After Mom Died

"After mom died.." That's where I am now. It's also a phrase that's hard to get used to. Or when telling a story, and having to say "before mom died.." It just doesn't seem real. I imagine that feeling will fade somewhat, but I can't imagine it not stinging as the words come out. It almost feels like some sort of religious event in history... Before Mom/After Mom. My world was totally different then and now. That traumatic event will probably shape me for the rest of my life, so in a way, it's fitting.

I've also come to realize that just being with mom was home. It didn't matter where we were - I felt like I belonged when I was with her. From Wrightsville Beach, to Carolina Beach, to Disney World, to Atlanta, to Vegas, to New Orleans, to NYC, to Canada, to UNC Hospital. And like a mom, she always had what I forgot at home, stashed away in those huge pocketbooks she carried around. So now when I try to do all of the things that I did before when I was with her... I feel a bit like a fish out of water. Even just being with family... I find myself looking around for mom. That's something that resonates from infancy, doesn't it? I was always a mama's baby. She would tell me she used to sleep in a recliner with me on a pillow on her stomach when I was a baby. And then as I got older, I was always still right underneath her, constantly looking for her if I wasn't next to her. As I continued to get older, naturally I became more independent, but no matter what, I usually always ended up being right next to mom before too much time passed.

Even through college, I would call her and tell her about funny things that happened, or have more serious talks... like when I had to call and break the news to her when I failed a class my senior year. I think, in a way, she was just thankful I wasn't crying because I was pregnant or something. I feel like pregnancy before settling down is one of the top 5 biggest fears for a mom. Not because it never works out, but just because it's really hard and changes your life forever. So when I told her the circumstances of me failing a class, she was concerned but we laughed about it before we hung up. We could always find the absurdity of our circumstances humorous - after I had kids, this seemed to amplify. We always felt that staying upset about something wasn't very productive. Don't get me wrong - she would stew about things, but she could always laugh about it too.

I feel like that's the biggest part that's missing. Me being able to talk about everyday things and laugh hysterically about them, despite the hardships. I keep waiting for the conversation to happen, that shifts this profound sadness to laughing. Obviously, that will never come when she facilitates that conversation, but it tends to keep me in a sad place that usually could be smoothed over by our talks.

As we reached the end of mom's journey, I found myself reflecting on the months leading up to it. Nothing was sudden. She just slowly deteriorated in front of me, and it made me realize that I couldn't remember her "last times." 

Like - when was the last belly laugh we shared? When was the last time I saw her walk unassisted? When was the last time we shared a cup of coffee together, had a REAL conversation that made sense, and watched the Today show like we always did when I was with her in the mornings? When was the last time I called her, just to say hi as I was riding in the car, or had a moment in the mornings to call her when the kids were distracted? When was the last time she truly enjoyed a meal, and didn't force down food just to please us? When was the last time she went to one of her favorite places - the beach - and got to see the ocean? Chemo kept her away for the most part, but she would occasionally go rock on the porch at my Aunt Claudia's beach house while visiting. And when did I officially go from one of her favorite people to be around, to "Nurse Ratchet" as she liked to lovingly refer to me, as I became primarily a caregiver, and a daughter and friend second. When was the last book she read to my kids? When was the last time she cooked a meal by herself, when I was able to sit and watch her buzz around the kitchen, without fear of her hurting herself or needing assistance? When was the last time I saw her name pop up on my phone to alert me of a text message from "Mama?" When was the last time I got a facebook notification, telling me she tagged me in another recipe that we would never try, or a funny meme that only we thought was funny? When was the last time I saw her rocking in her recliner and while casually skimming through her ipad?

That's the problem with being the caregiver. You see it all. You're there everyday and you don't notice when things will never be the same. It just gradually happens and then you realize after it's too late. It seems like just a bad day at first, then you realize it was actually the end of a chapter instead of just a plot twist. 

Aside from missing her more than I can say, those are the things that I regret not noticing. I was so consumed with taking care of her and making sure nothing was overlooked, and taking care of my kids in between those times, that I missed a lot. But I'm happy to report that I had help. My husband has been my hero during all of this. He picked up the slack when I forgot school things, when I didn't have the energy to cook, when I needed a break. He did it all too, while also working his normal job during a pandemic, grieving for the mother-in-law that he loved, and watched her slowly slip away from us during the chaos. He didn't question me when he would offer a suggestion of me taking a break, and I was firm in my response, "I'm not leaving." He would just nod and he helped however else he could. It was awful and uncomfortable for him, as he's also never lost someone close to him. But he didn't have a lot of time to register what was happening, while he was taking care of me, while I was taking care of her. I witnessed the shock on his face at the dinner table one night, as the cancer slowly took over her brain and she couldn't even feed herself anymore. It was more obvious to him in that moment because he wasn't quite as involved in her care, as he was of mine and our children's care.

