On Jan. 25, I received a diagnosis: (apparent) pancreatic cancer with metastasis in the liver. It all began with pain in my lower back area. When I went to the emergency room on Monday, Jan. 4, I was certain that I was passing a kidney stone. Inconvenient, but no big deal.
It turns out that this is a big deal: I'm faced with an enormous challenge. And I'm totally clear: This is not my last battle!
Before getting into the team I've assembled -- a healer, a naturopath, a Nigerian M.D./holy man and a brilliant oncologist -- I'd rather digress to the "bad hair day" parts of this journey.
Quite a number of years ago, I remember hearing a young woman in a support group at Friends In Deed (where I worked as a group facilitator and counselor for twenty years) speak the night before surgery for a brain tumor. "Right now, I'm not thinking about brain surgery. I'm upset that the man I'm dating didn't make it here to the group as he had promised." Even in the face of the biggest events, it is often our quotidian human emotions that stand center stage.
When the emergency room doctor came in to tell me that there were no kidney stones, but a mass on the pancreas and lesions on the liver, my first thought was, "But I'm going to Brazil on Friday." The decision to take that trip anyhow, despite the need for immediate scans and a biopsy, was, now, in retrospect, brilliant. I had a focus that my doctors accepted and we got everything done that needed to be done, and with the right amount of luck, I actually made it onto the plane. Rather than sit at home awaiting results, I joined some of my extraordinary friends for a week in Trancoso, a bit of paradise in Bahia. Yes, I had a tiny dark cloud hanging over my shoulder, but I also had glorious days swimming and horseback riding on the beach.
I came home and took on the real deal: further testing, another biopsy and beginning alternative treatments with the naturopath and the Nigerian doctor, as I awaited the conclusive diagnosis.
I call it "apparent" pancreatic cancer, because I've been advised not to even give it the concrete status of full actuality if I intend to heal. When the oncologist (I will write about her eventually and how I found her) asked me if I wanted a prognosis, my response was quick: "No. I am going for full recovery. I'm treating this the way I treated AIDS more than two decades ago. I'm willing to be considered 'delusional' for not expecting to die of the condition, and also willing, as happened with AIDS, to be considered 'visionary' when, indeed, I recovered my health. This is not my last battle!"
The world sees pancreatic cancer a lot like the way HIV/AIDS was once considered. Fortunately, I have an amazing support system that includes a friend and collaborator of thirty years who is a pancreatic cancer activist (and who got me to the oncologist), a renowned healer, and connections to the other brilliant (yes the words brilliant and extraordinary come up a lot in my narrative) traditional and non-traditional healing modalities. I am blessed.
But back to one of those "bad hair days." I went for an MRI on Jan. 5. I'm claustrophobic and had some concern and when I went in for a "trial run," frankly, I mildly freaked out. The technician was supremely kind and patient. I asked for a Valium, but I had to have had one prescribed. I did some deep breathing, and remembered that I had, purely by luck, a generic Xanax in my pocket pill box. So I took it, but remained wary. The technician said I could come back tomorrow. But I knew that if I was going to Brazil, I had to do it that day. So, with the help of an eye mask and ear plugs and some wonderful visualization, I did it. And, I felt triumphant: One of my greatest fears conquered! Maybe I won't have to bungee jump now. This could take its place.
Then a couple of weeks later, after the discovery of an embolism in my lung, I was told that I would need to self inject a medication twice daily for the foreseeable future. No big deal right? Wrong! I have been a recovering needle-phobe for my entire life. I'm serious: When a young child I'd be hysterical before pediatrician appointments if I thought I was getting a shot. When I was 12, I had an appendectomy, and when I awoke, post-op and said "It still hurts..." a pain killer was brought, but when I saw the needle, I refused it. I did post surgery without pain meds, which now looks crazy. I never had novocain for dental work until I was at least 40. Crazy again, I'll admit. I got over a lot of it during the years of HIV treatment. I no longer flinch at the idea of having blood drawn, an IV inserted or getting a shot, but I still couldn't wrap my mind around self-injecting.
I could have called upon friends and resources, but I knew a simple truth: I have to do this. The doctor did the first shot to demonstrate how "easily" it could be done, but that night, when it was time to actually do it, I was wracked by anxiety. I spoke with my BFF Christo and he coached me towards the event. When I couldn't get the cap off the needle, I called my MD buddy Joel and he explained that I just had to pull really hard.
I swabbed the spot (needs to be injected subcutaneously into fat -- and this skinny man has one roll of fat to choose from) got the needle primed and slid it in (barely felt it) emptied the syringe, pulled it out and breathed yet another sigh of relief and triumph. I did it. And now I do it twice a day.
I'm "going public" with my situation because pretending things are "normal" is not possible. Healing is now my full-time job. I welcome prayers and good energy. Please don't call, however, and if you disagree with my approach, I respect that, but PLEASE, keep it to yourself. I don't have time or energy for unsolicited negative opinions or fears.
Some people fear death, some people fear suffering, I only fear fear.