Hello family and friends,
It’s me, Malena: your fellow creative producer, community builder and art activator. I spent the last four months conducting a consultation for community operations at Wild Seeds Ranch outside of San Diego. It was incredible to share time at such a beautiful place with awesome people while doing meaningful work. I recently returned to Austin earlier than planned to pursue medical care, as my insurance only works in Texas. I’m sharing my story as I’ve found it helpful when others share their health journeys. I’m also asking for your support through this challenging moment.
I was recently diagnosed with a 5” tumor on my right ovary with high indicators of cancer. I’m scheduled for an open surgery on October 18. I have limited information until the surgery when they perform a biopsy. They will be able to confirm if it’s cancerous or borderline, the type and stage at that time. I will need to spend 3-4 nights in the hospital following surgery and have ongoing care for two weeks at home. It will be 6 weeks before I can lift more than 8lbs, so I won’t be able to handle my dog Zorra’s leash for at least 8 weeks. Even though I’m between living situations, I have had friends and family members in Austin open their homes to me, for which I am so grateful. I’ll stay at my Aunt’s place in Oak Hill after surgery, which feels like a peaceful and beautiful place to heal and recover.
(Scroll to the end for the Diagnosis Process for more details)
Next Steps
Until the surgery, I am focusing on my mental/emotional/spiritual health to prepare for what is to come. I don’t know how long this process will continue and whether additional treatment will be required beyond the surgery. I am holding peace in the not-knowing of it all, deferring any worry about what-ifs until I have more information. I am staying with a dear friend in Austin now at a peaceful place with caring and supportive people.
Part of me wishes that I was in a more stable financial and living situation when this happened. But a larger part of me recognizes that I have lived my life fully and loudly, and for that I have no regrets. I am exactly where I need to be and exactly who I am today. I have been fortunate to build friendships, working relationships and meaningful memories with thousands of people across the US and around the world. I have pursued my passions and professional development unceasingly, despite my ongoing dips with chronic illness.
Recently, I’ve been managing 3-5 consulting projects at a time, which has allowed me the flexibility to work and rest as I need to. I’ve not been able to work much since this came up about a month ago, but hope that I’ll be able to do computer work a few weeks after surgery. I feel blessed that I’ve developed deep friendships with my clients and people I work with, because these have been some of the first people to stand up and offer support. While I’m not where I want to be financially, I trust that this too shall pass and I will get there one day because of the investment I have made in myself and my career.
I’m reaching out for support from my friends and family because I know that many people care about me and are willing to help. I fully understand if you are not able to give financially right now and that everyone is balancing a lot of priorities and challenges at this moment. Small amounts add up and anything you can do is appreciated. Please share this page to help get the word out, especially to people who know me.
Ways You Can Help
- Donate to this crowdfunding campaign. This will also get you on the list to receive updates on my health progress.
- Join this Telegram group to receive updates:
https://t.me/+xYv7RHcXPJc1ZWFh - Add your recommendations for health studies, articles, and complementary alternative therapies to this sheet. Plz include links!
- On the other tab of the same sheet, you can add suggestions for movies, books, anime, albums, music sets, etc.
- Send me memes and funny vids. Let’s not discuss politics or the election tho plz, I need to limit stress.
- Understand that I may not have the energy to do many phone calls, but can be more responsive by text
Stuff that Would be Helpful
- Anything from this Amazon Wish List (I try not to use Amazon anymore, but it is convenient for something like this)
Planned Use of Donated Funds
- $8,700 out-of-pocket maximum for 2024
- $3k per month for bills and expenses for 3 months ($9k total)
- Stipend for live-in care and cooking support from friend for 4-8 weeks ($1.5k)
- 4-week Board and train for Zorra ($1k at a super reduced rate).
The Diagnosis Process (skip if you don’t want the details)
I’m 38 years old and am considerably young for this to happen, but just in my awareness of people I know and people they know, these types of serious diseases are becoming more common in younger people. I’m sharing this because it may help someone else seek diagnostics quickly if they experience something similar.
