We all must face death. Every single one of us. Whether it’s our own imminent demise, the death of a family pet, or the death of a loved one — any way you look at it, death can’t be avoided. Yes, it’s a cliché that “death is part of being alive”. As anyone who has lost a loved one can attest, death changes everything. We are left with fading memories of what was once a living, breathing, person. For some, the void created from losing a loved one can be too much to bear. For the rest of us, we grieve, but we eventually move on with life, perhaps to face death again.
What I share below is a story about the smartest and bravest man I have ever known. My dad. In his own words he describes coming to terms with his deadly illness, his faith, and what he believed awaited him (and the rest of us) on the other side.
Sometime in May of 2017 I received news that my dad (Doug) was diagnosed with myelodysplastic syndrome (MDS) — a dysfunction of the bone marrow where abnormal and/or immature red and white blood cells are produced. Not quite leukemia, but close. Earlier in February of 2017 my dad noticed that he was becoming easily fatigued from even minor exertions. Something wasn’t right. Doctor’s visits and blood tests followed. Then came the MDS diagnosis. He was given six months to live. My dad didn’t despair or feel sorry for himself. He understood that few treatment options were available beyond chemotherapy, and blood and platelet transfusions. It didn’t seem fair. My dad was only 76 years old at the time and was not at all frail. He could easily live another 25 years. He decided to fight.
My dad and I were both passionately curious about our world. He was musically and artistically talented. I was not. We both at some point or another in our lives embraced religion, sang in church choirs, and volunteered our time to our communities. Over time we independently struggled with questions about organized religion and developed a cognitive dissonance about certain scriptural teachings and belief systems that no longer made sense to us. I left the church. Why is irrelevant. My dad remained with the church but would no longer stand at a pulpit and read scripture to the congregation. To him it was disingenuous. This experience with organized religion was part of my dad’s (and my own) struggle to understand our place in the world. I eventually came to believe that the universe was simply a cold, dark, vacuum. When we died, that was it. Oblivion. Anything else seemed improbable to me.
My dad began chemotherapy shortly after his MDS diagnosis. His blood counts slowly improved, but chemo was very tough on him, just as it is for others undergoing chemotherapy. Unfortunately, the MDS progressed into acute myeloid leukemia. Sometime in the fall of 2017 he was admitted to the hospital. While there, he developed a near-fatal bout of sepsis. The family was advised by doctors that there was nothing more they could do. His organs would begin shutting down, one by one. Death was imminent. Miraculously, my dad somehow overcame not one, but two such bouts of sepsis.
Perhaps it was the combination of his illness and these brushes with death that my dad became interested in quantum consciousness. Consciousness and how it emerges is still fiercely debated among scientists and philosophers. I don’t presume to understand any of it myself. We are all made of atoms, for sure. But beyond the level of the atom how could there be an emergent quantum nature of consciousness? The idea that a conscious, thinking, part of us could survive, intact, after our physical death fascinated my dad. Not necessarily a soul or a spirit, but something that could survive our physical death and move into a different dimension apart from our own. He spent his time reading widely about quantum physics and related topics. He sought a purpose for his existence, and a solution to his death.
In the years that passed after his initial MDS diagnosis, my dad went through several different chemotherapy trials. He even went into remission after one bout of sepsis. There were long interludes where he was in relatively good health, apparently defying the odds. Sadly, during the summer of 2019 the leukemia returned:
Hi,
Just wanted to update you guys on my chemo treatments. Mom and I saw my hematologist this morning and it appears some blasts are showing up in my blood work which indicates a return of the leukemia activity or, in other words, a relapse, which was bound to happen sooner or later, so the Azacytidine injections will be stopped. However, there is another drug “Cytarabine” being considered, possibly along with a trial drug known as AG-221 provided that a bone marrow test shows that I have a DNA mutation known as IDH2.
Had a relapse of my C-difficile infection last week and was given a blood transfusion on Wednesday, but along with a new regimen of Vancomycin I’m feeling better this week.
So, there it is for now and will update you when I know more!
