friday, may 24, 2013.

Love notes pour in. We struggle with balancing our desire to respond to each and every person who reaches out to us with managing our practical responsibilities and our deep need to be as present as possible with each other, with Little Buddy, and with God. There are are a surprising many who share how their lives have also been touched by cancer -- some who are dealing with it right now, some whose children or parents or spouses have or have had it, and some who face it every day at work. They share their stories, their pain, their counsel. We continue to search our hearts, and keep asking the Lord daily if we are still where he wants us, wondering if or when that will change.

This is all so hard for me. The Music Man is really good at rolling with the punches, but as a person who thrives on routine and loves known quantities, all this fly-by-the-seat-of-your-pants, up-in-the-air-ed-ness is positively excruciating. I embrace the pain, not once but a thousand times, and I feel myself slowly learning patience, gratitude, trust, and surrender. It would be all too easy for me to rally my strength and take charge, to pretend to be in control of the uncontrollable. But are any of us ever really in control?

We spend each day on the edge of our seats, not unlike our friends and family. We, all of us, are anxious for answers, for information, for good news. Waiting and wondering is agonizing and exhausting day after day, week after week, and now month after month... but the Lord sustains us.

The good news is this: the Lord provides! I am now insured for roughly a year. This is an amazing development and a huge relief. And then there's the bad news: earlier this week my hCG rose sharply (hCG 5123). I can't begin to tell you how hard this was for us to hear. My response for the entire first day was, "how soon can I start chemo?!" But the thing is, even with my hCG up even higher still as of Friday afternoon (hCG 5537) to it's highest level since my diagnosis, chemo is honestly still not what we have a peace in our hearts about doing right now. We have a peace about waiting, though waiting is about as tough as it gets.

Friends accuse me of fearing chemo, but that's not it. The chemo which GTD protocols dictate I receive is a but single drug and a cake-walk compared to the multi-drug cocktails that you or your loved ones may have been subjected to. And I'd bet money it's a breeze compared to suffering through a partial pregnancy with an astronomical hCG that had me puking my guts out many, many times a day. A little fatigue, a little nausea, a little missing out on social events, possibly a little hair loss. And that guy with rheumatoid arthritis sitting in the cubicle next to you while you read this at work? He's been taking that same chemo drug they use to kill GTD, in the same dosage, except he's been on it for several years and will be for the foreseeable future. The diagnosis is a form of cancer and cancer is a huge deal, but the kind of chemo GTD responds to the best is just not a big deal (or so I'm told) -- it's like winning the chemo lottery. But if I'm healed, why poison my body? But then again, if I'm healed, why can't I prove it?

Regardless of how popular our decision isn't, following Christ where, or possibly just when, He leads us is all we are after. So here we are: God asked me if I would go to chemo and I said yes, and not only would I go but I would be grateful in the going. And I asked God if he would heal me and while it'd be a lot more comfortable to just leave what he told me between him and me for now, the truth is he told me I am healed, and everything inside me knows it to be true... everything, that is, except my hCG.

We wait instead of take action. We pray instead of try to fix it. We cry out instead of get angry. We choose to be grateful instead of wallow in self-pity. And we totally and completely lose it in a major way from time to time (okay, that one's just me). We let people into our lives instead of subtly sabotage intimacy because it's uncomfortable. We open up our hearts and home instead of isolate ourselves. We ask for help and let people love us instead of try to be self-sufficient. We pick up our instruments and write songs instead of refuse to feel how all of this really feels, even when it feels really ugly.

The days pass with waves of chaos and peace. I begin having contractions. Oddly, the essence of my situation is that I never finished giving birth. I cannot help but wonder what the outcome would have been had I been permitted to birth our little lost baby naturally, as was my wish. This may seem morbid to some, but I say it seems natural. What seems unnatural is having our baby fill my belly, going to sleep, and waking up hallow and empty, as if the little one we love so dearly never even existed. How can you grieve your loss rightly when they make it all just as if it never was? I awake broken-hearted and cry out deliriously over and over that they took our baby from me. I am inconsolable until they summon The Music Man in to comfort me in post-op, where even family is not permitted. Weeks later, after a great deal of effort and leveraging of legal loopholes, we receive our baby's remains from the funeral home. We bury her by only the light of the full moon under a small, flowering cherry tree. She and our tree sit on our balcony overlooking the lake. We will never see her smile or hear her laugh or hold her close, but she will nourish our tree and we will watch it grow and it will bloom soft and pink and lovely every April... and we will remember with joy that we had her with us for a while and we fought so hard to keep her and we loved her so fully.