Isaiah 41:10 New King James Version
10 Fear not, for I am with you; Be not dismayed, for I am your God.
I will strengthen you, Yes, I will help you,
I will uphold you with My righteous right hand.’
There are some things that we secretly fear and avoid talking or even thinking about. We fool ourselves into thinking that if we avoid thinking about it, it will somehow escape us. One of those fears, common to most humans, is the fear of excruciating pain. Severe and uncontrollable pain is high on our lists of fears. I have experienced the pain of kidney stones passing through the tubes of the urinary tract. The pain is such that there is no position that relieves the pain in any degree. Suffering pain when there is no possible relief is a fearful situation.
On the morning of March 28th, 2019, I was awakened at two o’clock in the morning with an urge to go to the bathroom. I lifted the covers and when I lifted my legs to get out of bed the pain in my thigh muscles was intense. I was in shock. What was going on? Where did this pain come from? I agonized to put my feet on the floor. With intense leg pain with each leg step I hobbled awkwardly to the toilet and relieved myself. The pain in my thighs was unrelenting as I painstakingly made my way back to bed.
Once supine and the muscles relaxed, the pain disappeared. I was confused. What had just happened? What could have caused this? I was thinking, no hoping, that with the pain gone it was gone for good. I prayed and thanked God for the relief and went off to sleep.
Two hours later, I awoke again and to my dismay, the pain returned to repeat the two o’clock episode. Now I began to worry. Is this some kind of disease I have? I questioned God. Is this going to be debilitating? Will I lose my ability to walk? Back in bed with muscles again relaxed, the pain again dissipated. I couldn’t sleep any more. Speculation dizzied my thoughts. Intense fear crept into me. I sure didn’t see this coming into my life.
After I painfully made my way to the kitchen and made breakfast, I cleared my head enough to try to understand what could be causing this. It was very strange as within a half hour of moving around, the pain relieved to a point of tolerance and within an hour was gone. This went on for a week.
The morning of April 4th, one week after the onset of the pain I remembered that a potential side effect of a statin medication was muscle pain. I had suffered a stroke three years prior and had been taking a statin medication since then without issues. I hoped that maybe that was the cause of my pain. I called my doctor and explained the pain and my theory about the statin drug. He suggested I stop the statin medication for a week and see what happens. I stopped taking the drug that evening.
A week passed with no relief. Each day the pain levels increased and soon included hips, arms, and shoulders along with the thighs. As each day wore on the pain subsided until it was gone by early afternoon only to return by two o’clock in the morning. By the second week the pain reached such a level that was simply intolerable. I awoke on April 11th and finally had my wife take me to emergency at the hospital.
By now the pain was so intense I could barely walk. I waddled into the emergency receiving area like I was about to collapse, awful pain with every step. I made it to the clerk at the desk. Explaining my experience, I was immediately seated in a wheelchair and after signing in whisked to a room in the bowls of the hospital’s emergency area.
Hurting severely, I stood up to get into the hospital bed. I grimaced holding back the scream that wanted so desperately to express my agonizing pain. As before, once supine on the bed the pain began to ease as my muscles relaxed. A nurse quickly arrived and started an IV and took some blood samples. Soon after a doctor came in and asked the standard questions.
“Once we have the blood work results, we will have a plan to take care of this. How do you feel now?” He asked.
“I am fine now, no pain. But if I try to flex a muscle, the pain returns.”
An hour passed and the nurse returned to inject medication into my IV. Within minutes I could flex my leg muscles without pain.
“Wow, that was quick. What just happened?” I asked.
When the doctor returned, he gave me his assessment.
“The blood work indicated severe inflammation of your circulatory system. (C-Reactive Protein levels that indicate inflammation are normally less than 0.5 mg/dl, mine was 138 mg/dl) But the rest of the results and the specific location of your pain indicate that you have Polymyalgia Rheumatica. It’s an autoimmune disease. We treat it with low dose steroids. You need to see your regular doctor in the next few days for ongoing treatment. I have prescribed 15 mg of Prednisone.”
I already had an appointment for my annual physical exam with Dr Sun on April 15th.
In his exam room he looked at me and said, “We are not doing your annual physical today. This report from the emergency room visit is serious. How are you feeling today?”
“After the emergency room visit, I was fine for a couple days, taking 15 mg of prednisone each morning. But yesterday and today, the pain is back as bad as before.” I answered.
The doctor increased my Prednisone to 20 mg and set my next appointment for a week after.
This time there was no significant reduction of pain. Dr. Sun increased the Prednisone to 60 mg. But he asked me if I had any headaches.
“Yes, I have had a couple and took some Tylenol, but they didn’t have much effect,” I responded.
