Getting on Lung Cancer Road
My friend, Bill Tom, was told he had lung cancer on September 26, 2018. It was a stage 4 melanoma. I began taking him for immunotherapy shortly thereafter. While doing so, I started thinking I had very similar conditions, shortness of breath, coughing more than usual, and a general feeling of tiredness. I decided to check into it. Following an October 19th CT scan, I found I also had an advanced stage lung cancer several places in my lungs. A needle biopsy on October 26th determined it to be Squamous Cell, aka non-small cell cancer.
With my Primary Care Physician’s help an oncologist was selected. He is Dr. Benjamin Herms and part of OHC, a Cincinnati based cancer treatment organization. OHC has an extension operation at Meadowview Regional Hospital in Maysville, Kentucky, about a half hour from my home.
My cousin, Anthony Silvey, agreed to accompany me so he would be informed should he need to act as my designated Health Care Power of Attorney. An interview with the oncologist came next followed by a PET scan. The cancer was found to be in both lungs and in lymph nodes between them. One mass was rather large in the lower right lung; another was not as big, the rest small in size.
Driving on Lung Cancer Road, Part 1
A few days before a meeting with my oncologist to decide between treatment and no-treatment, my daily Bible reading started with the Apocrypha Book of Sirach, Chapter 38. Two days before I had read two chapters instead of my normal one-chapter-a-day. Then this morning I read Chapter 38 while leaning strongly toward no-treatment. The verses from the Common English Bible are:
1Honor doctors for their services, since indeed the Lord created them. 2Healing comes from the Most High, and the king will reward them. 3The skill of doctors will make them eminent, and they will be admired in the presence of the great. 4The Lord created medicines out of the earth, and a sensible person won't ignore them.
I believe it was a sign from God to tip the scales in favor of treatment. At our next meeting on November 27 we decided on immunotherapy with OPDIVO. I then had infusions on December 4, 18. January 8, and 22, all with no ill effects. Following the fourth infusion was a CT scan to look for quantifiable results. The scan showed the small masses were getting smaller, the larger mass had not changed, and the largest mass was still getting bigger. The oncologist said this was not uncommon early in treatment.
My 5th treatment was on February 5, the 6th treatment on February 19 both with no ill effects. The 7th treatment was scheduled for March 5 but on Sunday, March 3 I had to get on the Pneumonia Detour.
The Pneumonia Detour
I became aware something was wrong while doing dishes after my March 3rd supper. My teeth started chattering, I got cold chills, and began to shake and shiver all over. The dishes didn’t get finished. Wrapped in a blanket, I forced myself to stay up until bedtime. Monday was spent trying to keep warm and doing only what had to be done. Tuesday, still feeling bad, Anthony drove us to my 7th cancer treatment. Everything was normal until my pre-infusion meeting with my doctor. He informed me the pre-infusion blood test showed I had pneumonia and he was sending me directly to the hospital Emergency Room for treatment.
With almost no knowledge of pneumonia and how serious it could be, I was not upset. One of the nurses got a wheelchair for me and I was driven to ER. An x-ray soon confirmed I had pneumonia in both lungs. That diagnosis and several other tests got me a bed-ride to the Intensive Care Unit.
Early on I received a Peripherally Inserted Central Catheter connecting a central arm vein to the outside world. It worked in both directions; for taking blood for tests or administering fluids and medications. It stayed with me until I left the hospital and was used almost continuously. I would have been a pincushion otherwise.
I was also interviewed for record purposes, including the contents of my living will and Health Care Power of Attorney documents. They asked what I would want if my heart stopped. I selected not to be resuscitated with the interviewer saying, “It will be up to God no matter what you choose.” I knew that to be true, so her words were comforting. She then attached a blue bracelet around my right arm. It read “DO NOT RESUSITATE.” That was when I finally realized pneumonia was far more serious then I had thought.
What was left of Tuesday, Tuesday night and most of Wednesday was a continual cycle of injected medications, drawing blood for tests, eating tasteless hospital meals, and sleeping.
