In the few months before Allistaire’s cancer came back, this is what the Lord was pressing on my heart: He needs some of His children to walk all the way, all the way down that black, deeply dark road. This God makes outrageous, audacious claims about Himself – crazy claims like that He turns darkness into light. My immediate response was, NO LORD! Not me, don’t let it be me. But to my dismay, I saw His point. God declares all sorts of things that require testimony to their truth. He claims the world is broken by sin – creation and our very hearts are rotting away because of sin, that rebellious sever that needs, oh so desperately, needs redemption, needs resurrection.
You know what, I never really wanted to need to bank on resurrection. I don’t want to need to put my hope out there – in eternity. I want what I want NOW! HERE! And oh I cannot begin to tell you how desperately I want my child – I want her! I want her! Let me keep her God! But it seems that I may not be able to.
As I extended my arm to hand the checker my card to pay for my coffee, my eyes rose and took in the name on her badge. “Allie.” One of the things I liked about the name Allistaire is that when she got older, if she wanted her friends to call her, “Alli,” it would be a lovely name still. It looks like she may not even reach her 4th birthday. I may never again see her with hair. Her chest may ever have these tubes hanging out of them. I think I’ve decided that she should be buried with Doggie, though I will miss them both desperately. But how could he not go with her?
When the Physician’s Assistant, Nathalie, and the attending doctor entered the room at the same time yesterday morning, I knew immediately that it was bad. “It’s bad, I know it’s bad. Just tell me.” There is .01% cancer showing up in her bone marrow. Point zero one percent, such a tiny, tiny amount and yet it seems likely, this cancer will be her demise, it will be the death of her. The doctor said that her only chance for survival at this point is to have another bone marrow transplant. They have already dumped the biggest poisons in her they can and it wasn’t enough. It may be an infinitesimally small amount, but it only takes time for it to grow and there is now, virtually nothing to stop it. She cannot have another transplant any less than six months from the last one. Her body could not handle it. The transplant itself would most likely kill her. That’s just over four months from now, such a long time in the land of this beastly cancer. There is the tiniest chance she could make it. Maybe five percent. They cut her immunosuppressant, Tacrolimus, in half and we will begin chemo next week. The chemo, Azacitidine, is a relatively well tolerated chemo with lower toxicity and does not tend to overly suppress blood counts. The idea is to ramp up her new immune system’s ability to fight the cancer cells, but this must be done carefully so that the Graft Versus Host doesn’t also overtake her. There is a ninety-five percent chance she will die. The doctor says that more than likely, she has six months or less.
This is the closest thing to torture I can imagine. It feels like be gouged by a knife over and over, like being kicked in the face incessantly. Honestly, the thought of this going on and on and on is beyond overwhelming. I can barely get my eyes to rise to see December and beyond in the far distance. I have no idea how I can keep going that long, and even then it may not be done. But, done, oh done, how I don’t want what “done,” means. How can I possibly stop walking forward if it means there is a chance to have our sweet girl with us? I have lived 36 hours so far with this reality. Step by step I will walk forward. God has reminded me over and over, you eat the manna, you devour what He has given you today to nourish you and sustain you. Eat the manna, the manna, the manna. I watch Solveig and Allistaire spaz out all over the apartment and hear their laughter in whatever room I dwell. Sometimes the manna is bittersweet on the tongue.
After Obliteride today, I lay facedown on the table, getting the complimentary massage. Such a strange thing to have some stranger grapple your flesh and to experience such vulnerability. So strange that there is a way in which someone else knows you better than you know your own self. They are familiar with all your anatomy and you lay there accepting this kindness from a stranger. As I lay there feeling my body being cared for in a way I could not possibly do for myself, I heard the band singing the refrain, “life goes on.” Over and over this line repeated and I suddenly remembered the last scene in Steel Magnolias where there is a big Easter party and relationships are growing and babies are being born and children are growing up – all without someone who had been core to their lives. The main character has died, but the lives of the rest go on, life goes on. There is a way in which I want it to be impossible for my life to go on without Allistaire, because I want it to be impossible for me to lose her. It is unbearable, so surely I should not have to bear it, right? The pain will last for so very long and yet it is almost frightening that one can keep living.