“This diagnosis of Polymyalgia Rheumatica can have some very serious consequences. We must treat it aggressively. But you need to see a Rheumatologist as they are the specialists for this disease. I have taken the initiative to set up an appointment with Dr. Kim the day after tomorrow. The biggest risk is Temporal Giant Cell Arteritis, which if untreated leads to permanent blindness. I will get you an appointment with a Neuro-Ophthalmologist before you leave today. You will need a biopsy of your temporal artery to determine if you have Giant Cell Arteritis. But we must treat this as though you do have it. I will be prescribing higher doses of Prednisone until we have the biopsy results.”
This was a lot to take in. I left the doctor’s office with two appointments and a prescription for prednisone. For the next two days I took 30 mg of Prednisone in the morning and again at night. Finally, at those levels I was pain free.
Two days later I met with the rheumatologist, Dr. Kim. She had me change the dose and frequency to 60 mg in the morning only.
Two days later I had my appointment with the Neuro-Ophthalmologist for the temporal artery biopsy. When I awoke that morning, the pain was right back at its highest levels. Obviously, the morning only regime with the Prednisone wasn’t working.
I had inquired the previous day as to what was needed from me for the biopsy. Did I need someone to drive me home afterwards? How long would it take? Any special restrictions that I needed to consider?
The medical assistant said, “No need for someone to drive you. The biopsy procedure is very simple with only a local anesthetic. It takes about twenty minutes. You will be out of here in an hour at the most.”
I was also suffering at the time from an enlarged prostate. That necessitated frequent urination. I also was on a blood anti-coagulant medication. Unfortunately, with the speed of this biopsy I couldn’t stop it early enough to make a difference for the “minor” surgery for the biopsy. The doctors were not concerned.
When I arrived at the doctor’s office, I made it a point to visit the restroom to ensure that I wouldn’t need to use it during the procedure. I limped in agony into Dr. Edwards office and checked in at the reception desk. They said it would be a few minutes before I was called.
When my name was called, I was first ushered into a small room where a very preliminary eye exam. I wondered what that had to do with the biopsy. I was now led to the exam room that was outfitted like a typical eye examination room. Dr. Edwards arrived and after introductions he began to explain what was going to happen.
He began, “First I will give you a complete eye examination to assess the baseline health of your eyes. Then I will perform the biopsy of your right temporal artery. But before that we will have to decide as to the pathology lab to do the biopsy.”
The doctor continued with a detailed dissertation as to the risks of temporal giant cell arteritis and the permanent blindness it produces if untreated. The emphasis was on discovering if I had it or not. He explained that another Neuro-Ophthalmologist from Loma Linda Medical Center just happened to be in the office that day (she never ever came in on a Friday). He said that she could take the biopsy sample with her to her lab in Loma Linda and a superior pathology test result would result compared to a local lab’s test.
“So where shall I send the biopsy sample Allan?”
“Doctor, I prayed that you would be guided by God today to serve my best interest. Please, you make that decision.”
“It’s going to Loma Linda!” he instantly proclaimed.
After the eye exam, I was taken to the operating room and placed on the table. Every step still greeted me with excruciating pain. Again, as I lay down, I could relax my muscles and the pain subsided as the nurse prepared for biopsy surgery. I was a bit unnerved as I realized that the local anesthetic would allow me to be to be fully conscious and hear every word spoken and every noise that would emanate from the surgical procedure.
Now the anti-coagulation medication I still had in my system was about to make its presence known. The lidocaine injections were uneventful and painless. The surgery proceeded with the 2-inch-long incision and the bleeding commenced. It was a challenge for the surgeon to control the bleeding. I could hear the constant sizzle of the cauterizing used to stop the bleeding. Finally, after more than 20 minutes the bleeding was under control.
The search for the artery to be excised began. This too, was a challenge, as my low blood pressure seemed to cause the artery to collapse and hide from sight. The surgeon and his assistant struggled to find and secure the elusive vessel for excision.
I heard what to me sounded like a frantic interchange between doctor and nurse.
“There it is!”
“Oops it’s gone again!”
“No, there it is!”
“Oh no, it’s disappeared again.”
This struggle continued for thirty minutes until the doctor told the nurse to summon the specialist from Loma Linda for help.
The last words you want to hear while under the knife are “OOPS!” or “WOW!”
Momentarily the other doctor arrived on the scene. Since I had my eyes covered, I could only imagine the scene.
Dr Edwards explained the dilemma they were having and asked her what she thought. As she peered into the open incision on the side of my head, she exclaimed, “WOW! Never saw anything like that before!”
I was reeling in my thoughts. What in the world is going on? I sure hope they can figure this out! Again, and again I silently prayed for divine intervention.
The doctor quickly offered some guidance. Dr Edwards and his assistant finally isolated the artery. With the other doctor’s approval of the isolated sample, the vessel was tied off and excised.
