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About this blog: I was born and raised in Palo Alto, and graduated from Palo Alto High in 2013. For the lion's share of that time, I had a starry-eyed adoration for my hometown, and all its perks: top-notch schools, safe neighborhoods, and a boomi...  (More)

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Of Illness and Identity: A Woman's Battle With Acute Myelogenous Leukemia

Uploaded: Dec 18, 2017
In times of comfort and consistency, we humans are prone to believing something of a half-truth. Our interests and ambitions are seen clearly, focused onto a yet-unmaterialized future. That future approaches, as the toils and thoughts of past and present come to fruition. In these moments, a half-truth often arises, in which each of us is tempted to believe: “I’ve got it.”

But as Caren McNelly McCormack knows, “nobody ‘gets it.’” At least, not like that.

She learned this full truth, while shedding the lining of her mouth and esophagus during chemotherapy. She learned it while watching eight IV lines pump twenty-two medications (plus food) into her body. When McCormack’s life was put on hold to battle cancer in 2007, things became clear: nobody, not even her, “gets it” on their own.

Few people naturally consider their limits and fragility as life trots along its well-laid path. Rightfully so: could one imagine planning a career move, or the birth of a child, and each time immediately asking, “what life catastrophe might throw this entire blueprint out the window?” No one asks this question; and McCormack was no different in the Spring of 2007 when she and her husband, Jon, were working to adopt a young girl from Russia. By that time, McCormack had already fulfilled her fair share of personal dreams: she had a Master’s degree in Journalism from Northwestern; she founded The Kilgoris Project (an educational nonprofit in rural Kenya); she was writing a children’s book; and all the while, she was a devoted wife to Jon, and a loving mother to their first daughter. McCormack was also a devout Christian, and knew that none of those achievements truly defined her. Yet her passions still reflected, each in their own way, a different facet of her personhood.

Her family was the most meaningful reflection, and in 2007 that family was expanding to include its newest member. After several trips to and from Russia, and seven months of paperwork, they were ready to do so. Then, on her penultimate flight home from Russia, Caren McCormack started feeling ill.

“I was very sick on the plane, kind of flu-like symptoms… I didn’t really know what was going on, chalked it up to stress,” she recalled. Still, after two weeks and an innocuous doctor’s appointment, she flew once more to Russia to bring her new daughter home. After arriving back in the states, her body continued to feel strange; it was a nagging disruption, to a joyful and hard-fought new phase of life.

To McCormack’s internist, however, it seemed more than that. Concerned, “he sent in a blood test, thinking ‘wait a minute, this could be something else’… [later he sent me to an Oncologist, where I had a bone marrow biopsy.” In the meantime, between each test and its results, McCormack was still a busy professional, still a mother and a wife. She would ponder and worry, but the show would go on. Yet in truth, life’s disruptions have no discretion; hers was no different: “We got the results, and confirmed that I had AML – Acute Myelogenous Leukemia.”

AML, a rapidly-progressing blood cancer which originates in the bone marrow, is not like most cancers. There are no stages, there is no time for second opinions. Patients enter the hospital as soon as possible, or risk rapid deterioration. “In my case it was, ‘you need to go to the hospital right away.’ So, they gave me two days to get my affairs in order, and then you check into the hospital to start treatment.”

For a woman accustomed to setting the pace, that urgency was uncompromising. “You don’t have time… if you do not begin treatment, you will die,” McCormack noted. With no other choice, six weeks after that initial blood test, McCormack checked into Stanford Hospital. All the while, she tried to account for her husband, her career, and two young children – one of whom did not speak English – thinking, “wait, I can’t leave – I have a new daughter who needs me; we had planned to spend the summer bonding, and integrating her into the family. And what about my husband? What about work?”

But as so often happens with serious illness, McCormack’s accounting would narrow in focus. Her vision of the future may have blurred, but one fact was crystal-clear: “This real, horrible thought of ‘Oh my gosh, this is really serious. This is really unknown.’” With a diagnosis like AML, there existed one certainty – things would not be easy.

