Let me set the stage for you…

It is 2022. I start emailing my doctor about re-occurring health issues. In June I notice extreme dryness around my lips, followed by full blown eczema on my face, chronic fatigue, and rectal bleeding. I request blood work and am told to take iron pills and stool softeners for hemorrhoids. A couple months later I receive an email from Kaiser, a health plan I’ve had since I was born, that my premiums have not been paid for 8 months and they would be removing my insurance for me and my family. Keep in mind, I pay privately as a single mother and business owner and have always been good at paying bills timely. I’ve had automatic payments for over a decade and didn’t realize they stopped withdrawing, a glitch on their end. I never received email notification of this delinquency even though I’m on Kaiser’s website regularly and paid copays during the same time period for my son’s broken arm, ER bills and blood work.  

On Feb 25, 2023, I was told if I don’t pay a large lump sum in two days, I would lose our health coverage. Knowing my current condition and sons’ needs, I agreed to pay the due amount with a Kaiser representative. They sent a link to pay totaling $11,657.54, which I paid immediately. A month later, I received a letter from Kaiser telling me I’m $3k short and therefore lost my health coverage. I explained this was another issue on their end, but they refused to retract their decision. Months pass and I disputed twice and was rejected, twice.

While I’m trying to reinstate my family’s insurance, I begin paying to be seen by alternative doctors because my condition is worsening. I’m feeling reoccurring belly pain, diarrhea, bloody stool and extreme fatigue. I try supplements, celery juice and a gluten-free diet, nothing is working. Finally, in September, after I reach out to the CA Dept of Managed Healthcare to investigate my case, Kaiser sends me a letter stating they will reinstate our coverage if I pay for the last 9 months or $16,647.31, when I had no access to healthcare. DMHC found Kaiser was at fault for not notifying me properly and providing a 30-day grace period before canceling my health plan coverage. I received no emails beside a mailed letter, to a former address I updated in their system nine years ago.

Annoyed and angered by their decision, I questioned if I should take a risk, save money and wait a couple months to reapply for health coverage when open enrollment begins. Unfortunately, but fortunately, the answer was made for me when I broke my arm while roller skating. As I was gliding across the outdoor skating rink, suddenly the wheels beneath me halted, and I felt ‘spiritually pushed’ as there was nothing around me. The moment I aggressively landed I knew I broke my arm, but I wasn’t thinking of my deformed forearm. I thought with silent relief, “Now I can go get my stomach checked.”

As soon as I reunited with my primary physician, he ordered a CT scan after concerns found in my updated bloodwork. After seeing a mass, I underwent a colonoscopy where they biopsied a cancerous tumor the size of a small orange. A day after the procedure I underwent incredible pain and was hospitalized for infection; a situation I believe happened because my tumor, a bunch of cancer cells enclosed to protect my body from it, was now poked and spreading outside of its containment.

Since it was 90% localized, relatively small with just one distant lymph node activated, I asked them to remove it. They said no.

I felt fear from others as I entered into this unknown world. There was candy at check in at my oncologist’s office. I thought that was weird. I asked about taking supplements to help with treatment. He firmly said no. I asked if turmeric, which is commonly used for inflammation can be taken, he said no. I asked what foods he recommended. He said he doesn’t know and would refer me to a nutritionist for questions. He told me about chemo studies and I told him it’s because nothing else is being studied. He agreed. I confirmed we’d use the chemo commonly used with my specific cancer. He wanted more drugs because ‘I was young and can handle the kitchen sink.’ We compromised but it didn’t reflect the plan he emailed me later.

He talked more than listened. I felt extremely unheard.

Later, I felt the negative impact of asking simple questions when my surgeon nonchalantly and seemingly negatively remarked, “we’ve been talking about you,” when he first walked in upon meeting. He then proceeded to ask if I wanted to live for my kids. I was shocked by his distasteful question. After he performed an examination, a procedure that was one of the most uncomfortable feelings of my life, I never felt so unsafe. When I repeatedly asked what size, the tumor needed to be to operate, I was constantly dismissed, “just smaller” and “you must follow our gold standard protocol of chemo and radiation” was always the answer. Weeks later he would confirm our incompatibility when he exclaimed rudely that, “miracles don’t exist” when I asked if he would commit to performing surgery if the tumor shrunk naturally. I wondered how he managed dealing with people of faith.

Feeling alone and unable to advocate for myself, I stayed with Kaiser. When I underwent an emergency colostomy surgery for suspected bowel obstruction, I asked them to remove the tumor since I was undergoing an operation already. They said no.

