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.

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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.

The hitchhiker’s guide

#royalwedding

When I was a kid, I would often almost get what I wanted for Christmas. You know, if I asked for Barbie, I got “Darcy”. Or if a Monchichi, I’d get some other simian derivation. So when I heard that when we went on a family trip to Taiwan that my uncle was going to get one of the cousins a Cabbage Patch doll, I was beyond thrilled.

On the much-anticipated doll-distributing day, true to my life story, I arrived to find that instead of said Cabbage Patch dolls we were each given a life-sized, realistic Prince William doll. Luckily for us Prince William was a newborn (an adult-sized Prince William doll would have been infinitely more disturbing). I soldiered on cheerfully carrying my infant Prince William doll with me everywhere I went, until his blinking eyes were no longer in synch and, one-eyed, would stare at me whenever I entered my room, contributing significantly to my lifelong battle with insomnia. (I know my audience — please do not suddenly flood my mailbox with Cabbage Patch kids 🙂 ). 

All this to say that I can’t believe his little brother just got married.

In 1981, I woke my brother at the crack of dawn and we ventured into the basement to watch coverage of the wedding of Charles and Diana. In 2018, I didn’t do that (but one of my kids did). Instead, I scrubbed through video footage afterwards pretending to be a royal wedding guest while in actuality wearing my “I only like NY as a friend” t-shirt, and cried (probably poisonous chemo tears) every time Harry cried or was about to cry. Sometimes, you just need a good love story with pretty dresses, inventive headwear and flowers to keep you going.

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For the past few weeks, I hadn’t felt like writing about cancer. So I’ve been doing other things, like watching the royal wedding, celebrating our own 17th wedding anniversary, running errands when I could, and work got really busy — it was nice to do normal people things for a while.

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17 years ago, at another wedding when an American married a Brit. The American is basically on stilts.

 

Bleh

That’s what I’ve been telling people how I’m feeling since I got my fourth infusion. It has definitely gotten harder with each one — more symptoms, and even the infusions themselves are a little harder to stomach — but I think of all the little kids with cancer who just go in and get the job done — and they push me along. I can taste and smell the drugs as they go in, and it stays with me for a week, seeping out of my pores and my very being. With the loss of every eyelash I feel a bit of my humanity is pecked away, and some days, it’s hard to remember that I had a life outside of chemo. Such is the price of shrinking a tumor.

I am getting better at it. This time I brought a cold compress and held onto it when the dacarbazine went in. I’d hypothesized that the stabbing pains I got afterward were due to the drugs circulating into my hands…and the cold compress experiment worked. No stabbing pains this time! Sucking on ice chips during the Red Devil infusion seems to prevent getting mouth sores. And I eat lots of probiotic yogurt during the first week, which seems to help with the digestive tract issues.

As my friend Alison, who was captain of the first American’ women’s Everest expedition, posts about her climbing experience: “I would love to be one of those people who could say that the climb ‘wasn’t that hard for me’ and that ‘I felt strong the entire time’ and that ‘I knew I would make it.’ But I doubted myself constantly, was never very fast and was never very strong. But here’s the thing you guys: You don’t have to be the best, fastest, strongest climber to get to the top of that mountain. You just have to be absolutely relentless about putting one foot in front of the other.”

That pretty much sums it up. Next scan: June 11.

Q&A

Some people tell me that they don’t know what to say to me, or do to support me. I get it. I wouldn’t know either. And it’s so personal — I read about folks who give advice like “just show up!” and that would actually be my own personal nightmare — please do not just show up. I want to have eyebrows on when you get here. A friend suggested it would be helpful for me to share some information on what would be helpful. Feel free to comment with any other questions too.

What do you wish I knew?

This is a really strange time for me — a time where I am uncomfortably amassing a huge social debt that I know I can ever repay. I want you to know that in whatever way you are dealing with my diagnosis, I appreciate it. The depth of my gratitude is in no way reflected in the length of my response or the frequency of my contact. Know that I receive and value your messages even if I don’t respond right away. Give me a pass if it slips my mind and I don’t respond at all. And if your way of dealing with my diagnosis is that you just can’t engage right now, that’s ok too.

Best thing to do is to have low expectations of me. I might cancel plans if I’m feeling crappy. I might not respond if I’m too exhausted. I’m basically going to be the worst friend ever while I’m going through this.

What’s the best way to contact you?

Short form communication is great. If you write a comment on my blog, I see it and know you’re thinking of me — and that gives me great encouragement without requiring a lot of energy on my part (when I “like” your comment, I really mean it!). Texts are good, but know that sometime I fall behind on them, so please don’t be offended if I don’t respond right away. Emails work, but again, it can take me longer to get through all of them and to respond.

