Fear The Walking Dead

Or what happens when you're filming a hit TV series and your cancer comes back.

Thank you for the awesome reception to the podcast post last week. It was a fun conversation and Conquer Cancer is a great organization.

As far as my podcast goes, I’m meeting with the team on Thursday for more script editing and to discuss possible sponsorship opportunities. I’m also vetting fact checkers which is apparently part of this process as well. It’s been interesting to see how much goes into producing a narrative podcast and I’m excited to share the final product with you. For updates, make sure you are subscribed (button below) and invite others to join the conversation. There is always room here.

This week, the deliciously honest actor, writer and artist

Mo Collins

shares her experience of being diagnosed with and treated for a GI Stromal Tumor (commonly called GIST).

Many of you have shared your own stories of recurrence, fear of recurrence or trying to find community with a rare type of cancer. When I read Mo’s post last summer, it resonated with me and I think it will with you, too.

For more information or to connect with others diagnosed with rare cancers, check out the Rare Cancer Coalition.

Thank you, Mo, for your words.

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As of July 5th, this year (2023), I am cancer free. Again.

HUGE! I know. And figured I should start there so you don’t feel awful for me the whole way through.

It all started in April of 2011 when I was lying in bed watching the discovery channel (ironic) with my then new boyfriend, Alex. I was on my side and felt a lump in my mid-section. Honestly, I thought I had perhaps not chewed my burger well enough, and there it was! Alex suggested it felt like a lipoma. He insisted I get it checked. Up until this point, I was always so healthy, and the thought of having this “nothing-burger” checked would’ve seemed ridiculous. I never went to the doctor! But, being in the early stages of love, I thought it was SO romantic that he wanted to see this through. So, coquettishly, I obliged. I was such a good girlfriend. HA!

The whole appointment played out like some sort of fantasy in my brain. There we were in a dark room, having my belly jellied up for the ultra-sound. Alex holding my hand. My mind had it play out like we were glimpsing our newly formed baby. HA! Unfortunately, this babies first name was Sarcoma. Not cute. Wouldn’t fit in a onesie.

It still didn’t make sense to me when we walked into my first ONCOLOGY appointment. WHAT?? No one had said the word cancer at this point, so I was still playing on the field of “this is nothing”. We sat down in front of the oncologists desk. First thing he asked me was “are you scared?”. THAT is the moment I got scared. I truly thought he was just going to say this thing was akin to a bad freckle. He would get it out, and I’d be back to my regularly scheduled romance, where the flipping of my stomach was from the excitement of this new man. The flipping changed course toward WTF. Not nearly as handsome.

I was scared.

But here is where my journey took [one] of its miraculous turns. Dr Disney ( which I called him because he was across from the studios in Toluca) said to me, sure, he could take it out. BUT! He set his ego aside, and sent me to someone with GIST (Gastro Intestinal Stromal Tumor) expertise. There weren’t that many in the country! UCLA, as luck would have it, had a couple of the best. Turns out GIST is tricky. As was the location of my little sarcoma. It was attached to my duodenum, directly across the hall from the pancreatic duct. A standard resection would not work.

I went to my first UCLA appoint with Dr Eilbers thinking I was simply going to put a surgery date into my calendar, get it out, and resume life as normal. This was the first appointment I went to alone. Figured this was to be simple formalities, yada yada yada, back home. He put in my scan CD (again in a dimmed room, but not very romantic!) and started speaking. It started with “yeah….that shouldn’t be there….” and then my ears started to ring. His ramblings were sounding like the teacher in a Charlie Brown cartoon. "Blah blah blah be be blahhhh…SARCOMA…blah blah MALIGNANT blah……blah…SURVIVAL RATE….blahhhh..holy hell BLAHHHHHHHH”. He spun his little low stool around and faced me. He asked, “any question?” I was now a 4 year old sitting on my chair. Feet dangling. Anklets slipping into my Buster Browns. Naked (emotionally) and alone. My tiny voice answered…. “no”.

I got in my car, and drove the hour home. I was 4, but about to grow up quickly.

