It’s nearly impossible to beat cancer without a sense of agency over your care, symptoms, and recovery., Agency is a defining part of hope, perhaps the most essential part, and to quote Prof. Utpal Dholakia of Rice University,
“When the chips are down, and when we need a powerful shot of motivation to help us find new ways to reach our goal and push us forward towards its achievement, there is no substitute for hope.”
Andrew Kneier et al (Stanford Center for Integrative Medicine) also note that:
“Not surprisingly, patients who are hopeful and optimistic about the future course of events show a better adjustment to their illness than patients who are pessimistic. Some studies have also shown that optimism is associated with better medical outcomes.”
You just can’t underestimate the importance of agency, expressed through hope and optimism, in confronting cancer and its complications. It helps you survive and thrive.
And it was my normal life, reflected in the text messages from my most difficult days (Appendix D, OSONDU) that provided the strength to overcome my illness and complications. I am grateful the pain and other symptoms never disrupted my family relationships and faith, as these turned out to be the most important elements of my care. They provided me a vicarious sense of agency when I could least help myself.
My hospital and rehab center staff held me up as did my home-visit physical and occupational therapists. I also discovered I knew eleven multiple myeloma patients. So, I’ve had a very active support group without trying too hard, and it’s been great. This extended family of caregivers helped me interact positively to give back love.
My caregivers have been a blessing. Kind, loving and exceptional, they provided professional care and afforded me the sense of agency over my afflictions, treatment, and recovery. I humbly acknowledge everyone here, knowing I could never express my full gratitude.
I will discuss the contribution of caregivers along with other tools for cancer survival in a later blog.
I was generally upbeat, but occasionally I became overwhelmed by my helplessness when I couldn’t move, turn in bed, or have a bowel movement by myself. I was paralyzed from a spinal fracture before I arrived at Hopkins, and at 240 lbs., everything required help from two people. I had no balance. I couldn’t clean or dress myself, and I hated having to ask people for help with everything. It drove me to tears more than once, I was tired of burdening everyone with my needs. Sitting or standing was not even a dream.
I remember one evening in late May 2017, around my birthday, a young nurse, Joey, from West Africa was my nursing technician at Adventist Acute Rehab. He made sure I was comfortable and had taken my drugs on time. My brother, Joe, was also in the room. I needed an article of clothing from a closet on one side of my bed and disposable boxers from the other side of the bed. Both items were just out of my reach, so I needed help reaching them and putting them on.
I was completely dependent.
The helplessness was overpowering, and I couldn’t hold back the tears. I told Joe and Joey I was tired of imposing on everyone. I was tired; it was the last straw, and the tears flowed.
Joey said, “That’s why we are here, to help you.” Then in a very West African statement of empathy, added, “Heh, me, I don’t know this one again ooo. . . ennh?” For a second, he didn’t know what to do. Joey was about my children’s age and wasn’t sure how to deal with a father figure in the African context. My tears were confusing him.
My brother Joe leaned in and whispered, “And we have not said we won’t help you now.” Another wholly African expression of empathy, sympathy, and affection.
While the inability to fetch for myself had made me cry, Joe and Joey had made my soul weep. Their compassion was overpowering. Their love and warmth took away all the steel and resolve I had left, and I cried harder. I had to survive this. Somehow, I rebuilt my faith and reclaimed my resolve. I had to survive this and walk before Nkonye’s wedding in September.
It wasn’t that I didn’t want help; I understood that we all need help sometimes. I just wanted to be able to help myself, but I couldn’t, and I didn’t want to be the burden I had become. My cognition and intellect were fully recovered, and I could work, if I could only regain my strength and coordination.
But not now. Here at rehab, I could barely turn in my bed. I could do physics and design rockets and lasers, but I couldn’t even reach my pencil three feet away. I could put together a business plan for agric. and renewable energy to add $8k/capita to Kogi State, but right now, I couldn’t even reach my notebook or plug my computer into the wall four feet away. For Christ’s sake, I couldn’t even reach my underwear or make it to the bathroom that was ten feet away. And I was in severe pain. It was heartbreaking.
I needed a sense of agency over my ailment and recovery, and I just didn’t have it.