On the Detour, Weird Wednesday
I need to write that throughout the happenings that follow I was not dreaming. I could open and close my eyes at will, sip water, call the nurse, and do bathroom chores but when I closed my eyes the happenings resumed where they left off.
Sometime Wednesday, I noticed that when I closed my eyes the entire area in my “view” was covered with constantly changing weird scenes. If I opened my eyes, I saw the room. When I closed my eyes, the scenes were back. They changed slowly as if they were a slide show but fast enough that I could make no sense of them. They were amazing. This is a list of those I remember.
1, There were completed jigsaw puzzles with constantly changing pictures.
2. Various sized Post-it notes of yellow, light yellow, and white with constantly (changing) rows of letters, sometimes moving around, spelling nothing.
3.There was a sequence of all black quilts, each having a different pattern.
4.There were menu styled pages with slowly changing entries.
5. There were calendars with dates out of order and moving around.
6. There were children’s blocks with faces always changing.
7. There were rows of lockers moving around in formation.
I slept some, I’m sure, but when I was awake I saw the room with my eyes open and a rerun of the slide show with my eyes closed.
I remembered it was Dad’s birthday. He is 115 by our calendar.
On the Detour, Thursday Begins
Then at about 5 AM Thursday morning, awake with eyes closed, a sign appeared with non-readable words and letters until it became a blank light-yellow page in front of me. Near the top left corner was one clear word. It was in block letters and was ALLEN and I heard a soft gentle voice say the word, my name, twice. It faded way and I slept.
Was God calling me as he called the Old Testament prophets? I now think so. I was too surprised to do anything then except be awed. What followed assures me God was telling me something that I don’t fully understand but feel duty bound to write down as best I can.
Thursday was another day of medications, tests, and hospital food, and dozing. Then sometime before midnight when I closed my eyes a new slide show began. I prefer to call this one a vision as it was clearly visible.
On the Detour, Thursday Night’s Vision
The vision was a series of both still and motion pictures I call views because they filled the entire area I could see.
Scene 1; I am inside and surrounded by a black empty skull. I could tell that by its rounded shape and its eye and nose holes. That scene faded.
Scene 2; The words, “JOHN 3:19,” appeared in large letters and faded quickly. My mind told me I misread it; that it had to be the familiar John 3:16.
Scene 3; The view was of possibly hundreds of what I first thought were miniscule blackbirds flying helter-skelter. Then I realized they were black knights on black horses scurrying around, filling the view. Then over time white knights on white horses began to appear and battle the black knights. The number of white knights grew as the number of black knights decreased. When the white knights covered the view, the scene faded away.
Scene 4; This view was black at first and then a white dot grew and became a single large white knight in a circle of glowing white. He was above and left of the center of the view. He faded away only to be replaced by another identical white knight which then faded away.
Scene 5; There were several circles of black knights on the left of my view and several circles of white knights on the right side. Each circle was made up of about four concentric rings of knights, perhaps as many as fifty knights in a circle. The circles of knights moved to the center and confronted each other. Then the circles broke apart and the view became individual knights fighting each other and rushing all around. It was a war. The war ended with black knight circles forming on the left guarding a black land on the right. After a bit, a white spot appeared in the black land. It grew and became a white knight. Other white knights appeared and soon several circles of white knights were in the black land. They approached the black knights and another war ensued. This time the war ended with circles of white knights guarding a white land.
Scene 6; As in scene 4 a glowing white knight appeared in the same spot. But this time he was joined by a second identical white knight toward the right of the view. They faded away.
Scene 7; The view was a silhouette side view of a regal head. It filled the viewing area. The background was black. The head was an off white. The head was outlined in gold.
Scene 8; The view was of a white blanket supported at its four corners by invisible supports. It was arranged so all I had to do was roll over and I would land safely in that white blanket.
I fell asleep until morning.
On the Detour, Friday, God Pitches In
All during the day Friday every time I closed my eyes there was a view of a pastel colored blanket hanging from a wall. Near the bottom it was shaped as a couch. It was a different pastel color each time.
