I couldn’t think of a single friend who would be willing or able to take on such a task. Or was it that I was too afraid to ask? I felt I had used up my lifetime allotment of favors, creating a friendship deficit that left me owing others more than I could possibly repay.
But with Karen’s encouragement, a couple of days later, I called my friend Anne and invited her over. I sat on the sofa, nervy at the thought of what I was going to ask her. She walked into my home, sat down, and eyeballed me. I could see her taking in every aspect of the room. There were pairs of dirty socks and shoes clustered at the foot of the couch where we stripped them off at night, a stack of magazines, and unopened mail used as makeshift coasters for used coffee cups. A half-eaten box of Frosted Mini Wheats sat on its side, and the cat had made a nest in the laundry basket next to me. Anne noticed all this without taking her eyes off me. I felt exposed. My house was always immaculate and picked up every morning before I started my day. Now, here I was sitting in a pile of debris and I hadn’t the energy to move. I stared back at her, a nervous smile creeping onto my face at the absurdity of it all.
“What can I do?” she asked with a genuine tone of concern.
I swallowed hard, trying to find the right words. I hadn’t seen her in months and couldn’t think of where to begin explaining my life. I started with the list of jobs I was sent away with after meeting with the palliative care team at the hospital.
“So… you are the first person I thought of,” I said with my heart galloping around in my chest. Please say yes. The truth was that she was the only person I could think of who could do the job. Anne is the most organized, get-it-done person I know. I had known her since our boys were in the first grade together, and even then I knew she was a force that made my Type-A tendencies look like mere laziness. I lost my bravado quickly when she didn’t reply immediately. “I need help. My world is falling apart.”
She leaned over, a kind look of concern on her face, and took the yellow paper from my hand. She quickly glanced through my notes as she fumbled for a pen in her purse.
“This is no problem. Let’s start right now. Do you have a list of contacts you can print out for me from your address book?”
I let out an audible sigh. For the first time in months, I felt like I could breathe, like we just might make it, and maybe, just maybe, we would come out the other side in one piece. Anne spent the afternoon going over a list of people who could help us. She divided them into people locally, out of town, neighbors, family, friends, and church members. We wrote a select list of people who might be willing to spend the night at the hospital with Andrew, and people who could take care of Hannah.
“Do you know how to start a blog?” she asked.
I shook my head.
“Let’s set one up now. Then I want you to invite everyone on your contact list. You can keep people updated medically, and I will be in touch with people who can help. That way, you won’t be so overwhelmed with phone calls and emails. Keep things simple, focus on your family, and let me take care of the everyday things.”
Again, I let out an audible sigh.
“But what do you think anyone can do?” I asked, as she was packing to leave. “If I see another casserole, I might barf.”
She raised an arm in the air, “Leave it to me. This woman has mad plans!”
I returned to the hospital to hear my mom talking with Andrew.
“I’m not gonna do any more surgeries,” Andrew told her.
The doctor had recently explained the purpose of a Hickman line, and the procedure that would entail. Andrew had paled when he heard he would have two long lines hanging outside his chest near his heart, one for medications, the other for blood draws and infusions.
Feigning interest in an outdated People magazine, my mom casually said, “You know, that sounds exactly like what Iron Man did. He was out of energy and he needed superhuman strength to get his job done.” She flipped the page, scanning the best- and worst-dressed Hollywood starlets while Andrew chewed on this new information. “Seems to me that this new wiring will help you get your superpowers back, Andrew.”
“Does this mean I can fly?” he asked.
“Maybe. I really don’t see any limits to the possibilities.”
He pulled Stuffed Frightful from somewhere under the bed sheets and whispered in her ear. The two of them came to the conclusion that this was a very good idea.