Doctors immediately began McCormack on intensive, inpatient chemotherapy: “That step is called Induction… the goal is to get the disease into remission, and then find out what the plan is.” With a laser focus, life’s nonessentials were checked at the door, and illness became the new context. However, if focus was narrowed contextually, it expanded temporally: “There’s that immediate piece of, OK let’s do what we can now,” but at the same time, “where does this go? What are the next few months like? The next year?”

Within that paradigm, two focal points held McCormack’s gaze. The first point was staying alive – as simple as that. The second concern, however, was more complex; it was one of family, purpose, and identity: “As a mom, one of the hardest times in the hospital was when it was around bedtime for my children, knowing I wasn’t there. I couldn’t read to them, I couldn’t kiss them before bed.” It was a concern which included her husband – now in charge of parenting, financial planning, and managing worried visitors: “He’s doing all of this in the context of, ‘I might lose my wife.’ Watching me in pain… it was a tough time [for him.” And of course, cancer also forced McCormack to wrestle with the fact that she no longer could fulfill her most cherished duties: “I was very much helpless. I couldn’t take care of my own children, or go outside [the hospital … It was hard to both ask for and accept as much help as we needed.”

After one month in the Induction period, McCormack had genetic testing – developed through research sponsored by the Leukemia and Lymphoma Society – done on her bone marrow. According to the results, chemotherapy alone would not work; she likely needed a bone marrow transplant. That was a harrowing prospect, as the McCormack’s had friends with a child who had recently relapsed into cancer after receiving one such transplant.

“We knew what that involved. It’s not an easy thing to go through. We had a very clear sense of the risk involved with that,” she remembered. But her own genetics were convicting – if chemotherapy alone would not work, what other choice did she have?
Fortunately, one of McCormack’s brothers was a perfect match for donation. Following a week of intense preparation, McCormack checked in once more to Stanford Hospital; this time around would be even more taxing: “The idea [of transplant is to destroy your immune system, give you new stem cells, then let those stem cells rebuild and fight the disease.” As a result, “you have to be in total isolation, because you’re so vulnerable."

Indeed, the physical and emotional toll for McCormack was tremendous. “I was very sick, very depleted, in isolation.” Her immune system was debilitated, and visitor restrictions were tightened: “Previously [during Induction, friends could come visit, we just said ‘please, nobody who’s sick.’ But now… if anyone in your household is sick, or could be sick, don’t come.” At a stage in life where the McCormacks and all their friends had small children, that restriction was yet another body blow. Everything normal seemed impossibly lost – how much could she claw back?

That question, oddly enough, never articulated in McCormack’s mind. Her focus was still monolithic – centered on two great pillars which stood, as the rest of life crumbled behind: survival, and generous love. Those two bastions, alike as they were in importance, manifested in starkly different ways.

As far as survival went, philosophical questions of fulfillment, joy, or the good life were “not even in the thought process.” Instead, survival reduced itself to cold, hard facts: “Transplant is all about watching your numbers… You have your transplant on Day One – which is your new life – and it goes day by day. You wait for those daily blood draws… and that’s how far you get.” So, on the one hand, life was about numbers – definable, easily measured; yet cold, and impalpable.

Love, on the other hand? In the battle against cancer, this front seemed wholly tangible. Amidst pain and disruption, the normalcy which McCormack longed for was, at times, found in moments of ironic beauty: “We had my older daughter’s sixth birthday party in [the isolation room. I couldn’t touch her or hold her. But at one point, we did all hide with Nerf guns, and shot the doctor when he came in.”

In this battle, allies came from all directions, expanding the definition of “family” beyond genes and geography. “Seeing people come around us, just overwhelmed us: bringing food, taking the kids to do something fun, staying with us for weeks to care for the kids.” While some cared for the kids, older friends from church – empty-nesters without sick children – came to visit. And even as The Kilgoris Project was expanding its community and educational work in Kenya, busy African partners upended their own normalcy in devotion to McCormack’s plight: “At one point, they called and said, ‘We’ve been up all night on a mountaintop praying for you.’ It was just knowing: Wow, these people are pulling for me.”