Friday afternoon I looked up the Bible verse I had viewed Thursday. Both are copied here from the New International Version., I decided John 3:19 was truly the verse I saw.
John 3:19; And this is the condemnation, that light is come into the world, and men loved darkness rather than light, because their deeds were evil.
John 3:16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
Friday night when I decided to sleep, I closed my eyes and saw random patterns again. I was informed in my mind that the charity organization I am founding, Forward with Friends was going to be far greater in scope than I ever dared to imagine. There are many more addictions than drug addiction.
Exchanges about how Forward with Friends would function and be organized followed. The effort left me exhausted but certain of the following;
1. The Principles of the Scriptural Knowledge Institution founded by George Müller and documented in “The Autobiography of George Müller” should be used as a guide concerning gifts and finances.
2. I should bequeath Forward with Friends to an odd number of unrelated owners, five seemed best, but three worked, also.
3. The management team should be an odd number of unrelated people, five seemed best.
4. Major decisions should be agreed-to by a majority of the management team.
5. Owners could be and perhaps should be part of the management team.
6. One owner should be a recovering addict.
7. One of the management team should be a recovering addict.
8. Experience in legal, business, finances, and record keeping should be essential requirements among the management team.
9. The management team also should have a ‘doubting Thomas,’
10.Names for various positions came up but will not be disclosed here. Much needs to be done first.
11. Owners, management, and workers should all align with the 7 Heavenly Virtues and not be influenced by any of the 7 Deadly Sins.
12, Endorsement and non-financial support should be sought and would be given from many well-known personalities and also from some not-so-well known persons.
As my exhaustion mounted, I felt myself getting irritated and longing for sleep because ental effort was going on so long. I longed for sleep and then remembered that God promised never to leave me even though I was being overwhelmed beyound my strength, even though this time it was by God's own hand. With that thought, the views ended, some words of a Hymn “O Precious is the flow that makes me white as snow” filled my mind. The view changed to the same white blanket as in the vision, but with gold lace strips forming diamond patterns on it. I fell asleep.
On the Detour, Slowing Down for the Long Exit Ramp
There were no views when I woke up Saturday morning (March 9), just peace. When I closed my eyes there was only the normal darkness. My head was full of what had happened, and my cough seemed to be breaking up. My doctor convinced me I should spend some time rehabilitating and began making arrangements for me to go to the Maysville Nursing and Rehabilitation Facility (MNRF).
A short ambulance ride got me to a double room at MNRF. It was easy to settle in; all the bags of stuff went into a closet and I went into the empty bed. I was pretty much left alone to wait and think and do whatever I could to avoid the TV shows my roommate was watching.
What follows are enhancements of the scribbled Post-It notes I made at MNRF. They are in no particular order and some are of little consequence.
The Exit Ramp, Jumbled Memories
An Event; A four-line poem even came to mind while watching a TV shows program roommate had selected. Here it is.
With current TV
I’ve had a belly full.
If you keep watching
Your heart will get smelly full.
Some Questions; I did a lot of questioning. Why did this happen to me, both the pneumonia and the views? Did God cause or allow me to get pneumonia to see how I dealt with it? Did God cause or allow me to get pneumonia so I could see the views? Would the delay in my cancer therapy hurt that process?
Some consolation; “Patience, all in God’s time,” came to mind. Around three o’clock Saturday, this thought came to mind, “Obey His slightest command,” I promised to do my best at obeying both.
An Event; I finished “The Autobiography of George Müller” which I had started earlier. I resolved to follow his ideas as a model for Forward with Friends.
A Thought; When you are connected to an oxygen machine you cannot go as far as you might want, and you easily get tangled up in the 20 foot plastic oxygen tube.. Only God has an infinitely long connection you can’t get tangled up in.
Two Pastimes; I spent a lot of time playing Spider Solitaire and Mahjong Titans. If you care to undo your Spider Solitaire game you can undo it as far as you want and with patience always win. As of this writing I have lost 16 games out of nearly 800 and the losses all happened before I found out about “undo.”