In my mind, I felt restricted, held down by an invisible force. It was tragic and dispiriting, and I had to scrape together courage to face each new day. My spirit was willing; my mind was ready, but my body was broken. I was a vegetable from the chest down, and I hated it. I felt helpless, stripped of my dignity. But what could I do?
I was reluctant to ask for any help, especially if it might not come. This caused psychological stress and made me less likely to seek assistance where I should. I canceled and rescheduled doctors’ appointments, and sometimes shifted schedules for key drugs. Anytime my request for assistance appeared too inconvenient, I found it distressing to repeat similar supplications.
My birthday on May 28 fell two days after my blood transfusion. I was still sick and listless, could hardly move or talk, and the video my family recorded of the event remains painful to watch. My family brought a birthday cake and set up some decorations to liven up the room. I was bed-bound, wore a white hospital gown with fading blue designs, and had no energy or color. The cold “white” room lighting also left no hiding place for warmth.
Nkonye and Celine draped my red University of Maryland hoodie over my chest, and the color reflected some life into my face. At least I could borrow some color for the evening.
I was exhausted, in pain, deep in contemplation, and I showed absolutely no energy or engagement. I didn’t even have enough energy to cut my soft birthday cake on a dinner plate. Nkonye had to help me hold the plate and push the knife.
It was painful and traumatic then, and the video remains heartbreaking to watch. My family and other caregivers, who were not too sad, sang “Happy Birthday.”
Outwardly, I was dead to the world. Inside, however, I was determined to live, get up, and walk away from this. The love of my family gave me all the reasons I needed.
This was my birthday, but the day I most looked like I would die. Pale and listless, I actually looked like I was lying in state. In the video, you can see how nervous my daughter and family were; although, some put on a brave face and sang happy birthday. The transfusion was a physical low. But this birthday was an emotional low. You could almost see a funeral in the video. It was the hardest of times, but it was still a happy birthday
Being able to give help to others even if you are barely able to help yourself is an incredible source of agency.
In the words of the Lord Jesus, that He said, “It is more blessed to give than to receive”. (Acts 20:35).
Deuteronomy 16:17 also says:
Every man shall give as he is able, according to the blessing of the LORD your God which He has given you.
We are exhorted to:
“Give freely to the world these gifts of love and compassion. Do not concern yourself with how much you receive in return, just know in your heart it will be returned.” (Steve Maraboli, Life, the Truth, and Being Free””)
“For it is in giving that we receive.” (St. Francis of Assisi)
And I have received miracles although I really had little more to give, than my heart and its content.
It’s very uplifting to give what little you have, and I summarize two occasions below.
Caregivers are indispensable and give you their empathy to survive. But they need your empathy as much as you have theirs. Don’t shut them out
I was fortunate to have the close support of a large and loving extended family, and this greatly helped my recovery during 2017-2018. It was also priceless in dealing with post-traumatic stress disorder (PTSD) in 2018. It has helped me stay positive and give back some of the love I am receiving. So positive that my niece Odiri (Toukpe’s mother) wrote:
“Dear Uncle Clement, good a.m. How are you? Wow!! I am so inspired by you. The way you stayed positive throughout your health ordeal and how you continue to radiate positive energy not just to you but to everyone. I am so proud of you and to be your niece I must tell you.”
Giving to Your Neighbor
Your neighbors are also vessels that can bless you with an opportunity to give.
82-yr-old Grandpa Roommate at Rehab
At my rehab facility, I shared a room with an 82-year-old grandpa who’d been falling and sustaining injuries. Including head injuries. His balance was progressively worsening, as was his memory, but he still wanted to help himself, and retain his independence and sense of agency. This drove his loving last-born son to tears because grandpa refused to ask anyone for help. He insisted on doing things the way he’d always done – and kept losing his balance, slipping, falling and sometimes injuring himself.
At times, he put on his trousers while standing, and slipped. Sometimes, he put on socks standing or stood up afterward and slipped.
The nurses and his son told grandpa to dress while seated on the bed, to prevent slips and falls, but he really didn’t want to.
