Siberia, Antarctica, the holding rooms in the Diagnostic Imaging department at MD Anderson — these are among the coldest places on Earth. I bundled up in advance this time, so when one of the technicians walked by and asked if I wanted a blanket, I hesitated. “It’s free!” he shouted cheerfully. “It’s FREE!” Well, okay, if it’s free…
A year ago, I was full of tumor and hope and headed in for a major surgery. This Monday morning, I was short a few organs and a little anxious. In the consults immediately following the surgery, I wasn’t terribly nervous because if they’ve just taken that much out of you, what even is there for anything to grow on?
But this time was different. Between scans, I had some unexplained numbness in my hands, feet and face. I noticed every single ache and pain and bump.
But thankfully, I was able to celebrate a major milestone: I am one year NED! The physician’s assistant even told me as we looked through my scan that I had a “beautiful retroperitoneum” and that she used my scan as a case study (I will accept any compliment, even if it only involves my abdominal cavity).
Life in between scans (which are every 3 months), is pretty great. Right after a scan, I don’t worry about much at all; I stick to my routines with diet, exercise and mindfulness. I nag my teenagers and white-knuckle my way through my student driver’s rides. I go to games. I made good on my promise to go to my 30th high school reunion in Virginia. I saw my best friend from elementary school and close college friends.
Like many survivors who feel they’ve gotten a second chance at life, I feel called to do something to make things better for everyone else. Except that I’m still not sure what that is. The National LMS Foundation, an organization that is doing good things but whose logo makes me embarrassed to have the disease, asked me to create a video with advice for new patients, so I did that. I answer friends’ health related questions, with the caveat that you should not take medical advice from a marketing professional.
I try to keep up with research. My mom is now stage 4. She just got back from a great trip to Taiwan to visit family.
The work of treating cancer is evolving – and it seems to me that the most effective treatments will be a combination of metabolic therapies and targeted therapies. There are lots of things that are slow to be explored because, like any industry, cancer research involves people – who have egos and personal agendas and professional goals and legal concerns — that can get in the way. When I find out interesting tidbits – about prevention, treatment, or wellness in general, I want everyone to know. Maybe making this information digestible is something I can do. I’m open to ideas.
Other than trying to ascertain my higher calling (or working in my current calling), I’ve been gardening whenever I can. I just got my first bee sting ever today, and was kind of excited about it. I joined the San Diego Rose Society, whose meetings I love because I am the only person under the age of 70, and nobody bats an eye if someone is foaming at the mouth or calls Betty “Ethel”(they also use this poor quality mic that makes everyone sound like bees, but it doesn’t matter because most people can’t hear anyway). I paint for fun. I’ve become a nut milker, having received a low-tech but effective milking contraption for my birthday. I am brewing kombucha, fermenting vegetables, and making yogurt.
If you, too, would like to get back to basics, making your life infinitely more complicated and unraveling the benefits of specialization and the industrial revolution, then I highly recommend the Living Homegrown Podcast.
Lying on the bed of the CT machine, after having been offered a blanket, I wondered why they kept the rooms so cold.
“Ah don’t know WAH they do it,” said the scan technician in an endearing Texas drawl. “Cause we’re PEOPLE, right? Not meat.”
It’s spring break in Houston, which explained why I didn’t have to wait long for my blood draw, or even for my scan, and my appointment with the Godfather happened within an hour of the scheduled time. That meant that I didn’t have wait long for the good news: I’m still NED! Because I’m people, not meat, baby!
The Godfather said that everything looked great, he heard that I did a half marathon (false: it was only a 5K), and that he would see me again in three months. We ended the consult with him patting my hair as if I were a collie, and his signature healing hug.
Our flight was delayed so we had some time to visit the Houston Museum of Fine Art, where there this floor to ceiling video of kittens drinking milk was on loop.
I recently transitioned from calling myself a cancer “patient” to a “survivor.” It feels pretty great to say that. I have hair now, so people don’t generally know that I have this haircut not because I’m emulating Jim Carrey in Dumb and Dumber. I drive kids to practices. I make dinner. I work.
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.
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!
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!
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.