A Thought; The mattresses in both facilities were lumpy and hard to sleep on. They reminded me that mine at home was beginning to show its age.
An Event; I made notes of things that needed to be done when I got home. I have done most of them.
An Event and A Thought; I made this while reading George Müller’s book “I went to ask a pastor for something, and he asked for a donation. I said no and he didn’t give. I asked twice more and left.” It seems to be a pronouncement on televangelists.
An Event; I did a lot of Physical and Occupational Therapy. It helped me recover from so much time in bed and allowed them to decide when I could go home. I enjoyed being with the therapists, the exercising, and the activities in the therapy room.
A Thought; I forget where I ran into by the Benham brothers’ book, Bold and Broken, but decided that it was required reading before my pneumonia detour.
A Thought; I think we would all be better off if we learned to laugh at ourselves and our ethnic idiosyncrasies instead of parading, demonstrating and insisting on laws making them unlawful. I cannot understand those who are so insistent that we all become exactly alike.
A Memory; Dr. Audrey Spencer, my Primary Care Physician, was Mom’s and Dad’s doctor some time ago. Once she walked almost a half-mile in deep snow to make a house call with Mom. I’m sure very few doctors today would do that. She also has an engineering degree as do I. Sometimes I think the engineering courses benefit her more than the medical ones,
Some Thoughts; Addictions are far more widespread than drugs. Being consumed by one or more of the seven deadly sins could be considered as being addicted to one or more of them. I am inclined to think sin, addiction, disease, and demon possessed are synonyms. Similarly, being consumed by one or more of the seven heavenly virtues could be considered as being addicted to one or more of them. I should consider two menus on the Home Page of the Forward with Friends web site; the seven virtues across the top and the seven sins across the bottom with the company name in between showing the way from below to above.
A Thought; When you are maybe in bed for the last time, you don’t ask the nurse the value of the Dow Jones Index.
A Feeling; I believe the Lord is closer to me when I am getting ready to sleep if I am in the fetal position and with all of me except my head under a blanket. I got this feeling at 3:15 AM on Saturday March 16, I now do so every time I intend to fall asleep.
The Exit Ramp, Exiting
Late in my second week at MNRF (the exit ramp) we agreed that I could go home the coming Monday replete with a walker, oxygen, a nebulizer, and a visit with a home health care provider. Monday came, Anthony came, and I was soon on my way home. As I rode home on Monday, March 25, I decided the pneumonia detour was part of God’s plan for me.
I never used the walker, stopped the oxygen after two weeks, turned down the home health care, and stoped the nebulizer after just over a month.
Back on Lung Cancer Road
I resumed my trip along Lung Cancer Road the day after I got home, March 26. It was my 7th treatment. There were no adverse effects. My 8th treatment was on April 9, again with no noticeable side effects. The 9th one was on April 23 followed by a CT scan on the 25th. I learned the CT scan results just before my 10th treatment on May 7. The smaller masses in both lungs are getting smaller. The masses in the lymph nodes between my lungs were stable. The not-so-good news was that the largest mass was about the same size but reshaped to act on my diaphragm potentially causing breathing problems. We decided to continue the OPDIVO infusion treatment at least until a third CT scan in about three months. I was advised to use the nebulizer more and also the Airlife incentive breathing device about ten times every hour. Currently I score just over 2000 ml pretty consistently.
Rest Stop; My Beliefs About the Thursday Vision
I will now make an attempt to write what I believe about the Thursday night vision. It may not be correct. One thing I am sure of is that the collaboration between John and God in writing Revelation could not have been closer, God providing words and John providing scroll, pen, ink, and fingers.
I believe scenes 1 through 3 symbolize my adult life, beginning with me surrounded by and in a black world of sin (the black skull scene). John 3:19 is cited to define my condition in that world. The battle between black knights and white knights depicts a struggle within me between good and evil with good eventually overcoming evil.
