It’s funny what a little leukemia can teach you about trust, betrayal, and, yes, salvation.
The evidence was there all along, but for months professionals denied it.
A little leukemia began with chest pain, nighttime itching, and night sweats. Next came exhaustion and lymph swelling. Then, slow-healing skin lesions, vasculitis, and bruising. For seven months, doctors passed me around like a hot potato.
The older, white male doctors dismissively marginalized my symptoms. I was diagnosed with “health anxiety” for insisting my nighttime itching was abnormal. I was told my arm swelling was “subjective” (see above photo–about a dozen doctors since said the swelling was pretty objectively present). I had a doctor who looked like Santa Claus gaslighting me, denying I had a real vascular rash, denying I had any rash. Without examining me he said, “Aw, you’re not broken out.” He suggested I take a little white pill to help with the itching. I did some research. It was an anti-psychotic drug.
“Highly inappropriate” is what my next doctor (a female) called that man. By then, I had a meticulous photo-diary documenting symptoms. No question, there was a clinical issue, she said. She shook her head over at previous doctors’ notes (rather, lack of good notes). Several blood tests later, and I was diagnosed with a severe rare immune deficiency.
My results showed severe T cell deficiency, the doctor said. I had no idea what that meant then, but apparently, because of my symptoms it meant I needed a battery of tests, including a spinal tap and bone marrow biopsy. Many things could lead to a break in the T-cell system, and my doctor explained we were beginning a large “ruling out” process.
I had just left Constitutional Law class and was walking up steps to the fourth floor of my parking garage when I got the call with my results:
“The good news is, overall, your bone marrow has pretty normal cellularity. There’s just one thing. They did find some large cells with granules in them…they were abnormal looking and very large…and there were a lot of them….”
I could tell my doctor was nervous. She was talking all around the point.
“It’s okay, Dr. W-. I’m fine. At this point, we’re pretty much prepared for anything. You can tell me straight up. Do you think it’s some type of Leukemia, or what?”
“Well, so, yeah…there is a type of Leukemia called Large Granular Lymphocytic Leukemia [LGL Leukemia]. It’s slow-growing and there are a lot of new treatments out in the last few years. A lot of people with LGL Leukemia can live pretty normal life spans. But that’s why there’s been a little change. You’re going to be seeing hemoncology instead of benign hematology.”
Guess the “flow cytometry” (a test doctors use to identify cells) matched these cells to LGL leukemia. Even the most stoic person would likely be a little freaked out receiving news she has some rare form of leukemia. Strangely, I felt a surreal calmness flow over me like a wave. For all my Googling, I had never heard of LGL Leukemia before.* There I was, alone in the parking garage, digesting this tough news. But I wasn’t really alone. God was with me. Because He had always been faithful to me, I could easily put my trust in Him. I could be still and know. It was going to be okay. I ended the call and went on to my next class.
*The UVA doctor who discovered LGL Leukemia, Dr. Loughran, now says the disease is more of an immune system and bone marrow disorder than a typical leukemia. However, because of the monoclonal nature of cells found in the bone marrow, it is still classified as a “cancer.” Cellular clonality is a defining characteristic of cancer. A highly respected benign hematologist examining my blood cell slides said my cells were most certainly clonal and showed an aberration of the bone marrow (fitting leukemia); however, it is incredibly difficult to diagnose LGLL. Because my bone marrow infiltration is low (and because I am so “young” for this diagnosis), continued bone marrow biopsies will be part of the plan going forward. LGLL develops most commonly in persons with Rheumatoid Arthritis or other chronic long-term inflammation. Not coincidentally, it can show up with cutaneous (skin) manifestations. Here are some links for persons interested in learning more:
This link explains that while my immune system works with only 30% capacity, the 30% I have is too strong and overworked. This makes me a particular challenge (and unusual case) because treating the deficiency may overstimulate the already hyperresponsive reactions, and treating the hyperresponsive reactions may worsen the already-deficient cell lines.)
This link explains the disease manifests as a “blood disorder . . . typically detected when routine laboratory assessment shows abnormal blood counts associated with splenomegaly” (low blood counts in one or more cell lines and enlarged spleen–see below the manifestation of pain in my upper left quadrant).
