I Cancer Can Can Denouement

The last chapter (I hope!) of my year-long healing journey

I found this note on my phone, dated January 9th (unedited for authenticity):

Oh no, not another cancer journey

If you’re reading this and it has been published, it’s either because I’m dead and someone found my notes and decided  to go ahead with publishing anyway or I survived and I thought my story might be useful to someone. I guess you’d read on to find out which. 

My name is Tonika, like a gin and tonic-a, and as of this writing, I’m 45. I brought three children into this world, twins Calvin and Jaxon, and Frankie was the latest surprise that snuck in there right at my 40 year milestone. I live with the aforementioned children, my mum who we all call Baba (grandma in Bulgarian) and Dada (whose name is Nick). There are some cats, and fish, and a very special therapy (not licensed, but if you ever met him, you’d get it) dog names Koko. That’s my household. My house is a two story Victorian home with a basement and an attic, each housing a friend of Nick’s and I did theatre all my life until pandemic when I became an undesirable dissident and got into holistic healing more intentionally although I had been interested in it for years. 

The note was dated 6 days after I received the final confirmation that I had stage 3 breast cancer, and I’m sure, like so many wishing their life wasn’t about to end prematurely, I was going to tell my story to the world in the hopes it helps somebody, somewhere, at some point. Yes, this was going to be the beginning of some book that I never ended up writing because, since my diagnosis, every day has been filled to the brim with living, learning, healing, appreciating, and carrying on as if I was very much going to make it through. This included but wasn’t limited to continuing autonomous learning with the kids, continuing with creative collaborations, and continuing with low-key general maintenance of my theatre company and events, celebrations, life stuff, etc.

I did end up writing two previous articles based on my journey that you can find here and here, and this will serve as the last installment (fingers crossed!) because as of three weeks ago, officially, I AM CANCER FREEEEEEEEEEEEEEE!!!

Sorry I didn’t include a spoiler alert, but I’m starting with the conclusion because a.) I want to spare anyone not interested in naval gazing posts - but was curious enough to click and see how I was doing - from having to read to the end and b.) I want to scream this news from the rooftops and have it reverberate through hills and valleys, through vast oceans, and through the cosmos above and back again. I am cancer-free, friends. After a year of stubborn persistence, a rollercoaster of emotions, humility, pitfalls, minor triumphs, and a legitimate support network of family, friends (both in the flesh and digital), and random strangers, I have a few tests that have returned a clean bill of health.

Now, I’m not completely out of the woods. I have to keep my therapy protocols going for a while yet to make sure I’m not creating an environment for cancer to return. But I also can’t imagine ever slipping back into the lifestyle that led me here. Having a baby after 40, relaxing into a sedentary pandemic routine, and getting hit with menopause had me overweight, unhealthy, and aging terribly. It was not a good look for me, and I don’t plan on ever letting it get out of hand again.

I recently read this stack that validates so much of how I feel about the pathology of cancer and why my body responded so well to alternative treatments. If you or someone you know is recently diagnosed, this is perhaps the first thing that needs a read:

Cancer Care

For those who have kept reading and are curious to find out what the last few months have been like, how, without chemo or therapy, my body managed to return to its balanced state, how people came up to bat for me, and what the edited footage from the 7-hour long fundraising event looks like as a 35-minute recap clip, keep going.

My last cancer article left off right before I was ready to have a big ol’ fundraiser with which I was hoping to pay for my surgery in Mexico. I chose Mexico not only because I had already had a positive experience staying at St. Andrews cancer clinic in Tijuana, where I found the doctors and staff highly competent and compassionate, but also because my American team was still insistent upon conventional methods, although I was vehemently opposed. My American surgeon, in particular, was pretty aggressively pursuing an entire lymph node system removal even as I raised concerns about lymphedema or losing my biggest indicator of future recurrences. She flat-out told me that a sentinel node removal was out of the question and that I had over a dozen affected nodes as per imaging. My explanation that the ultrasound was picking up on reactionary nodes because of the self-administered Coley injections was insufficient. But most importantly, there was no offer to make an analogous lysate treatment from my own dead tumor cells, an alternative therapy I had at my fingertips in Mexico, unusually frowned upon in the States.

