friday, may 17, 2013.
What a wild ride. A week ago, we sit waiting for the doctor in an examination room at Seattle Cancer Care Alliance (SCCA) and I think to myself, "I am so fortunate to be one of what is probably only very few patients in this place who doesn't actually have cancer." Minutes later, the doctor, an oncologist and the leading expert in the Northwest on GTD says it: cancer. Cells that should not be in my body are growing rapidly, and if left unchecked can grow into my lungs, liver, brain, and… and there are only two ways to treat this form of cancer: chemotherapy and hysterectomy.
As I lie awake in bed late that night, Philippians chapter 2 pops into my head. I don't know what it says, it's just an address: go here. I don't. I roll over and go to sleep. In the morning, I remember and I reluctantly read. "If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose." My heart soars and I continue to read. "And being found in appearance as a man, he humbled himself and became obedient to death -- even death on a cross!" My heart sinks. I pretend it doesn't mean anything and I read on. "Therefore God exalted him to the highest place and gave Him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord..." A still, small voice somewhere inside asks me, "Am I your Lord? Are you willing to follow me to chemo?" I hesitate but surrender, "I am willing. You know I'd really rather not, but I will follow you there. I will trust you in this sickness and the suffering that is to come. I will go wherever you lead me… but I will pray for healing because, as you know, you've healed me before."
I know God can heal me. But will he? He has healed me before. I started having seizures at age 14. Just tiny ones. They were frequent for a few years and then they went away. Again at age 17, then gone. At age 21, then nothing. Then at 23, then not. Then again at 26, then… then a grand mal seizure at age 27, which is definitely not nothing. And suddenly I can no longer pretend that this thing that's been happening to me isn't really real anymore, and they stuff all kinds of pills down my throat, and the weight of the drugs covers me like a waterlogged sleeping bag and it suffocates me and all the good things in my life. But then one day I pray, like so many other days, and ask Jesus to heal my epilepsy, and he does… he heals me! It's October 20, 2006. I quit my pills cold turkey. I miss a few appointments with my neurologist. I don't really tell people. How do I say such things? How do I explain? How do I really know it's not just another mysteriously blank page in the notebook in which I log all the seizures I have, rating them in severity, and noting any remarkable occurrences or contributing factors? I mean, how do I know? Really know? Seven months later I confess. My neurologist scolds me. He hits me with a battery of seizure-inducing tests and comes up empty. He shakes my hand and says he hopes I never need to see him again. He has no proof I'm sick. I have no proof I'm well. We part ways. And now I find myself powerless against my body once again: cancer. It comes in waves: terror, tears, prayer, courage, gratitude, joy.
Saturday we say it too: cancer. And I become aware that cancer isn't the only cancer eating away at my insides. The idea has been growing in my mind for weeks, and the bitterness has been growing inside of me for years. Twenty-one years, actually, sparked at the age of 16 by the ruthless betrayal of a young, unseasoned youth pastor. It's easy to see the bitterness I struggle with these days, but suddenly a pattern emerges and I trace it back to it's origin. And that day a few months earlier when I offer forgiveness to my latest nemesis? That is the same day we conceive our child… the child which I was emptied of… the emptiness which was filled cancer... the cancer which helped me see my bitterness. Doesn't the bible say something somewhere about bitterness being like cancer to the body? I don't investigate. I repeatedly forgive and I long to not be bitter, but I know that I am, even if it's just a little. A question grows in my mind: if I had to choose between God healing my cancer and God healing my bitterness, which would I choose? Cancer cells can be eliminated with chemo, with surgery, with radiation, but what can eradicate my bitterness?
We have been praying fervently for months now. When I'm pregnant and bleeding we pray, "Lord, please don't let us have a miscarriage." When we know that something is wrong with our baby and we are on our way to an ultrasound we pray, "Lord, please let her have a heartbeat." When we find out that I must have surgery to remove all that is contained in my womb we pray, "Lord, please let them get all of it" because we have just learned what it will mean if they don't. When we find out that my hCG levels, which were rapidly decreasing (hCG 641,134… 73,006… 2,933…) begin to plateau (hCG 2,599), we pray, "Lord, please let my hCG keep going down." When we find out that my hCG is rapidly growing again (hCG up to 4,401 in a week… and then and even 5,300 in just two more days), we pray, "Lord, please don't let it be cancer." But it is.
