Grace - 013

Grace is a combination of mercy and unconditional love. Grace is not something that must be earned but is given freely and unconditionally. It is something that can only be experienced and can’t truly be defined because it is uniquely different for each individual depending upon their circumstances. In my case, I do know that grace is Divine and comes at a time when I need it most and at a time when I feel almost all is lost or about to be lost. It is a Divine gift that lifts me up, holds me, and cradles me like a baby, letting me know I am safe.

I’m not sure why, but I was the most afraid I’ve ever been in this whole prostate cancer experience going into the Axumin PET scan testing on April 1, 2020. I think it was a combination of being worn down by the stressors we are all facing with the pandemic plus having a little too much medical knowledge for my own good:)

Since I had read about the sensitivity and specificity of the Axumin PET scan based on different PSA levels, surely with a current PSA of 7.3, it was going to be abnormal. Your mind goes to some dark places. Will it be in my bones? Will it be in my lymph nodes? It’s really hard to stop your mind from going to some scary places when you have been diagnosed with cancer and your tumor marker is steadily rising.

I was terrified and could feel my body shaking inside even though I wasn’t shaking on the outside. The night before, I had such intense anger, I told Mike I had to go for a ride, and then took off driving down A1A. I drove down to St. Augustine and thankfully brought my camera. I came upon some photogenic landmarks and was able to distract myself with one of my passions until the anger went away.

I’d had a different, but highly sensitive and specific prostate-specific membrane antigen (PSMA) PET scan at UCLA back in September 2019, which was normal. It showed no evidence of metastatic disease despite a rising PSA after surgical removal of my prostate, eight weeks of radiation to my pelvis, and short-term testosterone suppression therapy. At surgery, they had found the tumor had spread to my pelvic lymph nodes.

I did not tolerate testosterone suppression due to severe sleep deprivation, hot flashes, night sweats, and depression. All of my doctors wanted me to stay on testosterone suppression for as long as I could. This was because since the tumor had spread to my pelvic nodes and the PSA was rising after therapy, I was told the cancer was incurable. One doctor had even told me the cancer was going to kill me. I forgave him because it was obvious he knew nothing about the nocebo effect.

Anyway, I was elated after the normal September 2019, PSMA PET scan despite my PSA being 3.3 at that time. The oncologist at MD Anderson Houston told me all they had to offer was testosterone suppression because the genomic testing of the tumor tissue did not qualify me for any clinical trials using immunotherapy.

So I continued my regimen of twice-weekly mistletoe injections and nightly dosing of an herb called “BIRM,” which has shown promise in early clinical studies with prostate cancer. I was also getting regular therapy with Nambudripad Allergy Elimination Techniques, Neuro-emotional Technique, and acupuncture with Cathy Goldstein, A.P. and Kevin Determan, D.C. I was also practicing daily meditation, prayer, doing organic juicing, exercising, and eating mainly an organic plant-based diet.

I was feeling great until I saw that my latest PSA drawn on March 16, 2020, was 7.3. My PSA level should be zero since I don’t have a prostate and it had more than doubled since September 2019. That’s considered a rapid doubling time, which portends a poor prognosis and dramatically increases my chances for metastatic disease and a quicker death.

Since I had paid for the trip to UCLA and the September PSMA PET scan out of my pocket, I decided to do an Axumin PET scan again, which my insurance would cover. At the time of this journal entry in April 2020, the PSMA PET scan was still not FDA approved and therefore not covered by insurance.

I'd had a normal Axumin PET scan in June 2018 after my prostatectomy when my PSA was 4.8, and to the surprise of my doctor, it was normal. I’d had a normal CT scan and bone scan before my surgery. The short-term testosterone suppression and radiation had lowered my PSA to 0.9 in January 2019, but it should have been zero for me to be in remission. The PSA tumor marker has steadily risen since then.

As I was lying in the CT scanner in a pretty uncomfortable position with my arms up over my head, I kept trying to use all of the mind-body techniques I’d learned to calm down, but nothing was working. I had said numerous prayers before and while I was lying there. I was just asking for peace, that’s all, just peace. If I had peace, I could get through this no matter the results.

Then I saw my Dad’s bright blue eyes and I knew he was with me. Dad had passed away just before I was diagnosed with prostate cancer, but he was there with me in the scanner. He said, “Keith, do you remember what I taught you about Grace?” And it all came flooding back - that conversation we had when I was in my mid-20s when I was coming out, finishing medical school, and going through a divorce - incredibly stressed. Dad’s unconditional love and his lesson about Grace are what helped me through that time.

Peacefulness immediately settled in and I finally began to feel calm. I wasn’t surprised that Dad brought along the healer of healers, Christ. I am spiritual and my Dad was both spiritual and religious, so of course, he brought along Christ. All Christ said was, “Look into my eyes.” His eyes were the softest, kindest light brown with a golden circle around the outer edge of each iris. His eyes radiated unconditional love, incredible kindness, and Grace. My fear instantly went away and I felt at peace.

I got up from the scanner, grabbed Mike out of the waiting room, and we sat for a bit waiting for my radiation oncologist to go over the results of the Axumin PET scan. He walked in with my favorite nurse practitioner, Katrina, and he said “I haven’t even looked at it yet. Let’s pull it up on the computer and take a look together.” I still felt at peace.

He pulled up my scan, zoomed in and out several times, rotated the images looking at every nook and cranny of my body, and jokingly he said, “I’m trying my hardest to find something wrong on here but I just can’t.” At that point, Mike buried his head in his hands and shed a few tears. I rubbed his head and held it together because what I was feeling was Grace. I told my radiation oncologist I was going to continue what I was doing and I’d see him again in six months.

Some of my other doctors might think I’m being “irresponsible." After all, I’m a trained physician and know what rapid doubling time means. To them, it means that without testosterone suppression, I will quickly develop painful metastatic disease and die a horrible death. But like I told my radiation oncologist, I’d given testosterone suppression a try and I’m not doing it again.

Even if it means I’ll be here a shorter time, I’m okay with that because I’m not going to live those extra years as a depressed, sleep-deprived, hot flashing miserable person. Plus, something is happening here. I’ve had a bone scan and three PET scans two years apart despite a rising PSA and they have all been normal.

People keep asking me what does it mean that your PSA keeps rising and your scans are all normal. I have no explanation other than Grace. My intuition tells me I’ve got work to do here - service to others with my story - a message of courage and hope in the face of being told you’re going to die.

The real kicker will be when my PSA zeroes out. But for now, I’m being Divinely nudged to do more work - become fearless of death, empowered through living Gracefully, and being grateful for each day. When I’ve learned what I need to learn, I’ll either go Home or I’ll live a very long life. I think it’s going to be the latter.

So for everyone who bothered to read this, just know it was therapeutic for me to write it. But most of all, I’m to give you a message in this crazy surreal time we are going through, who for some, there's fear of suffering and death. Just remember to rely on your faith. Trust that whatever happens, you’ll be “okay.” Most of all, embrace the Grace of living each day to the fullest. For every day we are here truly is an act of Grace.

As Mike and I walked out into the parking lot, this thought popped into my head, “There but for the Grace of God go I.” At that moment, I knew Mike’s Dad was there with us too because that was one of his favorite sayings. That’s when the tears came.