Tag: brain cancer

We’re Gonna Have to Build Our Own Raft

We’re Gonna Have to Build Our Own Raft

It appears I’m in that stage of grieving wherein I wear all of my mother’s jewelry. (I think it’s Grief Level 6. We’re also moving into Grief Level 7, which is when we begin cleaning out her house and start co-opting pieces of her furniture 

Update from the Brain Cancer Chronicles: Mom’s Almost There, but Not Quite There, and I’m Not Ready for There Anyway

Update from the Brain Cancer Chronicles: Mom’s Almost There, but Not Quite There, and I’m Not Ready for There Anyway

Let me tell you what’s weird in Brain Cancer World. Two weeks ago, when mom’s hospice nurse came to visit, she declared my mom’s condition “status quo, with deterioration.” I think that means, “Still living, but a little less than she was before.” Last Thursday, 

Mom’s Decline, and A Little Psychological Sewing

Mom’s Decline, and A Little Psychological Sewing

I thought maybe I should spare you an update this week, because I’m in a crappy, crappy mood (a friend asked Sunday how Mom was doing, and do you know what I said? “Oh, she’s totally dying.” The poor guy looked like I’d slapped him in the face). Mom has been declining again–no sooner did we pull her off hospice than she started acting like, well, maybe that wasn’t the best idea. She’s grown progressively weaker, and has become just sort of older-seeming. (This cancer of Mom’s likes to keep us on our toes, but I much prefer the happier surprises, you know?)

On Saturday, David and I had made plans to take the kids to see Mom in the afternoon and have a movie day. The kids were excited–they’d settled on Jumanji, because “cake makes me explode!”–and Mom had been looking forward to it. We went tumbling into her house around 2:15, a big bowl of freshly-popped buttered popcorn in hand, but Mom was nowhere to be seen. The house was quiet, and I could see a tray with an empty coffee cup and bowl sitting on the counter in the kitchen, so I knew she was alive (you’d have wondered the same thing). I found Mom upstairs–she hadn’t yet made it out of bed, though she was dressed, and her caregiver was with her. Mom was propped awkwardly on her pillows because she couldn’t support her weight, but her feet were on the floor. Her hair was a mess, and her eyes were barely opening, but she was chatting with Mary on the phone and laughing at the expression on my face. She couldn’t understand why I was so alarmed. Her caregiver, a kind woman who fills in on some weekends, was clearly overwhelmed–she hadn’t known what to do with her. The children, who’d come up to say hello and give her a hug, were shocked. I’ll never forget the look on Quinlan’s face–I’d forgotten that they’ve only seen Mom sitting up and ready for them.

It turned into the strangest afternoon. Another caregiver, one of our most trusted ones, came in to start her shift, which I’m not ashamed to admit was a massive relief (David and I were struggling to get Mom toward the bathroom at that point–he was afraid of hurting her and I just didn’t know how to maneuver her well enough. Mom’s usual caregiver came in and in two seconds managed to complete what we couldn’t in 20 minutes). We took turns hanging out upstairs with Mom as she tried to muster the strength to come downstairs, until we all finally gave up and wheeled her into my tiny old bedroom around 5 p.m., where she could watch the small TV she keeps in there. The kids looked at me and whispered: “Does this mean we’re not having a movie day?” Instead, David got take-out and we all crammed into the room with her to have a picnic in front of HGTV–it was Love it or List It, and for once, we all liked the couple’s old house better. Mom’s caregiver curled up on the daybed to chat while the kids and I wedged in beside each other on the floor (prayers may have been said that Quinn and Cian didn’t start throwing elbows), and David retreated back to the living room to give us a bit of space. Mom was in great spirits, considering the circumstances. The rest of us pretended to be.

It will surprise no one to hear me admit that things have fallen apart. We got an email from Quinn’s teacher that even though she’s been pulling in great grades, she’s become more disorganized, and more easily distracted. We’ve had issues with Saoirse very recently–some sneakiness, some attitude–that would seem characteristic for any 12-year-old except that they aren’t characteristic for her. The little ones have been struggling with sleep again, and have nightmares when they do. Quinlan’s nervous stomach pains are back. When we sat down with Saoirse last night to talk with her about her behavior, she broke into tears: it’s Grammy, she said. “I’m so nervous about Grammy.” And then David and I were on the couch with our arms wrapped around her wondering how the heck we’re supposed to take away the pain of a grieving child when we can’t handle it ourselves.