The two glowing white knights of Scene 4 represent God helping me in a big way. The first appearance represents the many events leading to meeting Corinne Medina. The second appearance represents God’s miracle; my instantaneous escape from alcoholism and its life-threatening hold on me at 5:00 AM on August 4, 2014.
Scene 5 depicts what has happened to the world during my lifetime, an obvious move toward evil.
Scene 6 tells me two miracles will occur almost simultaneously to turn the world back from its present evil ways. I believe one is Forward with Friends. I do not know what the other miracle will be.
Scene 7 tells me God reigns in the end.
Scene 8 tells me God will be there for us. Just think how much better this world will be when we all pull together to help all of us achieve a peaceful world in which all of us can prosper.
Driving on Lung Cancer Road, Part 2
My 11th treatment was on May 21, my 12th on June 4, my 13th on June 18. My increase in coughing is considered consistent with treatment, but I should report it if it gets worse. Possible use of steroids was mentioned as a possible change to my treatment.
My 14th treatment was on July 2. My 15th treatment was on July 16. All were uneventful. The 3rd CT was performed on July 23.
Well, I met with my cancer specialist on July 30 to learn what the CT scan showed. As I expected it showed the big mass is still growing and there are some new nodules. We concluded the immunotherapy is not working. Two options exist; do nothing and live a slow decline to the end of the road or switch to chemotherapy that might work. I opted to give chemotherapy a chance. Side effects are probable, fatigue and nausea being most likely. I had no treatment..
I had my first chemotherapy treatment on August 6. The drug is Gemcitabine (Gemzar) which is supposed to prevent cancer cells from dividing and growing and can cause them to shrink and die. Side effects, if any are supposed to show up the day after the infusion. On Wednesday, I saw no side effects, except perhaps being more tired.
I think I have not mentioned earlier that I started coughing a lot beginning just after the Pneumonia Detour. It got worse with time, approaching being constant. I also noticed a slight pain when I sat or moved in certain ways. The pain also got more obvious with time. I bring these symptoms up now because on Monday August 12, the cough had dramatically reduced in frequency and the pain seemed to have gone away. Were these fact or wishful thinking? I began looking forward to Tuesday's meeting with the specialists and my second chemo treatment.
August 13 came as did the meeting with the specialist and the treatment. She seemed very upbeat about the blood test results and my lack of side effects. She recommended continuing the treatment. She told me the next CT scan would be in about three months, possibly two. She also told me the tiredness would most likely get more pronounced with each treatment. Following the consultation, I had the treatment with no side effects other than being tired which got worse as the day wore on.
The treatment routine is two weeks on and one week off so I had another, the 3rd, on August 27. In my neeting with my Doctor I was told we will do another CT scan following the September 24 treatment. The September 3 treatment (my 4th) and the chat with the doctor were uneventful. The
The 5th treatment was on September 17, the 6th on September 24, the 7th on October 8 and the 8th on October 22. My CT scan was on October 23. A discussion of the CT scan was on October 29. The CT scan was inconclusive so we will continue the current Gemcitabine treatments. The meeting was followed with my 9th treatment.
OHC decided to end its extension activity in Maysville on October 29 so my treatments will now be in Cincinati.The first of these was on November 12. It was my 10th. I have next week off before resuming the two-on one-off cycle. The vacation is welcome as I feel very tired. My 11th treatment was on November 26, the 12th on December 3. I was also prescribed steroids to boost my energy and an antibiotic in case there are others infections. My 13th treatment was on December 17.
I decided during the trip for my December 17 treatment (the 13th) that the round trip to Cincinnati was too much. I met with Dr. Audrey Spencer, my family doctor, and we decided to transfer my treatment to the Cancer Center at Southern Ohio Medical Center. Dr. Spencer arranged the transfer of records nd scheduling me with a meeting with Nanda Methuku Monday December 23, the day before my 14th treatment which was to be followed by a CT Scan. Dr. Methuku wanted me to have the 14th treatment and the CT Scan except arrange for the CT Scan to be at SOMC. The CT Scan was done on December 30.
I will meet with Dr. Methuku and if all is well have my 15th treatment.
To be continued.