Exuberant activity

Apologies for the delay in providing an update. I wanted to wait til all the details came in before sharing so as not to spread the anxiety of anticipation.

The surgery went really well, and was by far the easiest surgery I’ve ever had. There was a little scare the week of surgery wherein I had a surprise biopsy of the hard-to-reach-therefore-previously-not-biopsied-suspicious lymph node, and a few days of stress waiting for the result, but that came back ok and surgery went as planned.

It was two weeks before I got the pathology report, which I like to think was written by a pathologist with secret longings to be a writer, which said that there was an “exuberant lymphocytic reaction.” That means that my body exuberantly (with kegs and noisemakers) launched a very strong immune response to the cancerous cells, which is a good thing and likely prognostically positive. This has never appeared on any of my previous pathology reports, and I am hopeful that the program of supplements and off-label use of medications that I am implementing under the supervision of an integrative medicine doctor and an integrative oncologist has had something to do with this.

The surgeon did a great job. The results exceeded my expectations, and I felt pretty normal right after the surgery. ⭐️⭐️⭐️⭐️⭐️ highly recommend over organ or muscle removal!

The bright side

I was able to take a little trip with Audrey to Ojai after surgery. We had a grand old time getting facials and enjoying ourselves at Rory’s Place, Rory’s Other Place, and The Dutchess. Though I’m not supposed to lift anything over 10 pounds, I pretty nearly have full range of motion — enough that I was able to cut my own hair shortly after (it’s a tic).

One of the things that has gotten me through this period is a bunny who meets me on the trail. At first he was shy, but eventually, he let me get closer and closer, and sometimes, if I seemed particularly anxious, he would hop around playfully to say, lighten up, lady! I also called the Peptoc hotline a bunch; those kindergarteners really know how to cheer a person up.

To top it off, we just finished up a wonderful week of bestie visits and Easter celebrations.

Next up: Amelia’s college graduation! Thank you friends and family, for seeing me through yet another medical adventure. I am grateful as always.

By the way, if you’re not seeing these emails all the time, I’m probably on the “social” tab of your email interface…so if you don’t consider this spam, look for it there.

Fight Club

I took a tai chi and self-defense class last weekend, and at first, we were instructed to punch our partners. My partner and I looked at each other and realized that we didn’t really know how. But by the end of the session, I accidentally hit her too hard, and the sequence of movements felt natural to me. I liked it. I realized I might actually want to fight people.

But I’ll put that aside for now, because in an couple of weeks I will have a surgery. It has been a rollercoaster ride since last November, between trying to figure out what was lighting up in my chest, having two suspicious lymph nodes (and not finding out about the second one until I was lying on the biopsy table), and working through all the possible solutions and permutations given my medical history.

So the good news: it’s not leiomyosarcoma. It’s instead a form of early breast cancer, in my right breast. That part was a relief (is it bad when you’re relieved about breast cancer?). Then came the suspicious lymph nodes — one which they could not biopsy due to its location, and the other which we did and which came back benign (at which point I felt like I won a prize because I have never, ever had a benign biopsy before). So they are cautiously optimistic about the lymph nodes but we will monitor them closely.

I had always assumed that I would be able to reconstruct, but after consulting with five doctors, I won’t be doing that. Given my cancer history, the chronic inflammation a foreign body like an implant would cause would, in a really simplified explanation, take immune resources away from fighting disease. I had to mourn that for a bit. If I write a memoir it’ll have to be called What’s Left of Me, because everything on the right is gone.

The bright side

I’ve been feeling good — I have plenty of energy, and can do pretty much anything. Sacha was traveling for the past two weeks, so I said yes to nearly everything, including visiting a worm farm, volunteering, learning how to make dumpling skins, meeting with an incredible mission and restorative-justice-driven bakery downtown (Yelp’s #1 ranked bakery in the US), hearing author Jesmyn Ward speak, co-working with a friend, seeing a play, hiking to a waterfall, attending the inaugural game of San Diego FC (MLS team), and going to a friend’s book launch.