Chapter 21
The air had turned bitter cold, but I didn’t care. Perched on the stone steps in front of the hospital one morning, my cold fingers fumbled for the buttons on my down jacket. Frustrated, I looked down and realized there weren’t any. I awkwardly grabbed at the zipper, yanking it up to my chin. Was I losing my mind? Every thought felt fuzzy and held in suspense as I fearfully realized I couldn’t even recall the thirty-five minute drive home the night before. I wanted out. Out of here. Out of hospitals and disinfectant smelling hallways and doctor’s meetings about my terminally ill child. I told God all the faith I had mustered for this transplant was not enough to make it through. I wanted out.
I rubbed at my face and wound my scarf tighter around my neck, stuffing it inside my shirt. Somehow this one small cozy moment made me feel like I could keep my head attached to my body, a simple way to tame the thoughts racing through my mind day and night. I carefully shifted my weight on the icy step and pulled my phone from my pocket to check the time. Forty-two minutes until the transplant meeting. There was no way I was going back to the room—not yet. I was suffocated by the insanity of needles and drugs and white coats.
Cradling a hot cup of peppermint tea to my frozen cheek, I mindlessly rooted through my Starbucks bag for the last pieces of a stale blueberry scone. My phone rang as I finished my tea. It was Anne.
“I have a schedule set up for the next three nights at the hospital. Check your email for the list and let me know if it sounds okay to you, then I will confirm with each person.”
My mouth hung open, the scone suspended midway to my lips. It seemed impossible she could do all that so quickly.
“I also have Hannah taken care of through the weekend. A gal from church is picking her up at your in-laws on Sunday and bringing her to confirmation class. The youth leader will be bringing her home. Your neighbor is taking care of the chickens, buying them feed, and cleaning the pen today.”
“Really? Are you sure? Were they okay with that?”
I knew the youth leader was someone Hannah trusted, but the coop was a mess and the chickens seemed to have gone mad with the lack of care they were used to. I didn’t know if my neighbor knew what he was getting into.
“Oh, and ladies from your book club are dropping off a huge bag of fruit, vegetable soup, and homemade bread. No casseroles. I thought you’d like that.”
I didn’t know what to say. Anne chattered on, sharing that within hours of my first blog post, she had been flooded with a barrage of phone calls and emails. When people from out of town called, she suggested they send gift cards to local grocery stores and delis, where we could escape from the less than palatable hospital cafeteria. A hot meal schedule was posted online, and she directed others who wanted to help with meals where to sign up. She even scheduled hospital visits.
“Can you think of anything else you need?” Anne asked, her voice interrupting the thoughts in my overtired brain.
“No, I don’t think so,” I said between chattering teeth. The wind had picked up, bringing an icy moisture that hinted at snow. I began to shiver and pulled my scarf up over my head. Blowing my breath out slowly, I watched the warm air curl up from my mouth like steam out of a teapot. I didn’t know what to say. “Thank you, Anne,” I breathed into the phone before hanging up.
Back in the room, I untangled myself from my winter ensemble and tossed my phone onto the bed next to the window. It hit the far wall, making a loud thunk before sliding down the back side of the cushion.
“What was that?” Andrew asked through closed eyes. He raised his hand and ma
de his symbol for bird, reminding me to ask Hannah to FaceTime Frightful in the coop. Before I could answer, he was asleep again with Shadow’s tiny body standing on the pillow next to his sweaty head.
Leaning back in the rocking chair, I closed my eyes and tried to slow my racing thoughts. I wondered if God had overlooked the fact that I was being tested beyond my capacity. Did He know my very human heart felt like a heavy weight that just might rip a hole in my chest?
For years, I was told by others to trust God and have faith. I had tried. Not only had I tried to trust the doctors and trust in a cure for Andrew, but I also tried to have faith in a God who had allowed this to happen. Trust is hard, but faith is a bitch. Faith requires diligence. It required me to get up each morning, and say, “I believe,” even when my life was messy or downright tragic. In the end, the surest sign of faith was how I chose to live. Because I believed that when faith was put in to action, it had the capacity to bring light into the world.