Now two plus hours into the surgery, I was being sutured. By now my bladder was at the bursting point. I asked the doctor if he could please hurry as I really needed to use the restroom. He said he was going as fast as he could. A few minutes later he said we are far enough along for you to get up and we will finish when you get back.
Sutured and back on my painful feet again I was led to the restroom a few feet away from the operating room. But alas it was occupied! My last resort was the public restroom in the corridor. Fortuitously it was vacant, and I could at last relieve myself.
I returned to the operating room for the final stitching. Dr. Edwards suggested I go back to Prednisone 30 mg in the morning and 30 mg at night until I see Dr. Kim again.
I scheduled a follow-up visit with Dr. Edwards and painfully made my way to my car to return home. It was now well over two hours past the expected conclusion to the surgery.
Three days later I visited Dr. Kim again. This time my Prednisone was modified to 40 mg in the morning and 20 mg at night. This resulted in manageable and very low pain levels.
On May 2nd I visited Dr Sun for a checkup. He was pleased that the pain was very much under control.
One week later at Dr Edwards’ office the sutures were removed from the biopsy incision, but there was no news yet on the biopsy results.
Finally on May 18th the biopsy results came back. My phone rang and Dr. Edwards gave me the good news, “No Temporal Giant Cell Arteritis!” I was so relieved. Now all I had to do was find a more permanent solution to the Polymyalgia Rheumatica pain. Remaining much longer on such high doses of Prednisone was not good.
Two days later I met again for follow up with Dr, Sun.
On May 22nd Dr. Kim began to diminish the Prednisone, 40 mg in the morning and 10 mg at night.
In the days and weeks that followed, Dr Kim continued to explore the diagnosis to determine if other issues were in the mix all while slowly diminishing the steroid doses. I had neurological tests to rule out nerve damage in my legs and bone density scans to determine detrimental effects of the high steroid doses. Pain management is always tricky as the steroid doses decrease, because if too aggressive pain returns. The goal is to get the steroid to the lowest possible levels, typically 5 to 15 mg once per day.
May 31st it was reduced to 40 mg in the morning and 5 mg at night. By June 2nd I was at 40 mg in the morning only, with none at night. Three days later I dropped the morning dose to 35 mg.
On June 15th the Prednisone was down to 30 mg in the morning. Reductions continued until it was 25 mg on June 25th and 20 mg on June 28th when pain suddenly returned to my hands and shoulders. On the 30th I began taking Fosamax.
The pain in my joints began to return progressively getting worse each day. By July 7th with the reduction of Prednisone to 15 mg the pain was almost as high as when it all began 3 months before. But Dr. Kim was undeterred in getting me off the Prednisone.
I began taking Methotrexate tablets (4 tablets) on July 10th that resulted in a significant reduction in pain levels. On the 12th the Prednisone was reduced again to 10 mg. Again my pain levels jumped to high levels and the Methotrexate was increased (6 tablets) and Meloxicam was introduced. Immediately the pain levels began to drop again.
The Prednisone was dropped to 5 mg on the 20th and the pain returned but at a much slower amount. But by the 25th the pain had reached quite high prompting Dr, Kim to raise the Prednisone up to 10 mg.
On the 26th of July I received concerning news from my Urologist, Dr, Naitoh. He had been monitoring my PSA levels for ten years. It was very slowly getting higher. A few weeks prior I had my annual physical and urological tests. The doctor advised me that my PSA was suddenly at 8, almost double from the previous year. He wanted me to set up an appointment soon.
I met with Dr. Naitoh on the 30th and he advised me of his concerns with the PSA of 8. He suggested a needle biopsy of the prostate as soon as possible to assess the situation.
Meanwhile, the pain in my thighs, hips, arms, hands, neck and shoulders continued while on the 10 mg Prednisone. Levels of pain at 6, 7, and 8 on a scale of 1 to 10 were being experienced.
By August 7th, Dr. Kim stopped the Methotrexate tablets and I began 0.7 ml injections once a week. The pain persisted but at slightly lower levels. I visited my cardiologist for a heart test that proved excellent.
On August 27th I had an ultrasound on my legs with no blood clots discovered. The Methotrexate was increased to 0.8 ml on the 28th. Pain levels had eased to levels of 3 and 4.
On the 31st Carol and I went on vacation to Utah for a week, despite the consistent pain. We enjoyed our travels, but the walking was quite uncomfortable. By Thursday my Prednisone pills were running low and I had to reduce the dose from 15 mg to 10 mg. (Just prior to vacation the Prednisone doses were briefly raised to get me at pain levels that I could tolerate on vacation.)
By the last day of vacation, the pain in my legs and hip were so severe I needed a wheelchair to navigate the airport. Upon my return I made several doctor’s appointments to further asses my physical situation.
