When You Get The News
written by: Kate Leo
I peek tentatively around the elevator door, scanning the room for a nurse or receptionist. Finally, I catch the eye of a brown-haired, middle-aged woman on the phone at the front desk. She sees me and raises her eyebrows inquisitively.
“Do you have a mask?” I ask. “I totally forgot mine,” I add as I nervously approach the counter, quickly glancing around the waiting room filled with people waiting to receive their chemotherapy or infusions. She gestures to the box next to the check out window and I grab the thin, yellow, papery mask, wrapping the elastic around my ears.
She pulls the receiver down from her mouth, covers it, and whispers, “Can I help you?”
“Is Mary Ann Nielsen already here? We are supposed to be meeting with Dr. Lair,” I say, looking around the room but not recognizing my mother in the crowd.
She points to the chemo/infusion room. “She’s back there.” Another whisper as she motions with her hand. “Have you been back there before?”
I nod yes and gesture back to her that I will just head back. I give her a thumbs up and she responds with a smile and a wave, sending me to the treatment room where mom has already spent countless hours reading, talking to friends, and looking at her iPad while receiving various treatments. As I come around the corner, I see mom sitting up tall in the infusion recliner, Dr. Lair seated in her wheelchair next to her. A petite, white-haired lady stands up as I round the corner.
“Am I missing the party?” I ask jovially, smiling at the trio. My mom grabs my hand and glances at the white-haired woman.
“Before we do anything, Kate, this is Mary Ellen. I have wanted the two of you to meet for so long and now you finally get to.”
Mary Ellen greets me with a warm smile, as she engulfs me in a hug. “Kate, it’s so nice to finally meet you. I feel like I already know you; your mom talks about you so much.”
“Same. She talks about you all the time too,” I respond, returning the hug. We hold each other for a moment, two strangers connected by a mutual love for my mom. I sense an energy about her that pulls me in and I like her instantly.
“I won’t stay,” she says. “I know you all have big decisions to make and this is the time for family, but it was so nice to finally meet you.” Her kind eyes shift from me to Mom and she stoops down to hug Mom and give her a gentle kiss on the cheek. “Love you Mary Ann. Bye Kate.”
“Love you too, Mary Ellen,” Mom responds, looking content but weary. “Thank you so much for driving me today. I feel better already with a little fluid in me,” she says, gesturing to the IV in her arm.
“Yes, thank you so much for bringing her, Mary Ellen. I just could not make the timing work today,” I chime in, giving her a weak smile, thankful for her but aware that Dr. Lair is waiting to start this difficult conversation.
“OK,” Mom says matter-of-factly. “Let’s hear it. What are we dealing with?” The blank expression on Dr. Lair’s face was unreadable. As I braced myself for what he was about to say, I thought about the events of the past month that led to this moment.
Sun streamed through the windows of the infusion room, reflecting the beautiful September day. The Iowa summer and all of its excitement had wrapped up and we were into a routine, with me teaching high school English and my three boys, two freshmen and a junior attending the school where I taught. Mom had been struggling with Covid since August so our routine also included frequent doctor appointments and ER visits, as well as days where she just needed extra fluids. The painful cough brought on by Covid had led to some hairline fractures in her ribs, causing her extreme pain when she moved or even took a deep breath. Six weeks into her Covid illness, the pain had not subsided, so her breast cancer doctor, Richard Deming, decided it was time for a PET scan. In truth, she was a little overdue for her routine 6-month scan but just couldn’t find the energy to get it done. When we met with him to go over the scan, he explained that the PET scan showed spots of cancer all over her body – lungs, lymph nodes, bones, liver, and breasts, 37 that he was able to count but probably more. So the big question was – had her multiple myeloma finally metastasized at a rate faster than the treatments that had kept it at bay for 14 years or was this the breast cancer she was diagnosed only one year prior but declared gone from her body in January, rearing its ugly head again? She had gone through some relatively pain-free biopsies the week before and we were here today with Dr. Bradley Lair, her myeloma doctor, to get the results of those biopsies and hear her treatment options.
“Well,” Dr. Lair began tentatively, “it’s definitely the breast cancer. It’s everywhere. All those spots that showed up on the PET scan…the breast cancer is ravaging your body.”
“Well how on Earth did that happen?” Mom snapped. “When they went in to do the lumpectomy last January, the lump was gone. All those radiation treatments were supposed to guarantee that we got it. What happened?”
