“The Italian memoirist Primo Levi, who survived a concentration camp and then navigated his way through blasted Germany to his native Turin, often remarked that among the most fatal qualities of the camp was its ability to erase the idea of a life outside and beyond itself…it was the erasure of the future that was most chilling…Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away. Every last morsel of energy is spent tending the disease…For Carla, in the midst of the worst phase of her chemotherapy, the day-to-day rituals of survival utterly blotted out any thought of survivorship in the long run…The poet Jason Shinder wrote, ‘Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.’ But what patients see through the glass is not a world outside cancer, but a world taken over by it-cancer reflected endlessly around them like a hall of mirrors.”
“The arrival of a patient with acute leukemia still sends a shiver down the hospital’s spine – all the way from the cancer wards on its upper floors to the clinical laboratories buried deep in the basement. Leukemia is a cancer of the white blood cells-cancer in one of its most explosive, violent incarnations. As one nurse on the wards often liked to remind her patients, with this disease, ‘even a paper cut is an emergency.’ For an oncologist in training too, leukemia represents a special incarnation of cancer. Its pace, its acuity, its breathtaking, inexorable arc of growth forces rapid, often drastic decisions; it is terrifying to experience, terrifying to observe and terrifying to treat. The body invaded by leukemia is pushed to its brittle physiological limit-every system, heart, lung, blood, working at the knife-edge of its performance.”
I have never been to Vietnam, to Korea, to Iraq, or Afghanistan. I have never been to war where guns and tanks and bombs and ships and metal and fire and brute force are the weapons of assault and defense. I wear no uniform, nor metal for courage. I have no badge bearing my name or stripes to show how long I have been involved in this fray. Unlike Veterans of war who return home after long months and sometimes years abroad, fighting on foreign soil, our fight sits side by side with a fancy grocery store, in a land where I speak the language – in fact the very land in which I have grown up. Other than one adorable bald head, which can easily be covered, and the occasional glimpse of tubes peeking out of a cute shirt, we blend with everyone around us. But we are not the same -we are in fact largely isolated, caught in a trap from which we cannot seem to escape. The paragraphs above are quotes from the fascinating book I am working through that I have mentioned before, “The Emperor of All Maladies,” by Siddhartha Mukherjee. In conversation with the doctors one day, I brought up a question that the book had sparked. They suggested I spend my time on a “beach read,” implying bizarreness that one in the battle against cancer would want to read something so heavy when they are already so burdened. For me nothing could be further from true. I read the book voraciously, in large part, because it describes a world and a reality that we live and breath every day but which most people cannot begin to fathom. I imagine it might be like living on the other side of the world from your homeland and then coming upon someone from your own country, who speaks your own language. You have been surrounded by people who view you as a foreigner for so long and there is sweet relief to be with someone who you can understand, and wondrously, they can understand you. You know some of the same people and some of the same places. The reality of cancer is always weighty but something mysterious occurs when you engage with someone who is living it or has – for you will always be marked by it. Weight does not add to weight. No, you bring your weighty burdens into the space there between you and the burden is actually diminished. Oh, you may relay facts of your journey, but what it is like to walk this road – it need not be expressed and if it is, it is readily understood. The thing is, this life, where every breath inhaled and exhaled has cancer in the very molecules of the air, gouges you so deeply and so uniquely that you grasp to put words to it. You struggle and groan to give it a face and to pin down, to make concrete, it’s ever-moving, thick shadow. You oscillate between desperately wanting others outside of it to really understand, or you shut down and shut out because the task of understanding is too great. Good grief, you can hardly take it in yourself, how can you expect someone else to envision something that they have never seen and there are no words sufficient to scale its ragged heights or to plumb is terrifying depths. So for me, I read about cancer because there is validation and comfort hearing the words in my own heart and days we have lived – spoken from outside myself, from some other person’s vantage point. It helps you to feel a little less crazy. When set in the midst of others walking this journey, you no longer feel so out-of-place, so foreign. And because this “foreignness,” is not readily seen on the outside (especially that of the mom or dad of a child with cancer), you gravitate toward those whose inner lives more closely resemble your own.