Once, he hid behind his full-length locker door to wear his trousers but slipped because he had his dress socks on, banging head on closet shelves. Then, he fell in the bathroom, partly breaking his fall with the shower curtain. He also refused to call nurses to escort him to the bathroom
So, I started calling the nurses whenever he got up or looked ready. Morning, noon, middle of the night, I guess I just had to be a snitch and summon help. And they usually responded just before he got to the bathroom. He couldn’t quite figure out how they knew and suspected a silent alarm. I suppose I was quite silent. I could barely stand, and couldn’t walk him to the bathroom, but it felt extremely rewarding to be his sentinel. At least I could volunteer affection and compassion, wrapped in a simple gesture, and he stopped falling. I couldn’t give grandpa strength and I had no balance myself, but “a kind gesture can reach a wound that only compassion can heal.” (Steve Maraboli, Life, the Truth, and Being Free)
I have been blessed with an outstanding support system in my struggle, and every patient must have good support to survive and thrive. According to the American Cancer Society,
Everyone going through cancer needs support. And a lot of it! You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or one-on-one counselors. What’s best for you depends on your situation and personality. Some people feel safe in peer-support groups or education groups. Others would rather talk in an informal setting, such as church. Others may feel more at ease talking one-on-one with a trusted friend or counselor. Whatever your source of strength or comfort, make sure you have a place to go with your concerns. The cancer journey can feel very lonely. It’s not necessary or good for you to try to deal with everything on your own. And your friends and family may feel shut out if you don’t include them. Let them in, and let in anyone else who you feel may help. If you aren’t sure who can help, call your American Cancer Society at 1-800-227-2345, and we can put you in touch with a group or resource that may work for you.
Sadly, it’s not easy to build a good support system, and many cancer patients aren’t as fortunate as I’ve been. Whether it’s someone to accompany you to chemo and other treatment, a confidant or an exercise companion, every survivor needs help finding support from family, friends, and society at large.
Cancer is unique because of its nature and how we view and discuss it.
We fear cancer because it’s hard to prevent, very hard to cure, and is ruinously expensive to treat. We speak of it like a crusade, with the language of war.
In many cases, cancer is also difficult to detect, and that adds to our fear. Early detection improves cancer prognosis. Unfortunately, some cancers may have no symptoms, while others have symptoms that are hard to diagnose, and this worsens treatment outcomes
Our language reflects our fear and vulnerability to the personal, social, and financial ravages of the disease. But cancer survivors long for everyday conversation using simple, factual words. Even empathy, spoken true; and affection, tendered through mournful eyes, aren’t always uplifting.
To make things worse, people who are diagnosed with cancer often have trouble expressing their emotions.
The language of cancer and our general attitude could obstruct the sense of agency most needed for physical and psychological healing; it could magnify the helplessness.
So, we need to adopt new language that provides hope and a sense of self-relevance to the patient. We need to de-escalate language without misrepresenting prognosis. This is tough now but promises to soon get easier.
There is progress in immunotherapy research, and it’s encouraging. For example, my daratumumab immunotherapy achieved remission in a few months in combination with REVLIMID. In one of our lighter moments, my oncologist said I “picked a good time to have myeloma.”
There is also progress in genetic engineering-immunotherapy with the development of chimeric antigen receptor CAR T-cell technology. Here, doctors harvest the patient’s own immune T-cells and insert new genetic material, enabling the genetically engineered T-cells to identify cancer cells. Then they re-insert the engineered T-cells in the patient, where they continue to grow and multiply, killing cancer cells over time. CAR T-cell technology appears promising as a cure for multiple myeloma and possibly other diseases. Only time will tell, and we can only hope that new therapies won’t be more expensive when they become the treatment standards. Novartis’ CAR T-cell therapy for acute lymphoblastic leukemia in pediatric patients costs $475,000 per patient while offering a cost per quality-adjusted life-year, or cost per QALY, of $46,000.
Researchers are also evolving promising new approaches to the challenge of cancer metastasis, the process by which tumors spread to and colonize distant parts of the body. This is one of the most difficult aspects of cancer treatment.
