First, thank you everyone who has reached out and commented – I am overwhelmed with gratitude! And I am sorry if my storyline is creating undue suspense – maybe I am trying to recreate some sense of what I was experiencing over these 3 weeks as I went from my first test to my diagnosis (which is still not final). I am finding writing about my experience extremely therapeutic, and if it helps or inspires a single person going through something similar, it is worth the effort!
It is January 8th and I have two days before I meet the doctor – everyone tells you not to spend too much time on Google trying to diagnosis yourself. Well… for someone like me this is impossible! The CT scan says there are several possibilities: a lymphoma, thymic neoplasm, germ cell tumor or a lung cancer. Off I go into internet self-diagnosis! Inevitably you stumble on those awful statistics about what % of people survive 5 years after diagnosis. TRUST ME – do not look at these! These are all based on past studies, not inclusive of modern cancer developments, and, you are not a statistic!!! After some time, I do realize that there really is no way to tell what I have without more testing. Searching is only adding to insecurity and fear, and so I relax my search and come back to my own empowerment.
What can I actually do? Not coincidentally I realize I have been preparing for this moment over the past decade – spiritually and holistically. I have been studying yoga therapy (many are unaware that yoga besides its incredible physical benefits, can heal and strengthen our emotions, mind and spirit) and its sister system of health Ayurveda, even doing a project on cancer and its treatments (conventional, complementary and alternative). And I have been practicing Zen for 10 years – which focuses a lot on not-knowing, on impermanence, and resting in unpredictability.
The first thing I do is radically change my diet. I have known for years the kind of things I would do if suddenly in a health crisis. I go almost fully macrobiotic, no sugar, no caffeine (except a little high quality green tea), no refined grains. Dairy and gluten were already off the table for me. Lots of green smoothies. I used to hesitate at the prices of some organic produce – not anymore! This is a very controversial space- the medical establishment will tell you with near certainty that the diet doesn’t matter too much with cancer. They focus almost entirely on the genetic make-up of tumor cells, and only recently are they considering the metabolic aspects of these cells. A good book that discusses this in a tremendous amount of detail is How to Starve your Cancer without Starving Yourself. I begin intermittent fasting, eating mostly between the hours of 11am and 6pm. In general, I notice how easy it is to refuse a cookie or a late-night snack knowing what is actually at stake here.
I develop a Yoga Therapy program for myself – I’m both the client and the therapist all at once. The focus of my program is on bringing energy to my chest and thorax, to strengthen my immune system, and at a deeper level, release suppressed emotions and resentments. In many eastern holistic systems, cancer is believed to develop in areas where energy is stuck or stagnant, and the famous healer Louise Hay believes cancer comes out of deep hurt, longstanding resentment or grief eating away at the self. This I will return to in a future post, and share my thoughts around what the significance of a chest tumor are for me in this life and what I plan to do about healing the source of it so that after treatment, it doesn’t return.
Finally, its Friday and my sister joins me at the hospital to meet with the doctor. He shows me the CT scan on the computer – now we can see the mass in much more detail than the chest X-Ray. A grapefruit sized mass, sitting right there in the upper part of my left chest, abutting my pulmonary artery and pushing into my lung.
Anterior and Lateral Views
I asked the pulmonologist what he thinks it is – and he basically says that he would only be guessing and probably sending me down the wrong path if he were to do so. From the scans, we cannot tell if it is a mass growing out of the anterior mediastinum (cavity that is between the lungs and the rib cage) into the lung or the other way around. The only way to determine this is with a biopsy, to see what cells the mass is made up of. I was frustrated at his inability to give me anything, but as you will see in my next post, I am now grateful because doctors ‘hunches’ can really affect us.
I asked about my left subclavian vein, that the CT scan indicated is completely cut off. The left subclavian vein is the major vein runs down your left arm. I was in a yoga class the day before and suddenly freaking out that I might have a heart attack or something if weighting my left arm too much. He calmly pointed out that the scan also showed vessel collateralization, meaning that my body grew new veins to bypass the mass – go body, nice job!
He explained that the next steps were both a PET-CT scan and a Bronchoscopy where an interventional pulmonologist would put a tube down my wind pipe to sample both the mass as well as a few lymph nodes that were also enlarged. He assured me that we would make these things happen as soon as possible, including a meeting with a thoracic surgeon, expressing sympathy for how difficult these days and weeks of uncertainty are. He asked me to stop by the lab for a few blood tests on my way out.
I manage to schedule appointments with both the surgeon and interventional pulmonologist for the next Thursday. The PET-CT scan would take at least 10 business days to get approved by insurance as it is a very expensive procedure. I walked away from the scheduling desk a bit dazed, the dawning realization that it was going to be a couple of weeks before I had the full diagnosis.
Luckily my sister was with me to remind me to stop by the lab on the way out for the blood tests – this is where some humor came into the day. Back with the pulmonologist, he explained that one of the possibilities, a germ cell tumor, is when cells that during embryonic development descend to create our sperm or eggs, for whatever reason can remain in other parts of the body and create tumors. I made the joke, its a real possibility that I have a huge third testicle in the middle of my chest! Checking in at the lab desk, the receptionist looks at me and says, uh, do you know they ordered a pregnancy test for you? I laugh and say its a gender fluid world these days. She gets on the phone and after some pause as the other person was speaking, I hear her say He’s standing right in front of me!
Long story short, if I did have a germ-cell tumor or testicular cancer, my body would be releasing the same hormone that a women’s body does when she is pregnant (hormone beta hCG)– a hormone a man’s body should never have. So until Monday my sister and I had a running joke where she would ask me if I had the results yet – and to save you the suspense, it turns out I am not expecting at this time!
That was week 1, folks, and it was time for me to get home and refocus my mind to prepare for an Authentic Relating Workshop that I was co-leading all-day Saturday and Sunday in Denver…