God and the tumor

May 2008
“We’re not ready, God. Please, please, we’re not ready to lose her. You can’t have her yet.” I chanted this like a mantra as I flew up Genesee Avenue to get to my Mom’s house. Five minutes before, I had just gotten back to my desk from a meeting and was ready to begin the “real” work of the day. My phone rang – it was my sister Beth. “Ginny – the paramedics are on the way to Mom’s house – we think she had a stroke. I’m on my way over there – you need to meet us at her house.” The sound of my name – just the way she said it put my whole soul on alert – I knew it was bad even before she finished the rest of the sentence.

Grab my purse…tell someone I’m leaving…get to my Mom. That’s all I could do, and pray and cry and pray. I remember calling my friend Sandy, who was at home that day, to ask her to pray for Mom. I called my pastor – same request. Please pray, pray, pray.

Mom’s street…park the car…get out and run up as the paramedics are wheeling the woman who created all of us on a gurney and putting her in the ambulance. She was…my mind freezes. Her arm, limp and hanging over the edge…that vision will be with me forever. Her head rolling…seemingly lifeless, eyes unaware.

Vicki says, “If you’re coming with me, get in NOW!” The world starts moving again. I jump in her car and we head out ahead of the ambulance. Beth rides with Mom – already, silently chosen as the family spokesperson. Vicki has to get gas – the warning bell is ringing. She pumps a few bucks in and we get back on the road in under two minutes.

Vicki yelling at people who have the audacity to drive the speed limit. “Get out of the way! That’s my mom in that ambulance…pull over NOW!!!” She’s tailgating so close to the Lexus in front of us that my breath catches in my throat. I reach over and rub her shoulder. “Sweetheart – first we have to get there in one piece. Just breathe and drive, but please get us there OK.”

We park in the Ace parking structure – like a slap in the face – you have to wait at a gate to get a ticket that will allow us to park and be with our mother. Since the ER is right there, I jump out of the car and leave poor Vicki to find a place to park her truck. Sorry Vicki.

In the ER waiting room, we only sit for a minute before Beth comes out to tell us they’re…what? I can’t remember what she said…I just remember her face. This was bad – I could tell from her face that this was very, very bad. Mom was having seizures and her whole left side was paralyzed. The team was talking stroke, but before they could even make that diagnosis, they had to get her stabilized. The possibility that she might not survive this suddenly blossomed in my mind, like leaving a sharpie marker on a napkin – all the ink being sucked into the white background, leaving a big, black cloud of fear.

Someone comes to get us – they take us to a “private” room, where she introduces herself as BJ, the social worker, and she says a chaplain will be in to speak with us shortly. Why? It’s the question in all of our faces.

Vicki says, “This is the bad news room…why are they sending a chaplain in?” I tell her, even though I don’t know if it’s true or not, that they ALWAYS send a chaplain in when it’s a crisis like this, in case we want to pray. Liar. Sometime during all this I must have called my daughters, because they arrive and find chairs. We’re all quiet, each saying our own silent prayers.

The chaplain comes into the room and tells us that the doctors are working on Mom, trying to get her stabilized. He’s calm and straightforward. I know immediately we can trust him to give us the unvarnished truth. At some point he prays with us but I don’t remember if it’s before or after they tell us that Mom hasn’t had a stroke.

“We have her on emergency life support.” Vicki and Carissa fall into each other and sob. Beth and I, our eyes meet for the briefest of seconds before we focus on the ER doctor, who is telling us that Mom has been intubated and they’re giving her drugs to basically, put her into a coma, so that they can stop the constant seizures. He’s grim, not hopeful. Nobody asks the obvious. Is she going to make it? We can not put that into words because this is our mother, grandmother, great grandmother. The doctor leaves quickly. He’s kind but he has important work to do. They’re doing a CAT scan on Mom’s head to look for signs of a stroke. Beth says something to him as he leaves, “That’s our mom – please take good care of her.”

