Clement Okoh is a cancer survivor, author, entrepreneur….and proud grandfather. Cancer Matters is sharing book excerpts of his personal journey, “OSONDU,", an inspiring story of hope.
Photo: Me with RN's Michaella Iacoboni and Manny Bravo.
Read part 1 here: PART 1, PART 2
--
OSONDU – Agency, Hope and Survival (part 3)
It’s nearly impossible to beat cancer without a sense of agency over your care, symptoms, and recovery.[1],[2] 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.”[3]
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.”[4]
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.
Acknowledgment of Caregivers
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.
THE BURDEN OF DEPENDENCE
Hospital and Rehab Experience
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?”[5] 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[6].
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 agriculture 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 the 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?
Psychological Burden of Dependence – Avoiding Helpers
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.
Emotional Burden of Dependence - My Birthday at Adventist–May 28
My birthday on May 28 fell two days after my blood transfusion[7]. 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.[8]
Nkonye and Celine draped my red University of Maryland hoodie over my chest, and the color reflected some life into my face.[9] 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 BACK
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.
Giving Back To Caregivers
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
Odiri
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)
YOU MUST HAVE SUPPORT
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.[10]
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.
CHALLENGES AND TOOLS—THE LANGUAGE OF CANCER
Progress, Agency, and De-Escalation
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 truly; 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 a 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.[11]
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.[12] 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.[13] 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.
[1] 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
[2].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
[3] Utpal Dholakia Ph.D.(https://www.psychologytoday.com/us/experts/utpal-dholakia-phd Accessed 12/17/2019),
[4] (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)
[5] An American his age would say colloquially: “Oh gosh, I don’t understand this. I don’t know how to deal with this. Hmm.”
[6] Nkonye is my daughter.
[7] 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.
[8] Emotional warmth
[9] Celine is one of my younger sisters
[10] “Emotions and Breast Cancer” ACS. Reproduced with Permission from the American Cancer Society. [2019] All Rights Reserved https://www.cancer.org/ cancer/breast-cancer/living-as-a-breast-cancer-survivor/emotions-and-breastcancer.html Accessed November 8, 2018.
[11] Cost per QALY measures the cost of treatment for one year of good health post treatment.
[12] “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.
[13] Olaptesed pegol is a PEGylated mirror-image L-oligonucleotide.