Multiple myeloma is metastatic by nature. Myeloma cells originate in the bone marrow, depart for the bloodstream, and eventually return to the bones, where they form numerous colonies—hence the name multiple myeloma. The researchers employed olaptesed pegol, to bind stromal cell-derived factor-1 (SDF-1), thereby changing the bone marrow environment to make it less receptive for multiple myeloma cells and inhibiting disease progression. Multiple myeloma researchers have also identified a protein named “inhibitor of DNA binding 2” (ID2) as a potential drug target. ID2 helps suppress tumor cell growth and is significantly downregulated, or underproduced, in myeloma cells. Researchers are working on new therapies to restore the brakes on tumor cell proliferation by blocking proteins that depress ID2 production.
Finally, researchers are also working to make myeloma a preventable disease. They are identifying changes in immune cells within the bone marrow microenvironment at early stages of the disease, including the monoclonal gammopathy of undermined significance (MGUS) stage. They plan to target changes in these immune cells with immunotherapy to prevent or intercept disease progression.
I suspect the language will evolve and soften when cancers are more routinely preventable and curable, without post-treatment-disruption of the patient’s quality of life. And remission is definitely a disruption, as you don’t know when the zombie will get back up! It would help cancer discussion if most people you see with your cancer, or any cancer, actually improved more than you.
Over the long term, the prognosis appears decidedly better for a cure; the language will moderate, and cancer will emerge from that dark place in our psyche, tamed. Then our language will match the needs of the patient for agency and holistic recovery.
 In social science and philosophy, agency is the capacity of individuals to act independently and to make their own choices. Self-agency, also known as “personal agency” in psychology describes the power an individual has over their own life. Sense of agency refers to the feeling of control over actions and their consequences. When we act voluntarily, we tend not to feel as though outcomes simply happen to us. Rather we feel we are in charge. Agency refers to this feeling of being in the driving seat for our actions and is essential to help feel in control of our life
.James W. Moore, What Is the Sense of Agency and Why Does it Matter? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5002400/ Accessed 12/17/2019);
What is Self-Agency (Psychology) https://www.antidopamine.com/mens-health/psychology/what-is-self-agency/ Accessed 12/17/2019
 Utpal Dholakia Ph.D.(https://www.psychologytoday.com/us/experts/utpal-dholakia-phd Accessed 12/17/2019),
 (Coping with Cancer, Andrew Kneier, Ph.D. Ernest Rosenbaum, M.D. Isadora R. Rosenbaum, M.A. http://med.stanford.edu/survivingcancer/coping-with-cancer/coping-with-cancer.html Accessed 12/18/2019)
 An American his age would say colloquially: “Oh gosh, I don’t understand this. I don’t know how to deal with this. Hmm.”
 Nkonye is my daughter.
 After my relapse involving massive internal bleeding of 2 pints, a stroke, and brain swelling, I was severely weakened and needed a transfusion to perform therapy activities in rehab.
 Emotional warmth
 Celine is one of my younger sisters
 “Emotions and Breast Cancer” ACS. Reproduced with Permission from the American Cancer Society.  All Rights Reserved https://www.cancer.org/ cancer/breast-cancer/living-as-a-breast-cancer-survivor/emotions-and-breastcancer.html Accessed November 8, 2018.
 Cost per QALY measures the cost of a treatment for one year of good health post treatment.
 “Novel compound prevents metastasis of multiple myeloma in mouse studies.” Irene Ghobrial, MD et al, Dana-Farber’s Center for Hematologic Oncology, https://www.dana-farber.org/newsroom/news-releases/2014/novelcompound-prevents-metastasis-of-multiple-myeloma-in-mouse-studies/ Accessed February 11, 2019.
 Olaptesed pegol is a PEGylated mirror-image L-oligonucleotide.
I became a cancer survivor on Wednesday, March 15, 2017; the day I was diagnosed with multiple myeloma.
Cancer is so different from anything else. People rarely say, “You have cancer.” People say, “You’re diagnosed with cancer.” The statement is so pretentious and magisterial; it feels like the first stage of an inquisition. You will suffer, and sooner or later, you will confess to some ungodly transgression. Oh, and of course, you will die.
With its symptoms, diagnosis, pain, inevitable progression, and death, cancer occupies a dark place in our psyche.