“That’s hard to say. We were confident that we did get it. Very confident. And you had been feeling so good all summer long. That’s the terrible thing about cancer; it can be very sneaky.”
“OK, well, now we know. What do we do about it? You know I did not do so great with the last rounds of chemo you gave me,” Mom slumped in the chair, her posture showing defeat.
Back in October of 2021, Mom was slated to receive 12 rounds of chemo, followed by a lumpectomy, and then 20 radiation treatments to guarantee that the breast cancer was blasted out of her body. After six chemo treatments, she begged me and the doctor to let her quit. Mary Ann Nielsen is one tough woman; everyone who knows her knows that she is a force to be reckoned with. So to see the chemo destroy her the way it did, everyone who knows her well was in agreement that we should skip the last six treatments and just go for the lump. At the surgical consultation, the lump was nowhere to be found. A miracle had happened. She received radiation treatments in January and February, regained her strength (and her hair) in the spring, and went on to have a fabulous summer with her family and friends. We were in the clear. She had beaten cancer for the second time. But here we were again.
“What do we do about it? That’s a great question,” Dr. Lair began slowly. “The chemo we did last October practically incapacitated you. I don’t have any treatments available for you except that same one again, or maybe something even stronger. And I have to be honest with you. Last time, we were battling one lump. There is a lot more cancer in your body now.”
A heavy silence filled the room and I noticed that Mom’s eyes grew misty, but she quickly blinked back and brushed away the tears. She looked back and forth from Dr. Lair to me.
“So then what? How long do I have?” Her voice was thick with emotion.
“There is never an exact timeline for these things but my best guess would be three to six months. This cancer appears to be spreading fairly aggressively.”
“So I am just supposed to sit around and wait to die?” Mom asked, her voice breaking.
“How about taking the time to do all of your favorite things? You could eat at your favorite restaurants, visit your favorite stores, spend the holidays with your family, get together with friends. If we start an aggressive treatment, I promise you will not have the energy for any of those things,” Dr. Lair’s voice trailed off.
“Kate, what do you think?” Mom looked at me, her eyes now brimming with tears, her shoulders hunched down making her appear frailer than I had ever seen her look.
I had no idea how to respond. My mom is a fighter; she always has been. She fought as a child to stay strong when all of her brothers died and her father ran out on her and her mother for weeks on end. She fought to be a good daughter so her mother would not have one more thing to worry about. She fought for her marriage, when that same mother did not approve of the person she had chosen to spend the rest of her life with. She fought for a fair and equitable education for my brother, when it became evident that he, because of a brain injury at birth, did not learn things in a traditional way. She fought through night school so she could receive her undergraduate college degree at age 54, graduating with honors. She fought through a cancer diagnosis given right after her twin grandsons turned one. She fought to have the chance to know them and have a relationship with them. She kept that cancer at bay for years and had seen them turn 14 the previous May. This woman did not know how to stop fighting. So I knew that going home and waiting to die was not in her nature.
“I don’t know,” I responded. “Would you be OK with doing nothing?”
“I have absolutely no idea. I’ve never tried it,” and with this, a rueful laugh escaped her lips.
“We do love Christmas a whole lot. And we definitely don’t wait to start celebrating. We can do it up huge this year. Start in October – in a few weeks really, when the Hallmark movies start. Wouldn’t it be better to feel halfway decent for that and really make it wonderful?” Selfishly, I was not sure I would be able to nurse and nurture her through another stint of chemo like the one she did last October.
“That does sound nice. The twins and I haven’t baked cookies in ages. And I want to see you all decorate my tree and my apartment one last time. But I just can’t imagine not doing anything to fight this. Does this mean I’m giving up?”
“You have fought so hard for so long,” Dr. Lair began. “Please don’t think of it as giving up. Think of it as a gift you can give your loved ones. The gift of being present with them in order to create these last memories. With your generous nature, I know you would want to give this gift to everyone who loves you.”
“I like thinking of it that way,” she said. “Well then, that’s what we will do. We will have a beautiful and magical fall, filled with everyone’s favorite things and tons of memories. OK, yes, let’s do that. Yup. Ok.” She nodded slowly, as if convincing herself.