Little over a month after her transplant, McCormack was allowed to go home. With her new immune system still growing, however, she was effectively placed under quarantine for ninety days. “That period was so hard for me. The hospital was more intense and focused, but the quarantine was this realization of ‘I can’t do anything for anyone.’” All the tensions and insecurities which had surfaced as McCormack laid helpless in a hospital bed were magnified, as she now sat helpless in her own home. She still needed others to cook her food, boil her water, and drive her to daily hospital visits. Each day was a reminder of the life she once had, and had no longer.

“Because of my faith, I know my value is not tied to what I do; but that’s very different from not being able to do anything. It’s kind of something you know, but when you really have to live that, it was… challenging for me.” Mother, wife, writer, philanthropist – even if McCormack’s true value was in her Christian faith, these titles and accomplishments were important. As a result, a difficult question was raised; one which all people might do well to consider: “What is my value around here?”

The answer, of course, depends on one’s definition of “value,” or even, “here.” But that answer is undoubtedly critical, holding profound implications for individuals and communities alike: What is anyone’s value, once they can no longer contribute or stand out? Are we to evaluate humans as iPhones, balancing functional advantages with inevitable obsolescence? A provocative question, indeed – but one whose response reveals our most intimate depths of virtue and principle.

Regardless of response, the question of self-worth – especially amidst debilitating illness – is a humbling one. Though the healthy McCormack was strong and self-reliant, the sick McCormack was forced “to rely on other people for everything… I couldn’t peel an orange by myself.” Such a challenge might erode one’s self-worth, producing bitterness and despondency. But strangely, as cancer took everything normal from her, McCormack pulled back with something new: “A profound sense of gratitude – of just, being thankful.”

Indeed, she had many opportunities to be thankful moving forward. Progressing slowly but surely through her home quarantine, McCormack continued to gain strength and pass medical milestones. The continued treatment would leave its toll, but she persevered, and was deemed cancer-free in 2012. She also published her children’s book. Finally having life in addition to steadfast love, McCormack approached even vocation with a new and intense gratitude: working full-time with The Kilgoris Project, she led its expansion to ten schools, 1,300 students, and a staff of seventy in Kenya plus five in the US. She now oversees education, clean water, medical care, social business, and child nutrition initiatives among the Maasai people of rural Kenya. But the best part of it all? “I get to say, ‘Thank You’ a lot. We’re doing amazing work in Kenya… and it’s because of our great staff, and volunteers, and donors; and a lot of the fun of my job is getting to say, ‘Thank You.’”

This is not to say that McCormack looks back joyfully on her experience. The suffering was intense, and the fear was real. Even now, she battles two chronic illnesses resultant from her treatment. But after a battle with cancer which raised so many tensions and contradictions – of identity, value, and future – McCormack sees both the good and the bad as real, valid parts of the human experience. Her life, just like her illness, is a totality: a blend of victories and losses, joys and frustrations. Declining foolish optimism and hard-hearted pessimism, McCormack opts instead for a humble realism: “It’s an ongoing challenge for my faith and my character to say, ‘Today is enough for today; what I have is good, and right.’”

Today, McCormack continues to live, love, and find joy in what she does: “My colleagues [at The Kilgoris Project are more than colleagues… we call ourselves ‘The TKP Family.’ We are a part of each other’s lives.” She also continues to find what it means to live a full life, in the face of chronic illness: “Even now as I wrestle with my limitations, I don’t like it… but I have – through my faith and my husband, family, friends – a way to keep meeting those limitations in a different way.” And through all she has done and endured, McCormack still leans on faith, family, and friends to point her towards true value and purpose; in spite of her challenges and limitations – and in some ways, because of them – she has all these things, and more. She has them to the full.

To learn more about The Kigloris Project and McCormack's work, please visit their website: https://www.kilgoris.org/

Comments

 +   1 person likes this
Posted by LIsa Walton, a resident of Los Altos Hills,
on Dec 19, 2017 at 10:11 am

This is a beautiful piece written about an incredibly inspirational woman. I am in awe of all that she and her family has done. Her children are grounded, kind and lovely as well. Thank you for honoring Caren, her miraculous journey, and life's work.


 +   1 person likes this
Posted by Sandra, a resident of Southgate,
on Dec 20, 2017 at 1:15 pm

Another beautifully conceived and written article, Aldis. I appreciate that Caren was willing to share her story so transparently


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