So I watched a pretty intense movie for my self-imposed Friday movie night last weekend. “A Lion In The House,” is a documentary by Steven Bognar and Julia Reichert who follow the lives of five children with cancer and their families. After hooking up Allistaire to her IV pump and getting her settled in bed, I cozied myself upon the microsuede couch, so chosen for Ron Don because of its easy cleanablity post-throw up, with my bag of kettle corn and a fabulous bottle of Mexican Coke, the glass sweating from just having emerged from the fridge. Though the clothes and hair styles were painful to watch, the lives of the children and the families were so familiar, I had to smile. In the way that it is odd but natural to laugh when something is scary or wrong, I smiled as I watched the ups and downs of treatment of these five families. You watch ordinary people with delightful children make gains and overcome and enjoy periods of “normal life,” only to have their stangulating cancer rise up again. My eyes watched the little girl, Alex, giggle and run and play games with her dad – in the hospital and out. You see that these are people exactly like you. The faces of the moms and dads could be your own. You catch your breath as you realize once again, that cancer does not discriminate and love cannot ultimately keep it at bay. My heart tore as I watched the stories unfold and the turbulence of the parent’s emotions as they wrestled with how far and how long to keep pushing and when to let go. You see caskets with the faces of children, their eyelids sewn shut. You see the man turn from the room where his younger brother lies in bed but is gone. He is gone and the nurse comes to wash his body and the orderly wheels him away. Many would balk at the thought of watching this movie and perhaps even more so, that I should watch this movie. But this is a land I know and a world entwined in my heart and life. It is a landscape I may still have to face and somehow it helps me to look ahead to that awful yet possible end. I despise all of the euphemisms used by doctors and people around me. I wanted to scream at the doctor a few weeks ago when she told me the news of Allistaire’s relapse. What I did say was that she better have the guts to the say the words that I have to live – she could at least go that far. No, she can’t know what it feels like to live this life but she can at the very minimum force her mouth to make the shape that allows our breath to utter “die.” I wanted to bellow and rise up with fists when she referred to the transplant as “unsuccessful,” as though it were some failed business merger, some pie that had fallen in the oven.
Within one hundred and twenty seconds of giving Allistaire her twelve doses of morning meds this morning, the hot thick yellow fluid came right back up. We had twenty minutes before we needed to leave for her chemo appointment. I was not fully dressed, her clothes needed to be changed, the floor and table and chair cleaned up, anti-nausea med given, more food eaten and the doses drawn up and given all over again. I swore horrible violent words and raged and stomped my foot and acted like an utter fool. Sweet Allistaire shook and said, “it’s not my fault.” And I raged and swore and huffed and puffed. Ten minutes later I was drawing up meds in the kitchen and crying and Allistaire asking with her little head tilted to the side, “What’s wrong mommy? Why are you crying?” And I feel filled to the brim with rage that is really just absolute heart-broken sadness, but I must press on. We have to drive downtown to get her third dose of chemo. Four more to go after that. I ignore her and tell her to eat her granola bar and I go stand by myself in the bathroom. Minutes later she comes to me to declare that she has eaten all her food and drunk all her milk. She stands looking up at me with a tentative smile and eyes that plead for me to be proud of her. And I ignore the clock and crumple down onto the hallway floor and gather her into the bowl of my lap. I wrap my arms tight around her and press my cheek against the warmth of her prickly head with the new growth of hair. I ask her to forgive me and I tell her that I am so sorry and I tell her that I should not have yelled and she is right, it’s not her fault. I say that I must have been very scary when I should have been sweet. And she smiles her very sweetest smile and says with her bright blue eyes and adorable voice that she forgives me. I hate this life and it is so very precious and dear to me all at the same time. You see, I do not have cancer. There is not some violent disease threatening to extinguish my flesh. But I hold her so tight she is virtually part of me. She is the baby that came after miscarriage. She is the life that has been so yearned for and for months and now almost on into years now, she and I have been side by side, overlapped.
These are probably not the words you want to read and likely you have no intention of watching this hard movie. But today I speak for those who walk this path with us. I speak for those who will one day in the future find their life plowed up like a ragged field. There is unspoken pressure to “keep your head up,” to “stay positive.” Yes, you must, you must, or you will drown. We must keep going but, sometimes you have to look down and say out loud, “oh my, it seems that I am wounded and there is blood gushing from this deep cut, the blood thick and fast.” It is tempting to put a pretty blue bow around this wound and say, “all better now.” Pain and joy – they do not cancel one another out. They sit side by side. They co-exist and together form the picture.
Allistaire will get a total of seven days of Azacitidine and then will have three weeks where we “watch her like a hawk,” for any sign of her GVHD flaring that can happen with chemo post-transplant. I asked what it might mean to have her GVHD flare. “Her rash (which is over most of her body) could turn into third degree burns on her skin or she could get bloody diarrhea that we can’t stop.” Oh. Okay. It is a twenty-eight day chemo cycle, at the end of which she will have another bone marrow test. This chemo can actually take two to three cycles to really effect the cancer, so no reduction after the first round would not necessarily mean that the chemo is not working. There is no choice but to live each day and wait and see – watching for how this tale will unfold in the flesh and in the spirit. I wait for the Lord. My soul waits.