I’ve told David that I think I hit the emotional wall in December. We’ve been running and running headlong through this with my mom, and I just…hit the wall. I don’t know how to explain what that means other than, I suppose, I’m exhausted. I spent the first 14 months after Mom’s diagnosis struggling with the fear of losing her, and the worry about those sudden phone calls, and trying to manage All the Things–the kids, the mom, the paperwork, the phone calls, the bills, the scheduling–but with that horrid panic that ran through it all. All of those Things are still there, of course, but now it’s followed not by panic, but by the fatigue that comes with knowing what is inevitably coming soon: we’re here. We’re nearing the end of the road, and I’ve resorted to snarky comments to well-meaning friends. Because now I’m turning to my aunt, who is struggling with all of this, too, and David, with whom this marriage has seen much better years than the past one, and to our poor kids, and I’m realizing how this watershed has taken out more than just me. Saoirse isn’t just handling fear and grief: she’s struggling with the lack of routine, the tension that builds and breaks in the house, the constant sense that everyone is on edge. Her life, too, got flipped upside down in 2018: her mom is away from home a lot, there were no more vacations, no planning ahead, and her dad is stressed out. And it’s easy for David and me not to notice it because she’s a kid who tucks it all inside and, as the first-born, is trying to keep things perfect so everyone stays happy.

This is all kind of like an earthquake, maybe: the house has stopped shaking, but a lot of stuff is still falling off the walls.

David and I sat beside Saoirse on the couch last night, our arms wrapped around her. I asked her: “With Grammy, are you scared about how it’s going to happen, or sad that it’s happening, or all of the above?” Saoirse had her head tucked into my chest, and I felt it nod. “Yes,” she said. David looked at me over the top of her head, and I saw what he wasn’t saying: a) this is the hardest parenting thing we’ve had to do so far, and b) we’ve got to do a better job of it. So add that to All the Things: helping your own parent die in a way that’s graceful enough to make sure your kid knows that, no matter what, she is still safe and loved and that her family will be okay through all of it.

Man, this is hard.

Paul and Sarah come in later this week to be with Mom for a couple days, which will be a wonderful. Mom has a big scan tomorrow with a follow-up with her neuro-oncologist right afterward. I can’t imagine we’re not going to reevaluate Mom’s Avastin treatment–the cancer center is refusing to give her another infusion unless she gets surgery to get a port (her veins are too weak for an IV), and we need a hospital bed back in the house immediately, which can’t happen easily without hospice in place–but I’m certainly not going to volunteer that she stop it. Because as much as I’ll say that I think we’re almost there, Mom has surprised us before.

I told you she keeps us on our toes.

I’ll keep you posted, friends. David and I took a break yesterday from work (him) and Mom-related phone calls and emails (me) to take a walk with the dog, and we found ourselves, as we often do on these walks, making daydreamy plans about the future. It seemed almost like a reckless act in the face of what we’re living in right now, but the sun was shining, and the air was warm, and Mary and Tim were with Mom, feeding her homemade cookies and trimming her hair and keeping her company. Things may fall apart, but I think we also find a way to stitch them back together, as best we can.

My hope is that our kids will grow to realize this, too. That Saoirse and Quinlan and Cian will know: even in loss, the family left behind will be okay, together. And even when the stuff is falling off the walls?

We’ll catch them.

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

You guys, it’s been one roller coaster of a few days concerning my mom. (As of this writing, it’s all good–or as good as it can get outside of the brain cancer thing–so please don’t worry.) I have no idea how to break the week 

Mom’s Decline: Definitely Not How We Wanted It to Go

Mom’s Decline: Definitely Not How We Wanted It to Go

“Well, this isn’t how I thought it was going to go.” Cian said this to me the week before last. He was lying in bed beside me, and the clock said it was about four a.m. He’d been up since the middle of the night 

Mom’s Decline: Where We Are

Mom’s Decline: Where We Are

I was on the phone with my mom the other day, laughing about my parenting skills while David was away for work.

