Houston chronicles

The room

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

I could use a room like that.

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

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

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

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

The pivot

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

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

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

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

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

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

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

The bright side

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

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

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

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

The wilderness

The hair

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

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

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

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

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

Mi madre

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

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

The chemo

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

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

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

The God part

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

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

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

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

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

 

The bright side

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

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

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

Kathleen Norris
Acedia and Me

 

 

Go Blue (and Red) Devils

The day before

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

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

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

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

Infusion day 1

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

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

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

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

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

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

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

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

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

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

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

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

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

The bright side

Stripper wig

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

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

I smell like Whole Foods

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

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

God bless Texas

Lightning strikes

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

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

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

Rice Village

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

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

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

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

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

The Godfather of sarcoma

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

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

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

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

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

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

The bright side

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

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

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

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Not that kind of implant

The chemo port

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

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

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

The crunch

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

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

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

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

The miracles

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

And these things happened:

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

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

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

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

The bright side

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

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