So many prayers. Sunday we pray once again, but we are not the only ones. Message after message, people who love us are praying. People that don't pray are praying. People we don't know are praying. And we pray too. We pray alone. We pray together. We pray with our pastor and friends at church. We ask our dear friend to watch little Little Buddy for the afternoon and we get in our car and we drive to Tacoma to pray with more friends at their church. I walk in feeling sick. We pray for healing. We pray for my bitterness. God speaks to me so clearly and I am clearly changed. I walk out feeling well. We drive home.
My hCG, the hormone indicator used to measure the cancer's growth, more than doubled in the 9 days between my lowest level since the miscarriage (hcG 2,599) and my first appointment at SCCA. To my mind, knowing that my hCG was in the hundreds of thousands the day of my surgery, a mere 2,599 (or even 5,300) looks and feels pretty good, but the doctor doesn't agree. So you can imagine my delight when, after reaching out to all our many friends and family on Saturday and asking them to pray for an all out miracle, then making our way Sunday to not one but two churches to receive prayer for healing, Monday morning's blood draw comes back not up the expected 50% (projected hCG 7,950) but down, approximately 10% (hCG 4,800)! The nurse says in the meanest way that it doesn't mean anything and I still have to go to chemo -- I've already put it off far too long (the implication being that my foolishness may eventually cost me my life). I request an additional blood draw on Tuesday, but the nurse refuses, as if the call is hers to make. She has been cold and cruel since the moment I confess to her that I believe in God and I am praying for a miracle. She thinks I'm nuts. Her punishment is unjust and I would normally feel bitter, but I don't. What does it mean? I collect myself and respectfully ask the nurse for her blessing to have my hCG tested by our midwife, who is more than happy to oblige. Late that afternoon, we see a naturopathic oncologist at Bastyr who tells me that chemo is my best bet and really my only option.
Tuesday, the midwife draws my blood. She was with us when we birthed our first child and has become a dear friend by now, an anchor in the storm. We make our way to SCCA for a CT scan to see if the cancer has spread to my lungs. The blood results come back quickly: a decrease of 5% (hCG 4,545).
Wednesday, we rest, we juice, we play, we pray, we sing, we sauna, we kiss, we take deep breaths and slow steps. We are at peace. We cancel chemo and make an appointment to speak with the oncologist on Thursday to reassess the situation. I gaze into the tender eyes of my loving husband while I very happily nurse my little nursling, who is suddenly weaned by night (a miracle, in and of itself) and generously breastfed by day. I drink in his sweet smell while he nurses and caress his small body and thank God for one more day to be able to nourish and nurture him in this way. Will I still nurse him after tomorrow?
Thursday, I'm up at 6:00 am. I race to see our midwife, who draws dark blood from my weary body, and I run the sacred vials to the lab for processing: another modest decrease, down 3% (hCG 4,393). We meet with the oncologist, who is nonplussed with our decision, and is unsupportive at best. He is a leading expert on my condition. My CT scan shows my lungs are clear. He is almost angry. He dismisses the decline in my hCG as insignificant and merely due to fluctuation in blood volume. He says that, after surgery, in most cases the hCG goes all the way down back to zero, but in a few cases, and in my case, it starts to rise. "Once it starts to rise, the level will not go back down again on its own. Ever. There is zero chance without treatment." He pounds his clenched fist on the table with utter conviction as he declares each final word, "It. Does. Not. Happen."