Next appointment was with my “team”. Holy crap. I need a team?? This was approximately 4 weeks after discovery, and the FIRST time the word cancer was used!! OKAY! wow. I HAVE CANCER!!!!! I HAVE A CANCER TEAM!! My journey was just starting! To this date, they are still my team. Family, in a way! I love them dearly. (Dr Chmielowski (I can hear you trying to pronounce it. HA!) with his wonderful polish accent and fancy socks. Nurse Sandra, who exudes compassion and delightfulness and answers all my panic emails). Oh, the places we have gone…

Now, as I said before, the location of my baby was risky. So surgery would not be imminent. Crap. I was put on the miracle drug known to the world as Gleevec to reduce the kumquat sized tumor. It was time to bite the bullet. (Proudly made the Times magazine cover May 28, 2001. It is a miracle drug for GIST cancer, as well as leukemia patients. Thank you, Novartis). It started working right away. Can we get our first AMEN!! A-MEN!!!

Gleevec is a intense chemo drug. Comes with its share of side-effects. (One quick sidebar for any of my Gleevec warriors reading; I love you. I hear you. It is hard. Yes, we are grateful, but MAN it can blow. Hang in there!!!!) Among the struggles were extreme fatigue. Not subtle at all. Horrific foot/leg/hand cramps. A favorite for me (sarcasm) was the edema, particularly of the eyes. And as an ACTRESS?? OOF! SUPER FUN! Especially in the morning. I jokingly referred to mine as “fetal pig eyes”. HA!! I’ll tell ya one thing, cancer can sharpen those comedy chops. Things [had to] become more acutely funny to me as a survival technique. Otherwise it would’ve been too much.

I shrank the SOB for 9 months, and then my liver enzymes started to elevate from the drug. It would have to come out asap. I was given Plan A- to resect with a circle at the stalk of the tumor. Would have to be small enough to still close. Or Plan B- the dreaded Whipple operation. I’ll put this in simpler, crass terms: my GI would essentially be my throat, esophagus, stomach, intestines and pooper. Think of it like a Play-Doh Pump-and-play. Eat, and push it right back out. I did not want this change of life.

December 28, 2011, Alex and I headed out in my little Fiat 500 to the great unknown. The “big look” inside. I was to arrive at 5:00 AM. Never could we have imagined leaving the house at 4 AM that in the middle of our jaunt, the 405 would come to a COMPLETE stop. Not even a crawl. It was a parking lot. Nothing we could do. Or was there?? We called admitting to let them know our predicament. Stuck. Then we reclined the seats…and made out for 45 minutes. If you ask what grace is to me, it was in this moment I found it. The letting go. The acceptance. Come what may. And, of course, make the best out of any situation. By the afternoon, I woke up to learn I was the lucky recipient of Plan A, and was cancer free. (insert sizable exhale here…) My 10 day stay at UCLA was incredible. A hearty thanks to the incredible nursing staff. Forever indebted. Felt like a stay at Shutters in Santa Monica. Again, I like to pretend. But seriously, my sunset view from the 8th floor was worth all of it. HA!

Post surgery, I was put back on Gleevec as it is standard adjuvent therapy, at a slightly lower dose to appease my liver. Protocol says 3 years, many stay on it indefinitely as a preventative. I chose 3 years, despite not having “clean margins” with my resection. My wonderful oncologist supported this choice, despite the risk. I prefer crossing bridges when I come to them.

I want to talk about denial for a minute. Denial, along with humor, was/is a huge part of my own treatment plan. It was a way of not giving it oxygen. I hated the idea of being a cancer patient, and did not want others to see me as such. I was (and up to this article HAVE been) very quiet about it. Unless asked about it, which did happen. Podcasts, etc. I figured there was hope in my story for others. But… I could be quiet!! I did not LOOK sick. I had all my hair, and then some!! At best, a person could only look at me and think I looked tired (I was). Or hungover. (I wasn’t) I could pretend it wasn’t happening. I preferred this. But it was challenging, none the less.

March 17, 2015, I stopped taking the drug. My pretty eyes returned. It was lovely. No more denial. Just living my cancer free life, other than scans and blood work every 6 months. Big whoop.

Shall we cut to 2018? Let’s cut to 2018. Things were going swimmingly. I had just finished 6 episodes of Fear The Walking Dead, and my character remained alive. I would return to the show in the Fall. I had an actual contract incoming. Had not had one since 2003, Mad TV. I was STOKED!!! In the same week my introductory episodes were airing on AMC, I got the results of my July scan back.

Welcome baby sarcoma #2!!!! We’ll call him nodule!!! F************************CK!!!!! I couldn’t even enjoy the glory of being back on a show?? Not one episode???

Goddammit. GOD. DAMMIT!

