens, and they’re still going. But understandably, they’re traumatized by the prospect of a scan and which body parts they’ll be losing next.

Yesterday I had my first scan since I started chemo, to see whether it was working. This trip was tightly booked, since we flew in the night before, and I had back-to-back appointments all day with blood work, the scan, a consult, and then an appointment to get my port approved for use at MD Anderson since they hadn’t installed it (important since some of my veins are kind of giving up, and my arms are both sore and bruised from unsuccessful vein entries).

The Godfather came in and started off with one of his signature healing hugs. He thinks white lab coats are boring, so he covers his in buttons and pins (or if he worked at Bennigan’s, “flair”), so when he gives you a hug, he stabs you with all those pins, which I view as a sort of acupuncture.

Is the chemo working? We can’t say for sure. On the one hand, there is a hole in the middle of the tumor, where some necrosis (tissue death) has occurred. On the other hand, the tumor has increased in overall size. However, it does seem that the hole is growing faster than the tumor is growing overall – so that is a positive sign. Since there aren’t that many options for LMS treatment – four, really – the Godfather said that he wouldn’t want to rule (the most aggressive) one out without proving out definitively that it didn’t work. So, we’ll proceed with two more rounds of it, do another scan, and then assess.

I had a bunch of questions about the path forward (what if this, what if that), and the general response is that we need to evaluate as we go. It could involve other treatments; it could involve radiation, and it will hopefully involve surgery, which is the best way to try to eradicate the cancer.

So overall, I guess it’s neutral-to-goodish news. It might be working. Back at it tomorrow with another infusion.

What if

Even worse than the scanxiety is the trap of falling into the what-if game. No good comes of me thinking too far ahead.

I stay on the patient boards because there’s good information shared on them – and because of the rarity of the cancer and commingling of disease types in research, none of the studies are really conclusive in helping me make treatment decisions. So I like to collect anecdotal evidence to draw my own conclusions. There have been a few patient-led efforts to try to create a database of treatments and outcomes, but they’ve been hindered thus far by privacy concerns (and the multivariate analysis that would need to be done would be pretty daunting given all the universe of beginning, middle and end states).

Sometimes there’s encouragement on these boards too. But too often, members die. Sometimes, the spouses post about the deaths. These posts are raw and painful, and the ones with pictures and families crush me. This one undid me for days. When it’s someone around my age, with kids, with a life that somewhat resembles mine, it’s so hard, because — what if?

I’m devoting just as much energy to the mental game as the physical. Mindfulness, meditation, prayer…exercise, sleeping, eating…those remain my primary spheres of energy investment. I’m still an optimist, but it does take work.

The bright side


Last weekend, Sacha took one of the kids to Vegas for a volleyball tournament, and the other girl and I had been getting on each others’ nerves – which was not how I wanted our relationship to go down. So I told her I was going to force her to bond with me that weekend. We rented a movie, made pizzas, and Saturday night, when no one was at the mall and it was safe for my low-immune-self to be out, we went shopping.

Since it was a cooler evening, and a special occasion (mall! public!) I put on my Chloe Kim wig. We had only been at the mall for a few minutes when a woman ran up to me and said that she loved my hair color and begged me for the name of my colorist. I had to laugh and confess that it was a wig, but…kudos to the colorist at Rene of Paris wigs!

Sunday was kind of a bummer since we had planned to do some more hanging out (forced bonding works!), but the oncologist on call asked me to go into the ER for an infection (everything is ok and I have a follow up appointment today where I hope they’re going to tell me the same). Luckily when you’re a cancer patient they get you into a private room pretty quickly, so I was able to be out of there within three hours and we still had a little time to spend together – enough to make a nice dinner.


A huge blessing was being able to go on this trip without having to worry about how the kids were doing. We weren’t at all worried about welfare since they were being cared for by our dear friend and her boyfriend, who happens to be an FBI agent. I’m confident there’s a major market expansion opportunity for the FBI in the arena of childcare. The girls told us they were “having a great time with their foster parents” and that we were free to “take another vacation day” if wanted to. (Note: seek out vacations that don’t involve blood or needles.)

Home at last

After 21 days in the hospital, my mom is finally home and recovering nicely. Two aunts and an uncle are on hand to help out, and I was able to see her on her birthday! Just the other day she got the ok to finally take a real shower, about which she was overjoyed.

And finally

I’ve discovered that if you’re ever feeling down, there’s nothing that The Fitness Marshall can’t fix. Just please don’t imagine a bald, middle-aged woman in pajamas trying to keep up.

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



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.