“We don’t do that here,” was her response, and then she followed up with, “You need to remove the entire lymph system and do several rounds of radiation post-surgery. I have been doing this for 30 years, and I know that if you want the best outcome, you have to follow the advice of professionals. Don’t you want to be around longer for your children?”

Now, fam, I don’t do well with emotional manipulation. Of course, I want to be around for my children. I had to take a deep breath before I responded slowly, measured: “With all due respect, Doc, there is a lot of cancer in my family, and I have seen every single member of my family follow doctor’s orders and pursue conventional therapies. And not a single one made it through. I hope I’m not closing the door entirely on our relationship, but I’m moving forward with surgery in Mexico.”

And with that, my mind had been made, and to the horror of both my oncologist and surgeon, I turned down Western health care and sought help in a 2nd world country. There was only the matter of the 15K needed, but my sweet friends were organizing an event in my honor on July 27th and the proceeds were going to go towards my medical bills.

But things didn’t quite pan out to plan. A few days later, another ultrasound showed cancer on the move. Although it had shrunk considerably through my alternative therapies, the right axilla lymph showed up lopsided and now dangerously close to a main artery. Dr. Cedeño, my Mexican oncologist, was doubtful I could wait. However, I didn’t have the funds; I was waiting on the proceeds from the event, and as it was, even with the Gofundme, which raised A LOT, it only covered half of my previous clinical stay, and I maxed out all my credit cards to pay for the rest. I had no backup plan. And then, the first miracle happened. A handful of close friends pooled their resources and allowed me to borrow this giant chunk of cash and put me on a plane within days. Surgery was set for July 4th. I arrived in Tijuana on the 2nd.

Because we were dealing with these massive chunks of funds being Zelled from one account into another due to the holiday, everything was moving at the speed of baobab molasses. The hospital that needed funds upfront to schedule the anesthesiologist wouldn’t do it until the money actually showed up. While America was blowing off fireworks, I anxiously awaited the money to transfer. July 4th slipped into July 5th. On the evening of that Friday, I was already admitted to the hospital. While Dr. Cedeno scrubbed up, we received news that the anesthesiologist was stuck at a different hospital and wasn’t going to make it.

Generously, the hospital offered my ma, my ride or die on these medical adventures, the room next to mine so she too could have a bed for the night. We were gonna spend the night there like a hotel. They even fed us. Would that even happen in America? But no surgery. I was a bit relieved, actually, because it was already 9 pm, and who wants to go under the knife that late on a Friday after everyone has had such a long day and week? July 5th turned into July 6th. My anxiety was further fueled by being told that they might open me up, but if the lymph node had wrapped around that major artery, they’d have to close me right back up.

The thought of returning to Chicago without completing the task at hand, after all the mountains my sweet friends moved to get me to Tijuana, absolutely wrecked me. I meditated and visualized a positive outcome. It’s all I had.

Finally, at 3 pm, with a new anesthesiologist on deck, I was wheeled into the cold, white, squeaky clean of the operating room. Spanish was spoken too fast for me to catch much of, but it didn’t matter, I was down for the count faster than I could process or worry. Three hours later, I woke up in recovery with Dr. Cedeño, really a tower of a man with the most gentle hands, grinning from ear to ear: “I got it, Tonika, I got it all, you’re tumor-free,” in a sweet Mexican accent. We had arrived in the 11th hour, and just like every single development in my healing process, events transpired never too early and never too late.

My ma, who was waiting for me in my room, had tears welled up by the time I got back. She probably smoked two whole packs in the hot Mexican sun, worrying herself silly. And yes, I have not been able to convince my mother to quit smoking, even through my ordeal. Some old Balkan habits never die.

That evening, refusing painkillers post-anesthesia, I relied on hypnosis to get through the return of my nerve endings. Another friend and Substacker, Mary Poindexter McLaughlin (whose husband is a hypnotist), sent me one of his videos that got me through the uncomfortable and loud Mexican post-op night. I never took any pain medications - my body healed fast and well. I am blessed.