Phone is the mode that requires the most energy from me. I’m not opposed to talking on the phone, but it is definitely the most taxing of the modes of communication…and I need to be in the right mindset to be able to do it. But know that I listen to your voicemails!

Basically, reach out any way that you’d like, but if you can be generous about allowing me time to respond, that gives me time to rest and recover.

What do you want to talk / hear / read about?

I get out so little nowadays that I want to engage with anything that helps me feel like I’m still a part of the world. I want to hear about your everyday life. I want to know what delicious new thing you found at the grocery store, or the best new comfy pants you’ve found on the market. I want to see the details of Meghan Markle’s dress and flowers, or know what people with hair are doing with it nowadays.

I want to look at beautiful things. I want to hear about astonishing developments in technology. I want to see the worst memes on the internet. I want to laugh.

I’m not clamoring to snuggle up with books about death, or mortality, or suffering. I don’t want to talk about cancer all the time, or even talk about me all the time. I’m not ready to hear about your courageous friend or relative who lost their battle with cancer.

Can I visit you?

Yes, but see above. I may not have the energy to be engaged for very long. Here’s a proposal that some lovely friends put together that’s perfect in so many ways:

[Friend] and I have decided to meet up for the day in San Diego because someone we love and adore lives there and we just wanted to be in the same zip code as her even if we can’t see her. We are totally happy to spend a day with just the two of us in San Diego shopping, eating, talking, etc. If we are lucky enough to catch said loved and adored person on a good day we would be made even happier by as much of her presence as we can get. We will take her anywhere she wants (or has) to go, bring her anything she wants to eat/drink, stay for only as long as she wants whether that’s 60 seconds or 60 minutes. But seeing her is not expected, just an added treat. Think of it as flying to LA to see Beyoncé’s house  – the purpose of the journey is to worship Beyoncé via proximity. Actually seeing her walk out of the mansion to yell at the gardener would just be a bonus.
Your end of the bargain is that when you get a text from us saying we’re in town and you don’t feel up to company you reply “purple pineapple”.  That’s also the code phrase if we do see you and you start feeling tired & want to be alone. 
Depending on the day in the cycle, I can also have low immunity levels, so if I don’t give you a hug, please don’t be offended — I’m just trying to stay out of the hospital. Short walks with me are often good ways to visit since being outdoors reduces the risk of exposure, and I like to get a bit of exercise in when I can.
Because my energy levels are low, smaller groups are better, and for short amounts of time. Of course if you’re coming in from out of town I will do everything I can to make a worthwhile visit happen — but just wanted to share all the caveats.

The bright side

Benjamin Franklin

I’m about to post some pictures, and I must divulge that most of them involved drag queen levels of makeup. Most days I look like crap, and I don’t have the energy to put in the effort to either put mascara on my two remaining eyelashes, or put fake ones on.

These arrived on my doorstep a couple of weeks ago:

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I don’t know what it says about me, but I feel most like myself in the blue and pink wigs — more so than in wigs that are supposed to look like real hair. I wore the blue one for a work videoconference, which amused me (and only me) greatly.

One of the moms on our volleyball team is a photographer and kindly offered to come take some family pictures for us. This is great because just recently one of the kids asked me to send her pictures of the two of us together, and I realized that there really aren’t that many — because I’m usually the person behind the camera. For that photo shoot I decided it would be fun to have hair, and eyelashes, and even though by the end of the shoot my fake eyelashes were falling off and part of my eyebrow was erased, it felt good to look like a normal person again. But the blonde wig is really hot and sticks to my face, so not really practical for me on a daily basis.a81u0125

Which brings me to this: there are a category of wigs called halo wigs, which have hair just along the sides — like so:

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I have one of these wigs which we dubbed the “Benjamin Franklin” — and obviously, you have to wear a scarf or hat on top for it to look like you have a full head of hair.

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I am wearing about 10 pounds of makeup in this picture and the fake eyelashes are hanging on by a thread.

I have this fantasy that I’m going to wear the Benjamin Franklin the next time I fly, and when I go through security TSA will invariably ask me to remove my hat or scarf, at which point I’ll just have to say, “Well, okay…!”

Actually I don’t even have to wait for that. I wore this wig for a couple of hours when we went out to breakfast one day, and put a straw hat over the scarf to keep the sun off my face. When I got in the car, I took the hat off, and didn’t even notice that the scarf came off too. For about 30 minutes, a small but fortunate sliver of the San Diego population got a rare glimpse of an Asian-American Benjamin Franklin on the 5 freeway.

Enjoy the little things.

 

 

 

 

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.

Scanxiety

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

Bonding

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.

Security

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.)

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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.

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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

 

 

Rebirth

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

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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.

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!

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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.

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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.

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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.

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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.

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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!

