One year

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).

The in-between

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.

30 year reunion — loved seeing you all!

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.

My first batch of kombucha. Botulism-free!

The bright side

1 year NED. Enough said.

 

People, not meat

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

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

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

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

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

 

Survivor

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

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Current hair situation

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

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

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

The bright side

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

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

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

Oh so soft and cuddly

The eye of the tiger

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

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

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

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

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

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

It’s beginning to look a lot like Christmas

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

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

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

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

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

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

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

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

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

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

The bright side

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

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

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

You did this.

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

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

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

 

 

 

 

 

 

Hello from the other side

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?

No.

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:

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Yesterday, from the hospital window, I saw this sunrise:

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And then from home, I saw this sunset:

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Hello from the other side.

On track

Despite being in a tiny overflow ICU room waiting for a hospital bed (all beds are taken, apparently not uncommon here), Sandi is hitting her milestones. She was just cleared for a liquid diet – yay veggie broth from “Nourishment”. She still gets tired quickly, goes in and out of being in significant discomfort, and needs frequent naps.

Thanks for all the prayers, messages, texts and calls. As one of her friends wrote: “there are literally hundreds of people in the room with her”. I couldn’t agree more – that’s exactly how it’s felt on this side. I expect she will be well enough to update you directly soon so I’ll let her take it from here.

Sortie #2 – Wednesday

Sortie #3 – Thursday

Yay Veggie Broth …

… possibly from the department of “Nourishment”. No sign of it on Yelp.

All Done – Heading to ICU as Planned

Highlights from post-op debrief with the surgeon:

  • Sandi’s belly is closed up and she’s in the recovery room. She was stable throughout the whole operation. We expect to be able to see her in one hour.
  • She didn’t require any blood transfusions.
  • The surgeon got “grossly clear margins” around the tumor.
    • This means that he was able to take extra tissue all the way around, which reduces the chances of leaving cancer behind. Yay.
    • He felt confident that the margins were clear for the IVC. Yay.
    • The pathologist will sample randomly the rest of the tumor to determine if there is evidence of microscopic disease. One week wait. Prayers and good juju for no evidence would be awesome. (side note … technology should exist that determines presence of disease across the entire tumor, rather than one person doing a visual check with random samples.)
  • She is expected to be in the ICU for 1 day, and the hospital for 5-6 days.
  • She can leave the hospital when she can “eat, drink, pee, poo and walk normally,  and have pain under control with oral pain meds”.  These criteria suggest that I should be in hospital much more often.

Surgeon’s Update

5 Seconds after I clicked “Publish” on the previous post, the surgeon called.

Continued good news:

  • Tumor out.
  • Right adrenal gland out, as planned.
  • Right kidney out, as planned.
  • Liver spared. “I only had to shave off 0.5% of it”. Had thought up to 50% taken out so this is great news.
  • Gall bladder spared, also great news.
  • Reconstructing Vena Cava, as expected.
  • Pathology currently under way to understand margins.
  • Sandi in stable condition.

He’s expecting they will be done in next 2 hours, so on the earlier side of the estimate.

Dr Rich nailed it on the snack front

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Mid Morning Update: Stable

Scottie, an OR nurse with no Scottish accent detected, calls us every couple of hours with an update. Here are the two from this morning:

  • 850am: First incision.
  • 1130am: Stable condition … “boring … which is exactly what we want at this point” … No organs out yet … surgeons are exploring the area, getting it prepped … “it’s going to be a long day”.

The doctors told us at the start of the day that Sandi will most likely be admitted to the ICU given the extent of the surgery so that she gets close monitoring. We are all for micromanagement and precautionary measures.

We parked ourselves at the entrance of the cafeteria, which means we get to see when the OR staff need nutrition. I’m tempted to follow them around and point out healthy options that enhance focus and performance. “Pizza, dude? Really?”.

Thanks for your texts, comments, good vibes, thoughts and prayers. They mean so much to us.

Sandi’s friend Minchi at 530am. 

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The fam stalking OR staff in front of the cafeteria.

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Dr Rich dishing out snacks and expertise. 

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