Everything moved pretty fast after the surgery. I had to stay for two weeks to clean up tubes and whatever inorganic things were extruding from me. I wasn’t out of the woods entirely, I still had to worry about circulating cancer cells and all that, but for now, there was a sigh of relief. We went to the beach to people-watch any chance we got, we talked to the kids back at home on the daily, Trump (allegedly) got shot at and the internet lost their collective minds (but oh, the sweet, sweet memes), I got the chance to finish several creative collabs, and my mom and I even got threatened by a young, accent-free, handsome Latino that we’ll get punched in the face if we didn’t give him ten bucks. 😂 We passed on both giving him money and getting punched in the face. Luckily nothing became of it.

My pathology report yielded surprising results: out of the four lymph nodes removed at Dr. Cedeño’s discretion, only one, the big original egg-shaped protrusion I felt in my armpit that was biopsied, had cancer. The rest were only inflamed but not cancerous. I was injecting Coley fluid right into that armpit, no wonder those little nodes were a bit upset! And to think that my American surgeon wanted to remove my entire lymph system!! To risk the use of my right arm! And then to radiate the entire area! I am so grateful to my body for being such a good sport.

I flew back on July 16th, smuggling my alternative cancer treatments again through the border, my whole life-saving trip taking up all of two weeks. When I returned, there was a week and a half left until the big fundraising event that was being held in my backyard. Amongst all the planning and setting up, I still had to adhere to medical protocols. My poor garden, which felt rather neglected every time I would skirt off to Mexico, needed major watering and tending to. That week and a half was gone in a blink, and before I knew it, the big day came.

I don’t want to talk too much about the great big affair that put a large 10k dent in my medical debt, but I would like to show you a small portion of it. Trust me when I say that sifting through footage of a seven-hour-long event is a daunting task, and distilling it all down to 30 minutes is even more herculean. There was so much behind the scenes that wasn’t captured or couldn’t be included in the recap video as friends and family cooked, set up tents, ran audio, painted faces, ran the bar, took care of trash, and all the other stuff needed for a big ol’ party, but I believe that the talent that showed up on that tiny little corner backyard stage (that I built with my own hands out of flagstone as a pandemic project) gave their hearts and love and well, I will carry that day with me forever.

It’s funny watching myself dance with abandon, kissed by the sun during all of my outdoor gardening, smiling from ear to ear, and albeit still 20 lbs heavier than my current body weight, looking not at all like a tortured cancer patient. The whole event was one for the books. I rented an outdoor port-a-potty! And you know it’s a party if the cops come! Twice! I want to know which one of my neighbors kept calling Five-O when they were all invited to come and warned it was going to be loud with a hard cut-off at 10p.

The rest of the summer was low-key except for my memorable trip to Reno, where I met new friends and finally got the opportunity to breathe the same air with Mathew Crawford and Margaret Anna Alice, two Substackers, which I’m sure need no introduction to my readers. As part of my commitment to starve the remaining floating cancer cells out, I had embarked on a three-week-long water-only fast that I had synched up with the end of my weekly analogous lysate treatment shots that my ma was giving me in the shoulder. The. Most. Painful. Shot. Ever. All 13 of them.

In the last three weeks, I threw the woo-woo sink at my cancer: Reiki, meditation, journaling, positive visualization, and something new that came serendipitously to me: Body Code. I had never heard of Body Code until my friends suggested we visit some kind of Wellness Expo. I didn’t really care for it. Do not recommend. Zero stars. It’s not the platform for proper woo-woo. There, a lady very badly demonstrated Body Code, and although it seemed interesting, the introduction didn’t leave me wanting to pursue it with her. Exactly the following day, a reader left a comment in my stack that included those two words. Marta was a Body Code practitioner. And she offered me a session. And she has her own Substack, which is most definitely worth checking out. And she happens to live in Chicago. Within walking distance!!!!! I mean… I get it, Universe, you don’t need to yell. Sheesh!