We cannot explain it but The Music Man and I are in complete agreement and we refuse treatment, at least for the time being. I tell the doctor I need a little more time so see what's happening to me but he will not allow it. He is frustrated. I tell him I believe in God, and I believe God does miracles, and I know God can heal me, though I don't know if he will. He tries to sever the relationship. I tell him I will gladly go to chemo, when I am convinced that I must, and that if I go, I want him to be my doctor, and he welcomes me to return and we do not leave as enemies… but I am no longer in his care. I have been dismissed. I've been fired! I have no treatment scheduled, no appointments made, no labs ordered. We return home. It is nap time. While Little Buddy sleeps we make a nest out on the balcony and lounge in the sun, soaking in all the warm light. I open my bible to read, then get up to grab something from the kitchen. I am restless. The wind turns the pages and The Music Man picks it up and reads where his eyes first meet the page. "I am with you and will watch over you wherever you go… I will not leave you until I have done what I have promised you." (Genesis 28:15) The Music Man's eyes are closed when I return and I flop down irreverently beside him. I put my head on his shoulder and look down at the bible and read where my eyes first meet the page. "I am with you and will watch over you wherever you go… I will not leave you until I have done what I have promised you."
I know that sometimes God does all-out miracles, and I know that sometimes God doesn't stop things that are awful. Sometimes he allows cancer. Sometimes he allows miscarriage. Sometimes he allows really, really bad postpartum depression. Sometimes he allows you to be stuck in a job for years on end that feels like it's crushing your very soul. Sometimes he allows divorce and the devastation it brings. Sometimes he allows epilepsy and the mind-numbing drugs it demands. Sometimes he allows loss and pain and rejection and abuse. And I don't just mean theoretically, I mean in my life. In my life, at times, he has allowed these things. I do not believe God does these hurtful things, I simply believe he honors our choices -- not just ours but everyone's. That's the unsavory flip-side of the coin that is free will. His will is for it to be on earth as it is in heaven. There is no miscarriage in heaven. No cancer. No pain. No grief. No agony. No doubt. No divorce. No fear. If this is such an awful thing that is happening to us, why doesn't it feel like an awful thing? It feels incredibly hard, but I have incredible peace and am steady until evening, when the weight of it all sets in.
Little Buddy sleeps and we sit and talk. This is crazy! Are we crazy? What are we doing? What if awful scenario A happens? What if it's already awful scenario B and we just don't know it? What about insurance? Are we wasting our brief window of actually having insurance? I am willing to go to chemo -- but the bottom line is God flat out told me I was healed, and I believe him. What about my hCG level? It's down but it's not zero. What does that even mean? And you heard the doctor: there is one way to treat this, and if that doesn't work then I'll need a hysterectomy. The clock ticks. My biological clock ticks too. Little Buddy stirs and The Music Man goes to comfort him.
I breathe in this moment alone and I pray, "Dear Lord, WHAT. IS. GOING. ON?! First you ask me to follow you to chemo, then you tell me I'm healed. Which is it? Are we doing the right thing? I want to do what you want me to do… what do you want me to do?!" I listen and… silence. In a fit of desperation I close my eyes and play pin the tail on the donkey with my bible. It's juvenile, but I don't care. I am desperate. I open my bible like a dare and point my finger defiantly to the most unsuspecting verse on the page. "In his heart a man plans his course, but the Lord determines his steps." (Proverbs 16:9) I turn the pages to the left and strike again. "Then Elijah said to him, 'Stay here; the Lord has sent me to the Jordan.' And he replied, 'As surely as the Lord lives and as you live, I will not leave you.' So the two of them walked on." (2 Kings 2:6) I flip far to the right and strike a third time. "For I resolved to know nothing while I was with you except Jesus Christ and him crucified. I came to you in weakness and fear, and with much trembling… not with wise and persuasive words, but with a demonstration of the Spirit's power, so that your faith might not rest on men's wisdom, but on God's power." (1 Corinthians 2:2-5) I laugh. The Music Man returns and I show him and we laugh together. Our eyes fall a little lower on the page, to the verse we read on our wedding day: "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him…" (1 Corinthians 2:9)
So here we are. We are still asking, "Lord, do you want us to go to chemo?" We are still praying, "Lord, heal this cancer." Our amazing midwife is helping us keep a close watch on my hCG. We have no doctor, no plan, and no idea where tomorrow will lead us, but we are following where we feel the Lord leading us today. We know we might look like fools in the eyes of the world, in the eyes of doctors, and even in the eyes of family and friends… but that is a price we are willing to pay.