This is a picture of the small pink spot on Allistaire’s back that was the only indicator of relapse back in February – the tiny bit of evidence that tipped us right into this black crevasse. In our beautiful home in beautiful Montana we had quite a beautiful life, and in our midst, was a wee lion about to spring into action, and set to devour.
The intertwining of grief and hope, sorrow and joy, angst and peace are uniquely yours and it’s difficult for anyone else to understand. You have been emotionally battered by cancer. You have endured watching your precious child be physically battered by cancer. My heart aches for you. This walk through the valley is a lonely place and only the Lord can sustain you on your journey.
My prayers are always with you and Allistaire, Solveig and Sten. Trips through the land of life and death are only bearable with the comfort of Our Lord Jesus Christ. Wishing you peace and a balm for your heart!
I understand. I’m right there with you. Your life is just like mine. Thank you for being able to put it into words.
Cry I did w/ you!!! Pray I will for you!!! Sending (((((((HUGS)))))))))) to the 2 of you from GOD and me Vanita ( Scott Vinson ‘s mom 🙂
I do not understand your pain. I can not relate to your heartache. But one thing I can do is pray.
Prayers, Hugs and Love from Kathy
I have no words Jai. But I want you to know we are here, prayer warriors for you all.
Allistaire is beautiful! Seeing her pushing her little buggy behind you on the path the other day made Breanna and I smile and forget why we even knew each other in the first place.
As for the badge you allude, know this: I have a friend who retired from the Air Force and saw his share. He sent me a text once that simply said “don’t be afraid to cry, I do every night as I think of Bridger.”
There is no manly hero in our battle my friend, there is no metal or award aside from the amazing people we meet along the way. Our badge of courage, Jai, is that beautiful bald head that somehow, amongst all this shit, still blesses us each day with a smile. Just keep putting one foot down before lifting the other and know you are a rock others grasp to in times of need – we have.
We love you. Crying & praying.
So thankful that you find words to give a faint idea of the pain you endure daily. I can only relate to the very beginning stages of the fear of death that I had with Kenzie, which would have been “low-grade” fear compared to yours. It was all consuming at times. I think about you and your family all of the time. I wish there was a better way to help carry your burden. If you think of one, please let me/us know. Lord, please show your tender mercy!! Love you Jai!
“Pain and joy – they do not cancel one another out. They sit side by side. They co-exist and together form the picture.”
Amen. I deeply appreciated the stories in this post, and I appreciate your words and the time you take to voice the anguish, the delight, the mysterious overlap of sweetness and sorrow that make up life. You are in the thick of it, and I love you.
Oh but you do wear a badge of honor, my dear! It’s the orange lanyard that says Parent. Every person who wears one is one who also wears grief of some sort. There is a connection with each person you pass in those hallways that has one- you are all a part of a “club” that you’d rather not be a part of. After Anna’s diagnosis, the movies we watched….Craig would walk in and ask if it was a good thing to watch all these movies about children with cancer. I said it was her way of facing the battle ahead. And so it was. With determination, she said she wanted to be the main character of one of these movies….with only one difference…that she would actually survive this! We too have the book you are reading. What with being with child and the physical exhaustion from that along with all the emotional, I have yet to wrap my brain around it, but I plan to soon. It does help to see peoe going thru what you are or have gone thru. The understanding is unexplainable. A gift from God- we are sometimes allowed to walk thru the valley of the shadow of death so that we can minister to others during their own walk. Love you Jai!!! Thank you for being real! Praying for complete healing for Allistaire and then she and Anna can both be those heroines who survive and go on to do great things!!!! Hugs to all of you!!!
Home is where your heart is……….
Peace is where your body is……….
Joy is in the Lord!
I care, I’m praying and I love you in the Lord.
Praying for you amidst tears….Meredith Andrews’ song, “Not For A Moment” comes to mind as a song that would bless you today. May you picture Jesus there with you with His angels ministering to you and to your daughter as you walk this journey…
(My 18 yr. old son drowned 4 yrs. ago, and one of my other sons just went through whooping cough…knowing Jesus hasn’t forsaken us but is WITH US with all that He is…is everything.)
By His Grace,
Jai, have you ever heard of or seen this? check out this link showing how doctors seem to have cured this young girl with leukemia.