When I turned on my phone, it lit up with hundreds of notifications. It wasn’t until today that I could scroll on a phone without feeling nauseous, so I am working my way through all your messages and comments, and just wanted to say thank you — thank your for all your prayers, for your encouragement, for your love and support. I was carried by it all, and it made me feel invincible. And now, after having demonstrated my pee and poo skills (strangely not endorsed on LinkedIn), I have been liberated from the hospital and am recovering at home!
Big Dig recap
You pretty much got the play by play thanks to Sacha during the surgery, but I thought I’d do a quick Q&A here too. Feel free to post any other questions and I’ll answer them!
How do you feel about the outcome of the surgery?
As Richie posted, yay liver!!! Thrilled to have a gall bladder too, and the grossly clear margins are promising. The surprise was learning that the surgeon actually found and removed a 1 cm tumor on my stomach, which he suspects is GIST tumor (pathology needs to confirm). These tumors are even more rare than LMS tumors and occur about 4-6,000 times per year annually in the U.S. But, he said that my prognosis will be primarily determined by the LMS tumor, and that the maybe-GIST has a low likelihood of recurrence particularly when they find it early.
Were you a little scared that you might die?
Yes. Like 5% scared. Sacha said that he was more like 15% scared. I had one meltdown before surgery entitled “I Don’t Want to Die,” where I just needed to put it out there in case anyone was wondering. After that, I might have hugged my family a little tighter, teared up a little more at everyday things, and held off on ordering a few items that were on sale because who would be able to return them if I died, but mostly I was ready to do this.
During the surgery, were you able to astral project and haunt your children at school as you had hoped?
What’s recovery been like so far?
Far worse than the pain was the debilitating nausea, which was constant for the first few days. I wasn’t allowed food or water on days 1 and 2 — and was only allowed to have a mouth swab, which is a small sponge attached to a lollipop stick, every so often. I spent what felt like an eternity shaking, unable to open my eyes, and feeling sick. I did a lot of meditating and praying to pass the time. The narcotics made me really ill (vomiting after having your guts removed: not recommended), and the anti-nausea meds didn’t really help, so I started refusing pain meds.
Since they had operated on my stomach and manhandled my intestines, they wanted to be sure that both were working before allowing me too much food or liquid. Thing is, my digestive system is probably the most efficient thing about me, and I had a chat with it beforehand just to say, hey, step it up soon after surgery — so even though I could feel that peristalsis was starting, no one else could.
Not helping the situation was the fact that we were put in an overflow ICU unit, which was basically a 9×9 room with no windows or bathroom and little room for the bed and equipment. It’s meant for quick interventional radiology procedures — not for long term patient care — and it was so tight that the nurses often had trouble maneuvering around the bed to get to all my tubes. We couldn’t take out my catheter since there wasn’t a bathroom nearby.
Things got a little better when I was able to have tiny sips of water — a cup to last me a day. They were even better once I could have clear liquids (I had a broth which I later confirmed was disgusting, but the first bowl I had tasted divine, in contrast to sucking on a sponge), and was moved into an actual patient room. I continued to feel nauseous since I was getting pumped full of medications on an empty stomach. Please, I begged them, if I could have just one grape, or a slice of banana, I would feel better.
Once I was allowed soft foods, things improved immensely. The nausea was drastically reduced and I started taking IV Tylenol. Now, I just have pain, which in contrast to nausea, is really no big deal (except when I cough — ouch). And of course, being freed from tubes and wires attached to the nine holes they made in my body was a huge relief.
What does your incision look like?
Find the bottom of your sternum. Now start drawing dark purple a line about 1/2 inch thick down to your belly button. Then, make a rounded 45 degree angle toward the right, and go straight all the way to the right hip. Instagram-ready!
What did the tumor look like?
An uncooked pork roast. It completely encapsulated my kidney and part of my inferior vena cava (IVC), so it was impossible to distinguish between organ and tumor. The total length of what they took out was 15 cm. The graft on my IVC is a piece of plastic pipe that looks like the accordion part of a straw. So I guess technically you could say I got plastic surgery.
How long is recovery?
Full recovery apparently takes a year, and I’ll feel about 80% at 6 months. Fatigue is the primary long-term side effect as my body figures out how to work with a couple of missing organs and a grafted inferior vena cava. Oh, and I’m on aspirin for life, to prevent clogging of the graft.
Does it still hurt?
Yes. Especially when I cough.
This is a long post. You must feel great!
