We are less than 36 hours away from Toby's surgery.
Last week we met with our surgeon, Dr. Laquaglia, who impressed us with his warmth, directness and knowledge. He showed us some pretty amazing and sobering 3-d scans of Toby's body, with the large tumor immediately visible in the lower right abdomen. The mass encases several blood vessels and arteries and butts up against the vena cava (the main vein in the body) on two sides. It also completely surrounds a major artery to the right kidney, which puts that kidney at risk. Dr. Laquaglia termed the surgery "life-threatening," but reminded us that it reduces the risk of cancer cells growing back at that location, something that chemotherapy alone cannot do. Bcause of the tumor's location, it will need to be "peeled away" bit by bit from the surrounding areas. There's no margin for error. We asked Dr. L how long the surgery would last and he replied "as long as it takes." He believes he can remove the entire tumor and is committed to doing so, having performed 690 similar procedures over the last 10 years. He really is the best surgeon for neuroblastoma and we completely trust him.
Following the surgery, Toby will most likely be on a ventilator for 24-72 hours and will be in the ICU at Cornell medical center, across the street from mskcc, for observation. He will receive an epidural during the operation, to lessen abdominal pain. He will have lots of tubes and ivs as well as a catheter. We are told that he will be kept sedated until the breathing tube comes out.
These pre-surgery days have been very frightening and I’ve gone searching for neuroblastoma blogs (yes, they exist!) to help my anxiety. I’ve been continuously struck by how much faith these parent/writers have. Their children are going through a living hell... in tremendous pain or in incredibly debilitating circumstances. Hair, eyebrows and eyelashes have fallen out, immune systems are one small step away from collapse, weight is at skeletal levels, small bodies bear the full force of unimaginable quantities of poisons. and yet the parents manage to retain a belief in God, a sense that the world is good and just.
I myself have been having a hard time with God lately. When my parents were here, my father bought me a slim volume entitled "Yosl Rakover talks to God," which he inscribed with his customary passion and elegance: "For Michal, our beloved daughter, in dire need, a heart-tearing shout to the hiding God. With unconditional love, from Mom and Dad, Brooklyn 4 May 2007."
I've read the book twice now and wish that i could say that I find it helpful or inspiring. Perhaps I don't understand the nuances at play. And I admit that I haven't been able to muddle through the commentaries by Emanuel Levinas and Leon Weiseltier... perhaps those would shed some light. The narrator of Kolitz's story is just hours away from his own death. He has lost his wife and all 6 of his children in horrifying circumstances. His comrades in the warsaw ghetto have died around him during the previous night's fighting. Alone, he wrestles with God and proclaims his unyielding faith, even though God has veiled his face and turned away from the suffering of millions. There are passages of stark beauty, but much of the prose is tied up with vengeance and a strange paean to the nobility of suffering. Kolitz passionately believes in God, even though and despite the fact that God is absent. I have always loved this inverted kind of thinking, have felt myself pulled along and buoyed by its logic. But it hasn't moved me this time. It isn't easy to have unshakeable belief when my innocent, beautiful child is in the throes of a life-threatening disease. I'm sorry Daddy, but your inscription is the best part of the book.
I've been luckier with another small book, "When bad things happen to good people," by Rabbi Harold Kushner. Although the title rubs me the wrong way, it is most emphatically not pop-psychology, but instead a moving and elegant response to suffering.
I still feel that what is happening to Toby is tremendously unfair. I am scared almost every minute of every day, I worry endlessly, I ache for my child and I admit that I am angry at God. Yet I find great relief in Kushner’s idea that God is not responsible for human suffering, but can provide us with the strength to cope with our situation.
Kushner writes, “I don’t know why my friend is sick and dying and in constant pain. From my religious perspective, I cannot tell him that God has His reasons for sending him this terrible fate, or that God must specially love him or admire his bravery to test him in this way. I can only tell him that the God I believe in did not send the disease and does not have a miraculous cure that He is withholding. But in a world in which we all possess immortal spirits in fragile and vulnerable bodies, the God I believe in gives strength and courage to those who, unfairly and through no fault of their own, suffer pain and the fear of death.”
Kushner has also introduced me to an incredibly powerful line of reasoning: at a certain point I can stop asking "why has this happened to me?" and move to "now that this has happened, what shall I do about it?" This is the kind of thinking that I embrace.
We ask that you believe, that you pray, that you give us strength and that you think of Toby on wednesday, as he undergoes the major, invasive and 10-hour surgery that will remove the tumor from his body. We are fearful, but determined and hopeful. Our little boy needs your thoughts and your love.
Also, if you are so inclined, please, please send us a comment on the blog. You simply don't know how important it is for us to read your words and wishes. It connects us to all of you in an immediate way that we find very reassuring. I have changed the settings so that you can comment (click on the blue comment link directly below this post) without needing a google account. Simply write your message and click on the orange "publish your comment" to post.
We thank you for your continued prayers, care and kindness.