And interestingly enough, during all of this, I was diagnosed with a tumor, and find death to feel more real and even closer than I've ever felt before.
This was a very rare type of tumor called a paraganglioma. I felt the potential for death with the risk of surgery and other potential complications, all along while struggling with the horrible symptoms it caused. It's the only type of tumor that can kill a person not just in the classical way of being potentiality cancerous but by its danger to other body systems.. The increased adrenaline the tumor releases causes high blood pressure, high heart rate, body heat, excessive thirst/urination, risks of heart attack, stroke, sudden death, etc.
It's the kind of thing that can still return and spread despite it being removed, which makes my urgency to share this story (despite my inhibitions) even greater.
I went to different specialists over the course of a year trying to figure out the cause of the symptoms, in saw a:
Chinese medicine Doctor
It wasn't until I mentioned the symptoms to my boss, the CEO of Hospice Maui, who has just 2 years of practice as a Naturopathic Doctor that I found out what this was. He told me in the instant of sharing my symptoms with him to go get tested for the type of tumor that I ended up having. I was nervous to even tell my boss about these symptoms but of course I am forever grateful that I did.
In doing my research I found that the risk of surgery is also particularly great, showing a 50% chance of death under the care of a surgeon that has never dealt with one of these tumors. Yet the HMO insurance carrier I had at the time, Kaiser, was attempting to send me to a general surgeon. An HMO is the kind of insurance in which the doctors you're permitted to see are just a small group, and tied to your insurance (if you need to see someone out of network, they're required to pay for that, and they rarely allow it)- I DO NOT recommend ever using an HMO. Despite all that I've been through the absolute most frightening moment was when this insurance company blocked my doctor’s referral to an outside facility that specializes in this.
In the Same moment of realizing how scary it was getting with the HMO, I heard back from a research center, called the National Institutes of Health (NIH) in Maryland. I was likely eligible to be part of their expert program, in which all care, including surgery, is free to the participant. NIH may sound familiar as it is the leading medical research agency in the U.S.
Patient advocacy has been a passion of mine for a long time. This has come from all I've witnessed while working in the healthcare system. Patients are often completely stressed out over the neglect they feel when being a sort of victim to the system. It is clear to me that's there are often many issues besides being sick in the first place that make recipients of health care in the U.S. feel vulnerable and frightened.
Although I still felt quite vulnerable as a patient, I had the rare opportunity to be part of an a more even exchange in that I was contributing to their research efforts helping them with my rare case, and hopefully helping others with this condition in the future. And perhaps most importantly, I got in the hands of skilled surgeons & survived the surgery!!
The way it all worked out with this research center was a result of largely due to a feeling of hope somewhere within me, believing in magic and intuition despite what anyone around me said. Believing in the possibility of reaching out to them may be worthwhile.
This all makes me realize the importance of listening to ourselves. I truly believe that when we stop listening to ourselves we’re in trouble. It also makes me believe more in advocating for ourselves no matter what the professionals are saying, in searching for alternative options, even when the likelihood of those working out seem ridiculous. And as always, to remember the fragility of our lives here. To never assume that we have a certain amount of time left, to remember to live today in the awareness the inevitability of death.