Wednesday, August 2, 2023. A threat, real or perceived, is an intention to inflict pain, injury, damage, or other hostile action to one's physical or emotional well-being. When I was diagnosed with breast cancer 17 months ago, I experienced a threat. And at the time, the nature of how that threat would impact my life was a mystery.
At first, I didn't want treatment. I had already been through so much pain and discomfort. But I had worked on myself to try to change my thinking and accept my disabilities. I had the resources and courage to create and release music again. I had an amazing husband and two loving dogs. I had a reason to live. I had my doubts of course, afraid of the unknown, but I thought maybe I would be lucky, and I could get to the other side of cancer treatment feeling blessed and grateful. I was able to methodically and rationally weigh my options and choose the correct treatment path. Yet something about my initial reaction left me uneasy. My first instinct was not to fight, but to forfeit. And now I know why.
Prior to cancer, I had finely tuned coping skills (e.g., my "boundaries") and had been able to coast for some time - long enough to work my way into a stable, well-paying job that provided the funding to begin The Music Tarot and begin living my dream as a published singer-songwriter.
But that life is in danger now.
Breast cancer blew up all my coping skills and I have been unable to recover the life I want to live. I have become even more disabled than I was before cancer. My thinking and concentration has continued to decline. My short term memory is fragile and cannot be trusted. My insomnia has worsened. I have panic attacks. I am afraid of everything.
How could such a high performer, an artist of great potential, a career professional with a reputation of being the most organized person in the whole office, end up like this? Is cancer diagnosis, treatment, and recovery really this damaging, even when surrounded by whole dang flock of supporters, doctors, psychic-healer, mental health providers, friends, and family to help you through it?
The answer is yes.
Especially if you suffer from undiagnosed post-traumatic stress disorder.
I've been racking my brain for over 6 months, trying to figure this out. Throughout my diagnosis and treatment I saw 5 different mental health providers. Employee-Assistance-Counselor J said, "You've been though a lot in your life and I think this is just how your brain is wired. Yes, you have struggles, but you get through it." I eventually stopped seeing her after 16 sessions, because I wasn't getting anything out of it. Miah was frustrated because in between my sessions, I would go to him for help with my worries. He hated seeing how much trouble I was having making decisions, making dinner, doing my job, etc., and yet my counselor was telling me this is just how I am wired. His counselor would shake his head, dumbfounded at what my counselor was telling me.
I also saw Cancer-Psychologist L who recommended I write down my values and do a self-assessment once a week to compare my actions against my values. Her logic was this: if I lived each day according to my values, I would be at peace with an early death, if cancer ends up killing me sooner than later. She also said if I needed more help than that, I had to get on a waiting list for health psychology instead, to deal with my chronic pain. I only saw Cancer-Psychologist L 3 times.
I then saw Psychotherapist R for 7 sessions. I paid out of pocket and it wasn't cheap. She told me I was emotionally neglected as a child and that is the root cause of my resistance and fear in life. I would need months or years of intense CBT treatment to resolve this. This diagnosis and treatment plan didn't feel like the correct path for me.
When I began having panic attacks around the time of my cancer anniversary, Psychic-Healer K told me, "The body remembers" and "you can't think your way out of this." She suggested I look for a trauma therapist, someone who could do Eye Movement Desensitization Reprocessing (EMDR), or equivalent, to release the trapped trauma stuck in my brain and body.
So I called Primary-Care-Provider-Doctor A and asked for help. There were no trauma-focused mental health providers taking new clients within my entire healthcare system! The waiting list was 12 to 18 months. I spoke to a patient advocate who said she would research other providers and call me back in a week. She never called me back. Two weeks later I called her back, and finally got connected with Licensed-Social-Worker P. I had 2 sessions with her. In my first session I was adamant that I needed trauma therapy and asked her if she specialized in trauma work. "I see all kinds of clients and address many different kinds of mental health needs," she told me. After my second session, it was obvious she could not help me.
On April 14th, I tested positive for COVID-19. This illness knocked me so far back, any hope of still working my job, completely went out the window.
3 weeks later, after a lot of sick days off work, I was back at it, trying to return to a normal way of living. May 2nd rolled around; the day of my 1-year follow-up with Surgical-Oncologist-Doctor L. Miah and I woke up to prepare for our day and both saw missed calls on our phones. We learned that a very close family member had been med-flighted early that morning to the same hospital where I was scheduled to see Surgical-Oncologist-Doctor L. So on that morning, after we visited the Oncology Department for my follow-up, we then visited the ICU to check on our family member. To say it was a disturbing day is an understatement. It was downright horrifying.
The next day, I attempted to work my day onsite at the office. In the first hour I encountered a problem with the hoteling software program needed to "check-in" to my workstation for the day. Since I am a mostly remote employee, I need to book a workstation for my onsite days. I couldn't get the check-in function to work, and my booking became canceled. I became distressed and a co-worker overheard me sighing with frustration. This co-worker was aware I had been struggling for months and was trying to help me. She forwarded me information about a new offering by my employer's Wellness Team - onsite counselors who can assist with life stressors or other short term needs. I booked a session with EAP-Counselor P for the following afternoon.
That night, I wrote a list of all the hardships I had endured over the past year and a half. The next day, I met with EAP-Counselor P. I told her, "I am going to read you a list of all my struggles and I want to know if you think I should request a leave of absence from my employer." I read the list and looked up, waiting for her answer. "Yes," she said, and then, "You keep getting hit with more difficulties and are unable to heal. You will not be able to recover unless you take a significant break."