I feel my control sliding away – please, please God. You can’t take her yet. Oh yeah – this is where the chaplain prays with us. It’s a good prayer, asking God to be with us during this time. Asking God to be with Edith as the doctors work to find out what’s causing her illness. None of that “heavenly father we don’t understand why you’re doing this, but your will be done…blah, blah, blah.” The God I know loves us and wouldn’t cause this to happen, and if the chaplain had started talking like that, I would have shut him down in a hot minute. But this guy, his name is Rick, knows what we need to hear.

We sit and pray, talk, cry. Already the knots that my mother has tied over the years are tightening us into a UNIT. We are all in this together and will stay together, focused only on getting the most important person in our lives through this crisis.

Fifteen minutes later, the chaplain comes back. He tells us it’s not a stroke. He can’t tell us what it IS, but he can tell us that the doctor will be back shortly to give us the news. I study his face, looking for clues. Not a stroke? Is it her heart? She always expected something to happen with her heart and had prepared herself emotionally for that. Has it come to the point where she’ll get that long-promised pacemaker that her cardiologist told her she’d eventually need?

The doctor flies in again. You can almost hear the air crackle as we all zoom in on him. “Your mother has a four centimeter brain tumor in the back right side of her brain.” He makes his thumb and index finger into a circle to give us an idea of how big four centimeters is. FREEZE. All the air leaves the room. Am I going to throw up? No – hold it together as he continues. “We think it’s a meningioma, which is a USUALLY non-malignant tumor, usually localized outside the brain. We’re going to send her for an MRI so we can get a better idea of exactly how large it is. We’ve called a neurosurgeon.” That’s all I remember.

I’m learning already that “hospital time” passes in chunks. You wait, you get a block of information and are told to wait some more. Has it been fifteen minutes or two hours? It’s hard to tell.

At some point, they come get us out of the room and escort us to the family waiting area, with lots of comfortable chairs that are meant for sitting and waiting, but not for resting. By now, my brother Bill has arrived. He holds mom’s hand in the ER where they still have her, and he cries. Mom is semi-conscious, even with the massive doses of drugs. She’s fighting the breathing tube, trying to speak, trying to get up and go home. They let two of us into the ER at a time, and we take turns. Just holding her hand, caressing her hair and face, talking to her to let her know we are all there and she doesn’t need to be afraid. I lie to her, “Mom, you’re in the hospital emergency room. You’re going to be fine. They just have the tube in to make sure you can breathe. We’re all here and as soon as you’re better, we’re taking you home.” Her brow relaxes and I know she can hear me even if she can’t respond. But a minute later, she’s writhing on the bed again, fighting, fighting to get up and away. In my soul I hear a voice tell me that if she can still fight, she will survive this. I’m suddenly calm and very focused.

In the family waiting area, my brother and I hug. My God, he’s gotten old. Do I look that old? He’s still tall, but so thin. How are the boys, how’s Dianne? We haven’t seen each other in over 15 years and there’s much to catch up on, but for now we just scratch the surface, politely asking about each other’s families. We get interrupted and I walk to the other side of the room to talk to my girls. Next thing I know Bill has left – he has to get back to work to a job where he’s left all his tools.

The next hours are a blur. We wait. We talk. I’m amazed at how resilient we are – even now we can tell jokes and laugh during this crisis. I think to myself that we will get through this because we have each other. This is the gift that my mother has given us.

We take turns, two at a time, to sit with Mom. She’s unconscious, but maybe she knows we’re there so we talk to her, stroke her arms, hold her hands. Yes, Mama, we’re all here and we love you. We tell her about the work the doctors and nurses are doing to make her comfortable, to help get her well. Later, she’ll tell us she doesn’t remember a thing after the first seizure started, but right now, watching her vital signs on the monitor, it feels like she can hear us and her heart rate slows a bit.

