Welcome to the Medicine Tent

The ongoing story and wisdom of how I'm healing and thriving from Stage 4 breast cancer.

I started the year being diagnosed with Stage 4 cancer and since it has spread throughout my body. I was very private about my journey for the first half of the year. Cancer is both a physical and very spiritual journey. Many who get to the other side call it a gift. Despite how things look right now I feel confident in my complete healing. Here’s where I’m going to share the story of how I do that. I’ll be sharing updates on my physical journey with the western system, what I’m learning and uncovering in my spiritual journey, as well as how I'm healing through food and herbal medicine. 

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You are also invited to support via our Meal Train. 

How it all began

It was a crazy start to 2024. On the last day of 2023 I had taken my daughter to the playground and it had been raining, as she came down a slide I went to catch her because she was sliding down quick. CRACK! The catch snapped something in my back and ended up bringing us to the hospital. 

I had a clear scan in August but in September I caught COVID and had been struggling ever since. My cough and lethargy never really went away. I have an autoimmune condition called mast cell activation syndrome (mcas) and we assumed it was slowing down my healing and the reason I was struggling. It also can cause hyper mobility and that was what we thought was happening with my back.

When we went to the hospital they started with x-rays. The nurse came out with the results and stated they had seen something on my lungs and wanted to do a CAT scan to rule out pneumonia. As the nurse walked away I turned to my partner and said, “so I guess we’re hoping I have pneumonia?” And we both laughed. 

I’ve been a longtime subscriber to the CHANI app and while we waited, since it was New Years Eve I started reading my yearly horoscope. The primary themes shared were Healing, Focus, Connection, and Courage. “Oh fuck.” I said to my partner reading it. I knew then something big was about to happen. 

When the nurses came back out with the CAT scan results they brought us into the “spiritual room”. My cancer had come back and they were seeing it in my lungs, liver and back. “ You should call your oncologist right away,” was their advice. “they may just advise you to go home and be comfortable” was the prediction from the scared nurse.

I am a believer in miracles and the infinite power of love and the Universe. I’m also an oracle card reader and I had pulled cards before going to the hospital. The first card I pulled was called Inner Earth and the message read “You’ll survive this. New beginnings.” So while western medicine can be full of fear and despair, I was not scared of dying. I have too much to live for to let cancer take over and I was ready to take it on.

Determining the plan

We went home and immediately started reaching out to people in NYC to find the best oncologist to work with. My partner Ben is an acupuncturist and worked in the city for many years also building community networks of wellness providers. He has many contacts across the field. We reached out to Ruth Oratz at NYU and she advised us right away. She thought it would be better if I sought treatment upstate because the trek to the city is a lot and we agreed. She offered to advise us on who to see up here. We found a few people and tried making appointments but it took a bit of time and no one could see us right away. Our first appointment with the doctor we had chosen with Ruth’s approval was from NYOH (New York Oncology and Hematology) and was booked in New Amsterdam, which is an hour and half away. We reluctantly accepted because it was the soonest we could get in.

Then our first miracle arrived. Out of the blue the day before the appointment the office called me and asked if I wanted to come to Hudson instead and see Dr. Maria Theodoulou. Hudson is only 40 mins away so a much easier ride. We called Ruth. “Is Maria Theodoulou ok?” “Yes!” was the answer and so I accepted the appointment. Dr. T had graciously given up her lunch to squeeze me in and I was very grateful. 

The first time I had breast cancer I had an unpleasant time with the western system. I was turned off by the fear mongering, rejection of any spiritual or earth-based connection, and especially the inability to want to look at the root cause of my illness. Meeting Dr. T was the first time I actually liked and trusted an oncologist. She is a no nonsense woman who leaves her ego behind. She did not use fear tactics around her proposals and she left the door open for me to seek out 2nd opinions. She also happened to be the head of the breast cancer program at Sloan Kettering for over 25 years and a lecturer at Cornell Tech, recently moved upstate when her husband retired. I too am a mentor at Cornell Tech. Game recognized game. I knew I was in good hands.

It took us a couple weeks to figure things out with scans and a biopsy to determine what my protocol would be. Meanwhile things were progressing pretty quickly in my body and my health had deteriorated to barely being able to get around. My condition was bad enough that I landed in the hospital restricted to a wheelchair and barely able to breathe. 

Mast cell activation syndrome is an illness the field is just figuring out. Mine is hereditary and I’ve watched my aunt suffer with it for years. The hospital did not know how to treat it and while I went in there having a severe mast cell response, They were refusing the treatment I needed (which is simply Benadryl) and we were having to sneak it to keep me breathing. The day before the hospital we had also started my chemo meds and the hospital oddly tried to refuse that too. Attempting to put me on a different course. Confident in Dr. T I boldly continued my meds in front of the charge nurse despite the hospital rules and resistance.