Can I tell you what was so hard? Feeling like a failure as a “cancer survivor”. That TITLE! I lost my survivor cred!! Here’s something I gleaned in those few weeks of hard reconciliation: Survivor is a title to be held from the MOMENT of diagnosis, to the day one sheds their Earth-suit. Not just reserved for whence it is “gone”. And certainly it can be argued that while enduring treatments, they are indeed in the act of surviving! Now, I don’t want to take anything away from those who have beat it!! Trophies for every single one!! I just don’t want to leave behind those who are in the process of surviving. They’re all survivors to me. Cancer free is a great and complicated status. Anyone who has ever been diagnosed with cancer knows that EVEN WHEN they are free of those shitty cells, the chase is still on. We’re still looking behind us, and knocking on doors before we enter. Making sure the monster is not there to jump us again. We remain in survivor mode. Thus…survivors until the bitter end. Maybe this is me not wanting to lose that title, but I firmly believe all who got that knock on their door are survivors, because that is the day our armor goes on. And I don’t believe it ever comes off.

So. Mine was back. My cancer was back, and so was Gleevec. Hello, fetal pig eyes!!! Here’s looking at you! My denial program was going to have to operate on a even higher level. I can count on two hands the number of people I even TOLD this to. (I am somewhat ashamed to say this, but I did not even tell my parents. I did not want to worry them. They are in the 80’s, and it’s a stress I wanted to keep from them, for their own good health. Judge me if you wish. It’s what I did). A hardy thank you to the keepers of my secret. It was perhaps unfair to put this on your shoulders as well. Especially my sisters. I know this must’ve been hard. I love you. I’m grateful.

Now, back to work. I was busy! And the work I was doing was HARD! Physically hard! Flying back and forth to Austin. 16 hours days out in the Texas heat (or cold) running, jumping, killing zombies. Kicking ass. Being a badass in a fictional world, but my reality was oh so different!! I was honestly terrified I would not be able to do it! So, Deny! Deny! Deny!!! Do NOT give it oxygen! Fake it ‘til you make it!! I pushed myself, and no one was the wiser! There were times I’d drag ass into bed at 8:00 AM in the morning after working all night, sit on the side of my bed, and let the gratitude wash over me. I was doing it! I cannot express the joy from personal victory in these moments. I was finding out what I was made of. Turns out, I am a resilient mother-trucker. I’m proud to say it. I put all of myself into that character, because she sure as shit WAS me. A survivor. And I took from her as well. Pretty cool. But, yeah, no one really knew. It’s just who I am.

( That last paragraph makes me so uncomfortable for two reasons. 1) I’m so nervous my parents will find out. And I would be in trouble. 2) It sounds braggy. But I did it for this reason; for anyone out there struggling in the “living with cancer” universe…I see you. I feel you. I cheer you on. Take those victories!!! They are YOURS!)

Back to the timeline! What fun! Those who have stuck it out this far, THANK YOU!

March 2020, a global pandemic hits, and shit gets real for me and my compromised immunes. I was terrified! Not gonna lie. If they were giving out prizes for isolation, I would’ve won. (The trophy would have to be mailed, then sit on my porch for two days until I was assured it wasn’t infected, please). Safety was at home with Alex or flying around in the Jeep with the doors off. That Jeep kept us sane! Then I was called back to work. In Austin. Pre vaccine. Oh my Jayzuzzz. How?? How was I going to do this? How resilient am I really?? And as actors, we would have to remove our masks! Shitsticks! I adopted my own “glitter plan” with Covid. When flying, because I HAD to, I pretended Covid was glitter. So, I would dress, and move through the day as if I was avoiding glitter!! Fancy, huh? Braided hair in knit caps, goggles, jacket over shirts, leggings under sweatpants. Multiple KN-95 masks. I would get outside the airport, remove the knit cap, jacket, and sweatpants and place in a plastic bag I had. Toss my mask, and replace with another for the car ride to the AirBnB (which were COSTLY, and we had to pay for our own accommodations on the show, but it was the safest place to stay). Just inside the door of the AirBnB, I stripped naked and set the clothes aside safely, gave myself a silkwood style shower, and settled in to a room dense with the smell of my alcohol wipes, my fingers crossed. It was not an easy time. For anyone, really. But, yeah, I was scared until that vaccine showed up. Made it through, though!! Cancer and all! Thanks, Moderna! And time rolled on…