Beth and Vicki are with her when they take her for the MRI. We wait some more. After the MRI, we meet Mom’s neurosurgeon, with a long name that I immediately shorten to Dr. T. He’s a serious and cautious young man. He gives us more details about the tumor, says they’re planning on surgery sometime in the next few days. We ask for details about the surgery. He pronounces a list of doom and gloom about all the possible complications, starting with death and ending with lifetime seizures. He’s not a man given to percentages or reassurances. We ask about the possibility of malignancy, of the possibility that they won’t be able to remove all the tumor. He tells us that he doesn’t think it’s malignant, but that you can’t tell until after the biopsy, which takes about three days. He says that often they have to leave pieces of the tumor behind if there’s too much vascular involvement. I like this man – he doesn’t dumb it down for us – he tells us the truth so we’ll know what we’re up against. Someone with false assurances we would have seen through in a heartbeat.
More tomorrow...
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I wrote the first part of this story right after mom’s brain surgery, and by that time we knew she was going to be OK. Then I closed the file and haven’t looked at it since. Partly, I think, because the emotions that we lived with for that week were so extreme that I needed to step back from the intensity. I needed to just be happy in the fact that our matriarch had survived a life crisis once again. Now I’m ready to pick up the threads of the story and finish it.

I talked about hospital time feeling like it came in chunks. Lots of waiting, then we’d get some information or something would happen, then hours of waiting again. We met with the neurosurgeon on Friday and he told us he would be doing the surgery sometime in the next week; it depended on his schedule. By Saturday afternoon, we were told the surgery had been scheduled for the next morning. It felt right to me that they had planned the surgery for the Sabbath. Like God was telling us not to worry – nothing bad could happen on God’s holy day. Not very logical, but we were all clutching at whatever glimmers of hope we could find.

On Saturday evening, Dr. T came to see her. He did all the usual checks of her vitals, checked the strength of her grip, asked her how she was feeling – was the headache better? Worse? He gave her the list of doom and gloom that he had given my sisters and me the night before. Death, fatal bleeding, paralysis, coma, lifetime seizures, and death, death, death.

He asked mom, “Do you have any questions for me?”

“Yes, just one. Do you have any good news?” Mom asked.

This guy was so serious – like he was warning us that he didn’t expect good results from this surgery. Like he was gearing up to be able to tell us, “I told you this would probably happen,” as we got the news that she hadn’t survived. But he didn’t know our mother. She’s a six-foot tall Swede, and she’d survived worse than this.

The doctor seemed to relent and gave us a short list of good possible outcomes. He actually smiled – not his whole face – just the corners of his mouth. As he swept away, Mom called out, “Don’t go out drinking tonight.”

He stopped in his tracks, turned back, looked right at Mom and grinned. Didn’t say a word, but that smile told me he had made the connection. This was a living, breathing, wonderful woman whose brain he was going to be cutting open the next day. Not just a litany of statistics and possibilities.

Mom was in the SICU (surgical intensive care unit). The night before the surgery my sisters and I were at the hospital, taking turns sitting with her. It was my turn during the still hours, when it’s quiet except for the machines beeping out heart rhythms and warnings that an IV drip needed to be changed. They close the unit to family for two hours between 5 – 7 a.m., for a shift change. But when they ushered the families out, somehow they missed my mom’s bed and I just stayed. I held her hand and watched her sleep. I prayed a lot, asking God to be with Mom, to be with the surgical team and help them to work like a well oiled machine, to guide the surgeon’s hands and help him to make all the right decisions. I pictured the surgeon deciding where to start the excision of the tumor – please God, make him steady and sure when he’s working on my mama’s brain.

She opened her eyes and looked at me. I could see fear. “Are you scared, mom?” Stupid question. She was terrified. But she put on her brave face and assured me everything would be OK. She was facing death and worried more about how her children were handling it.