“With your terminal diagnosis, you qualify for in-home hospice, so we’ll have the folks come and meet you by the end of the week and get all that in place,” Dr. Lair said, standing up, reaching for Mom’s hand. “Mary Ann, it has been a privilege to be your doctor.”
“So I just won’t come back here ever again? No more treatments or anything?” Shock and realization of what was happening registered on Mom’s face.
“You can always come in if you need some fluids to get your energy levels back up, but no. This is the end of the road, treatment wise. You can always pop in to say hi. These nurses will miss you.” He puts a hand comfortingly on her shoulder.
I help Mom from the infusion chair to her wheelchair and begin to wheel her out of the room. Every few feet, we stop so she can say goodbye to her nurses. She mentions their husbands and children by name and the 14 years she has spent with these caregivers hangs heavy in the room. Down in the parking lot, as I help her into the car and load her wheelchair in the back of my van, I see her shoulders start to heave as she sobs quietly in the front seat.
We didn’t decorate the apartment for Christmas, put up the tree, or bake cookies. We met the in-home hospice nurses three times over the course of the next week. Mom liked them and looked forward to their arrival but she kept mixing up their names and arrival times, calling me in a panic when she thought one was supposed to be there or when she failed to remember who any of them were. We didn’t eat any of her favorite meals. Nothing sounded good to her and she didn’t have the energy to eat. I would bring her up a cup of soft serve ice cream from the machine in the little cafe of her apartment complex, but she often left it untouched. At the end of the first week, I showed up early Saturday morning with donuts, her favorites- chocolate cake and sugar raised, to find her slumped in the corner of the room, talking about how the boys wanted to make a fort and she needed to get the furniture arranged a certain way so they could hang the blankets. We had her with us for five days after that and the moments of clarity were few and far between.
The hospice house in a nearby suburb said they wouldn’t be able to take her until around noon on Sunday so I spent 24 hours standing watch over her. The Golden Girls played softly on the TV in a constant loop, keeping me company from the time the last Hallmark movie aired until the regular programming started at 9AM the next morning. At one point in my bleary-eyed, mid-morning weariness, I looked over at Mom and her eyes were wide open, fixed on the corner of the room.
“Kate,” she whispered. “Come here. Do you see them? Do you?”
“Who Mom? No, I don’t see anyone.”
“There are angels…right there.” She pointed a weak finger at the corner of the room where the wall met the ceiling. “Oh, they’re beautiful,”
“I bet they are, Mom. I bet they can’t wait to welcome you into Heaven. They are so lucky. They get to have you forever.” Tears streamed down my face as I looked over at her.
We got a few more moments of clarity at the hospice house and we held on to those moments with every fiber of our being. On Monday night, after she had been asleep for a solid 24 hours, she awoke with a start and joined in the conversation that was happening at her bedside as if it was the most natural thing in the world. Her voice was strong and natural until she realized where she was and what was happening. She started crying and asked if it was OK for her to go. I told her absolutely it was, while at the very same time, I wanted to cling to her with all of my being and beg her never to leave us. She needed to recite a list of people and have me tell her, one by one, that each person on her list was going to be OK if she left. We called her friend Jane on speaker phone and Mom told her goodbye. They had a sweet conversation that I am guessing sounded a lot like their normal, day to day conversations, minus the part where they both bought something from QVC. She checked on all of the adults, all of the boys, everyone she loved, one by one. What a Mary Ann move – she’s being summoned into Heaven by glorious looking angels and she’s busy going over her checklist just one more time before she can go. She said her mom, my Grammy Carey, was there, and my dad was too, and it was Christmas. I honestly can’t think of any better version of heaven for her. Hopefully Karen Carpenter was there too, singing her home.
She fell into a deep and peaceful sleep after the checklist was done and I sobbed, my heart shattered. She didn’t wake up again and took her last breath the following night. I can only imagine the glorious welcome into Heaven she received. As Father Tom “Tank” DeCarlo said when he came to give her last rites, “Mary Ann, you are absolved of all your sins, not that you had very many to begin with.” The hospice nurses, in their kind and gentle way, came and wrapped my mom’s delicate hands with their papery thin skin around a rosary. God carried her home and those left here on Earth can take comfort that she is singing and playing piano with the angels now. Everyone who knew her was changed for the better and we thank God for the time we had with her. Rest in peace, Mom, and thank you. I’m everything I am because you loved me.
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