I have been devouring all things Edith Wharton: The Age of Innocence, Glimpses of the Moon, The House of Mirth. I visited her home in Massachusetts last year and was struck by her intelligence, her industry, and her creativity, and started reading her books to get a peek into her brain. She is the most astute observer of society…I’m pretty sure I read Ethan Frome in high school but my brain was probably not developed enough to understand how clever she was. Anyway, it’s more fun that reading the news.

The girls will be back one after the other for spring break. Much to look forward to.

Sensible Shoe Era

Still here! Sorry for the delay in updating. Turns out staying alive is at least a part-time job, which, along with my actual job and living my off-screen life, keeps my days full.

I meant to update in March, but follow-up imaging and appointments in between meant that it took longer than usual to get a definitive read, but as of my last scan, things look good. And now we’re bumping up against the next set of scans, which will happen over the next month, and yes, I’m back on the every three month surveillance cycle.

But enough about disease. Things I have been doing:

1. Feeling well
2. Maintaining a long and laborious health routine not worth detailing here
3. Smelling flowers
4. Visiting kids in faraway places, and seeing some friends along the way
5. Listening to audiobooks while reading physical books
6. Drinking my way through my tea collection
7. Enjoying using charcoal toothpastes that come out black

On recent travels

I have also started working with an integrative medicine doctor and integrative oncologist on more aggressive strategies in preventing cancer recurrence. I realized I could do the same thing that I did before and wait for something to recur, or I could identify evidence-based approaches that aren’t harmful and look promising in an effort to be as proactive as possible, so I chose the latter.

The bright side

I’m thankful to be out of active treatment, and to have the resources to be able to seek integrative care. I’m grateful to have traveled to see people I love and miss, and to have celebrated weddings and honored lives well lived.

Good books I’ve read:

1. Outlive: this feeds my character flaw of constant optimization, but I enjoyed the holistic and evidence-based approach to health management with a strategic focus.
2. Glucose Revolution (thanks for the rec, F.Y.!): an easy read and showed me the fun you can have with a glucose monitor.
3. Everything Isn’t Terrible (thanks, C.T.!): anxious overachievers rejoice! This book is for you.
4. The Heaven and Earth Grocery Store (thanks, M.S.!): lovely lovely storytelling
5. The Mothers (thanks, S.F.!) and The Vanishing Half: Brit Bennett is incredible.

Outlive and my dad’s foot issues have pushed me into the world of optimizing biomechanics, and has led me into the world of barefoot shoes. So I have officially entered the sensible shoe era, and no matter how fancy your event, I will be sensible and comfortable in my club-shaped footwear.

My two favorite barefoot shoe options so far

May your toes be free and your summer be bright.

We Did it Fish!

I am officially home for the holidays! If someone ever asks whether you want a bunch of organs or muscle taken out, definitely choose muscle. This has been easier than my first surgery.

At 5 AM (when I still had my trusty Manta sleep mask on), a phlebotomist came in to do labs. Even though I had two IVs and a port, they had to poke me every time. So I just extended my arm and let her poke while half asleep. When the nurse came in, she gasped because my blankets were covered in blood. A phlebotomy hit-and-run! Since anything not life-threatening at the hospital is entertaining, it was mildly amusing.

Where exactly did she put the needle?

You might recall the resort-like hospital rooms I’ve had in the past at UCSD — this older part of the hospital is nothing like that. The rooms are tiny, the towel dispenser didn’t work, and the tray over the bed would gradually sink until it crushed my legs. But the nurses are fantastic. All the same, I was happy to bid goodbye to the room today.

Leg-crushing table on the right

I came home, went up the stairs, and showered! I have a souvenir for ten days — a drain that I’m carrying in a sexy pouch – but I’m home.

Is it a drain? Or could it be a bag of gold…

The bright side

I’m home.

I can walk.