At 7, my sisters both came in. The grandkids began arriving. The surgery was scheduled for 9 a.m., and the team was already starting their surgical preparations. By 8:30 they were ready to wheel Mom into surgery. I was sobbing – inside – on the outside I was smiling and trying to reassure everyone. My sisters were both crying – theirs was the more honest way of meeting this crisis. All the grandkids were touching her, telling her how much she is loved. I had already said my piece when we were alone during that 2-hour shift change. This overflowing of tears and sadness was too much – I walked away, needing to be alone while I cried. I turned back once and they were moving the bed through the narrow pathway, out the door of the SICU. Now the real wait began – it would be at least five hours before we’d know if we would get our mother back.

We have a Prayer Quilt Ministry at church. I had never given it much thought because I didn’t see how a quilt could help during a crisis. It seemed like giving someone flowers – pretty, but not very useful when you’re sick or in crisis. While we waited for news, Pastor Gloria brought a beautiful prayer quilt with yellow and purple flowers. The threads are meant to be tied while saying prayers. The Pastor led us in prayer, and we all tied knots, in our own way trying to bind Mom to us.

During the long hours, waiting for news, we noticed that our family was not the norm. Most families leave one or two members in the waiting area, sentinels left to hear the news and pass it on to family members waiting at home. We were a unit, no one even thought of leaving. When the news came – good or bad – we would all hear it together. We brought coolers filled with soda and water, and backpacks filled with food. The two great grandkids played on a blanket laid on the floor. To them it was a picnic – indoors.

I think it’s because our family has been through the fire many times – that’s what gives us the “circle the wagons” mentality. We all gather together and hold strong against whatever assails us. We needed to just be with each other, to laugh and tell stories.

Humor was our shield. When I couldn’t remember what the date was, my sister said, “It must be a brain tumor!” That began a hilarious dialogue about all the things we could now attribute to a brain tumor. We concocted a plan to draw a welcome mat and door knob on Mom’s bald head, which had us laughing hysterically. In the months since, I’ve told friends about these conversations and they didn’t see the humor. It was only funny to us. Our way of laughing in the face of tragedy.

Just a little over five hours after it began, I looked up to see Dr. T walking towards our group. He moved like you see TV doctors move – gliding across the floor, white jacket fluttering around his legs. No smile…but his eyes were kind. He was brief – the surgery went well. They got everything as far as they could tell. Not too much bleeding. The tumor had begun to invade the skull so they had to excise some bone but Mom was doing fine. Now, we were told, it would be an hour or so until she woke up back in the SICU and we could see her two at a time. Dr. T flew back out of the room, in a hurry no doubt, to save someone else’s life.

We were ecstatic. There’s no way to convey the feelings of joy and relief. We were just purely happy.

It was nearly two hours before we were told that she was awake and ready to see us. Picture a herd of elephants running up the stairway, everyone chattering. When the SICU team saw us milling in the hallway, they decided to let all of us come in – quietly – as a group so we could welcome Mom, Grandma, Great Grandma back. She opened her eyes and smiled. She spoke – I don’t remember what she said. It was the act of speaking that let us know she had survived – she knew who we were. Becky was holding the prayer quilt and when Mom saw it, she reached out her arms and took it. We covered her with it, all the prayers of the last four days enveloping her. Now I understood the value of the quilt.

It’s been six months since the surgery. Mom has done remarkably well. She’s back to all of her normal activities – a little slower but getting better every day. She takes dilantin to prevent seizures and her doctor has told her that she shouldn’t drive. He didn’t tell her she couldn’t drive but the thought of having a seizure behind the wheel is enough to make her call one of us whenever she needs to go somewhere.

Was there any good that came of The Tumor? Was God in all of this? I believe so. My sisters, brother, and I are all nicer to each other. We say, “I love you,” without hesitation. We had not always treated each other well over the years. It wasn’t sibling rivalry, exactly, more a lack of trust. Families who have experienced intense chaos often become disdainful of each other. It’s like finding out your hero has feet of clay. But we were older and more mature now. This crisis brought out the best in each of us.