I was just falling into sleep when a nurse came in to see if I was ready for the meeting.
“It’s time already?” I grumbled. Looking at her kind face, I mustered a weak smile and added, “Thank you.”
Jon was frantically wrapping up a meeting at work, so I would have to brave this consult on my own. I’ve done these countless times. I can handle it, I coached myself. Steeling myself for battle, I fumbled for a pen, gathered my notes, and walked in to the medical conference.
“Hello, Mrs. Adams. Please sit right here.”
Dr. Lewis motioned to a seat near the door. He was a friendly but formal man who I suspected had been a transplant doctor for several decades. He was the one who would harvest the marrow from Hannah, and I was glad for his experience.
Nine other people, most of them clad in white coats, were staring at me from the other side of the table. The too-small conference room was stuffy and vibrating with energy, making my skin feel prickly and my blood thud heavily in my ears. Desperately scanning the room for a friendly face, I spotted David Archer, the hospital administrator, sitting in the far corner. He gave me a comforting smile, and I could breathe.
“Okay, let’s make introductions and then we’ll proceed,” Dr. Lewis said.
Everyone introduced themselves and slid their business cards to the center of the table, a gesture eerily reminiscent of a high stakes poker game. I shivered at the thought.
Dr. Lewis addressed the room. “Andrew’s transplant remains one of the more perplexing ones we have performed. We’re not clear what the etiology of his underlying disease is, so it’s been difficult to figure out how to treat it. Considering his current state of health, it’s critical we find a good regimen his body can tolerate. We carefully selected the group of medications used for the chemotherapy in order to protect his liver as much as possible. We also have to carefully calculate the amount of radiation he can receive. If we do too much, he won’t survive.”
I felt the bile rise in my throat and the room got a little smaller. The woman next to me handed me a bottle of water just as the fuzzy feeling in my head threatened a takeover.
“Thanks,” I said weakly.
“The most tenuous time coming up will be from the day of transplant to thirty days out. He will be required to remain in the hospital as long as he is unable to eat. Once his ANC (blood neutrophil counts) begins to rise and he is able to maintain an adequate calorie count by mouth, we will consider discharging him.” He looked over his glasses at me, making sure I understood him clearly. “Even if he goes home, he will be required to remain within a twenty-mile radius of the hospital for at least one hundred days post-transplant so he can be transported to the hospital quickly if any complications arise.”
I didn’t volunteer that we lived twenty-seven miles from the hospital.
Addressing the rest of the room, he continued, “As you all know, Andrew is currently in-patient here at Children’s. Since he has been so ill, he has undergone his pre-transplant testing here instead of the SCCA downtown. The GI team determined that he will not need a bowel resection as briefly discussed, so that allows us to continue on schedule for transplant in early February.” He took his seat.
A blond woman in the far corner took the floor next. “Andrew’s sister, Hannah, is an excellent donor match, which is a good indicator for a successful engraftment. Her test results came back well within the parameters of what we hope for, and she seems eager to help her brother. Since we will only be able to do a partially ablative regimen on her brother, we are proposing we give Hannah some medication to help mobilize her marrow to produce a higher percentage of stem cells.”
“What do you mean by partially ablative?” I interrupted, realizing this was new information.
“It means only a certain percentage of Andrew’s marrow cells can be eliminated, instead of the desired one hundred percent. Because of this, we need to make sure the donor cells are as effective as they can be so he has a good chance at a strong engraftment,” she said.
I nodded, pretending to understand exactly what she just said. For the next hour, members of each department added their own reports and opinions while I practiced my yoga breathing to keep the room from spinning.
At the end, Dr. Lewis turned to address me. “If you are in agreement with the plan as presented, I will need you to sign these papers so we can move forward.”
I looked at the stack. It seemed to loom above the desk at a dizzying height. I couldn’t imagine what could require so much paper. The first documents were consent for Hannah’s treatment and surgery. I scribbled my signature on the pages, wishing Jon was there with me.