This link explains LGLL is considered a leukemia though it is treated more like an autoimmune disease: “Although LGL leukemia is chronic and managed with immunosuppressant treatment, as in autoimmune disease, it is defined as a cancer because there is clonal expansion (the cells are copying themselves) of either T cells or NK cells. For the T-cell type, a TCR rearrangement test will confirm the clonal expansion. If the clonality is not present, then it is not officially LGL leukemia. [Where slides show clonality and TCR is negative, which commonly occurs with low infiltration and early development, there is a gray area. These patients are treated as if TCR was positive.]. In the NK-cell type, it is harder to show clonality, but it could be established if chromosomal abnormalities are present. The disease was named leukemia because the cells are clonal and are in the blood.”
Seven Months to Find ‘A Little Cancer’
In truth, I was surprised about the type of leukemia (or bone marrow disorder) I had, but I wasn’t surprised I had a blood disorder. I had suspected I might have a hematological issue for nearly five months. Just my doctors back then wouldn’t take me seriously (“I really think these stretches are going to work wonders for you.”). Hematological cancer, I was told, was one of the risks of my particular immune deficiency.
Idiopathic CD4+ Lymphocytopenia (from Wikipedia)
In contrast to the CD4+ cell depletion caused by HIV, in general, patients with idiopathic CD4 lymphocytopenia have a good prognosis. [ It does not appear to be caused by a transmissible agent, such as a virus.] The decline in CD4+ T-cells in patients with ICL is generally slower than that seen in HIV-infected patients. The major risk to people with ICL is unexpected infections, including cryptococcus, atypical mycobacterial and Pneumocystis jiroveci pneumonia (PCP). The condition may also resolve on its own.
ICL sometimes precedes and may be the first signal of several blood cancers. ICL patients have developed primary effusion lymphoma, primary leptomeningeal lymphoma, diffuse large cell lymphoma, MALT lymphoma, and Burkitt’s lymphoma, among others.
“So, I see you have a little cancer,” Doctors would say over the next several months. I’d just shrug and nod. Seems my bone marrow says so. The hemoncologist said the cells had to be present for at least six months to technically qualify as LGL. Seven months later, they’re still there.
I’d also been saying I had severe burning pain on my upper left side for months, too. I was told repeatedly the scans showed nothing. The first doctor dismissed this pain, too, “Maybe you’re just a little too tightly wound.”
Right. Because that made sense. Double steel needles in my arms, emergency room spinal tap without any numbing agent, hundreds of pokes and prods…never once did I flinch. But, yeah, I was just an overly sensitive, anxious woman, hyper-reacting to some indigestion, constipation, or something. (Pardon my sarcasm.)
Then, blood work showed raised liver enzymes. Another scan showed a left lobe liver lesion. An endoscopy later, doctors found the source of the pain–an inflamed pancreatic tumor in my stomach (benign, thank goodness).
Another real symptom with another real cause.
I had never been “anxious” about my health. If anything, I was a little too slack concerning my health. More of an “out of sight, out of mind,” or “if it ain’t broke, then don’t fix it” kind of person. More recently, I am the one reassuring doctors who had never seen cases like mine. “Really, guys. I’m doing great all things considered.” Most don’t find out they have this cell deficiency until hospitalized with some critical illness. So, yeah, I’m doing better than expected. No unreasonable worries.
If it’s crazy to think a guy’s invalidation of my clinical symptoms was unreasonable when that guy didn’t spend any sufficient time examining or talking to me, then call me crazy. Better to be a living hysteric than a dead liar, right?
Institutional Betrayal & Women’s Health
Of course, I hadn’t been unreasonable.
What is it that makes some doctors so jaded that they dismiss their patients instead of listening to them? Why do so many resort to excuses like “health anxiety” when answers aren’t common or easy? What has made the health industry so rushed that it diagnosis without thorough examination? How much malpractice could be avoided with better patient communication?