I know I’m repeating myself, but thank you so much for the prayers, encouragement, notes, guides on how to become a dictator, and love. They truly made a difference.

In a little over two weeks, I’ll have both of the girls home. I’m looking forward to Christmas. Thanks fish.

The Most Wonderful Time of the Year

…is when you’ve got a surgery behind you! It went well — they took out an 8 cm chunk of muscle. I saw the photo and it looked like an uncooked pot roast, and for a moment I had paranoia about eating roasts with tumors in them, but let’s not go there. Pathology will take between two and fourteen days, and will determine next steps.

About 12 hours after surgery, with the help of a PT, I was able to walk a couple of slow laps around the hospital floor. I’m up to 8 laps today.

The bright side

Nearly all of my doctors, aside from one resident, was a woman! I’ve never had that happen before. I had a neuro anesthesiology team that listened carefully to what I said (e.g., history of nausea and vomiting and being awake for hours but unable to control my body) and collaborated with the anesthesiology team and surgeon to come up with an approach to minimize the risk of those side effects. I’ve had this conversations with other anesthesiologists before but none were willing to change up their regimens (they just added more anti-nausea meds which doesn’t really help in my case — no hate to male anesthesiologists!). One of the drugs they gave me was the one known for killing Michael Jackson (they told me this). After I woke up I felt clear-headed with no nausea, and was even hungry enough to eat some Din Tai Fung that a friend very kindly brought over!

Also, turns out that two of my friends had surgery yesterday, and for all three of us it went well!

I ended up getting put into an actual hospital room — not in the nice part of the hospital, but a room with a door nonetheless. I brought the Manta Sleep eye mask that a world-traveling friend gave me and earplugs, and I actually slept pretty well for 5 hours. I will probably get discharged tomorrow.

My surgeon, who is at a conference in LA all day, plans to stop in tonight on her way back. She is incredibly smart, accomplished, and dedicated, and I have no idea how she does all that she does, but I’m so grateful that she is on my team.

I went into surgery completely at peace, because so many of you were praying for me, in your own ways. Thank you. That made such a big difference. Love you all.

Quick Update: Surgery

My surgeon was hoping to move my surgery up from December 20 to December 5 — pending a review from upper management, prioritizing my case against others. But over Thanksgiving week, the tumor site went from being the size of maybe a walnut to being the size of a grapefruit, and was starting to cause some pain and limit my mobility. This was alarming (and without an MRI, we don’t know what’s going on), but the good thing to come out of it is that she didn’t want to wait til the 5th, so I just found out that I’m scheduled for surgery on Friday, December 1. Because it’s an emergency surgery slot, I won’t go in until the afternoon, which means I’ll be hungry and thirsty all day, but so be it.

The insurance company did not approve a hospital room for me, so I’ll be staying in an observation room — the kind they put you in while they wait for you to wake up from anesthesia. I was in one of these for three days last time, when they just didn’t have a room available, but it really isn’t ideal — it’s noisy and bright and, well, you’re not really supposed to stay there overnight. Again, so be it. Apparently this happens all the time with orthopedics — if it’s an orthopedic procedure, they assume that it can be outpatient. The surgery is slotted for 4 hours, and I’m going to try to do it without general anesthesia if they let me (yes, I hate recovering from general anesthesia that much). I am also going to try to refuse the narcotics again (I hate those too) — I survived my last major surgery on Tylenol, so hope to do the same again.

The bright side

I am so grateful that we could find an earlier date for the surgery. My friend S is having surgery on the same day (praying for you, friend!), so I have a feeling it’s a lucky surgery date.

I have a whole wish list coming out of this: that the surgery would be successful; that we would get clean margins; that the recovery won’t be too painful; that it is, by some miracle, a cure. Some of you have called me a warrior; I find that funny because that’s not my mindset at all. I’m much more of a dictator type. And dictators really do not like not having control. Maybe this is why I was not granted an actual dictator role in real life.