“These are consent forms for each of the medications required for Andrew beginning today, until about thirty days post-transplant,” Dr. Lewis said, handing me the first stapled pile. Yellow sticky notes with the words, “Sign Here” protruded out at all angles up and down the right edge.
“Why is this all in red?” I asked.
“That’s the drug warning information required by law. You can skip a few pages back if you like, and sign there.”
My eyes froze on the first page. The word “WARNING” was written in huge red block letters, followed by a two-page list of all the cancers, diseases, maladies, and complications the drug was known for. One drug mentioned that it would permanently damage the reproductive organs, most likely leaving the patient sterile. The notation under the warning label read, “This medication is best not taken unless absolutely necessary.”
Oh God, what in the world am I consenting to? The white-coated strangers in the room flooded my vision, crowding around me like a twisted carnival nightmare. Prickly sweat started at the top of my head and began running down my back and shoulders. Looking up, I caught David Archer’s eyes on me. I must have looked horrified or half-crazed, because he held my eyes, not allowing me to look away. Then he gave me a steady and encouraging nod. My hands reached for a pen; I scrawled my name on the paper.
For the next thirty minutes, additional drugs were discussed at length and introduced to me by names I would never remember. Each had warning pages in red, some more frightening than others. My water bottle was empty and my chin cradled in my fists as I willed myself not to cry. I knew my shirt was speckled with nervous sweat—the kind that smells like fear. I hoped the lady next to me didn’t notice.
“This is another medication we use called MMF,” Dr. Lewis droned on.
“Oh, that must be known as the Mega Mother Fucker drug!” I said without hesitation.
A heavy stillness settled over the room. I was mortified and embarrassed, yet strangely liberated. I felt powerful in a way that my son could not. Those realizations overcame me just seconds before I snapped, collapsing into crazy, snot-spitting hysterics. Grabbing my belly, I gasped for air as I continued to laugh maniacally, tears streaming from my eyes. Each time I tried to regain my composure, Dr. Lewis would say, “Okay. Now let’s continue…” Then I would look up at him with his serious face and faint scar that sliced its way from the corner of
his mouth to just below his chin and wonder how it got there. When he opened his mouth to speak, I started in with the insane laughter again.
I had no control over my response. I was a woman shedding ten years of fear, pain, grief, and a death grip I held over my need for control. The moment I rolled off my chair into the fetal position on the floor, I heard someone say, “I think we are done with our meeting today.”
Twenty minutes later, I was still huddled under the table in the middle of my breakdown, alone. There was a tentative knock on the open door.
The woman who handed me the water bottle an hour earlier came in and crawled under the table. “You did well today. I will never think of the MMF drug the same again,” she said with a huge grin. “I like your name for it. It’s very fitting.”
I looked at her through my puffy eyelids and mustered a smile. She was right. It was fitting. We sat awhile, under our wood and metal canopy.
“Today was also good for you,” she said.
I nodded. She was right again. That afternoon, I had surrendered my son in a flood of tears and laughter, and it was good. Very good.
Chapter 22
Once my blood stopped pounding and the roaring in my head ceased, I crawled out from under the conference table and stripped off my sweaty shirt. Anyone walking by would have to deal with my bare back and grungy bra. Both smelled like all my other clothes, reeking of anxiety no matter how many times I ran them through the wash. Making sure the hallway was empty, I weaved my way back to the room, collapsed on the bench below the window, and slept for the rest of the afternoon. I awoke to Seattle’s version of a snow-ice-ball-freezing-rain that caused the entire city to shut down. Everything was wrapped in a heavy coating of ice, topped by several inches of innocent looking fluffy white snow. The muddy streets and colorless trees had cloaked themselves in soft white robes, but nobody was fooled; the treachery that lay beneath the beautiful landscape was enough to keep the bravest of souls off the roads. It was clear I wasn’t going anywhere.
The Chicken Who Saved Us Page 17