People, not meat

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

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

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

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

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

 

Survivor

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

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Current hair situation

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

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

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

The bright side

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

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

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

Oh so soft and cuddly

The eye of the tiger

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

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

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

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

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

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

It’s beginning to look a lot like Christmas

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

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

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

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

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

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

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

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

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

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

The bright side

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

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

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

You did this.

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

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

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

 

 

 

 

 

 

Good timber

Good timber does not grow with ease,
The stronger wind, the stronger trees,
The further sky, the greater length,
The more the storm, the more the strength.
By sun and cold, by rain and snow,
In trees and men good timbers grow.

— from Good Timber, by Douglas Malloch

A very happy birthday

The first time I cried in the past week was after I posted a Facebook birthday fundraiser for the National Leiomyosarcoma (LMS) Foundation. As I’ve shared before, research is woefully lacking for LMS, resulting in studies that commingle many of the over fifty types of sarcomas, all of which behave differently – rendering the studies inconclusive. The most effective of drug therapies have a mere 30 or so percent response rate.

Ten minutes after I posted the fundraiser, I had met my goal.

As of this writing, we’ve exceeded that goal by 1,391%. I don’t know that I’ve ever beaten a financial target by that much (a good reason to cry, though that’s not why I did). Friends and family from around the world and all stages of my life, as well as people I don’t even know, kindly and generously gave toward research for a disease with limited market value. Even though LMS makes up only 0.2% of cancers, the impact is still significant — 13,040 people in the U.S. alone are expected to be diagnosed in 2018, with 5,150 deaths projected in the U.S. this year.

The second time I cried was yesterday, while waiting to see The Godfather (as if I weren’t already puffy enough from chemo), when Sacha shared with me a video compilation of messages from friends and family wishing me a happy birthday. I don’t know who you guys were talking about in the video, but I’m flattered to think that even some of it might be true (except that part about me as a kid leading the charge amongst my cousins in creating an illustrated book about butts – that part I know to be true).

The third time was this morning when I went out for a (short and slow) run — and this song came on. The video is kind of distracting for me, because it features the girl who throws up at the beginning of Pitch Perfect, but I’ve always loved this song and I hereby dedicate it 1984-style to my husband.

Two takeaways: one, that I have been inexplicably blessed with the best, kindest, most eloquent of friends and family. Two: that anything is possible.

Above: my niece and I celebrating our September birthdays together (photo credit to my sister-in-law Amy)

I was never one for making a big deal about my birthday, but this year, I saw it for what it was: a celebration of life. I’ve made it for a whole 47 years. Cheers to that!

The harvest

“So you finally realized that you’re on chemo,” the Godfather joked when he reviewed my latest symptoms. This past round was rough. I’ve been remarkably fortunate in how well I’ve tolerated the chemo to date – 24 infusions of high toxicity – but it did finally catch up with me.

Two weeks out from my last infusion I am finally feeling better, and did my first run in a while three days ago. Most octogenarians would have passed me in a race (full disclosure: this happened to me in an actual race even before I had cancer), but it felt good to know that I was telling my legs to move, and that they were actually doing it.

Based on our last visit, where the Godfather shared that there was only about a 20% chance that we’d see a major response from the tumor after chemo, I was expecting a report of stable disease. And that’s what I got: after this past four rounds, there wasn’t any change in the tumor. We had hoped for some further reduction in tumor size (I guess my hyperthermia experiment wasn’t a huge success), but yay for no spread to other organs.

And, as anticipated, the next step is the surgery, where we harvest a bunch of organs. That is likely to be in early October. Between now and then, my job is to get as strong as possible so that I can recover well from a long and complicated surgery. As a refresher, the organs in play are the liver, right kidney, inferior vena cava (the primary vein in the body) and right adrenal gland.

Now the part I wasn’t expecting was this: based on the location of my tumor, it is not likely that the surgeon will be able get wide negative margins – that is, that we will be able to remove the tumor with at least 2 mm of disease-free tissue around it. That means that there is likely to be cancer cells left in the body, which is in turn almost guaranteed to result in recurrence. So, it is looking like I will need to do more chemo 4-6 weeks after The Harvest, in hopes of killing the remaining cancer. That’s going to be kind of rough, with a bunch of missing organs.

I’d just started growing some very confused hair, the texture of a 14-year-old boy’s mustache if he had inserted his finger into a light socket. It’s growing in a George Costanza male pattern baldness formation, but it is hair nonetheless. So now I’ve resigned myself to the fact that I may sport the Yoda ‘do for a while.

And you are…?

Speaking of hair, what’s been amusing about this experience is how confused people are about my appearance. When I’m feeling well enough to be out and about, I don’t look particularly sick. I’ve gotten almost okay at putting on fake eyelashes for the odd outing.

It’s confusing for people. I can hear them thinking, is she…transgender? A Tibetan monk (not helped by the fact that I have devolved from wearing elastic waistbands to wearing no waistbands at all)? Heaven’s Gate?

I’ve reduced these findings to a few basic formulas:

  • wig + false eyelashes + lipstick + dress = drag queen
  • no wig + no makeup + flowy sack dress = Hare Krishna
  • no wig + no makeup + bald husband + Nike sneakers = cult member

The combo I rock most often in public is:

  • no wig + fake eyelashes + earrings = cancer patient

At home, it’s Hare Krishna all the way.

The bright side

I’ve had a lot of infusions, and it is amazing to me that I haven’t done a single one alone. When I go to the infusion center, or as I like to call it, the Cancer Country Club (CCC), I am usually accompanied by one or two friends – often, someone who also gets treated there. Our little group is a known entity at the CCC, with staff members asking after people in the crew. And infusion nurses – they’re just the most incredible people.

The CCC is the only place I’ve ever been a regular – where everybody knows my name, where I have a special parking code, and where we actually laugh a lot. It would be just perfect if I weren’t having toxic drugs pumped directly into my heart. To my CCC crew: I couldn’t have made it this far without you. Your grace, your friendship and your strength have carried me.

Every morning when I wake up, I have a routine. First, I make sure my brain is wired the way I need it to be, so I meditate for about 15 minutes. Then, I pray (this coincides with my reluctance to actually open my eyes in the morning). I start by giving thanks for all that I have – my friends, my family, the opportunities I’ve been given, the resources that I have, the chance to do interesting work, my relative health despite the circumstances – and every single day, I stop there and think, holy crap – I have everything.

Just to balance things out though, click here for some kind of depressing research about alcohol.

Some things that bring me joy:

  • Performing activities like scrubbing the fuzz off of our garden cucumbers while saying things like Hulk-style, like, “Voldemort clean fuzz off cucumbers!”
  • This brilliantly written article about Gwyneth Paltrow’s Goop
  • Exit West by Mohsin Hamid – he was apparently at McKinsey when I was, and I am dying to see if his decks were as beautifully written as this book (thanks, for sending it, SW!)
  • Meredith Toering’s Instagram feed – Meredith works at an orphanage in China that cares for children who need lifesaving heart surgery, and is nothing short of extraordinary
  • My fruit and vegetable garden

The bar for experiencing joy is exceptionally low if you allow it to be. That in itself is cause for celebration.

Play it again, Sam

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

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

 

The report

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

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

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

 

A/B Testing

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

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

 

He who must not be named

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

Still, he is a celebrity.

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

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

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

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

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

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

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

 

Training for the big one

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

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

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

 

The bright side

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

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

 

 

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.

img_6374
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.

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.

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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