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Not that kind of implant

The chemo port

Yesterday I had a device called a chemo port implanted in my chest, which is, as some of you know, a common way to receive chemotherapy. They basically put a nickel-sized device with a silicone valve under a pocket in my skin, and then threaded the attached catheter up to a vein in my neck. Two incisions: one on the chest, one on the neck.

I had a twilight sedation which meant that I don’t remember most of the surgery, but I did wake up in time to hear the attending physician provide guidance to the resident who was stitching me up, and just to make sure they knew I was awake, I asked if they were cross-stitching a house or a flower on my chest.

I thought that recovery was going to be instantaneous, but have been walking around for the past 24 hours like Napoleon with my right arm mostly bent and stationary. It’s just a little sore and I’m tired,  but definitely getting better. Hopefully it will heal up nicely in time for me to start chemo in short order.

The crunch

After I met with the medical oncologist last week, I started to feel desperate. That night, I felt like there was an icy cold stone burning in my chest all night, and a sense of panic that I had made a strategic miscalculation: I was so focused on getting the surgery right (which is actually very important, and I am 100% sure that I have the right surgeon on board) that I neglected the medical oncology piece until it was too late. I also felt that I couldn’t consult on the oncology til I had a definitive pathology, which took a while.

I was under the impression that there was limited variability in the chemo regimens, but started to realize that I might be wrong. Despite the limited amount of good data on the relative efficacy of the regimens, I felt that I needed to talk to people who had spent more time thinking about it in order to formulate a strategy that met my objectives: 1) maximum efficacy before surgery to shrink / halt tumor growth an destroy any small tumors that are not yet detected, and 2) allow for optimal and long-term performance of the organs I will have remaining after surgery, with minimal long-term risks and side effects.

At the same time, there is an urgency to start treatment. This is a fast-growing cancer that likes to spread. Leiomyosarcoma (LMS) is like the Mind Flayer that controls all the roots and trees in the Upside Down world in Stranger Things (seriously, it is pretty much like that in so many ways — including very new research showing that heat might be a feasible treatment).

So what I needed were the best people who had spent their lives thinking about ways to fight LMS who would be wiling to see me within a week.

The miracles

So I put it out there to God: not in any graceful way, but in a desperate, pitiful, begging kind of way. I had no idea how to make this all happen on the timeline that I needed (now).

And these things happened:

  • A friend of mine with breast cancer texted her patient advocate (PA) asking for the name of someone I might try to see at MD Anderson. The patient advocate, who says that pretty much nobody has sarcoma (true), happened to be with a sarcoma patient in Houston and to have had an appointment the next day with the Godfather of sarcoma, who was not taking new patients. The PA called me, I sent over a synopsis of my case which he hand-carried to the Godfather the next day — and the Godfather agreed to see me. I have an appointment with him in Houston on Monday.
  • I had read about an ex-MD Anderson doctor in LA who gave free second opinions — this guy together with the Godfather pioneered a lot of the drugs that are used in treatment today. I looked at his CV and it all seemed too good to be true, but I emailed him anyway. He called me within seconds, and said that for him fighting sarcoma is a passion and not a job, and that he would help me. He made room in his schedule to see me on the very next business day, Monday.
  • Early Monday morning, I met with my surgeon since I had sent him more questions than any human could possibly answer via email. I told him about my quest to find out in short order about treatment options, and with a quick text he was able to get me an appointment with the head of clinical research / director of sarcoma oncology at Cedars-Sinai in L.A. that same day.

So Monday, I was able to see two doctors highly experienced in sarcoma with different perspectives and rationale on how to treat it. Both laid out strategies and provided alternatives to the original opinion I had received, and shared different ways of administering the therapies as well. Both laid out arguments for me that convinced me of the value of having chemotherapy in advance of surgery, laying to rest my question regarding whether I could achieve the same thing by basically eating kale and mushrooms. So Tuesday, I was able to have my chemo port surgery in peace.

Next Monday, I’ll see the Godfather of sarcoma. And in the meantime, got an email from a college friend who, I was surprised to learn, is a cancer doctor at MD Anderson, saying that she was glad to help, and has already run recon for me in advance.

I’m feeling grateful. Through this whole experience I’ve felt that I’m both the luckiest and unluckiest girl in the world. But now I’m pretty sure that I’m the luckiest.

The bright side

As if there wasn’t enough bright side above: I have a friend in England, who said that the night she learned about my cancer, before she went to bed, asked of the universe that she should find a way to visit me in San Diego. The very next day, her boss asked her if she could travel to California. On Friday, she surprised me on my doorstep.

The past few weeks have been like a walking yearbook. I’m annoyed at myself for not taking pictures of every single visit and every single friend I’ve had the joy of seeing, but I’ll leave you with a smattering of some of the many happy moments of this past month.