It’s impossible to forget the day you find out. Time slows, and everything comes into sharp focus. You hear better, you see better, and you think more clearly and about fewer things. Everything is quieter, and nothing else matters.
Before cancer, your future is distant, fuzzy, and uncertain with numerous choices and possibilities. Cancer reduces your depth of field and puts everything in sharp focus.
From the day you find out, everyone in your family is terminally ill, as are all your friends. Not just because you’ll all die sometime, but none of your relationships will outlive the cancer, so they might as well have it. Diagnosis day is when you know how the end will come. You stop existing in the sea of other people and focus on your regrets. The end is no longer uncertain, and you count your life in months. You start consciously preparing for the end, and come to terms with your mortality.
Cancer is not as sudden as poison or a bullet. But unlike these, the cancer in your genes can also kill your innocent children and rob everyone of their love and empathy. With cancer, you have more time to contemplate the inevitable, but it’s definite, and the slow death allows you time to drag everyone through the misery.
That’s why cancer is so different.
The idea of cancer as a diagnosis, the manner of communicating it to patient and family, and the resigned acceptance and finality is the cross every cancer patient must bear. It’s the greatest load and dictates every thought, every action, every instant.
Cancer is grim, surreal, and final. But therein lies the hope that faith and the human spirit can deliver miracles.
The human spirit transcends all darkness, and faith intervenes with blessed miracles as people do survive cancer. Most cancer patients live with their affliction, even as it brings them to terms with their own mortality and forces their limited future into sharper focus. You become a cancer survivor the day you are diagnosed. It’s important to realize this and find the tools to preserve your happiness and to protect those around you. You must find ways to protect your quality of life. It will help you with that miracle called survival.
(The Next Series of Blogs Deal with Agency and Tools for Cancer Survival).
 Excerpt from: Clement I. Okoh, Ph.D., OSONDU – Running the Gauntlet to Stay Alive. Lulu Publishing, 2019. https://www.amazon.com/OSONDU-Running-Gauntlet-Stay-Alive/dp/1684708966/ref=sr_1_1? keywords=9781684708963&qid=1574882734&sr=8-1www.clementokoh.com
Welcome to one and all, and Happy New Year. I wish everyone a blessed 2020.
Over the next few months, I will write about numerous issues of interest to cancer survivors, caregivers, and the general public.
Much of the discussion will be guided by the recently published bestselling memoir of my miraculous cancer odyssey, “OSONDU – Running the Gauntlet to Stay Alive” (Lulu/Amazon published 11/19/2019, 12/02/2019).
I dedicated the book “OSONDU” to all caregivers. Without them, hope is an illusion.
Everyone is a potential caregiver. It’s very demanding and could happen entirely by accident. For help and useful information, please visit this caregiver community website: www.caregiveraction.org .
The book title ỌSỌNDU is part of an Igbo proverb: “Ọsọndu agwụ ike.” Translated it means, “One never tires of the race for life.” The word ọsọndu means “the race for life.” This book conveys a challenging but successful odyssey; I ran the gauntlet to stay alive. I ran ọsọndu.
Title of Cover Art: “Omu-Nne”
The cover art is titled: “Omu-Nne.” It means “children of the same mother,” in the sense “begotten of the same womb.” This is a stronger, closer, and more binding term than “siblings,” which is omu-nna or omunedi, “children of the same father,” especially in traditional, polygamous, or blended families.1 The art by Mexelina depicts three generations of women on the cover, representing three of my sisters, Mama-Jemine, Sister Marie, and Celine; my daughter, Nkonye, and my great-niece Toukpe. The two generations of men on the spine represent my brother, Joe, and my son, Edeki. The book cover acknowledges the monumental contribution of my mother’s daughters to my healing and recovery. I only ran ọsọndu successfully because of their care. Two years ago I had five years to live.2 Now, I could live another thirty. I survived several potentially fatal illnesses—cancer, stroke, PE, DVT, aortic aneurysm, blood poisoning, spinal fracture, and paralysis— only because of the loving care I received from my daughter, my three sisters, and my great-niece; and the critical role played by my son and brother.