Concerned, my primary physician contacted me and asked what’s going on. I told him about my frustrations with my experiences and he asked what I needed in order to move forward. Since I’ve been with him for years and felt safe to express, I dreamily said, “Let’s call this ‘Operation Save Maria’s Life’, in a perfect world I would trust my team. I would feel like they listened to me, had my best interest and worked with me as we developed a plan. As I am seeking this new team, I would go hard on all holistic treatments and rescan in 12 weeks. If it is deemed not operable, I agreed to 6 rounds of chemo, no radiation, followed by the surgery I’ve requested since Day One. I created a poster board with my plan and protocols and moved forward in the darkness.

I am often asked why “I’m against chemo.” I’ve repeatedly stated I’m not against it, I just welcome all options. I don’t pretend to know more than specialists; I just know when I don’t trust a situation or person. I am game for whatever works, by whatever means it takes. I believe when you forget about purpose and focus on preference, that’s when trouble begins. We shouldn’t be stuck on how we heal, just that we do. I liken it to being stuck on an island and being given various boat options but refusing to get on any because you are fixated on a belief that you were supposed to be saved by a yacht. Let go of how, what or who – and remember the Why.

Why are you on this journey? It’s not political. It’s not to prove anyone, anything. There are no rules. I believe you will get what you want and often times not in the path or package that you expected. If you follow what feels good in your heart, it will guide you in the dark and surprise you when you turn on the light.

It is now nearly a year since my diagnosis, and I now drive an hour to see my new team of doctors in another city. After a CT scan, Pet scan and MRI, we’ve concluded it’s time to pivot to the next stage of my contingency plan. While my holistic treatments didn’t shrink the tumor and may have halted spread to major organs, it’s time to move forward. I cried this entire week for various reasons…disappointment, anger, sadness, frustration.

My first thought was, “I failed” or “I did it wrong,” as if I had control over this situation. When I deeply meditated on this feeling and the purpose behind this pain, I ruminated on the lesson this was trying to teach me and questioned, “what would I have learned if I were right?” After all, I seemingly ‘win’ at most things. In response, I knew I’d feel proud if I was right. Internally I wanted to feel proud I was able to accomplish something most cannot. I’ve struggled with the symptomatic approach of western medicine and was angry with my dismissive experience at Kaiser. That’s the vulnerable truth.

But I also intuitively know that “pride comes before the fall.” I’m not going to die trying to prove I’m right. I’m not going to make something work, if it wasn’t working. I surrender. I’m learning more about who I am as I humbly accept what is required of me now.

I’m letting go. Again. Just as I did when I made hard and difficult life pivots in my marriage and career choices. I’m letting go of my preferences. I’m letting go of a story. I’m letting go of my ego. I’m reshaping my world and feeling like a soft newborn baby as I become awakened to new thought patterns, old belief systems and spiritual awareness.

As I sat through my appt with my new surgeon today my heart dropped as she described the size of the tumor, which is approximately now a large grapefruit and no longer operable. It is still localized but it has seeped into my uterus, grown into my rectum and is now pressing against my bladder. I told her my concerns of ongoing pelvic pain and increased usage of pain meds. She listened. She spoke with intent and didn’t hasten our time together. She said she has thought of me often with care.

She told me she was sorry – that had she been with me from the beginning, she would’ve operated. In hindsight the doctors missed multiple opportunities to help me. She validated my initial instincts for surgery. She validated my challenges with specific doctors. She validated my journey in this broken system.

I felt seen.

As I sat there crying, upset and angry – annoyed that I was perhaps Stage 1 or 2 when I began complaining of pain in 2022, how Kaiser unlawfully denied my health coverage and therefore delayed diagnosis in 2023, how I paid $30k in a span of 10 months plus annual high deductibles to a business that refused to give me treatment options. I was annoyed they withheld surgery multiple times when it was safer to operate. I became self-deprecating and wished I jumped ship and changed health plans in the very beginning. I wished I followed my instincts. I wished I weren’t so stubborn because now, I was experiencing the very last stage of cancer.

When my surgeon noticed my critical evaluations, she immediately responded, “No. Thank God you were stubborn…you wouldn’t be here right now if you hadn’t fought for your life.” Thank God I fought to get my health coverage back. Thank God I sought doctors who listened to my concerns, after all, I’m the one living with a disease that has no guaranteed cure. Thank God I had the means to pay Kaiser’s outstanding bills, alternative treatments, and out-of-network doctors when I had no coverage. Thank God I created a flexible plan for myself that covered all bases and left no room for regrets. Thank God I still have options. Thank God.

I have cried all day as I released the anger. It was the kind of cry when you hear a wail during exhales, the kind that leaves you with a headache and finally stops when your entire body is dehydrated of water. When I came out of my room tonight to make a late dinner for my son, the sun already set. As we walked downstairs and into the kitchen without turning on a single light he said, “why is it SO dark?!”

“Haven’t you ever played in the dark?” I asked as I remembered my playful youth with my siblings. “It’s fun not seeing what’s ahead of you.” That is when you build your instincts.

And there you go. The journey continues…