What had occurred with my earlier doctors was an all-too-common example of institutional betrayal:
The term “Institutional Betrayal” refers to wrongdoings perpetrated by an institution upon individuals dependent on that institution, including failure to prevent or respond supportively to wrongdoings by individuals (e.g. sexual assault) committed within the context of the institution…
Institutional Courage is the antidote to institutional betrayal. It includes institutional accountability and transparency, as when institutions conduct anonymous surveys of victimization within the institution: “Enabling the methodical collection of data — and encouraging their transparent distribution and study — will signal to campus communities across the country that institutional betrayal can be replaced by institutional courage.” (Freyd, 2014).
Seeking healthcare is an act of trust. Patients put their lives in their doctors’ hands, and they make themselves vulnerable before them. Doctors take an oath to make their patients’ welfare a priority. It is a dire thing for doctors to betray their patients’ trust. The consequences can, quite literally, be fatal.
Research shows vulnerable patients face a greater disparity of power and autonomy in their heath care choices. For centuries, outdated stereotypes plagued the medical profession, and male physicians misdiagnosed and mistreated women. For one, because women and men have different biology, they have different symptomology. The profession has become aware of these shortcomings, but disparities still exist. Women betrayed by the system have higher health risks.
In my case, institutional betrayal resulted in my early doctors missing severe immune deficiency and a developing, early-stage leukemia. Kind of a big deal. What does a “little bit of cancer” even mean? It means I’m not going to die tomorrow. But had I allowed the first doctors to convince me my symptoms were merely psychosomatic, I could have died from the missed diagnosis within several years’ time.
Had I allowed doctors’ betrayal of my trust to quit my pursuit for answers–and I nearly did–I wouldn’t be armed with the necessary knowledge to fight this and live a semi-normal life. My family, a huge support and encouragement, wouldn’t let me give up.
I found good, trustworthy healthcare, but not without becoming a better communicator.
After one disheartening doctor’s visit, the frustration finally got to me. I cried a good, long cry. I ugly cried. Then, I stopped feeling sorry for myself and moved into action. I researched and documented, located the authors of the best published research, wrote letters, and emailed these field experts. These were rock stars in their fields, and I was a nobody. I didn’t know they’d respond, but I was desperate. And I had a strong faith that maybe some graduate student research assistants might reach out, put me in touch with a number or something. After clicking send I closed my laptop, wiped my face, went for a walk.
Funny thing happened. A few hours later, I had email notifications on my phone. Three responses showed in my inbox. They weren’t from graduate students. They were from the rock-star researchers, themselves. Researchers from the nation’s top clinical healthcare centers. I exhaled the frustration and inhaled hope.
There’s a time to listen, and a time to talk. I had listened to my doctors without talking much–tried wet wrap therapies and every other remedy (save the anti-psychotic pills, which I trashed 🙂 ). No remedy helped because doctors were misdiagnosing me without communicating with me.
I absolutely had to listen to the professionals. But because these were issues of my health and I knew my body better than anyone, I also had a right to be part of the conversation. When someone finally stopped talking over me, let me talk, and started listening to and conversing with me, I got the right tests and more accurate diagnoses. And I got access to treatment.
Really, I guess I’m very lucky.
Even though my case is compounded by a severe immune deficiency (likely a contributory factor in my developing this leukemia), right now there’s not a lot of bone marrow infiltration. The plan is “watch and wait,” with continued bone marrow checks, blood draws, and body scans. The immune deficiency makes me a poor candidate for chemo. I’ve had HLA testing, and I’m on the bone marrow donor registry should my cell counts get so low that I need a transplant.
Turns out, a little bit of cancer is manageable, even if incurable. For the time being.
Life Lessons from Healthcare 101: Like a little leukemia, Institutional Betrayal is a silent killer.
There is no greater pain in this life, no ailment more debilitating, than having someone (or some entity) we would give our very life to protect sell us out.
Biblically, the betrayal of Jesus was one of institutional betrayal. Jesus knew one the closest to his heart would deliver him to his enemies, deliver him to death. While it would be insufficient to compare our sufferings to Christ’s, we who have been betrayed by our most loved can empathize with what Christ must have felt when he said, “He that dippeth his hand with me in the dish, the same shall betray me.”
Trust is precious and fragile. Every human relationship requires some degree of gifted trust. All social contracts are built on trust. When we trust others, we lower ourselves. We expose our throats believing the other party would never cut us at the jugular. We depend on them, and they on us. We expect mutual loyalty, mutual love, mutual fellowship, mutual support.