Nope. This took me all day to write.
What do you hope happens next?
Since I’m the proud owner of a full gall bladder and 99.5% of a liver, I’m emboldened to ask for more. I pray boldly for the pathology to show no visible cancer left behind. I hope for a miracle that eliminates the need for me to go back on chemotherapy right away. I want to be well enough take full advantage of what a friend described as my membership in the Second Chance Club.
Moving the needle
I had a chat with my surgeon about how to advance LMS research. We don’t have drugs that meaningfully affect the tumors; we don’t understand its causes or why it is so apt to spread.
It sounds like there are three main obstacles: money, people, and collaboration. For instance, he has a lot of data — but he doesn’t have the $40-60K per year to hire an analyst to actually input that data so that he can actually start asking important questions about LMS. Some institutions are reluctant to collaborate and share data with other organizations — something that is critical to a disease as rare as LMS where you’ll never get a big enough concentration of patients to conduct a meaningful trial. So things labor on with poorly constructed, commingled studies.
It seems like there are many solvable things that could at least get us moving in the right direction. So I said that after my belly closes up, we could talk more about ways to push things forward.
The bright side
Let’s start with the obvious: I’m alive. I’m home.
I’m so grateful to my surgical team for doing their best and for not eating Subway sandwiches over my open abdomen despite the very long procedure.
I’m amazed by the nurses who carried me through with I’m imaginable care and grace: the nurse who sat and held my hand at night when I couldn’t even figure out what I needed to feel better. The nurses who came in repeatedly without complaint to move and rearrange tubes so that I could rotate myself in bed just a little. The Mark Zuckerburg doppelganger who advocated for me to get oral potassium pills when the IV infusion burned my veins. The young A-Rod look-alike who happy-danced for my amusement when we found out I was getting a real hospital room. Nurses, I salute you.
My friends and family: you lifted me up to God until he was like, alright, alright, shut up already, she’s gonna be fine. You waited on updates. You sent along encouragement. You took care of my kids. You lit up the world with your positive thoughts and healing energy. Thank you.
I was home after just four days — well before the expected six to ten. I am so thankful to be recovering at home with my three untrained nurses. They’re strong enough to pull me up from a reclined position, and that’s good enough.
It’s been a long time since I’ve been praised and high-fived for passing gas and bowel movements. I’ll take it.
This morning, I got my two teenaged girls to color with me. Check out the coloring skills of a high school sophomore — she made mine look preschool:
Yesterday, from the hospital window, I saw this sunrise:
By this time tomorrow, I will be lying on a table and a surgeon will be brandishing his scalpel. I imagine that it comes in a neat little robin’s egg blue box like the one I had in college. I hope that his, in contrast to mine, is properly disinfected.
By this time tomorrow I will know what it’s like to have an IV in my neck (Right??!? Apparently they can’t use my chest port since they need a way to get high volumes of blood in fast, in case they need to.) and possibly try to astral-project myself into the kids’ classrooms while I’m under anesthesia, just to say hi and pay attention because I’m watching you.
But today, I’m getting ready. I’m going to do the last run I’ll do for a while, eat a giant breakfast, and then embark on a bowel cleanse. I’m setting expectations with the organs that are staying that something unusual is about to happen, but that they need to get a grip and step up. Also, I need to figure out how to get Post-It notes inside with friendly reminders like “Don’t forget to put the intestines back!” and “Bowels are like vowels — they’re important!”
So just a few things I wanted to pass along. First, thank you for all your pre-surgical messages of encouragement and prayers. I’m sorry if I don’t get to respond to all of you in advance, but know that I receive and treasure your messages. I can’t imagine that anyone could go into this in a better situation than I.
Secondly, thanks for your concern and requests to be notified of updates. Sacha is going to update the blog tomorrow when I come out of surgery. I would expect an update maybe around early to mid-evening Pacific time, since we’re told to that the surgery will run all day.
Finally, I’m going to borrow a phrase from a friend and say that I send you all oceans of love.
I’ve got a surgery date: October 9. In less than two weeks, I will weigh about 4.5 pounds less.
It’s an auspicious date. Historically, on October 9:
My maid of honor got married
Charles the Bald was crowned king of Lotharingia
Slavery was abolished in Costa Rica
Laura Ingalls was the first woman to complete a transcontinental flight (are they sure about that one…not Little House on the Prairie?)