After 5 years of normalizing my new life with baby Nodule, and my cuppeth of pharmaceutical side effects, I was struck another blow. End of February this year, My little Nodule was growing into a big tumor boy. Gleevec failed. This was a shocker. I did not foresee this. I thought this would just be my life. Stable!! So many GIST patients continue to thrive/alive on the drug. Some are at 21 years and going strong! Stable is a good thing in Cancer’s orbit. Surely that was supposed to be me! Nope. SO we upped the dosage to see if that would do it. Not really something I could keep secret from Mom and Dad at this point, so I told them the cancer was back. I was returning to Gleevec at 400 mg. It was heavy for them, and though I felt bad keeping them in the dark, I prefer to think about the 5 years worry-free I gave them. (Of course the first Sunday after telling Mom, I was on the prayer list at her church. Word spread like…cancer. It’s okay though. It’s what she needed. Thank you, Mom).

Larger dose did nothing, except make me feel worse. Much worse. Time for a new plan.

It had to come out.

Enter my new hero, Dr Kadera from UCLA. A new (to me) GIST sarcoma surgeon brought onto the team by Chmielowski. Another miraculous stroke of chance in my journey. Still not wanting cancer to get in the way of MY plans, I noted to my team that I was supposed to shoot a fantastic Independent film in May, in another state. I didn’t want to miss it. I needed it (apparently more than I needed the tumor out!) HA! They pushed my surgery to later in June, early July to accommodate. Here is a lesson I apparently can’t seem to learn: DON’T let Hollywood determine every damn thing in your life. The film got pushed! Oh, Mo. When will you learn. YOU first.

So I waited.

We filled the months selling our Austin home because it was bleeding our wallets, and work prospects were not looking good. (And that was before the strike!!)

The exciting thing about surgery #2 was that it would be done with robotics. The DaVinci!! Very cool!! That’s what time affords you in the cancer world; PROGRESS! Recovery would be a MUCH simpler story. I would not be filleted again! Sweet! But, because nothing can be cut and dry in my life, despite my efforts, this next surgery also came with two plans. Plan A- They go in and pull the sucker out. Or Plan B- They go in, they can’t pull it out ,because it abuts my pancreas and vena cava, and they would abort the surgery. We would have to go in at a later date and do, you guessed it, the Whipple. Back to Play Doh belly.

July 5th 2023. We had a 6:30 am call time (speaking in acting terms here) with an 8:30 start time in the surgical theater. Ive never been more scared to wake up. I felt it was too much to expect I would have such good fortune twice.

But I did. I flipping DID! Dr Kadera had done the nearly impossible! He got it all!! Clean margins! Cancer-mothertruckin-FREE!!!! AGAIN!! 3 days at UCLA and I was home! Recovery was smooth!

To say I am a lucky bitch is an understatement. I have not felt this good for five years. Being off Gleevec is life changing. It is most monumentous to feel how my energy actually feels at 58. This is the most exciting part! And my eyes!! As Rudolph the Red-nosed Reindeer says “I’m CUUUUUUTE!!!!” I would say I’m a totally different person, but the fact of the matter is, I am back to ME! THIS is the real me. Lordy, I am grateful. Of course, there is still some fallout from spending 9 of the last 12 years on the drug. Without edema all throughout my body, I feel my skeleton. HA! It can literally hear my joints a lot. My bones suffered loss of calcium, so things are a bit stiff, arthritic. But, I’ll take it. And I really don’t feel like complaining.

What’s next, Mo? What does the chase look like now?

Whelp, if it’s gonna get me one day, it’s gonna get me. So could a bus. Chmielowski may want to put me on some other chemo drug to fend off future recurrence. No doubt there will be discussion. I don’t want to do this. Dr Kadera thinks it best not to take the poison either. As he put it, why take an Advil if you don’t have a headache? My thoughts exactly. The poison is hard. Life is short. I want to feel good for as long as I can. I’ll say it again, I like crossing bridges when I come to them. That is my flow. It has served me thus far. Should baby #3 come along…there’s always Dr Kadera to deliver me from evil. I was joking with him that I would use him like a plastic surgeon, or a skin spa. Just make my fancy appointment to have the ugly growth removed.

There are, of course, one MILLION nuanced stories to come out of this journey. Far too many for a Substack article. So this piece feels a bit trite to me. Clipped. However, it was cathartic. It’s something that I needed. I’m giving ME the oxygen through telling my story. Thanks for indulging me.

I shall leave you with this picture. From fetal pig eyes to bright eyes. I’m seeing my life quite differently now, and I believe it shows.

Thanks for reading, and my greatest wish for all of you is good health. XOMO