Trust takes years to build and minutes–seconds–to destroy. As the anecdote above shows, there are many ways in which persons and entities we depend on violate our trust:
- dismissing us when we present our real symptoms to them;
- invalidating our real and evidence-backed truths;
- divulging confidential information we share with them without our consent;
- silently complying with other internal members’ abuses of us by ignoring such acts of abuse;
- prescribing red-herring placebos for real conditions needing real medicines (e.g., telling a cancer patient she could be cured if she only had a more positive attitude, instead of administering chemotherapy…with a side dish of positivity 🙂 );
- shunning us and withholding care when we blow the whistle on malpractice;
- failing to blow the whistle on abusive acts they witness and remaining, instead, silently complicit (qui tacet consentire videtur–he who is silent is taken to agree);
- devaluing us as humans by aligning themselves with our abusers (multiplying other acts of betrayal and exacerbating resulting harm); and
- offering conditional care where care depends on the condition of our becoming the silent secret keepers of others’ misdeeds directed at us.
Any relationship, even those between acquaintances, suffers when trust is violated. However, where one party has unequal bargaining power in the social contract–where one is a child, a spouse, a student, a patient, a church congregant, a subordinate employee, a lower ranking military member–the harm of betrayal is longer lasting.
Research shows experiences of institutional betrayal harm a person’s health.
Institutional betrayal exacerbates trauma and results in increased post-traumatic stress. Moreover, institutional betrayal is harmful for the betrayed party’s physical health. Yes, physical health.
I mentioned my own rare T-cell immune system breakdown caused by, as my doctors at the National Institutes of Health told me, “too many hard hits to the immune system.” Coincidentally, recent studies found institutional betrayal can permanently alter the immune systems of teens and young adults–especially impairing T-cell function:
“Under chronic stress-induced neuroinflammatory conditions associated with depression, T cell responses may become maladaptive and can be involved in neurodegeneration.”
Another study found women who experienced trauma had decreased blood vessel flexibility: “The more trauma experienced, the more impaired their blood vessels.”
[So PTSD is associated with chronic inflammation and immune system hyperresponsiveness. Interesting. What leads to LGL Leukemia? Here’s a quote from one of the links about LGLL shared above: “It appears that a proinflammatory state drives the clonal expansion of T cells.” One need not be a medical doctor to analyze the clinical systems documented, apply them to the research, and make logical inferences.]
And a 10-year string of published studies concluded early traumatic experiences impacted later inflammatory responses (again, a function of T-cells), leading to increased immune system dysregulation and autoimmune disease development.
Institutions have a great responsibility to their individual members. Their responses and reactions to member-on-member abuses can either expedite or impede healing following disclosure. If they breach trust and deny support, their betrayals will likely cause serious emotional and physical harms. The harm to physical health can last for decades. Pretty serious stuff.
“Wise trust” can cure the disease of “blind trust” betrayal.
Please don’t misunderstand. I’m not attacking any particular institution. I found trustworthy doctors who communicated with me openly, and those doctors were right there in the same institution as the first. However, the fact is that had I remained in a doctor-patient relationship with a doctor who didn’t communicate clearly and openly with me, then the doctor couldn’t know the state of my health. I would have been foolish to continue trusting his recommendations for me.
Let me also be clear about this: institutions and individuals within them can betray others even when they mean well. Broken trust can be rebuilt, but only with “wise trust,” not “blind trust.” As said above, it is unwise–dangerous, really–to reenter personal or institutional relationships with “blind trust” after an experience of betrayal trauma. Ultimately, for our spiritual, psychological, and physical health, we must realize we can only fully trust God. People and human-formed institutions are fallible. All have a propensity for betrayal, especially when under excessive strain.
Wise trust allows for compassionate distrust during interim periods of trust building. We can be reasonably cautious, withhold trust, and still be loving, supportive, kind, communicative, and cooperative. Open, honest, two-way communication is where it starts. Both sides must be allowed to speak. Both sides must be willing to listen.