On the Ides of March, 2017, I was diagnosed with incurable multiple myeloma (MM), one of the most highly metastatic of all cancers. , I suddenly had a life expectancy of five years, and my life changed forever
They diagnosed me with aggressive MM while working in Africa on sustainable agriculture and renewable energy—just months after receiving a perfect bill of health in the United States. I had gone to Nigeria with friends from Malaysia, Vietnam, China, and Norway to contribute technical skills, management, finance and contacts to renewable energy and agro-allied infrastructure. Unfortunately, I became too sick and had to leave.
On the day I was to travel to Johns Hopkins for cancer treatment, I fell in a Nigerian hospital, fractured my spine at a tumor, and was paralyzed. My family immediately transported me through mad Lagos traffic and to the United States. Once in the United States, surgeons removed the spinal tumor at Johns Hopkins Hospital and fused my spine to repair the fracture. I spent a month recovering from the surgery before leaving Hopkins for physical rehabilitation.
During treatment at Adventist HealthCare Rehabilitation (Adventist Rehab), I developed several potentially fatal complications. I had massive internal bleeding and lost two pints of blood. I suffered a stroke with brain swelling, and blood clots developed in my legs—a condition known as deep vein thrombosis (DVT). A blood clot traveled to my left lung, resulting in arterial blockage or pulmonary embolism (PE). I also had bacterial blood poisoning, and it was not clear whether my existing aortic aneurysm was static. I felt helpless, stripped of my dignity, and didn’t want to be the burden I thought I’d become.
My only daughter planned to wed in September 2017, and I was determined not to give her hand in marriage from a wheelchair. I was equally determined my ninety-five-year old mother would never see my grave; she had survived colon cancer at seventy-seven. This resolve gave me the courage to face each new day. My doctors thought I’d never walk again, but within four months, I was back on my feet. I survived all the complications and regained my ability to walk in August 2017. I walked my daughter down the aisle in September and savored our father-daughter dance.
One year after my initial diagnosis, on March 15, 2018, I achieved “complete response.” , After six months of chemotherapy and immunotherapy, I had a stem cell transplant in April 2018. By June 15, 2018, I had no trace of cancer, and, at the time of this writing, my cancer has not returned. I have completely overcome seven potentially fatal illnesses with excellent medical care, faith, and family love. Mine has been a miraculous odyssey.
My neurosurgeon, Dr. Daniel Sciubba, said I was blessed. My parish pastor, Fr. Joe Rogers, said I am a walking miracle. After reading this book, you may agree with them. I received a clear message from running this gauntlet, and I am determined to return to Africa to help deliver affordable, high-quality medical care. My efforts will use technology to lower costs and bypass the lack of infrastructure. I’ve been to hell and back, and this book is the story.
 Ides of March is March 15.
 “Narrow subset of cells is responsible for metastasis in multiple myeloma, study finds”, https://www.dana-farber.org/newsroom/news-releases/2014/narrowsubset-of-cells-is-responsible-for-metastasis-in-multiple-myeloma–study-finds/ Accessed February 11, 2019.
 “Complete Response” and “Remission”: “Complete response (CR) The disappearance of all signs of cancer in response to treatment. This does not always mean the cancer has been cured, but it is the best result that can be reported. CR is also called complete remission. The cancerous tumor is gone, leaving no evidence of disease.” https://www.cancer. gov/publications/dictionaries/cancer-terms/def/complete-response Accessed September 30, 2018,
 “Remission, on the other hand, means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In complete remission, all signs and symptoms of cancer have disappeared. If you remain in complete remission for 5 years or more, some doctors may say that you are cured.” https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis. Accessed September 30, 2018.
Welcome. My name is CLEMENT OKOH, author of OSONDU. I’m so happy to have you as a visitor to my blog about my new book. This project is very special to me, and I hope to share some of that excitement with you here.
I’ll be using this blog to interact with you about OSONDU, expanding on some of the topics in it and blogging on some of the ideas related to my book. This is a great place for you to get to know me, and I’m looking forward to getting to know you, too. What did you think of OSONDU? What questions do you have for me? How do you relate to my book?
I’ll be returning here frequently with new posts and responses to feedback from you. Until next time, tell me a little bit about yourself.