So off I went to do another uncomfortable FMLA request. For the next two weeks, I did not work. I waited, and I worried, and I tossed and turned, and I dreamt about haunted houses and other scary things.
Finally my request was approved. I received 12-weeks leave, along with short term disability pay. This was a good thing, but it was a drop in my income that required me to do some planning.
I continued to see EAP-Counselor P during the first half of my leave. She believed I had not been getting the correct mental health treatment. At my second appointment she said, "You need trauma therapy. You need treatment." I asked her why none of these other providers were able to diagnosis this, and she didn't know, but I could tell that she was disappointed in them. The Employee Assistance Counselor I saw for the duration of my treatment didn't have a clue. Surgical-Oncologist-Doctor L had no idea. Cancer-Psychologist L didn't pick up on it either. Not a single provider thought anything strange about my odd reaction to getting a breast cancer diagnosis. "What if I do nothing?" I had asked them. They didn't answer my question. "We can only tell you how to treat it," is all they said.
EAP-Counselor P referred me to Trauma-Therapist J, who is certified in EMDR. I spent several days creating a detailed spreadsheet, containing 5 worksheets: (1) Traumas and Medical Issues, (2) Migraine History, (3) Migraine Treatments, (4) Current Health Issues, (5) Current Medications. I downloaded the intake forms from Trauma-Therapist J's website, filled them all out, and emailed them to her, along with my spreadsheet. She booked me for intake on June 21.
After my intake, I completed several assessments to solidify my diagnosis. I scored extremely high on the PTSD assessment. With Trauma-Therapist J's help, I learned that I have been living with PTSD for most of my life, and the trauma of breast cancer was like a bomb to my hypervigilant nervous system. It simply pushed me over the edge.
Moreover, the trauma stored in my body may have contributed to my breast cancer in the first place. I shared this research with Trauma-Therapist J and she asked me to make a verbal contract with her to stop Google searching this kind of research. While there may be some scientific evidence to support the lack of disease fighting cells in the body of a trauma-riddled nervous system, reading about it would not be helpful to me, nor would it make any difference. It was hard, but I kept true to my agreement.
To the casual observer, distant relatives, and my online followers, I may look and appear fairly normal. I am still putting on makeup most days. I am still experimenting with fashion and creating digital content. I am still posting on my social media and promoting my songs. But I no longer wear my foobs (prosthesis breast forms) because they hurt too much. My chest has developed chronic pain, which worsens when I swim or wear the prosthesis. I don't love the flat chest look with my pectus excavatum sticking out strangely, so lately I've been finding new scarf tying techniques that create interesting looks and make me feel less deformed.
I've spent most of my summer trying to rest, but it hasn't gone well. I read a few books on PTSD and trauma and identified with almost everything written in them. I finally feel like I'm getting somewhere with treatment. After my first EMDR session, my nightmares began to dissipate. I am no longer afraid of my bed.
And while I am grateful for the correct diagnosis, I am still petrified. Since I was unable to follow the recommended treatment for my breast cancer - Tamoxifen - I have less protection against recurrence. My brain tells me I may only live 5 more years before my cancer returns. I obsess over this. I feel like there is a big gigantic clock ticking away above me, reminding me I must use my good days to create my songs, or my life's calling will not come to fruition. There is also another a blocker I cannot yet figure out a way around - if I am unable to work, I cannot earn the income needed to create the songs the way I want to.
I don't know if I'm going to figure this out and find peace. I am terribly sad when I look back at my life, and all the years I struggled, not understanding why things were so hard for me. Thinking it was just migraines. Thinking it was just health problems. But really, it was PTSD, and maybe, just maybe, the health problems were a result of the PTSD.
I don't want my life to have amounted to just a bunch of suck, with a sprinkling of joy here and there.
I recently finished recording song #19, Warrior / Seven of Wands. I decided to use a magical method to select that song for production. I made a TikTok of me pulling the next card for production, and I drew the Seven of Wands. I think I drew it because when I originally wrote it, Warrior-S was going through chemo for her breast cancer. And now, with my own breast cancer recovery being so difficult, the song needed to be produced. I am looking forward to its release in the near future. I also recorded piano for Surrender and Release / The Hanged Man. I am waiting for Brian to produce the music before I record its vocals. I chose that song for #20 because it fits my situation perfectly, and creating music is part of my therapy. Both songs will be released in 2023.
So why do I choose to be so vulnerable, and share my struggles so publicly? Because I know I am not unique. I know there are others who struggle. And if I can't always make my songs, I can at least share my story. And maybe this will help someone else feel less pain. Maybe this will give someone else the strength they need. We are all energy connected. My life might not be sunshine and rainbows, but I still have something to offer, even if it comes through a lens of struggle and darkness. I hope in a year, my message will change, and sound a little more lighthearted. Wishes / Nine of Cups is still waiting for its turn at production and that is one happy song, let me tell you!
But for now, in this place of danger and uncertainty, I feel lost and I don't know who I am. I've been a high energy, creative, organized, albeit overly-cautious, detail-oriented planner my whole life. Many people tell me I am brave and resilient. I hope they are right. Because my songs deserve to exist, and finding a way to create all 78 is my final wish for this lifetime.
End of 20 - Danger