I met Marta and her kiddo at the beach with my kids. I found her warm and charismatic and doing sessions with her felt stress-free and it tapped into some ancestral shit that I think I was afraid to touch. I plan to continue as soon as I get my financial bearings because the Body Code is quite a pleasurable healing modality. To those not woo-woo inclined, it might seem silly, but I’ll tell you what: her method came in pretty handy when I was getting ready for my tests as I’m about to tell you in the last leg of this long-winded story!

I finally made an appointment to meet with my American oncologist to schedule the three tests that would indicate my cancer status: the ca27.29, a PET scan, and the most important one, although not widely used, the circulating cancer cell count. The last one, Dr. Cedeño had imprinted in me that it would be the most telling and that I needed a score of zero, one, or two to be considered cancer-free. A score of three, four, or five will indicate that I need to start expanding my treatment options and a score of five and above would be trouble.

I had been preparing myself psychologically to meet with her. I knew she wasn’t happy with me that I eschewed all the treatment recommendations she made. To her credit, not only did she seem super impressed with Dr. Cedeño’s surgical skills, but she gave me no pushback on requesting the circulating cancer cell test, an ask I dreaded. But she pretty much put it as an ultimatum to my agreeing to start hormonal treatment ASAP. A Lupron shot to kick me into menopause and Letrozole: a pill you take every day for 10 FREAKING YEARS!

“Should we wait to see what the tests say about me being in menopause already?”

“Nah, even if you’re in menopause, you could get started right now.”

“Should we wait to see what the cancer test results say? What if I don’t have cancer anymore, why start a hormone aromatase inhibitor if I don’t need it?”

“Well, there are false positives. Better safe than sorry.”

“What about side effects?

“Most women don’t report any. Maybe slight bone pain. There is something like a 3% bone density loss reported.”

“I’d like to go home and do some research and sleep on it.”

“Ok, well, I’ll schedule it for tomorrow when you come in for your tests. You absolutely have to do this.”

So I left her office feeling slight unease at our exchange. Of course, I went home and did research and told a few friends who also looked into it, but my unease with hormone therapy grew larger. For starters, the 3% bone density was on the low end. The high end was 8%. So, that was a lie. And the bone density was per year! Can you imagine taking a pill every day for ten years and ending up with 80% bone density loss?!? Can someone spell osteoporosis?!? What kind of quality of life are they offering women dealing with cancer if they become so brittle they can’t walk?!? Thanks, but no thanks. That was another lie. No wonder only 30% of women do NOT renew their prescription for Letrozole. A staggering statistic my doc omitted from our convo. But the nail in the coffin was looking up the specificity and accuracy of the circulating cancer cell test which she told me might result in a false positive. A 99.997% accuracy for ER/PR+ breast cancer. I now absolutely dreaded going back to face her and geared up myself for conflict.

The next day, I told Marta, my Body Code expert, my anxieties over facing the oncologist. She told me to do my swipes before going in; to draw support from my ancestors. So there I was in the clinic, in the public foyer, my eyes closed, swiping my hands over my head like a crazy person, when I was startled by the nurse calling my name and I looked up to see her standing over me with a look on her face that was about to deliver some bad news.

“I’m so sorry, but your insurance hasn’t approved the Lupron shot yet.”

“Oh, that’s ok.” My insides were giggling a little, but I didn’t let on.

“And, unfortunately, because it’s Yom Kippur, your doctor isn’t in today, so I’ll do all your testing without her here.”

Hahahahahaha! I didn’t have to face my onco after all! The ancestors came through, and I silently sent Marta a bunch of gratitude for nudging me to swipe before my appointment. I got home and sent several messages into MyChart, letting the oncologist know I wasn’t going to start hormone treatment and why. And if you have ever sent a message to your doctor via MyChart, you know that it’s limited characters, so that lady got ten separate chunky paragraphs from me. Her nurse let me know that she received them and was going to respond soon. But I never got a reply from the doc. Tests and scans were all done within days of each other. And now I waited.