We also had family and friends that stepped in and helped in so many ways, as best as they could during the COVID pandemic. From taking the kids for the day, to providing meals and gift cards, to lining up cleaning services so that was one less thing that I had to do around their house, to sending boxes of food and goodies to snack on throughout our time there, to just being at the house, helping me make sure mom was safe as we tried to move her, and distracting the kids from time to time so that I had time to just sit with mom on occasion. I found it hard to tear myself away from her, but it wasn't physically possible to be in there for every breath, no matter how much I insisted I wasn't going to miss one.

The nights began to feel like I was taking care of a newborn. You'd tuck her in for the night, not knowing if you'd be awoken in the middle of the night to tend to her. Was it going to be a smooth night or a rough night with a lot of broken sleep? It got to the point where we discovered someone needed to sleep in the room with her to try to prevent her from hurting herself, in case she insisted on getting up. Her cousin, Debbie, and I started rotating nights, sleeping in the recliner beside her bed for the last 2 weeks or so. 

She stopped talking, or noticing if the TV was on, or if there was a light on in her room, since she was always scared of the dark and had some sort of light on at night, always. I guess I should say that I'm not sure if she noticed towards the end, but we continued to keep the TV on, and the lights on, because we knew it's what she wanted regardless. We continued to dress her in her favorite shirts that were always in her comfy clothes rotation.

She always wore shirts that were entirely too big, because that was what was most comfortable to her. I always giggled when she'd ask people if certain clothes came in a size "chubby." She never hit that goal weight (who knows what that actually was, but she always negatively commented on pictures of herself), and she always insisted that she needed bigger sizes as she called herself "fluffy." I wish she would have agreed with us when we would insist that we loved her just the way she was. When the kids reflect on her now and in the future, I guarantee they'll never comment on her stomach or bottom like she always would, but instead, they'll reflect on the way she would hug and kiss all over them when they'd run to embrace her, or crawl in her lap. Or the way they'd read through books and laugh as they found new ways to read them, or pronounce words. Her laugh was the best, and the kids eventually fell in sync with her, when after a big, belly laugh... they would all sigh in unison. And then start laughing all over again because they all sighed at the same time. She'd always watch Millie, playing and she'd say "She's so smart!" Or she'd rock with Chase in her recliner and say "Are you my baybay?" And he'd always say "yes." And then when I would get back to my house, I'd rock with Chase and say "Are you my baybay?" And he'd say "Yeah, but I'm Anna's baybay too." For the record, he still says it.

I just miss her. No I don't cry all the time anymore, but I do still cry in certain moments. I'm sure that'll always be the case, but I truly don't think there will ever be a time that I don't simply miss her. I dread the holidays. I dread the birthdays. I'll try my best to make her famous cream cheese poundcake, but I'm sure it won't taste the same. That's another awful thing that comes with the territory - dreading the things I used to look forward to because mom always had a way of making special days feel warm and cozy. I know the kids will still provide holiday magic, but I remember glancing at mom last year as the kids were opening her Christmas presents and the tears in her eyes were welling up. I think maybe she sensed this might be the last time. I'm sure that was always in the back of her mind anyway. Craig recorded a video of me catching her getting teary. It's such a sad, but special moment to be able to watch now. Of course, hindsight is 20/20. Especially in the year 2020 - the worst year ever.

Mama's Eulogy from her Graveside Service on August 11th, 10am

“It is well with my soul” 

Paraphrased, these were the words mom said to her cousin, Chris, back in May. I had no idea the conversation took place but was so happy when Chris told me about it a couple weeks ago when things were really grim. I probably don’t have to tell y’all that mom wasn’t one to talk about serious things — end of life included. I tried getting the palliative care doctor to help me have conversations with her and somehow she always ended up shifting the conversation and she’d be joking about something not really even relevant. I still don’t know how she did that. 

That was her though - she was great at making even the worst conversations bearable. A snide comment here, and a witty comeback there and we’d be laughing til we cry. And we would relive the conversation several more times more and laugh just as hard later, or we’d try to retell the story to some unfortunate person. It’s strange but no one really laughed as hard as we did and we’d always comment that it’s never as funny when you have to explain it. And then we’d probably laugh some more. I remember looking back on some Facebook comments, remembering how hard we laughed when we made them. It seems like yesterday, but also so long ago as I try to remember why it was so funny. We would just get in moods and find the simplest things hilarious. I know I’m not the only one who has experienced this with her. She just had a way of talking that made her commentary entertainment by itself. If we were able to turn our trips to ATL for chemo into us flying around the cancer center in a wheelchair while laughing and carrying on, then it’s safe to say that nothing was really out of bounds. I will say that she never really appreciated my wheelchair driving. 

I loved that she was able to gracefully make fun of herself - she never took herself too seriously. She would wave at someone and then do that really squawky sound as she pointed out her flappy arm fat. Then she’d really draw attention by energetically waving to everyone saying she was a flying squirrel. Or the time we were in Disney World and we rode this crazy coaster that put us in a little car that moved through — Winnie the Pooh I think, really scary… There was a part of the ride that I noticed had a mirror as we slowly rode past it. I then realize mom is waving frantically and saying “Oh that lady has the same shirt as me!” I had never laughed so hard while I tried to explain she had been looking at herself in the mirror. 

She was just the best to be around and she would often surprise me with details about herself here and there. I didn’t find out until this past fall that before she got into a bad car accident when she was around 17 years old, that she had been taking flying lessons and originally wanted to become a pilot. Can you imagine mom as a pilot? She would have to work for Southwest or something because there is zero chance that she would conform to those boring rants they have to do on those other commercial flights. She had way too much twang - I don’t even know if they’d be able to understand her. And does anyone know if there was a height requirement, because that could also be a problem. At all of her doctor’s appointments, she would try her BEST to tell them she was 5’1”. I guess it didn’t matter much because they never checked and I got tired of correcting her, so I stopped. It obviously meant a lot to her, so over the last year, I gave her those precious 2 inches. 

I know there are so many stories that are worth sharing from Vegas, the beach, childhood, parenthood, and everything in between that we’d be here all day reminiscing about her and how much we will miss her. I hope we continue to talk about her - all the time. The bottom line was that she loved to laugh. If she was laughing, she was having fun. I hope that we can take a lesson away from her in that you should retire early if you can, because you never know what life will bring after that long sought after retirement. Then take all of the trips, eat all of the cake, and finally, fried chicken everyday is acceptable - especially if it’s her mama’s or from bojangles. 

Our family really appreciates all of you coming out here to remember and celebrate mama. She would be be grateful and humbled, and maybe surprised to see a few faces. And we are grateful and humbled too, but not surprised at the faces. She was loved beyond measure.

Turning the Page

As I read my last blog entry, it truly feels like a lifetime ago. It was written before the pandemic took over, and while we were still hopeful that we would soon hit more stability in mama's journey. The last 4 months have been so crazy. Trying to juggle this new way of life where we rarely leave home with our 4 and 6 year olds, and can barely see any of our friends and family beyond Facetime or technology has been daunting by itself. But when you couple that with schooling, and trying to care for my mom who is battling metastatic breast cancer, who also lives with my 87 year old grandmother. It's a recipe for chaos and ever-changing plans.

Over the last month, mama ended up with the shingles. She started to have severe pain on her side, and we assumed, and before we knew what we were dealing with AND based on scans and history of bones breaking due to cancer spreading, that perhaps her rib had completely fractured (it had showed signs of disease in all of her past scans). Since there's not much you can do for a broken rib, her doctors decided to start her on oxycodone until we could figure out what's going on. At the very least - they wanted to relieve some of the pain. Mom is allergic to codeine so we were wary about her dosage and monitoring her closely. She began taking it and after 24 hours, she seemed to be experiencing no side effects, but the same pain was present unfortunately. I left to go home for a couple days, only to return quickly when mom began complaining of a bad rash. I immediately thought it was a reaction to the codeine, so we stopped that and started on a different pain med. Nothing was helping. We did a video call with one of the nurses and showed her the rash, and she was able to quickly determine that it was shingles.

Typically it takes about 2 weeks to cycle through that, but because mom's immune system was so suppressed, she is STILL battling over a month into this. The nerve pain takes her breath away and she cringes as she waits for the burning sensation to subside. About 1 week in, she began sleeping so much, and eating so little that I got very concerned about the overall picture. Not only that, but we could not continue her chemo while she was so weak and still healing from the blisters that we could NOT get to heal on her back -- no matter what I tried. We took her to UNC for fluids and a check, only to find out the shingles on her back had become infected. So we had to start a new round of antibiotics on top of everything else. At this point, she is taking so many meds and I had to take over managing that as well.

Because she was due for scans soon anyway and we were so concerned with mom's overall stamina, the doctor went ahead and ordered the scans then, to see where we were with the cancer progression. Unfortunately, it was determined that the cancer had not been responding to the new carboplatin regimen, and we needed to discontinue. Her doctor said that there was one more treatment we could try (just recently approved by FDA), but mom was nowhere near strong enough to receive it. So we took a 2 week break to try to get her moving around and strong enough to receive the treatment. Unfortunately (again), it was determined this week that she had not regained her strength very much at all, after a LOT of effort of her part.

Because of this, we have made the difficult decision to transition her care to hospice. This does NOT mean that mom is giving up. She is such a fighter, but we realized after talking to the doctors that if we have any chance of mom rebounding, then it would be through hospice's help. They will just come into her home for now in Wilmington, and visit and assess things as we go. If a nurse is determined to not be needed as much, then we can dial back care. I just finally realized that my nursing skills alone (I am not trained at all), were not doing her any favors. It feels like I'm just keeping her above water, but that's about it. It will be a comfort to know that no matter which way things go, we have the support of hospice to help guide us in whatever direction we are taken. We are basically living with her for now, while the kids don't have any obligations in school and sports -- thanks to COVID. Sometimes, it's strange to see how terrible things can somehow turn into blessings.

The kids have handled it like champs, but some days are harder than others. They are still grappling with what's going on with their Anna, as well as getting stir crazy in a house where they can't always be their normal 4 and 6 year old selves. Fortunately, my best friend's family (shoutout to the amazing Musser family) has a pool that they graciously let us swim in whenever we want, so I get the kids out of the house as frequently (and safely) as possible to give everyone a break. That leaves Craig to work at mom's in a slightly more quiet setting, while also being there in case anything happens with mama or grandmama. I'm only 2 miles away if I need to return home for anything when we go to the pool. On a positive note, Millie can now swim the length of their pool without my help.  🙌 Chase still flops around like a drowning chicken, so no luck there. Still working on it though. 😜

At any rate, this is a tough chapter to say the very least. We are obviously limiting visitors at this time because of COVID, but if anyone would like to send a video of well wishes or a card, let me know and I can make sure those get to her. She still has her sense of humor through all of this and we love her for it. Also, we've found that the kids LOVE getting mail too, so if anyone wants to send them a short and fun letter, please do! Millie can read now and is continuing to work on her handwriting, so reading and responding to letters is a good activity for her currently. Chase loves to doodle a snowman so I'm sure he would love to share his artwork as well. Anything to take their minds off all of this. I tried taking them to the beach, but it was WAY too crowded for my comfort, so we are rather limited.

Thank you to everyone who has been checking in. I try to answer all of the questions that come my way but sometimes they get lost in the madness. So sorry if I'm ever short with anyone with my responses. It is not intentional - there is just a lot going on, but I appreciate the love, thoughts, and prayers. Please know that. 💕

A New Chapter for Mama

It's been a while since I've updated, and that's been because of a GOOD thing -- Mom's status has been stable ever since we got the hip debacle taken care of. The scans would show no progression, so we would just continue on the current path with chemo + immunotherapy every other week, followed by scans every so often. Around Thanksgiving, we had an iffy scan and we were unsure what it showed - it was either progression in her lung, or an infection. They prescribed medication to help with what we hoped was just an infection in her lung, and we continued with treatment as normal.

That seemed to do the trick and we continued on like usual. All was well, but we decided to switch from the Cancer Treatment Center in ATL to the UNC Cancer Hospital in Chapel Hill this past January -- mainly for convenience purposes, and also because she switches to medicare in June and CTCA can no longer help with travel expenses at that point, so we knew a change was inevitable. She has a great doctor at UNC who is really well versed in Triple Negative Breast Cancer, so we feel lucky to be treated there, and it's slightly easier travel wise. Or it was.

Over the last month or so, I started noticing little things with Mom. Mainly memory issues and noticing her coordination and balance seemed off. Nothing major but it was just different, so I made a comment to the NP when we were there for her treatment. They ordered a brain MRI right away, and a couple days later, we got the results back and they were what we feared -- her cancer has spread to her brain.

I know that sounds so scary, and honestly it is. BUT mom is doing really well, considering. They decided to halt chemo + immunotherapy for now, and she's currently undergoing whole brain radiation, and they'll start chemo + immunotherapy back towards the end of the month. They also prescribed a steroid to reduce the swelling in her brain, so that should help with some of the symptoms. They also prescribed her some meds that help Alzheimer's patients, and they hope that helps with the issues she's having with short-term memory.

In addition to that, they have a new technique with whole brain radiation where they can skip over the  hippocampus, which plays a major role with memory. So hopefully all of these things combined will help preserve her short-term memory that she's been struggling with lately. The big takeaway is that the cancer is getting smarter (progressing in her brain, but no signs of progression in her body according to her most recent CTs in January), and it's getting more aggressive.

All in all, we are doing okay -- they don't want her driving for now, but she is hoping that's temporary. But obviously, that makes things a tad harder since she's in Wilmington and everything is in Chapel Hill, but it's nothing we can't handle. If we can just convince mom it's not that big of a deal when we come down to get her or take her back. 😉 Plus, she can come and stay with me whenever she wants, and she does that too! The kids love it. #silverlining 💞