In the Fear of God and With Faith and Love, Draw Near

The words in the post title are the extremely meaningful words spoken by the Orthodox priest as he comes out of the altar carrying the precious Holy Mysteries of Christ in the chalice as we who are Orthodox Christians come forward to receive His Body into our bodies. After a full year between blog updates, I am not planning to proselytize in this post, but these words of the priest are so incredibly appropriate because when one is physically deteriorating in cancer, and drowning in pain, one must fear God, and draw near with his or her whole heart, otherwise the battle is meaningless.

And 2024 has been the most physically painful year of my life.

In late 2022 I described a potentially miraculous treatment called Pluvicto, a targeted radioactive therapy that was just being made available to metastatic Prostate cancer patients. I was to be one of the first 10 or so to receive it at UC Davis and after many delays and a PSA that was shooting up to a high of 43.5, I finally received confirmation and a first appointment of a planned six. The first Pluvicto infusion seemed to be working as my PSA dropped to 29.2 within 3 weeks. It continued to drop for the next two infusions but then leveled off at about 17. The leveling off was disappointing but we were in hopes that the spread of cancer was being arrested. I received the 5th treatment at the end of 2023 and decided to forego the 6th in January as the cost of the treatment is horrendous and I was hoping not to have to pay the max out of pocket for 2024 in the first month, plus, the leveling off indicated that the treatment was not really working.

The problem was I didn't know what to do next. I was going to be on Medicare on July 1, so could I hold off on expensive treatments until then? I was experiencing more and more pain in my left hip and lower pelvis and it was beginning to affect my ability to walk. I purchased a cane and began to use it whenever we would go out although I began to avoid shopping where much walking was required.

It became clear by March that something needed to be done as my pain levels were shooting up. I would awaken in the night with bone pain levels reaching 8 and 9 on a 1-10 scale, literally crying out and groaning, scaring my precious wife - and me as well. It culminated in an especially bad episode where I cried out to my patron saint Daniel, "The Lion Tamer" to tame the cancer pain. Within 30 seconds I felt relief and within 5 minutes could quit panting and groaning and go back to sleep. With faith and love I drew near.

I had to do something in spite of the cost as my PSA was steadily rising, topping out at 94.7 in June, and the pain was relentless. Both treatment choices given to me were necessary, the first being direct radiation to attack the lesions themselves for palliative pain relief and the second was beginning more chemotherapy to attack the cancer cells causing the lesions. Because the pain was so intense, we all agreed to do the radiation ASAP and follow up with chemo after recovering from the radiation.

Radiation had been held in reserve for me for some time as a way to decrease bone pain. I think we waited too long in retrospect, but I had high hopes for relief. I had been prescribed narcotic pain pills but I wanted to avoid using any more than absolutely necessary, a decision that cost me much agony as I tried to come up with a pattern of pain control that would work without causing addiction.

Before we could do the radiation, I needed to have another PSMA PET Scan to determine where the radiation should be focused. The consult to go over the scan was one of the most disappointing days in memory as we discovered that the cancer had spread significantly under the Pluvicto treatment. It seems the "miracle treatment" was a seriously big failure. The radiation doctor had to revise all our expectations. Sometimes radiation treatments can put a huge dent in cancer, but in my case they were going to have to focus only on my hip where the cancer had spread to a large area. The energy used was going to be too much to hit the entire pelvis, nor the other new areas developed under Pluvicto like my leg, lower spine and left shoulder. We set up a schedule and went in for 5 treatments, Monday through Friday in late May.

My radiation machine

I was nervous as I hobbled to the radiation table, partially disrobing and laying down on my back while the wonderful technicians matched the crossed lasers with tattooed dots I'd received in an earlier setup appointment. Then the bed automatically rolled back into the depths of the machine and I contemplated what was about to happen. I drew near to God as what was about to happen was a point of no return. The affected bones were going to be prone to breakage if impacted in the future. Some soft tissues would be damaged. I remember thinking about our Beloved Theotokos, the Mother of God, and remembered her words when the Angel explained what was to happen to her. She responded "Be it done unto me as you say." So as I listened to all the odd mechanical noises ramping up, I felt calm and at peace, asked her to help me be as obedient as she had been, and said "Oh Christ, be it done unto me as you will."

The process wasn't terribly long, but the effects were nearly immediate in regards to tissue damage. I had walked - albeit slowly - into the treatment center, but halfway back out to the car everything seemed to slowly lock up in my hip joint and Juli had to go get my cane. That hip joint pain has only gotten worse and I am now in Physical Therapy trying to get my hip to loosen up. But thankfully, and separately, the actual bone pain the radiation was attacking started diminishing after two weeks and I am so thankful that it now hovers around a 1 or 2 on that pain scale. A piece of cake.

Why right on the wrist bone? Ouch!

The first week of July I began receiving chemo again and in fact yesterday received the 2nd infusion. We are hopeful. It seems this is the new existence as they are telling me this series potentially has no end. It will not be 6 treatments and done like last time but more like a year plus depending on how well I tolerate it and how effective it is. Because my blood counts are low, they are sending me home with another drug, delivered by needle on the 2nd day into my stomach to force blood cells to multiply. Another horrendously expensive drug, but it seems to be helping so far. A side effect of the drug is bone pain in the sternum and long bones. Yay. Apparently Clariton works to minimize that effect, and they don't know why, but it thankfully did. Either that or I've gotten so used to bone pain that this new version is lost in everything else.

I want to share something special in closing. The timing of the chemo infusions allowed Juli and I to make a trip to Oregon for a wonderful family reunion and we spent an extra week with our daughter and son-in-law and our special granddaughters in Corvallis. We arrived home Saturday night and I was counting on going to church the next morning as I had missed the two previous weeks traveling, and because of chemo was going to miss the next two weeks. Juli and I were both physically exhausted and "beat up" after parking the 5th wheel and unloading essentials, dropping into bed well after midnight. We did not wake up, even with alarms, until 9:30 AM, which is when Divine Liturgy starts. I was devastated. I lay in bed thinking about trying to go late, but I knew I'd be really late, and in many Orthodox Churches, you should not be allowed to receive the body and blood of Christ if you arrive after the Gospel Reading which I was sure to miss at this point. I really wanted to receive His healing into my body with chemo again in two days. I stared at the ceiling depressed and was about to give up when suddenly this phrase came to me repeatedly: "...with faith and love draw near. ...with faith and love draw near....with faith and love draw near." I believe Christ Himself, Who has repeatedly shared His body and blood with me, was giving me permission to come late. It was a kindness I will never forget. I quickly dressed, drove to church and hobbled in on my cane. As I smelled the incense in the air I began to tear up and the tears continued through the remainder of the service as I listened to Fr Andrew speak the ancient words of St John Chrysostom's Divine Liturgy. I was still nervous that I would not be allowed to receive, but when Fr Andrew reverently carried the chalice out through the Holy Doors and said "In the fear of God and with faith and love draw near," he looked at me and nodded his head.

Juli, my Favorite, kisses the Blessing Cross being presented by Father Andrew

Pain and suffering is worth it if it causes us to draw near to Christ. Let it be so.