It got to the point that we were demanding my discharge and the Director of Palliative Care had come in to see us off. She talked with us about what they do and to connect with the palliative care team at NYOH, and then that lady reached over me and handed my partner her business card and said he should contact her to help him communicate in an age appropriate way with our children, (my daughter Nova and Ben’s daughters Aviva and Celeste) about my death. You’ll survive this was still strong in my heart and I was furious by this woman’s assertion. Grossly unprofessional. We gratefully left the hospital minutes later.

Sonya’s story keeping me hopeful

At that point I was bedridden, unable to walk much, my right hand slowly stopped working and I was needing a lot of help. My mother came to stay with us for a few weeks to help care for me and we had hired a new close friend, Fukiko, as a caretaker. 

Just before I started chemo, Dr. T had put me in touch with another patient Sonya. Sonya was just going through her own Stage 4 breast cancer journey and like me there were tumors found on her liver, back and breast. We are both in our 40’s and mothers. We both happened to have the same type of cancer ER/PR+. She was four months into treatment and had just gotten a clean scan. When I spoke with her she gave me a true sisterly pep talk and told me this program works and I can do it. I can dissolve all those tumors and live a healthy life with my kids. I was focused and determined to get better. 

It was within a week of being on the chemo meds that I started to feel better. When we had returned from the hospital we reconnected with Dr. T. Something was shifting and we could all see it. “Did you talk to Sonya?” she asked. “ Yeah and she was amazing. I know I can heal, I know I’m healing.” Then she told me that when she was at Sloan Kettering she used to do that all the time. Go into people’s rooms and then put them together to connect around hope and healing. Love me a community organizer, here was another reason the Universe put us together. 

Not out of the woods yet

I continued with the chemo through the winter and spring and things got way better. I was out of bed and able to walk more and had started PT to work on returning the use of my right arm. At 4 months we did a PET scan to see where things were at. 

The results were mixed. Major improvements around my lungs and good changes in my back but the cancer had still kind of exploded in my body and we were seeing spots on my liver, shoulder, lymph, lungs and hip and something funny in my uterus. A few more MRIs were being ordered for us to look a bit deeper and figure out what changes we needed to make to turn this around completely.

A week later a severe headache came on that brought me back into the hospital. CT scans and a brain MRI showed tumors in my brain. The journey continues. 

Moving fast the neurology team assessed my situation and ruled out brain surgery. Their were a series of small tumors on both my prefrontal cortex and brain stem. They opted for 10 days of radiation instead. 

I went that week to Ulster County Radiation and got fitted for a mask. A face mask was made molded to my face for me to be strapped down on the table so they could pinpoint the exact right places on my brain. This scenario was something out of a horror film. Everyday for 10 days I walked into the radiation room alone, got strapped to the table by my face mask so tight it would smoosh my nose. I used every breathing, visualization, and meditation tactic I knew to remain calm and was always so relieved when the practitioners came back in and said “You’re done.” And a few seconds later they would unstrap the mask. Breathing for the click and release.

Healing looks like lots of things

As part of my healing I have invested in therapy and have been working with Kat Hunt of sunmoonearthsea doing Akashic Somatic work. This work is unbelievably powerful and I am so grateful to have it supporting this process. In an earlier session it had come through that I needed a place to heal and pray. A woman’s tent to house all our good intentions and open up to receive. Kat had a 16’ tent we could use and we set to work putting it together. A true tribute to the beauty and love of our community, the next weekend a handful of friends came over and built a magnificent platform for the tent. Their whole families came with blankets and food and so much love. The kids played while the parents worked and it was a gorgeous day of community connection.

The women’s tent was born. We gathered people for the Strawberry Full Moon/Solstice Celebration. It was a potluck bringing an enormous flow of beautiful, healthy food. Then we conducted a fire ceremony. This is one of the ways we honor the full moon. It was a powerful time of release. I both wanted to be witnessed in my release of what no longer serves me and wanted to be witness to my community and what they were ready to release. It was such an incredibly powerful and beautiful expression from so many community members from near and far. It was such an honor to experience. And it really help return me to my roots as a community gatherer and healer. We emanated in love, purely saturated. I could see it and feel it in everyone. The tent is calling for more connection and that is what we’ll be bringing to it this summer. 

Thank you for reading my Substack The Medicine Tent. I will continue to write frequently about my progress with healing from cancer and focus more of the story of my spiritual journey in healing and overcoming death. I plan to heal completely and will share my journey along the way. 

To support my journey and writing you are invited to become a founding member or subscriber. 

We also have a Meal Train where you can donate, buy a gift card for food or provide us with a meal.

We are so grateful for the abundance of community support. Thank you for reading. More to come soon.