“I’m really good, Mom,” I told her, “really patient and calm, right up until about six o’clock.”

She laughed, because she remembers.

“But after six?” I continued. “Nope, I’m done. That’s when the shutters get closed on my brain and the patience goes out the window.”

My mom was listening to me. Sometimes she pays only half a bit of attention to me, especially when the TV is on in front of her (sixteen months into brain cancer, and she can still tell me everything going on in the news), or her caregiver is in the room, or when she’s simply tired or extra-weak that day. But that afternoon, she was listening, and talking, and it almost felt like old times.

“Well,” Mom said. “It takes a lot of patience to have patience!”

When I started to write this update last week, my post was a bit different than it is today. I was going to tell you what I tell everyone who asks: she’s hanging in there. (One acquaintance looked at me straight on after I told her this last month and went, “So, it sucks.” I almost cried. Because yes, yes. It sucks.)

What “hanging in there” meant is that, according to her December scans, her cancer had come back and was slowly spreading, but it wasn’t necessarily bad news, because she was physically holding steady and doing fine, and yay, isn’t that good news? Mom, her neuro-oncologist said, just needs to exercise more. That would help her. He told me afterward, in private, that her decline will be a gradual process–we won’t walk into his office one day after a scan and find that the cancer is everywhere.

It’ll just feel that way, I suppose.

Mom’s Christmas was so much better than last year’s, when she was at the very end of her six-week daily radiation/weekly chemo treatment and felt absolutely exhausted. Last year, all she did was lie on my couch and stare at the TV most of the day. We tiptoed around her, thinking it was the last time we’d have her at Christmas. This year, she sat in the very same spot, and needed a wheelchair to get from the front door to the living room, but she drank mimosas and giggled at the TV and ate (a little bit, mind you, and mostly cookies), and–most importantly–she was able to hang out and talk and laugh. It felt special. And she had a strong couple of weeks with us: we travelled with her to Maryland to see her siblings and their families, she went to dinner and Christmas Eve mass with us and my brother and sister-in-law, we took her and the kids to the movies (Frozen 2, because she had “no desire” to see Star Wars, and after Frozen said that maybe Little Women might be more her speed), and we took her out to lunch to help Cian celebrate his seventh (seventh!) birthday. She drank a margarita and ate most of an enchilada, and was more present for the day than she’d been in a long time. She did well, considering. It was wonderful. I found myself logging every moment in my little brain filing cabinet, because, well. Things have shifted.

David, the kids, and I snuck away (it feels like snuck away, anyway, because we haven’t done this sort of thing since Mom got sick) after the New Year because Santa dropped off some tickets for us to see the Notre Dame women’s basketball team play at Pitt (Santa just knows his audience, doesn’t he?). Tickets were five bucks a pop and David had points for a free hotel room, so off we went to Pittsburgh for the night. We had dinner at Southern Tier Brewing down by the stadiums, and ran into friends at the game. Notre Dame beat Pitt, and the kids got to meet the players afterward and get their autographs, and I do believe that’s the first time I’ve ever seen my girls starstruck.

(“MOM.” At one point Saoirse was staring at Mikayla Vaughn, who was dribbling down the court. Saoirse leaned over to me. “I want to be THAT tall when I grow up.”

Friends? Mikayla is six foot three.)

The kids were over the moon that we stayed in a Marriott (“A HOTEL! It has a BREAKFAST!”), and the next day we were at the Carnegie Museum of Natural History by 10 a.m. to ogle dinosaur bones and the sparkly mineral/gem collection. By lunchtime, we were all famished, I suggested noodles, and a quick Google search led us to the best meal we’ve had in ages at a Tiawenese restaurant in Squirrel Hill. It was an incredible 36 hours. It was special. It was us. And then it was over.