We can employ trust checks and use periodic assessments to measure risk of betrayal, weighing the positives against the negatives. Here is one such assessment:
In periods of strain or stress, how likely is the other party to do these?
- Connect with you?
- Work with you improve the situation?
- Appreciate you?
- Protect you?
- Shut down or shut you out?
- Get angry with you?
- Deceive you?
- Abuse or attack you?
If an institution or individual is more likely to respond in the latter four ways, then the risk of being betrayed again is high. In such cases, withholding trust may be necessary absent change of circumstance.
One doesn’t have to be bitter or begrudging to withhold trust. This is part of establishing healthy boundaries–and healthy boundaries are entirely biblical. Boundaries are lines of demarcation, allowing us to delineate between power over ourselves and power over others. Boundaries may seem selfish, but they allow us to take responsibility for our own conduct. God requires individual responsibility. He gave Adam and Eve boundaries in the book of Genesis, and we can see there were consequences for each individual when they failed to respect those boundaries.
Don’t despair, betrayal’s pain opens a path to spiritual peace: Sanctifying Grace.
In a sense, my medical journey was a deliverance of sorts. My journey led to open communication, accurate diagnosis, and finally, a manageable remedy. The betrayal was so insulting in dispensing wrong answers it resolved my determination to find the right answers. Betrayal is painful, but it doesn’t have to destroy us.
Experiencing institutional or interpersonal betrayal feels like walking in fire. At first, it burns. However, when you’re left in the furnace with nothing but God’s Word and His Holy Spirit, you learn to more fully depend on God alone.
This life, and the sufferings therein, are fleeting. We are born, and from that moment forward we begin to die. In a way, life itself is a chronic cancer leading to death. There is a cure for the cancer of life, and we can thrive despite institutional betrayal if choose to apply the cure.
We are not culpable for harms committed against us, but we are culpable for our reactions. We must examine ourselves closely. Anger can be channeled for Godly action, but ungodly anger can consume us. We must repent of ungodly anger. Ungodly anger conceives sin. The beautiful part is, when we’re alone in the fire, we have the clearest reception for communicating with God. God silences all static and background noise.
The pain of betrayal is like experiencing death. The pain is gut-wrenching, and with guttural cries we grieve. In that moment there is prevenient grace: we see clearly the contrast between dark and light. We desire the light, we desire relief, and we desire God.
When we see our own darkness more clearly, we feel regret, not for others’ deeds, but for our own. We want complete separation from that abhorrent darkness. It’s important to understand that darkness is from our human condition, NOT any abuse committed against us (beware the people who tell you otherwise).
In that moment, God offers us His pardoning grace. We can repent of any sins on our soul. God has no conditions attached. He gifts us His forgiveness, and He converts our soul. He opens the pathway to relief.
“God was in Christ, reconciling the world unto himself, not imputing their trespasses unto them; and hath committed unto us the word of reconciliation.”
2 Corinthians 5:19
“But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us.”
Justified, the forging of our soul to the Spirit is in-progress. Full restoration is in God’s sanctifying grace. God’s Spirit fills the deep void left by betrayal. With that Spirit inside of us, peace replaces pain. The more external forces turn up the heat, the more hammers that strike us, the more our soul is forged to the Spirit. As Ephesians 2 says:
2 And you hath he quickened, who were dead in trespasses and sins;
2 Wherein in time past ye walked according to the course of this world, according to the prince of the power of the air, the spirit that now worketh in the children of disobedience:
3 Among whom also we all had our conversation in times past in the lusts of our flesh, fulfilling the desires of the flesh and of the mind; and were by nature the children of wrath, even as others.
4 But God, who is rich in mercy, for his great love wherewith he loved us,
5 Even when we were dead in sins, hath quickened us together with Christ, (by grace ye are saved;)
6 And hath raised us up together, and made us sit together in heavenly places in Christ Jesus:
7 That in the ages to come he might shew the exceeding riches of his grace in his kindness toward us through Christ Jesus.
8 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God…
This is beautifully freeing. God’s Spirit recrystallizes us. We are beauty in ashes–remade right there among the flames. Our new beings are unscorched, strong steel. We realize no institution owns the copyright on God, and our access to Him does not depend on our being a secret keeper of ungodly deeds.