Love, Dad
In late November 2019 my dad began to complain of headaches and paralysis, and my mom informed me of some troubling changes:
This past weekend has been a hard one for dad. He was running higher than normal temps — up to 38 C, headaches, and his left hand went numb, though he still had dexterity. We went to the cancer clinic today. After being examined, and seeing the vitals I had kept, he was given a cat scan of his brain. Thankfully, the scan was okay, but hard on both of us, wondering if he had a brain bleed. He also had another platelet transfusion. It seems those are happening every week. He is very tired, partly because of the drugs he gets with the transfusion, and an early busy day. And just the usual part of his disease. We see his doctor next Tuesday, to see how things are, and whether he will go through another regimen of chemo. He is amazing, a true fighter!
Mom
A later CT scan in early December 2019 did reveal a small brain bleed. The decision was made by my dad to terminate chemotherapy. No more interventions beyond blood transfusions to support blood and platelet counts:
Hi,
Just wanted to let you guys be aware of recent developments in my fight with Leukemia. I had developed a headache and numbness in my left arm a few weeks ago which prompted my caregivers to order an immediate CT scan, which in turn showed a small bleed just under the Dura (outer lining) of my brain. I’ve had a couple of scans since (yesterday was the latest) which showed a shrinkage or diminishing of the spot, and this coincides with my arm and hand returning to normal.
While my red and white cells, and hemoglobin levels are doing OK since my last round of chemo, the platelet counts continue to be a problem as they are not rebounding, thus requiring weekly platelet transfusions.
My doctor is concerned that the chemo treatments are not doing much good, and in fact are increasing my risk of bleeding, including a heightened risk of serious stroke. Discontinuing treatments would hopefully improve the platelet situation over time.
The last time we discontinued chemo was last year when the Azacitidine wasn’t working anymore, but I went for months without any treatment and the Leukemia remained in abeyance. So, I’ve opted to go this route again and we’ll see what happens. The hope is that without the treatments and its toxic side effects my quality of life will improve at least for the short term. Resuming treatment later with this particular chemo drug (Decitibine) due to worsening of the Leukemia is iffy as the supplier has provided it to date on compassionate grounds.
We do not know what the future holds for sure, but I’ve always known that chances of a permanent, complete, remission were slim to none. Your Mom and I have discussed this and are at peace with whatever happens. My solid belief is that we exist in a continuum and I will eventually move on into another state of being, whatever that may be. Your Mom carries the greater burden of survival, grieving, and loneliness which I would implore you to alleviate as best you can when the time comes.
Love you both,
Dad
On April 18th, 2020 my dad wrote a long, beautiful, letter to my mom, part of which is shared below:
So here we are today struggling with the biggest challenge of our life together, our world having been shaken and turned upside down by my illness. I have always loved you, but these last couple of years you have shown me a love and devotion beyond my expectations or comprehension. I am truly humbled by it and could never repay it unless by some miracle I were to get better. You know that I lost my faith for a while but have since recaptured it on a whole new comprehensive scientific/theological level. I see you and I in a new light, that our true selves, our souls or spirits, whatever you wish to call it, have become linked and merged by processes and forces of physics we can barely understand. We may be seldom aware of it, but I have seen glimpses and signs of it from time to time and it is wonderful! And that means there exists a link, a merger, that cannot be broken by the mere death of the physical body. So, remember if someday you are reading this when I am gone in body, that I still exist within you in actual spirit, even though you may not feel or be conscious of it. Think of it as an invisible beautiful golden tether that connects us forever.
Please don’t interpret every creak, noise, or bump in the night, or bird at the window or misplaced object as some spooky sign from me as I don’t hold such beliefs! I, through that golden tether, will be found in your heart and dreams when you choose to look for me, reassuring you that everything will be OK and with patience we’ll be reunited forever. In the meantime, I will do everything in my power to protect and comfort you until we are again together for eternity! Please be strong my darling loving wife and closest friend, for this too will pass and unimaginable joy and happiness will return!
Forever and eternally yours,
Doug
In the months following, my dad’s weekly blood count numbers were sent to me by my mom. I’m a scientist by profession. Data intrigues me. I was doing research, desperate to find some treatment, however misguided, that might help my dad live just a little bit longer. Time was running out:
Thanks for sending! Although a bit dated and focused on children with AML etc. It seems to show that my Dex steroid can’t help but to have had some positive effects on knocking down blasts, improving other counts while helping me feel better, to say nothing of controlling my gout attacks. The studies of high dose treatments of 30–50 mg a day for 3 to 5 days are interesting given that I only take 2–4 mg a day depending on my gout symptoms. Maybe I’ll ask my Doc to give it a shot LOL.