Your love, prayers and support — they carry me. I’m trying to heed the advice of a wise elementary school friend who wrote: “Please know that God is on your side. Do not think about it too much, and you will do great!” (another favorite message: “You got this fish” accompanied by a picture of a fish).

All I Want for Christmas is

…for someone to make an incision from my groin to my knee and perform a radical resection of my adductor magnus muscle. And it looks like I’m going to get it! I’m waiting on a surgery date, but if all goes as planned, I should be done with treatment before the end of the year!

I had my very last appointment with the Godfather a couple of weeks ago. The tumor in my leg (which, remember, we are using as a test case to hopefully see if the treatment can eliminate any cancer elsewhere that we can’t see yet), showed 70-80% necrosis (tissue death — this is a good response). He said that his preference was not to radiate right now, and to go straight to surgery — because if we get a recurrence in the same place, we can always radiate and do surgery at that point, but this way we might be able to save me from some radiation I may not need. Then we had the longest hug ever and because neither of us are super stable, almost fell over.

Prayer tree at MD Anderson

When I got back to San Diego, my surgeon agreed…so now I’m waiting on a surgery date (they’re trying to squeeze me in). She said that I should be able to take some steps after the 4 hour surgery (after which she says I’ll look like a “tufted sofa”). It sounds like it might be a while before I can walk normally, though eventually I should be able to.

Riding vacuum @ MD Anderson — maybe post-surgery?

The experiments

Concurrently with the chemotherapy, I’ve researched and tried a number of complementary therapies, because it seems to me that there really isn’t a silver bullet here (and especially not with stage 4). In case it’s helpful to you or someone you know, some of the things I’ve tried are:

• Local hyperthermia: there a number of papers (here’s one) discussing hyperthermia and cancer treatment, and there are some facilities (one popular one is in Germany, and I’ve found some private facilities in the U.S.) that will perform whole-body hyperthermia. The gist of what these paper say is that heat between 41–44 °C for 30 minutes was not shown to be toxic to normal cells while inducing toxicity in cancerous cells, and it can enhance the effects of chemotherapy. Patients on online boards who’ve gone to Germany for hyperthermia reported that it seemed to help encapsulate their tumors at the very least, and at best resulted in remission. Because my leg tumor is close enough to the surface of my skin, I just did a hack job of it with a heating pad, 30 minutes a day.
• Medical Qigong: read more about that here. I had heard of stage 4 patients who achieved remission using medical qigong, which is administered by a practitioner (different from qigong, the exercise). My wonderful acupuncturist recommended a practitioner to me, and after the first session, I was honestly unsure I’d continue. But when I got home, to my surprise, the mystery swelling in my left (tumorless) leg went away, and I had to actually search for the tumor in my right, because it seemed to have flattened out. It’s non-invasive, so I’m keeping that up.
• Acupuncture and Chinese herbs: The chemo made me very anemic (I did have to have a blood transfusion last month), so my acupuncturist and I are working on building up my blood and restoring my energy. The herbs have made a big difference in my energy, and it’s fun to work with raw herbs and cook up decoctions every week.
• Grounding: Find out more about that here (or for a plain English explanation, here).
• Thought Field Therapy: I’m very early on in this work, but I’m reading this book by UCSD / Scripps clinical psychologists. It’s fascinating — discussing energy, quantum physics, and how that all maps to the acupuncture meridians. In fact, if you’re interested in all that, you might recall that in 2018 I mentioned an article in Nature Medicine about the discovery of the interstitium — a whole-body network of channels that may map to those meridians that have been used by eastern medicine for 4,000 years, and may give some explanation on the spread of disease. Here is a podcast that deep dives into it (thanks AC for sending it over!).