I do not know how I will bear it. I feel like I’m crumpling inside. There was an evening several months ago when I was waiting in the turn lane to turn left into the hospital. I waited for the oncoming traffic to clear and there was a moment when as I watched a car approaching that I thought it might just be easier to have it come barreling into Allistaire and I, that we could just be done with all this. You should have seen the look of terror on the doctor’s face when I relayed this to her the other day. But it’s true. Sometimes I just ache to be done, to be swept away from all this. A number of years ago, I remember expressing to my mom that I didn’t know why I had to keep living, why couldn’t I just be done and be in heaven? Why can’t I just be taken up into the presence of the Lord like Enoch? She reminded me that this life is not just about me and that there are those who do not yet know the Lord. It’s not just about me? It was so obvious I had utterly forgotten it, I was utterly blind to it.
Many times I have wondered why God would have things go the way they have. Why would we have good bone marrow results at Day +28 if just three weeks later it would all come crashing down? Why have a transplant at all if it was just going to fail? I don’t have answers to these questions. But I remember something my friend Madison said to me as she reflected on the months she spent in the hospital with her dear friend, Sarah, that died last year from cancer. “I have never known unconditional love like that,” she said. What is the value of such knowledge? What does loving and receiving love unconditionally do to one’s heart and life? Surely it has an impact on you like nothing else can? My friend Gayle’s elderly mom wonders why she is still alive and not yet with the Lord if her whole body is failing. How can we measure the treasures that are gained in these brutal days? How can I measure what the Lord is up to? How can I begin to imagine all the hearts and all the lives that are connected with our little finite lives? Who are we to matter so much? As I feel the length of the knife cut in again and I look up and see the eyes of my own Father – He could stop it and He doesn’t. It is an audacious claim to say that my suffering my be used to bless others, to have the blood of my heart be the fodder for life, that out of this small death, life might spring up – but this is my hope. This is why I yield. This is why I hope. In the few times I’ve been to church in the past five months, I have been shocked as I sing the words of the songs. “Take my life and let it be, consecrated Lord to thee.” So many things we sing to the Lord, but do we really know what we are saying? Am I really willing to hand over my life to this God who would ravage me? Am I really willing to accept whatever comes from His hand? We have these pretty ideas of what it is to have our lives turned over to God. We have these lives scripted out that we think would just be so lovely. But like making a covenant in marriage, in sickness and in health, for richer or poorer, when we commit our lives to God, when we hand ourselves over, we are really saying, “God, you get to decide. My life is no longer my own. It is yours. It is my living sacrifice and I lay it down, trusting you to act according to your perfect goodness.” I have had a lot of good in my life, ridiculous amounts of blessing for which I am immensely thankful. But these days are a good that I have a hard time seeing from my vantage point. But I have tasted too much of the beauty and goodness and spectacular glory of God, to turn away. I cannot get away from Him. And really, I don’t want to, really, I want to see this thing through, I want to see what’s on the other side of the veil. I want to behold with unveiled face, the fullness of His beauty.
So this road, this laceratingly dark road, I walk forward sustained from grace to grace, day after day of manna. I intend to take note of it all. I intend to bear witness to the days ahead. My eyes and heart are alert. And I pray that I may one day comfort others who walk this road with the same comfort with which I have been comforted. I am not alone on this road. It is a well-traveled road, far more trodden than any of us would like to think. We want to stay insulated and unaware of its presence, but it is there, and many of us will have to travel it, one way or another. I don’t know what other faces and hearts I will meet along the way, but how I long to be a means of God’s hands, His sustaining love to my fellow travelers.
2 Corinthians 1: 3-7
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.”