September 11th, I met with my orthopedic surgeon to assess my two knees that had partial knee replacements years prior. X-rays showed that my left knee had lost what cartilage had been left. Full knee replacement surgery was now the plan.
September 27th, I ceased Meloxicam but continued with the 0.8 ml Methotraxate weekly injections. The Prednisone was reduced to 7.5 mg. Since my return form vacation all my pain levels had reduced to levels of 1 to 3.
Early October the Methotrexate was increased to 0.9 ml. Surprisingly, there was a up tick in pain levels. I took a Meloxicam pill and the levels dropped again.
On the 25th I stopped Meloxicam and reduced the Prednisone to 5.0 mg. After three days the pain made a significant jump and I returned to 7.5 mg Prednisone.
At this point I was facing a full knee replacement and a prostate biopsy along with the pain management. The knee replacement was put off for the time being by having my knee drained of an accumulation of fluid on November 7th in hopes of easing that source of pain. That measure was successful.
I had an extensive prostate biopsy performed in the hospital on November 21st under full anesthesia. December 9th Carol and I met with Dr. Naitoh to review the biopsy results. He said that the biopsy identified two cancer sites within the prostate. However, the type of cancer was a very slow growing kind and normally the prognosis would recommend a watch and see regimen. However, the doctor shared his concern that the PSA level had increased drastically and now was almost at 9.0 from the 8 in April. He opined that there was something going on that was not normal. He recommended aggressive treatment.
After discussing the possible treatments and their side effects and long-term effects on my health and life, we decided on a treatment called CyberKnife. This was the least invasive and had the fewest side and long-term effects. The plan was set in motion. (The rest of this story can be found at “Cancer, Fear and Radiation” July 2023)
The dance of Prednisone juggling and pain management continued. November 16th to 6 mg, December 11th to 5 mg, and January 5th to 4 mg.
January 20th, I had my left knee full replacement surgery. From the 28th through February 10th the Prednisone was upped to 10 mg to assist with the knee replacement rehabilitation. On the 11th it was reduced to 6 mg.
The reductions continued with February 25th to 5 mg, March 12th to 4 mg, April 3rd to 3 mg, April 10th to 2 mg, April 27th to 1 mg and finally May 13th the Prednisone ceased.
March 28th to May 13th almost fourteen months and the pain was finally under control with the Methotrexate 1.0 ml weekly injections. I have been diagnosed with Rheumatoid Arthritis and visit with my rheumatologist on a quarterly schedule where my progress is monitored along with blood test to assess any changes that are needed with medications.
During 2020, in addition to the pain management, I had a successful total left knee replacement, successful spine surgery to open the clogged nerve passages between L3 and L4 vertebrae, and successful prostate cancer procedure with CyberKnife radiation. That procedure resulted in PSA levels being reduced from the high of 8.9 to 1.5 after four months and to 1.0 after seven months. Three years later it stood at 0.1.
All during this “adventure” I put my trust in the Lord my God to carry me through. I asked for the guidance of the Holy Spirit for each of my doctors as they plied their talent, skill and expertise to serve my needs such that the will of God for me would be realized. The whole of the experience has served to edify my faith and trust in my God and know He listens to my prayers and responds in a most blessed way.
COPYRIGHT © 2023 ALLAN EDWARD MUSTERER All Rights Reserved
TURNING POINTS
This experience was truly a journey of trust in the Lord. The countless moments of testing my resolve and attempting to understand each setback to my health and wellbeing was in the end a treasure. It was a turning point that gave me renewed faith and trust that God is with me and that with Him I can traverse challenges yet to be faced. It confirms my perspective that with the right attitude and sincere gratitude, adversity can be dealt with such that one will grow beyond all expectations leaving adversity and fear behind.
NOTE:
Polymyalgia rheumatica (PMR) is an inflammatory disorder that causes widespread aching, stiffness, and flu-like symptoms. It is more common in women than men and is seen more often in Caucasians than other races. It typically develops by age 70 and is rarely seen in people younger than 50. PMR may last from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis.
Giant cell arteritis (GCA), or temporal arteritis, is an inflammatory disease affecting the large blood vessels of the scalp, neck, and arms. Inflammation causes a narrowing or blockage of the blood vessels, which interrupts blood flow. The disease is commonly associated with polymyalgia rheumatica. If left untreated it can cause untreatable blindness.
This is one of the basic truths of grief. Unfortunately, many of those seeking to comfort grieving friends promote the lie of expecting and hoping for achieving “Closure”. Closure means finality. There is no finality to grieving. What there is is the possibility to grieve and at the same time find profound comfort and peace. And surprisingly actually find joy! When in the throws of grief one can find reasons for nurturing gratitude, joy is its harvest.