After Christmas, Mom started to have more difficulty waking in the morning, sleeping till about eleven o’clock or so, and she would head up to bed around nine or nine-thirty at night. That has progressed, and now she sleeps until twelve-thirty or even two p.m., and even then has to force herself to start the day. Last night she started up to bed at eight. Her body is so weak that she can’t walk a yard (with a walker and her caregiver) without sitting down. It takes her about an hour and a half to get from her bed to her chair in the living room each day. Her appetite, which was always small, has dwindled further: a protein shake, some Cream of Wheat for breakfast (er, lunch), maybe peanut butter on a slice of bread for dinner, and if we’re lucky, a lemon cupcake my Aunt Mary brings her. Sometimes, she’ll eat more (she had a bacon and scrambled eggs and toast the other night for dinner and it was the best news I’d gotten in weeks), other days less. We still try to bring her meals–chicken noodle soup, a homemade waffle–but they go uneaten.

Mom gets confused and more fatigued as the day goes on. She forgets things: how many children I have. Quinlan’s name. She asked me if her nephew, who’s married with three children, lives alone. I took the girls to see her yesterday, and they were quiet when we left. They told me that they used to be able to talk with Grammy like they talk to me, and now, she doesn’t speak to them at all.

It’s so strange. And frankly, it’s lonely. I’m sad a lot, and grumpy, and a little lost. From what Mom has told me, it’s kind of how she’s feeling, too.

I broke down to David on Saturday. Mom’s caregivers had called to let me know that her legs kept giving out from underneath her. It was snowing and sleeting outside, but all I wanted was to go down to her house and see her myself. He asked me what I had expected to happen as time went on, and I told him: not this. I never expected her body to give out before her brain. I say this full well knowing that her brain is what controls her body, and that I should not actually be surprised, but I don’t know. I think I expected her to go crazy, or go blank, or something else equally horrible first. To watch her be cognizant and aware of her body shutting down breaks my heart. And I can’t put her back together.

Mom has a new scan scheduled for tomorrow, followed by an appointment with her neuro-oncology team. I’ve spoken with them a couple times leading into this. It could be–what we’re all anticipating–the tumor causing this decline. It could also be her body just too full of medications and chemo toxins to deal. It could be lack of nutrition and exercise. It could be depression. This could just be the new normal, but one we’ll be able to ride out for a good length of time. Or it could be, well, a sign of what we fear.

I have never actually wished for someone to have depression before this moment.

When David asked me what I expected, I think he was looking for pragmatism, but my answer is–and has been– purely emotional. To be honest, I didn’t expect to still have Mom with us at this point, so now that I have it, and now that I’ve gotten used to being happily surprised at each appointment, I want to keep that going. She’s been so weak for so long I think it’s her sheer determination and stubbornness that have kept her body working as it does. But she, too, is dreading this appointment tomorrow. She doesn’t want to know what it might tell her.

I’ve been losing my mom for almost a year and a half now, but I still want to hold on to what I have left with her. It’s been almost a year and a half of grieving, but I don’t welcome the grieving yet to come. I’m not ready to be a person without her parents (I’m already down one, you know).

I’m certainly not ready to not have my mom.

The road ahead of my mom–of me–is one I dread walking. But then I recognize that we’re already on it (which is probably why I’m so tired?). What do I expect? A lot of bad things, quite honestly. A crap-ton of sadness. An overwhelming wave of new responsibility when I’m already struggling to manage the one I’m already on. I can’t tell you there’s a whole lot to look forward to. It’s a lonely feeling.

But that’s where we are now. Tomorrow we’ll hope that Mom can get up and out of the house, that the appointments will give us some answers, and that we’ll have, maybe, a better idea of how much road we have still ahead of us.

I’ll keep you posted.

For Mom and for Quinlan, a Field Trip

For Mom and for Quinlan, a Field Trip

SO. Let’s catch up, shall we? Quinlan, our second kiddo, is in 4th grade, which is The Project Year in her school, aka The Year That Just Might Do In The Parents Yet. One of the fall projects she was assigned involved visiting a place 

From My Bubble to Yours: the Anniversary of Mom’s Glioblastoma Diagnosis

From My Bubble to Yours: the Anniversary of Mom’s Glioblastoma Diagnosis

It’s been a year since it all happened, my friends. Last year, a day after the sadness of 9/11, when we took a breath and gave our loved ones an extra-long hug and carried on, on until the next year, is when our story with