Kathy Sullivan became the first US woman to walk in space
The Dow Jones Industrial Average closed at an all-time high
During my last surgical consult we talked about lots of things…blood transfusions (hoping I won’t need one), epidurals (too risky to give me one), recovery (long), and Heaven’s Gate (potential Halloween costume if in Rancho Santa Fe). The surgery should take up the good part of a day.
They won’t know until they open me up exactly what they’ll take out, but the definite ones are the kidney and adrenal gland; possibly half the liver, gall bladder (that was new) and then there’s the potential reconstruction of the inferior vena cava. I don’t remember if I shared this before, but I actually have an extra one — an inferior vena cava — apparently awaiting 47 years for its moment of glory. We don’t know yet if the extra one is actually going to be helpful, but I like to think so — why else would I have one?
The surgeon told me not to eat anything after midnight the day before surgery, but then his nurse called to tell me that he had ordered a “bowel prep” the day before, which means no eating after breakfast the day before surgery, and 300 ml of liquid magnesium citrate for lunch. I enjoy eating so much that for the removal of my wisdom teeth I opted for local anesthesia so that I could optimize my food intake the day before (a story for another time). I am not very nice when I’m hungry, so avoid me the day before surgery.
I’m ready. I’ve been waiting a long time to get to this point, and even though I’m likely to have chemo afterwards, it’s a big milestone. Sacha asked the surgeon to take pictures of the tumor — so we can, you know, include it in our Christmas letter.
In other news
My mom has also started being treated at MD Anderson. They weren’t able to remove all the cancer in her first surgery, so now, since there’s been growth, she needs to decide whether to have a second surgery to remove the lung completely, or to head down the radiation / chemo path. Each choice has its own benefits and drawbacks. Once again, we’ll both be enduring major medical treatments at the same time.
Another strange development is that in the course of just a few months, there have been three other people in my extended family, and a former classmate, who have been diagnosed with cancer. I don’t know if that’s unusual but it seems like a lot. Especially because I’m always on the lookout for other bald people free of eyelashes and eyebrows, so I can share a knowing look like we’re in some kind of fight club, and I hardly ever see them.
I’ve been keeping busy. I work out with the diligence of a person training for a race, and I’m trying to get my work wrapped up and in a good place before the 9th. I go to the kids’ games and events whenever I can. If you had asked me years ago if I’d be working during cancer treatment, I would’ve said no way. But I don’t get stressed about work anymore (turns out, cancer is more stressful than work). It’s a welcome distraction, and a good way to keep my brain tuned up while it’s fighting the brain damage from the chemo.
The bright side
I went to see my niece in a kindergarten soccer game last weekend, and it delightful. It was like watching foosball…or as my brother said, foosball where the handles are loose and you can’t quite control the players. At the end, the girls didn’t care who won or lost, and after shaking hands the sea of red and purple uniforms commingled and they were alternately holding hands, spinning around and hugging one another, like they were doing the Virginia reel, which I actually learned how to do in a Virginia public school.
My best friend from elementary school surprised me by mailing me a package of notes I wrote in the early ’80s and shoved into her locker. I appeared to be a prolific note writer, favoring cursive writing, obsessed with something we were plotting called “Project Boogeyman”. I am 100% sure that these notes were composed during class, which makes all the more remarkable the fact that I now possess a college education.
Separately, a friend from high school also sent me photos of notes that I had written in the mid-’80s. As my kids would say, they were very “cringe-y”. I never would have survived anywhere outside of that science high school.
In my last post, I linked to this article in the New York Times about Gwyneth Paltrow, which I read no fewer than ten times and gleefully quoted and sent to some of you, possibly more than once. So you won’t be surprised to know that when I received a message from the author — one of my writing idols — I nearly fell out of my chair (I didn’t was because I was in a car, secured by a seatbelt). Turns out she is the cousin of one of my business school friends, who shared my blog with her, and in an ultimate display of grace and eloquence, I responded to her: “Eeeeeeeeeeeeeeeeeeeeee!!!”
Which is what I’m hoping I’m going to say after the surgery.
Good timber 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!
“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:
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!”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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:
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.
Which brings me to this: there are a category of wigs called halo wigs, which have hair just along the sides — like so:
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.
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.