While Godly fellowship is best and is edifying to our souls, being betrayed is not edifying. We must preserve the Spirit within. Guard our hearts. With a direct line to God, we are not without hope when institutions betray, shut out, proffer conditions, or shun. We are not beholden to any institutional social contract. God is Free Domain, and it is in the fire where our relationship with God becomes primary to all else in this present life.
There is no glass from which to behold any other face but the truth–there is no obligation to perform for human expectation, no false fronts. The Spirit puts within us a pure desire to please God. It is that desire that motivates every action and every sacrifice, not any social code, not any tradition.
(Then, for my friends out there from legalistic backgrounds, whether you wear nail polish, drive a fancy car, wear earrings, live in a mansion, wear a ring, cut or dye your hair, go to concerts, wear platform heels, wear a fancy watch–or don’t–it will be because God, not some invisible social pressure, directed your expression of holiness. And that, that pure and sincere authenticity is true holiness. That is the pure and sincere holiness that is pleasing to God.)
In my experience, each betrayal only made me stronger. Certainly, betrayal still hurts, and betrayal isn’t righteous or good. Yet, in a way, I am thankful. Alone, I am weak. I am flawed. I am imperfect. Every time I was put in a fiery furnace and left there alone, flames would have consumed me had it not been for God. With God, I buried myself more in the Word and in prayer. I emerged stronger, more committed, and fiercely determined. Without the fire of betrayal, my commitment to and trust in God wouldn’t be so pure, unadulterated by social expectation.
Our One Assurance: God will never betray us and He will reconcile what we cannot.
When we have sanctifying grace, love overwhelms anger. We are imperfect humans, but we are made perfect in Him.
According to the Bible, no person made perfect by sanctifying grace is below nor above any other. Every person made perfect shall be as his master. The disciple and master share equal rank under God’s command. We can pursue reconciliation with our institutions when those institutions are open to communicating with us on equal terms, respecting us, our health, our person. Healthy boundaries aren’t yielded in reconciliation, and when God restores the power scales, we can apply wise trust and rebuild with a stronger, steadier foundation.
“The disciple is not above his master: but every one that is perfect shall be as his master.”
Luke 6: 39
“The disciple is not above his master, nor the servant above his lord. It is enough for the disciple that he be as his master, and the servant as his lord.”
Matthew 10: 24-25
When we assert ourselves as equal stakeholders, we can expect to face some enemy fire. Usually, we aren’t even aware of the rumors, misunderstandings, and miscommunications stirred about us. We merely sense the results. Some people will find fault however we speak based on incomplete information (like my first doctors). Let them. Pray for those people.
Maybe they want to control your voice. Maybe they don’t like the truth God called you to speak. Maybe they were given incomplete information from others. Maybe there’s some revelation beyond your knowledge they fear being exposed. Maybe they fear the opinion of others. Who knows? That’s not your fight. That’s not God.
All you can do is hold fast to God, communicate with that rock star named Jesus, research the Bible, act on wise trust, and pray for those who spend more time finding fault with others than getting to know the others they fault. Pray they find the same Spirit you have found.
Isn’t it wonderful that we have a God to cling to when others forsake us? Isn’t it comforting that when others won’t communicate with us directly, God always will? Isn’t it calming to our souls that when others misjudge us, God will be our final judge in the light of truth?
Isn’t it settling to our step that when others try to distract us from the work God has called us to do, He is our GPS system who helps us stay His course? Isn’t there power in the revelation that, when filled with the Holy Spirit, we can pass through any fire in this life in confidence, knowing the flames cannot touch us, knowing we will emerge stronger with God.
Even with a little leukemia, I am so very blessed and full of joy. More importantly, I trust God. The walk with Him is one of love and light.
This is a beautiful thing to share, and as long as God gives me a life to live, I’ll share it. It seems much more important and much realer than sharing pictures of food on our plates, political memes, perfectly cropped and filtered photos of our families, funny dog videos, or anything else (I do enjoy those dog videos, though 🙂 ).
Yes, friends, trials and tribulations remain. But by sanctifying grace our immune deficiency is cured, and no betrayal nor attack can penetrate our hearts.
More Reading at The Lesser Lights: