Tag: glioblastoma

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, 

Rest in the Time of Coronavirus (and, um, Brain Cancer)

Rest in the Time of Coronavirus (and, um, Brain Cancer)

I was talking with my brother, Paul, sister-in-law Sarah, and David this week, when Sarah and I got to chatting about writing. She’s diligent, writing 500 words every morning at her computer before starting her work day, and it impresses me. (She also walks miles every day, does other exercising every day, cooks elaborate meals every day–meanwhile I sit on the couch to type this in the sweats I’ve been wearing for two days and I’m about to throw some shredded chicken and store-bought enchilada sauce in the oven and call it dinner. I know women aren’t supposed to compare themselves, but…you guys, these sweats are from Old Navy. They’re threadbare at this point. It’s all I’m saying).

My point is, Sarah is hustling. My life is so anti-hustle these days I can’t even rest properly. (Anyone else not able to sleep anymore? I know it’s not just me.)

During our conversation the subject of this blog came up, and Paul thanked me for finally posting something last Friday that wasn’t about the demise of our mother and likewise horribly upsetting. David, meanwhile, admitted he hasn’t even been reading my stuff because it’s been such a drag.

(Sarah, thankfully, turned to me: “You’ve got a funny line in there once in a while! It’s okay!” Guess who’s my favorite relative NOW, boys? Guess who??)

I keep writing here because I don’t want to rest on it, even when what comes out of my brain is more weep-weep and not enough woohoo. You get what you get, dear reader.

We happened to be talking in person this weekend, outside my mom’s house, standing six feet apart in a loose circle on the front lawn and driveway, because Paul and Sarah had flown in from Wisconsin to be with her. David and I took the children and Riley down to see them Saturday afternoon, in the best way we can under the weirdness of now. I know you’re giving us the coronavirus side-eye, but I told you (remember all those sad posts?): Mom is fading. Caregivers have made three 911 calls in two weeks because Mom is just too weak. This was probably the last time she’ll be able to communicate with Paul and Sarah in person. It ain’t good, people. Imagine it’s been snowing out, and we’ve dragged out the sled to our favorite hill, but now that hill is covered with a sheen of sheer ice. We know that hill is icy, but we’re already on it, and there’s nothing to do but take that scary trip all the way to bottom. Do you see what I’m saying?

(You know? I can’t imagine why they all say I’m so depressing lately.)

We hung out for about two hours, staying out of the house as a group, with one of us regulars going to sit for a mom for bits at a time. Thankfully, she took some of that time to nap, which made her caregiver happy. Saoirse remarked (while the little ones played, she hung out on the periphery of the circle, quietly listening to the adult conversation sharing more than her tween ears should probably hear) that it was really nice that we grown-ups were all actually talking. Without a TV or phones out, I suppose, she noticed a difference.

I daresay: we rested.

We waved goodbye and went back home. Sarah cooked dinner at the house for herself, Paul, and my mom, while David and I prepared our own family dinner at our home. We pulled the kids out back for a campfire and roasted s’mores. The children asked when they’d get to see Paul and Sarah again this visit, and were disappointed in the answer that those two hours that day were it. The weather Sunday was rainy and cold, so the five of us stayed indoors, together, relaxing. (I heard that Paul, Sarah, and Mom watched Wine Country.) I wasn’t glued to my phone that day, you guys. I didn’t constantly check it for texts and phone calls about Mom. Frankly, I didn’t know what to do with myself, but I knew Mom was happy, David wasn’t stressed over work, and the kids were content, so I just…sat with my family.

I rested.

(See, David and Paul? That part was kind of happy.)

I’m working on it, kids. Not quite sure when the funny will be back, but I’ll let you know how we end up once this sled hits the bottom of that hill. Thanks for coming along for the ride, happy days or no (and David did say he went back and read the last of these posts, for what it’s worth. I hear there was a funny line or two to be found in them). Meanwhile, Paul and Sarah are masked up and on their way back to Wisconsin as we speak. My phone is back to my side, charged, volume up.

At least these sweats are comfy.

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 

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 with what I thought was the stomach flu. See, Quinlan had started a barfing marathon a few nights before, then it fell on David, Saoirse, and me simultaneously like an avalanche of awful a couple of nights later (because like all things evil in the storybooks, the stomach flu descends during the night). So when a poop bomb went off in Cian’s room at one a.m., and continued to go off for the next three days (it turns out it was the actual flu this time. Silly us!), well. We were used to digestive grossness by then.

Cian, though? Well, our poor buddy was in shock.

And so it became the theme of our January: this isn’t how we thought it was going to go.

My mom had her brain MRI last week, with a much different follow-up than usual with her neuro-oncologist and his nurse afterward. It’s not good news, friends.

The Avastin treatment Mom has been receiving is finally failing to keep the tumor’s growth at bay. She’s been so weak and tired for no other real reason than the cancer itself (who’da thunk, right?). You know already that her coordination has gotten much worse: she has a hard time moving her feet to walk, and needs prompting on basic cues for simple tasks she used to do on her own (she has a hard time telling her feet what to do to walk, for instance, or sometimes needs direction on doing things like drinking from a straw or putting on lipstick). Her coordination has been impacted partly because the growing lesion is in the occipital lobe of her brain, which is where all our visual processing happens. When that center is impacted, our brains can’t tell our feet and hands and muscles to do what they’re supposed to do. In addition to this, as I understand it, the tumor’s expansion is starting to cut off the pathway of communication from Mom’s right brain to her left. This has scared me and Mom enough that Mom asked me to call her doctor to find out what, exactly, her time is going to feel like from here to the end. The nurse predicts a lot of sleeping, and less eating, and maybe even loss of verbal communication. But for the sake of my poor soul, we’re just going to ignore that last part for a while.

When I say all this, please know that Mom is fully cognizant of what’s happening. Once she’s up for the day, she can hang out and chats and laughs just like usual–she just gets tired more easily, and when she gets tired, she gets more confused. Last Sunday she wasn’t able to make it to Mass or Saoirse’s basketball game at one p.m., but we all got her out to lunch (it took an army, but we did it) and afterward at home she was laughing with the kids as they played a trivia game in the living room with her and her caregiver Myine. So it’s not like she’s bedridden or sleeping constantly or anything like that. It’s just…well, it’s just that she’s finally at the end of what her physician called “a fairly good run.”

Mom and I have been doing a lot of talking. She wishes she’d been able to take one last vacation. She wonders what it will feel like. Today, she wished she could just “go” now so that she doesn’t have to spend the next several weeks thinking about dying. She worries about her sister, and who will take care of her cats, and reminds me that my brother is a good guy and I’m a good woman. When the doctor was explaining all of this to us last week, I saw my mother looking to me and Mary for our reactions. I had been staring into space. Mary’s eyes had been red. I cried on the phone with her once, but can’t do that anymore. She needs me to not get sappy. But this was the very first time in sixteen months Mom’s been told by her doctor how long she might have left to live.

It was so hard.

It’s good that Mom’s talking about it. When my dad was sick, he didn’t say much. He and Mom never, she said, talked about it. I had one heart-to-heart with him–I’d been leaving their house after a visit, and I remember standing to one side of my car, and he was on the other, and my pregnant belly felt huge, and Dad was thin and wrapped up in a coat. I asked him, in a way, if he was ready to go. At this point he’d been fighting pancreatic cancer for over a year, after a diagnosis that was so shocking I’ll never forget the look on his face when we found out (it was in an elevator at Johns Hopkins, and he’d read the word “malignant” on a report). And he said yes, he was okay with it, but he was very, very sad to leave us. I later told Mom this, years later, and she shook her head: “No, he wasn’t,” she said. “He wasn’t ready to go.”

Mom has turned down the offer of another, super last-ditch chemo–something called CCNU that would extend her life by another couple months but make her feel terrible. She will continue with the palliative infusions of Avastin every three weeks, which has been working to keep her brain swelling down. Her joints and muscles hurt, but her head, thankfully, does not. I am looking into hospice care, and hospital beds, and having more tough conversations with her. I just heard that she’s having trouble swallowing her medications, and try not to feel fear. Instead, I will buy her a pill crusher. I will not cry in front of her, but I will tell you that I will cry in Wegmans, and in front of a nice mom named Steph who most definitely probably did not expect me to randomly cry at band pick-up, and with my mom’s caregiver Melody, who gave me a hug that broke the dam (why yes, this all did happen during today’s daylight hours. Banner day, I’ll tell you!).

Her’s the bottom line of all of this: last Wednesday we were told we can hope to have several more weeks with Mom–maybe even three months. We know that we are lucky. Even if I had assumed Mom would still be here to see eight grade graduations, Saoirse’s first day of college, my next book published with a dedication to her. Even if I had thought we’d finally get her on that one magical vacation.

Even if this isn’t how we thought it was going to go.

I was talking with a friend Saturday who has a very sick relative, and she told me how he’s held on to life despite the odds. She’s amazed by it. But even if someone has the faith in life after death, it doesn’t negate how good life is here, right on earth, with our loved ones and our sunshine and our food. Of course they want to hold on. Even when it’s bad, it’s still so very good. Even when it’s scary, there’s somebody close by who loves you. Very few people, I’ve realized, are ready to go while there’s still more life to live. Mom was right about Dad.

Mom needs us to walk her the rest of the way home. So no crying on the phone for me (I might still allow Wegmans, because Lord knows I can’t control that). She has us–her family and the caregivers who fight for shifts for her, and those cats that she loves so much even though they still sometimes poop on the stairs. She’s got an army behind her.

Whether she’s ready or not.

Despite the fact that this is most definitely not the way we thought this was going to go.

We are here.

 

 

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 

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