Love, Dad
A message from my mom April 30th, 2020:
Hi all. I’m writing to let you know that dad has talked to his nurse and doctor about his future. There is nothing earth-shaking. Nothing we haven’t discussed many times. But he has and is admitting he is tiring, and his energy level is waning. He told them he doesn’t really want to linger in bed if and when he can’t do much else. He asked if there was anything they could do to speed things up. No, they can’t, outside of getting MAID (Medical-Assistance-In-Dying), which is where they come in and help you die. I don’t think that is where he is headed. But he has been told that he may get an infection or have a stroke! And, of course, if he cannot get to the clinic anymore for transfusions, that will certainly hasten things. The nurse has told me that if I cannot handle things, he could be admitted to the hospital. No, he doesn’t want that.
He told them, and I know this, that I and his family members are what makes him happy. As long as he can enjoy us and the other things he enjoys, and is able to keep his faculties, he will keep trying.
On June 3rd, 2020 I sent the following message to my parents:
I’m so glad that I had the chance to be there with you both the last few occasions, to share some laughs, some memories, and some tears. I’m in awe of the strength, the courage, and the resilience you both have shown these past three years. Most people would fall apart under these circumstances. I’m not ready to lose my dad, but I know the inevitability of this disease. And it breaks my heart that I can’t do more. I love you both.
My dad responded the same day with the following message to me:
Let not your heart be broken. You have shown your love, concern, and desperation in searching for answers of which aren’t to be found today! Be content in knowing you tried hard and that this is a natural process.
Please do this for me, keep an open mind for further quantum science developments which may enhance our understanding of what this existence/reality truly is, that it isn’t simply a giant fluke that materialized out of nowhere! I’m not preaching theology here but rather an openness to considering new and exciting theories based on new discoveries which I know you would be naturally attracted to.
Love,
Dad
My dad’s condition quickly declined after this conversation. He was weakening by the day. Transfusions were no longer working. Besides, he no longer had the strength to travel to the clinic to receive them anyway.
By June 11th he developed paralysis once again. At first his eyes started to cross and he had difficulty focusing on his crossword puzzles. This was followed by a loss of control of his eyelids, and then the use of his left arm. By the next day he was bedridden. Was this another brain bleed? A stroke? Should we call the doctor? No. No more doctors he said. This is it. It’s time for me to go. I’m ready. His wish was to die at home, surrounded by family.
The next day, June 12th, my dad inexplicably developed an insatiable appetite. He couldn’t stop eating. He was chatty and in great spirits. We were astonished, and we thought that he might rally one more time! But it was not to be. During the night of June 12th my dad lost the ability to speak. He still responded to touch and could answer questions by squeezing your hand, but that too soon stopped. During the early morning of June 13th, 2020 his breathing become shallow and he was no longer conscious. The palliative nurse came to the house later that morning. Said it would be over in a few hours. Almost in defiance my dad lingered far longer than expected, but by that night his prolonged fight with leukemia finally ended, surrounded by the love of his family. Unafraid, he looked forward to his own death, believing that it was but a transition to a different state of being.
It has been six months since my dad passed away. I miss him a lot. In those six months I have spent a good bit of time reading about quantum mechanics and particle physics. Things like superposition, wave function, entanglement, decoherence, nonlocality, particles, fields, supersymmetry, bosons, leptons, fermions, quarks, and more. Truly amazing stuff. What little I have learned has convinced me that this universe is far stranger than imaginable. Just what is reality? How did our universe spring into existence from nothing? Is there an afterlife? Who knows? I don’t think anyone really does. I’m no longer arrogant enough to say with certainty that death is final, that this is all there is to our existence.
This is an uncomfortable place to be in as an objective scientist. I was trained to be a hardcore skeptic. Ruthless logic above all. Extraordinary claims require extraordinary evidence. Some explanations about quantum consciousness seem more like pseudoscience. But, as it turns out, we are still trapped in Plato’s cave, with much yet to learn about our world and our universe. About life and death. About consciousness itself. Shortly before he died, my dad asked me to keep an open mind about these things. He was among the smartest people I have ever known, and so I will keep an open mind. We all have individual beliefs about death and the afterlife. I will never disparage those beliefs that others hold about these topics. After all, who is right, and who is wrong? I suppose that, without good answers to these questions, we simply have to wait until our own deaths to find out.
But I do believe this: Somewhere out there is my quantum dad!
