Sabbath rest now. That is what He is telling me. You have what you need and you are able to rest, right now, right here. The wind whirls and shudders and shakes and the sky is storming black and angry and I want to scream back in utter fury – where is your rest? Do you see what is happening here God?! Do you see me? Do you hear me? But I am spent. I do not scream. I can barely speak. I sit. I crumple.
As of this evening, her eyes have taken on red half moons that encircle the lower lids of her eyes. Tonight she looks more like a cancer patient. She stood and walked early this evening for the first time in a week. She awoke early from her nap, called her nurse by pushing the big red button and then walked to the door to see if she was coming. I was astounded and excited. Maybe an hour later, Ange, the fellow came by to give us the MRI results from today. I’m realizing now I haven’t shared the most recent development. On Friday, during our radiation consultation with Dr. Ermoian, Allistaire complained about pain in her right leg (it was in her left leg that she originally had pain and where the biopsies were taken). We assumed it was perhaps because her leg had gone to sleep while she lay in my lap. Unfortunately she continued to express pain and so yesterday we discussed the need for another MRI. So this morning she had the MRI and the results showed what appears to be more cancer, this time in her right leg, as it looks akin to her left leg. Additionally, there appears, on the MRI, to be a possible spot on her upper right chest. This cancer is moving frighteningly fast. In just a few days these new places have popped up. Sweet Dr. Ermoian has been in contact with the Hem/Onc doctors over the weekend, still thinking through Allistaire’s situation. On his memorial day weekend, he has continually considered my daughter. With this new development of additional locations of cancer, he said that he is now considering TBI. TBI is total body irradiation where the entire body is exposed to radiation. TBI is part of the conditioning regimen of the cord blood transplant that the doctors originally wanted Allistaire to have. I asked if TBI was allowed as part of the transplant protocol and the fellow said that she didn’t know but that she assumed that if Dr. Ermoian brought it up, it probably was. I want Allistaire to have the intense therapy she needs, if she needs it, but it is nevertheless so frightening considering the side effects, both short and long-term. I don’t know much, but I know enough to want to throw up at the thought of her having to go through that. It hurts my heart so much.
On top of all this terrifying speed of her cancer in her flesh is the rise of blasts today in her blood. Today her blast count was 150. She cannot have blasts over 10,000 and still be enrolled in the clinical study. Sadly, blasts are a bit exponential in their rise, so while 10,000 seems far away now, it is entirely possible. She has only been on the hydroxyurea for about 5 nights, but as of tomorrow, they are adding a second chemo, decitabine, which she will receive each morning. Of course the hope is that this will sufficiently suppress her counts. Interestingly, along with her blasts, her other blood lines, her ANC and hematocrit, have not dropped much either. We’ll see.
Nearly every night now, I go to bed with the deep sensation of nervousness, often accompanied by eyes that sting and are weighty from crying. It is hard to want to start the day. When I awake, I lay there, realizing I have to face the unknown of another day. Things are moving so fast now that from morning until night it feels as though the whole earth can sway and shift. There is ever the background noise of high-pitched tension. It rings incessantly in my ears, in the thick of the back of my skull. Sten is here and we try to find enjoyable things to do, but everything is turning bland. We struggle to have something to talk about because everything connects back to this. Everything is stated according to the bar of if Allistaire is alive, or if Allistaire dies…It feels like everything is about to crash down around us. The escape route is narrowing, and I am frantic to get there. We are so close but it is still ever so very far away. Our throats feel the constriction, the tightening, the squeezing and pressing in and down. I was hungry but didn’t want to eat. I knew I needed to eat and so I forced the food in my throat. The food kept catching as I tried to force it down. Allistaire looks at me with those tender, searching eyes and asks why I am sad. I don’t speak. I just kiss the warmth of her skull over and over. I wrap my body around her in the bed and I ask how long do I have with her. I walk the halls and I am literally flabbergasted that this is happening. I am both present and not – I am merely looking in, not seeing that this could really be us. The nurses and CNAs are so sweet and gentle. They sincerely love us and I know they are desperately rooting for us, hoping with us that somehow we will make it through. They are grieving with us. Ange, the fellow, said that she is on call and we can have her paged any time in the night if we have questions, her green eyes pools and caring.
I don’t scream at God, I am too undone, too exhausted. In weakness of voice, I cry, “Father God, have mercy.” I feel unsteady as I walk, often wanting to cave in against the hallway wall. No matter the long view of this, my heart is being torn and ripped.
“Listen to me, O house of Jacob, all you who remain in the house of Israel, you whom I have upheld since you were conceived, and have carried since your birth. Even to your old age and gray hairs, I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:3-4
When I read this passage two years ago, my immediate gut response was, “Fuck you God! I don’t want to be carried! I want you to fix me! I don’t want to be broken anymore! I am sick to death of being finite and broken and a wreck. Can’t you just come fix me, so I can be done with this weakness?! I don’t want to keep needing to be rescued – I want to stand on my own two feet and walk. Almost as immediately, came swooping in the sudden shocking awareness and conviction that I did not really want God, I wanted what He could give me. Ultimately what I wanted from God, was for Him, in His power and perfection, to make me perfect so that I could be self-sufficient. I did not want to need God. I wanted to need no one. I wanted to stand in my own strength. Weakness and dependency were revolting to me and I wanted nothing to do with them…until that day that I shook my rebellious, furious fist at God and how swift and glaringly clear was His response. In the next moment I realized that God wants me, more than anything else, to be in relationship with Him, that is His ultimate aim. I saw in that moment that the purpose of Christ’s death was not to make me righteous. The purpose of Christ’s death, was to make a way for me to be in relationship with the Living God. Righteousness was necessary to pave the way to God, but it is a means, righteousness is not the end. I felt the Lord smooth my brow and I saw that He had dealt with my sin, once and for all in Christ – now I could rest. Now I was invited to see that my neediness was in fact gift because it was the means by which my eyes would be opened to see God and abide in Him. God called me to something so much more glorious than having my sins simply washed away. He washed away my sins and put them as far away from Himself as the east is from the west, because above all, He wanted to free me up to rest in Him. Dependency went from repugnant to glorious.
There is weakness and brokenness and wretchedness all around me. And I call out to the Lord to heal my child. Oh how I long to see her healed in this life and to always have her with me. And at the same time I hear my Father entreating me to rest in Him. He invites me to be carried by Him. He promises to sustain me, in Him. He, Christ Jesus, is my life blood. I am needy. I am tethered. And where once I thrashed and struggled and raged and cursed to be freed of my finiteness, now I yield. Now I sit down in my Father’s lap. I cry and I mourn and I ask Him to give me eyes to see. And that is His promise to me, that through this horror I will see Him – this “seeing through to God” place. Ultimately, God values us knowing Him above all other things. This feels utterly offensive. It feels like a belittling of the value of my child’s life. That is one way to see it. But God’s audacious promise is that this pain will be worth it. In the long view, this cutting, ravaging pain emphasizes and clarifies the immensity of God being more clearly seen for who He is.
Father be faithful. I end this night in weariness. I am ever so in need of you to come to me and care for me. I need you to carry me. I have no strength left. I abide in You because You abide in me.