The bright side

• I survived the hardest chemo regimen I’ve done. It was so hard, so I’m thankful to be done. After I rang the bell at my last infusion (I’ve never done that before because no regimen has ever worked well enough for me to get to that point), I threw up, and I’m thankful for whomever designed those expandable barf bags, because wow do they really expand! I’m also thankful for this parody of McKinsey (it’s funny because it’s true).
• My dear friend’s dad passed away unexpectedly. She shared his last text to her: it was about me, and ended with him telling her that he loved her. “He was your biggest cheerleader and now guardian angel,” she said. I couldn’t have picked a better one.
• I meet my new MD Anderson oncologist in March, and I’m so grateful that the Godfather put so much thought into who should carry on with my care. The new doctor is an expert in leiomyosarcoma, and the Godfather says she is brilliant and likely to change how we treat it.
• I’m so thankful that, even after 5 years of this ordeal, I still have so much support from family and friends.

Happy Thanksgiving, loved ones. May you be filled with the awe of everyday things.

But Who Will You Hug?

Things are happening that have never happened before: the tumor is shrinking, but more importantly, it is showing a reduced blood supply. This is great news!

The Godfather is going to stop seeing patients at the end of the year. This is not unexpected, since he was already retired when he agreed to take me on. He recommends a brilliant young doctor who he says will revolutionize the treatment of sarcoma, and her research focus is on LMS in particular. But then who will you hug, I asked. It’s a good question, he said, as we closed with the usual healing hug.

The downside of the good news, of course, is that it means more chemo. I’ll spare you the details here, but ask about a side effect and the answer is probably yes. There is a mystery swelling in my left leg — the one without a tumor. I’ve narrowly escaped getting blood transfusions twice this cycle (once by eating a whole sheep between lab tests), and I’ve already surpassed the lifetime cap on the number of doses for the cardiotoxic doxorubicin, so send me all your good vibes and courage for what’s to come.

The other thing that hasn’t happened before is that I’ve gotten a lot better at life. For most of my existence, I’ve been fairly good at being efficient, getting things done, and mostly doing what I thought I was supposed to do — but I wasn’t really very good at living. Since my diagnosis, I’ve been pretty focused on mind and body. But more recently, I began to see that there were other elements — energetic and spiritual — that I needed to work on. And more importantly, that I needed to do it in a way that integrated it all: mind, body, universe, and spirit. Somehow, as humans, we lost touch with the universe. Birds know when to migrate; caterpillars know when to pupate…but we humans seem to be the only animals who have insulated ourselves from the signals and forces that are so plainly there if you look at all living things.

Embrace, Release, Heal was a great jumping off point for exploring some of these ideas. While I’m in no position to advise anyone on the right way to do this, I will say that this new awareness and perspective has given me a deep sense of peace, and I have experienced more joy even amidst my misery in the past couple of months than I have in a long time.

The bright side

I am so grateful that I got to make the trip to drop Audrey off at Williams. I was so happy that I made it that I forgot to be sad. And actually, we all forgot to be sad because she was so happy she landed at the exact right place, and we were happy that she was happy, and I was happy that I was there, so it was all just giddy happiness.

Since her practice schedule began pretty much right away, and Sacha had a tee time at the golf course, I had a free day and walked over to the Clark Insitute of Art, which ended up being an astounding museum nestled against a most beautiful backdrop.

After the museum, I had a nice lunch downtown, and then went to Thompson Chapel, which is just exactly the type of chapel I love: gothic, full of stained glass, and big enough to remind you that you’re not the center of the universe. It was quiet and still and I had the entire place to myself for a whole hour. Glorious beauty was juxtaposed with so much pain: the names of students lost to war or illness, all enveloped and pressed into stony memory with love.

I stayed in the chapel the way you don’t want to leave a party with a captivating storyteller. I was just enjoying the energy there so much, and having a grand old time talking to God, and basking in an incredible bubble of goodness and peace. But eventually, someone else came in, and it was their turn to have the place to themselves, so I left, and Sacha and I went out for our first dinner as empty nesters.

We left Williamstown and I was only sad that I was going to miss the upcoming cat video fest at the local theater.