Cancer folk have a term for the test result waiting period: scanxiety. Part of me never succumbed to the grips of that. Part of me just knew that it was all going to be OK in the end. And that if it wasn’t OK, it just wasn’t the end, as the saying goes. The ca27.29 results came back the next day with below-the-threshold tumor markers. Dr. Cedeño had already told me they got all the tumors, so no surprise there. The PET scan results were a little confusing. The technician, who probably had no idea what they were looking at with all the injections I was self-administering, just wrote, “Inflammation or metastasis present, further tests needed,” but I knew - the spots that lit up were in the areas of the injection shots. I sent the CD to my Mexican team, and their correspondence proved the theory”

I am looking at Tonika’s new PET/CT. She is good. Her last 2 abdominal injection sites have prominent FDG uptake. The small scattered lymph node tracer uptake the right mammary region is consistent with Coley Fluid treatment. It is highly unlikely that this minor FDG uptake represents metastatic activity. She will get my congratulations.

I only now waited for the final and most important test: the circulating cancer cells. It had been a week since Yum Kippur, the test date, but it was a Friday, and they said they’d send the results to my oncologist in 7-14 days, so I didn’t expect anything exactly then. Then it was the weekend. On Monday, I checked my chart and had nothing. Tuesday rolled around. Then Wednesday and Thursday. By Friday, it had been 14 days, so I was getting a little antsy so I went to MyChart to sleuth around and see if I could poke someone.

While doing that, I stumbled upon comments my onco left in the post-patient notes where I read things like “patient has refused every treatment offered to her” and “patient went to Mexico to seek treatment against my advice,” which although professional and not untrue, felt borderline condescending. But I also get it: she has to wash her hands clean in front of any superiors who might question why I’ve slipped through the cracks. I feel bad for medical professionals and how much they have to adhere to retain their medical licenses. Must be a tough deal.

I found the number for the lab and called. After telling them that I wasn’t able to log into their portal, they notified me that they had sent the results to my oncologist a week prior. Funny. I never got a call. And then they asked me if I wanted them emailed. Do I ever?!? Five minutes later, I was stuffing my face with the sacrilege that is the saltless potato of the Gerson diet when my email notification lit up on my phone.

It was like that, mouth full of tasteless starch, my ma at the sink washing dishes, we saw a big fat ZERO under my circulating cancer cell count. It had been a year to the day, from when the lymph node in my armpit made me think, “I wonder if this is cancer?” to getting that last test result. I know it was exactly a year because I was ready to go to the Halloween event I production manage annually, and in 2023, after the swelling, I tried to ease my mind from cancer thoughts by convincing myself it was just a reaction to my deodorant. It wasn’t. It was stage 3 breast cancer, and it took me a year to heal from it.

I never got a call from my oncologist with the results. I wonder if she fired me as a patient. I didn’t get a call from her to tell me my results, let alone some kind of congratulations. I wonder if I ever will hear from her again. I was hoping she might get curious enough to find out exactly how I managed it. Alas.

There is no way that I could have stayed strong physically, mentally, or spiritually from the point of the first oncologist I fired who told me that I wouldn’t survive the year if I didn’t start chemo right there and then, to the point of writing these words here to you now, my dear readers, if it wasn’t for the prodigious support from my family and friends and the outpouring of resources and research by all of you.

Thank you for being here with me throughout my story. Today is my birthday. Last year, I remarked that turning 45 might mark the halfway point in one’s life, but sadly, not many of us live to see 90, so that metric isn’t quite accurate. Little did I know I would spend the year trying to extend the near future. According to my astrology chart by the inimitable wholesome conspiratorial wombat Isaac Middle, it’s gonna be a good year. And with the dragon of death no longer breathing down my neck, it’s starting to feel like it. Today, my tribe is showing up for a celebratory birthday jam.

We’re gonna lift our voices in harmony and spread the good juju all around. I’ll record some of it and maybe publish something if it doesn’t sound like total shite. I am forever humbled by all this magic and adventure. I am forever grateful for this life.

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As always, thank you for being a part of my journey.