For the last 20 years, I have experienced episodes of pain and inflammation in my lower rib cage area with headaches and mild nausea, which can last anywhere from a few hours to a few weeks. The episodes seem most related to diet and stress. I’ve developed and managed my diet and food allergies over the years, but can still get sick from accidental contamination (like tomatoes, so sneaky). I’ve also developed strong practices to manage my stress and hold my center and calm through chaos. Only recently have I acknowledged this as a chronic illness, and have pursued many different healing pathways and medical diagnostics over the years with few answers.
Because of my experience with chronic illness, and having a highly sensitive central nervous system, I have developed a practice of monitoring and listening to my body. When I look back, I could feel that something new was developing in my health as early as January of this year. My food sensitivities like egg and dairy became full allergies to avoid completely. I lost my ability to tolerate alcohol, even hard kombucha, back in March. I felt lower energy overall and experienced more episodes of pain and inflammation than in recent years. I removed my copper IUD in May because I had been experiencing debilitating pain during my cycles for several years, which seemed to help immediately. I also went through some of the most stressful months of my life for the first 6 months of 2024, which felt like plenty of reason for the episodes.
I got a mild case of covid in mid-August and recovered quickly. A week later, I had my cycle, which was more painful than in recent months. The day after it ended (Sept 12), I woke up with a new pain and inflammation in my uterus. I had been monitoring a hard area above my right ovary for about a month, which was suddenly much larger and visible as a bump. I immediately called my insurance and confirmed that my coverage would only work in California in the ER. But I hadn’t touched my $2k deductible and would still be obligated to 25% of the ER cost. I called up Planned Parenthood and got an appointment the next day.
The gynocologist did a physical exam and suggested I get an ultrasound. My best option was to go to Tijuana, which was $60 USD for the ultrasound and later $350 for the MRI. I found a great doctor and location. Dr. Luna found a 3” cyst on my right ovary with an adjacent 2” cyst, signs of abnormal tissue where they touched. She ordered blood work and suggested I get an MRI as soon as possible. I went straight to the lab for blood work which was returned within 2 hours showing high levels of CA-125.
I scheduled an MRI for two days later and returned with my dear friend Brendon, his dog Edge and my dog Zorra. We rented a relaxing Airbnb with a terrace and view of the ocean. We received the results of the MRI within 4 hours and Dr. Luna called me at 9pm to deliver the news that I would need to see an oncologist and that surgery would most likely be necessary. She connected me with an oncologist on WhatsApp who confirmed that the imagery shows a 5” tumor with indicators for malignancy (cancer). However, they would not be able to confirm cancer, the type, stage or spread until surgery.
I want to give a huge acknowledgment to the country of Mexico and the entire medical team I worked with in Tijuana. I’m grateful that they allow us into their country so easily to receive cheaper and faster medical care. I was able to move through this entire phase of diagnostics within 3 days. If I had stayed to pursue care in Tijuana, I could have had laparoscopic surgery within another 2-3 days. The facilities were beautiful and new, and every person I encountered treated me with kindness and care.
While Mexico could offer a faster pathway to treatment, there would be no ceiling on how much it would cost. An exploratory laparoscopy surgery would have cost $5,000 USD. My insurance has a $2k deductible and out-of-pocket maximum of $8,700. Unfortunately, it will reset at the end of the year, and I will need to switch insurance companies because mine is pulling out of the healthcare marketplace. I’m grateful to have insurance and that denying coverage for pre-existing conditions is no longer legal (thanks, Obama!).
I pivoted my attention to pursue care in Austin. It took 5-7 business days full of phone tag and emails for me to schedule an appointment with two different oncologists. I’m having to breathe into the reality of how much slower the American medical system is going to move, but I feel stable in my condition, and even though I can feel the pain all the time, it’s not getting worse yet.
I hope sharing more detail about my situation might help others seek care as soon as they feel like something is up with their body.