Then came my birthday, where I posted a Facebook fundraiser for LMS research, surpassing my goal within 30 minutes, and closing out at $11.6K — further affirming the fact that my friends are, hands down, the kindest, most generous people out there. Thank you not only for donating, but for showering me with love, food, support, and so much more than I deserve.

Three Down

I suppose that a hurricane / tropical storm during tarantula mating season is as good a time as any for an update.

The tumor is showing a little shrinkage. The radiologists call it “stable disease,” since it isn’t enough to be technically considered shrinkage, but this is positive nonetheless. This hasn’t happened before for me on any other chemo regimen.

Since my most recent recurrence, I have been open to exploring virtually all ideas. I’ve been practicing the precautionary principle, that is, eliminating any potential environmental risks wherever possible (most recently, having dug into the effects of EMF / RF radiation on the human body, and making lifestyle changes there (all my tumors thus far have been near areas where I used to regularly carry my cell phone). One of the patients in an online group I’m in shared that he read A Metabolic Approach to Cancer, which is written by a naturopathic doctor who went into remission from stage 4 cancer, so I explored that. I’ve also read a number of interesting books on the ties between spirituality, emotions, and disease. And of course, I’m always experimenting with various ideas spawned from PubMed literature. It’s hard to tell which therapies are doing what, but it seems that there is progress, so I’ll just keep at it.

This, of course, means more chemo, and this chemo is hard.

I had very hopefully suggested that since this seems to be working, and we had two rounds to maybe knock back some of the micro-metastatic disease, that maybe we stop and just remove the tumor, reserving it for a time where maybe I didn’t have tumors that were operable. Previously, my oncologist had said that it would not be a completely crazy idea to just remove the tumor and save chemo for if it returned, though he did not think it was the best recommendation. But it seems that now that I’ve started, we don’t want the cancer to build resistance to the treatment, so…now I have to keep going.

Being a hermit seemed to keep me out of the hospital, as did reducing the dosage by 10%, so I guess there will be more of that too. I had a day this cycle where I felt pretty normal, and Amelia and I went in the middle of the day on a Tuesday when no one was around and bought tacos and ate them outside. It was so wonderful! I wore some fake hair and a hat and for an afternoon, I was just a normal taco-eating person, and I loved it.

Wiggly party

I’m back to being bald (it gets me priority boarding), but this time around, I don’t want it to be a thing to think about if I happen to be out and about, or if I’m on a call, especially with people I don’t know well. So I’ve been wearing wigs more than I did last time.

Here’s my friend’s wig (which happens to be made of hair from daughters of mutual friends):

She gave me permission to cut and dye it, so I had that done and it is my Zoom wig. I think it’s pretty close to my real hair!

Since it’s been hot out, if I go out I usually opt for the half wig (which I call Ben Franklin, since it’s like his hairline) and a hat. It’s a lot cooler than a full wig, but you are kind of stuck in your hat unless you want to use it as a party trick.

The bright side

I am in a much better mental space now than when I first started treatment. That makes day-to-day living much better…and I’m learning to manage the symptoms (of which there are many).

I am so thankful for your continued support — for my garden club friends who came and cleaned up my atrociously messy garden and planted seedlings, for your kind prayers and messages of encouragement, and for all the little things you do to make me feel loved.

Sacha isn’t a hermit by nature, but he has become one to protect me. I’m so happy to have had Amelia and Audrey at home this summer, and they do a lot of cooking, cleaning, and grocery shopping. I am so lucky to have such an amazing family, and that we live in California where we can leave the windows wide open day and night for ventilation.

Below: sample meal Amelia made; sporting a bag that Audrey crocheted for me!

Next up: (maybe) 3 more rounds of chemo, (maybe) radiation, and surgery — hopefully wrapping up by the end of the year.

I’m so grateful that the treatment is working. I’m praying that I am one of those rare cases that results in a cure.

Oops

I failed to get the images to render properly in my last post. I think I fixed it. Wanna see pictures? Click here.