The gift

 That last post was pretty sad. It's a thought I have often, of course, but I really try hard not to dwell on it because each day that I wake up, I have choices to make about the things I do and how I focus my time. Feeling sorry for myself isn't high on my priority list. :)

I'm reading this book, The School for Good Mothers and it's pretty depressing. Being a mom is hard. You go from being an individual person to having a part of yourself rolling around on the outside of your body. While there are a lot of parenting books out there, I've yet to read one that is 100% applicable to my life or my situation. Some of those books, well, I just don't know who is able to live in the way they suggest. People have all these expectations for moms. Somehow you're supposed to know how to be a "good mom" even if you grew up in an environment that wasn't "good." You're supposed to be able to meet every demand, ever need of this new little creature that you love more than anything, but you know literally nothing about. Being a mom is an on-the-job experience. You may have read all the books or had previous experience watching someone else's kids, but you don't know what it's like to be on call 24/7. It changes who you are or maybe it brings out who you were meant to be.

Being a mama was hard in the beginning, but it wasn't just hard. It was amazing and beautiful. 

And it was lonely. 

I've never had a lot of friends. I've known people and I've done things with people, but I've rarely let people in on who I really am. It's no one's fault; it's just how I am. When I had Evan, Bo was home for a few days and then he had to go back to work. It was just me and Evan. 

It could be lonely. A baby doesn't respond to questions or conversation. Babies will cry even while you're comforting them. And Evan was an easy baby, other than the no sleeping thing. But the days were so wonderful, too. Evan and I had a pretty solid daily thing; not a routine, really, because nothing was ever at the same time, but we knew what to expect from our days, what we'd do. I'd read whatever book I was reading aloud to him and he'd color or play. We'd nap together. I loved our afternoon naps.

I didn't hesitate, though, on dreaming of having another baby. I think, if things would have been better and there'd been no recession and no cancer, I would have wanted two more kids. 

I worried there wouldn't be enough love in my heart for Arlo, because I knew how much I loved Evan, but when Arlo was born, it was just like he fit, right there, with us. I remember crying to Bo about what if I don't love this baby the same? Then Arlo was born, after the quickest labor experience. We dropped Evan off at my mom's house around 2 in the morning on a Friday, and Arlo was with us in the car, returning home at 8 AM that same morning. Arlo just meshed. Looking back, I can appreciate the ease of it. Evan, Arlo, and I made it through our days with no real routine or expectation to our days beyond enjoying them. I think we enjoyed them. I know they won't remember the days, but I hope they remember the love of those days. 

Being a mama is one of the hardest things I've ever done because I want to do it right. I don't want to mess them up. Being a "Cancer Mom" is harder than just being a mom was, though, because now I know that there's something that can definitely "mess" them up. Now I worry about all the regular mom things plus how do I make this a "growth" experience?

Selfishly, though, I realize that being a mama is the greatest gift I've ever been given. I'm thankful every day that I get to look at these two little boys who are growing into young men before my eyes. They are gentle and kind with me. And they're hilarious like their daddy. We need to work on things still, right? We're still molding and emphasizing and working toward the end goal of getting them to fly on their own, but I'm so thankful I've been able to have this experience at being their mama. 

Being a mom is hard. You go from being an individual person to having a part of yourself rolling around on the outside of your body. And you learn that the little extension you grew isn't you at all -- it's this unique individual that you have the honor of watching develop, and you realize the difficulty is more than offset by the wonder of the whole experience. 

Being a mama is hard, but it's been the greatest gift Bo has ever given me, when 15-1/2 years ago, we were walking on his parents' property, and he said If she can do it, why can't we?, and he provided me the opportunity to find my life's purpose. 

Being the killjoy

 It's an awful thing really, to think that you've ruined everyone's life around you.

I know what you're thinking, but Amy, don't feel like that. You're wonderful. You're amazing. You're this. You're that. 

Yes, I'm sure I am. To you. On the outside. 

But for these three people who live in the house with me -- I am the ruiner of the life we could have had. The life they should have had. We should have weekends with friends. We should be able to make weekend plans, to go places and see things.

He asked me what I was going to do this weekend. I told him I didn't know, probably nothing.

Today my sisters came over. It was nice to see them. I suspect they're worried, like everyone else, about my current swift decline in health. While they were here, Robert sent a text letting me know that a new calf had been born next door and the boys should go check it out. They didn't go. They could have gone, and would have gone, if I could have just put my shoes on and walked over there with them. It's hard to be motivated when your mom shuffles and whimpers when she moves wrong.

When we finished eating today, I just left my plate there on the table and sat, waiting to take it to the kitchen. When Bo finished, he got up and asked if I was done, I told him yes and he said I might as well as do everything and take your plate too.

The burden of stress and anger is so heavy for Bo and I don't know how to lessen it. 

Bo and I are 39. I'm supposed to be able to work make a good income, so we can have a good life with places to go and things to buy. I'm supposed to add to our stability, to allow us to save for the boys futures. I'm supposed to be able to drink a glass of wine or beer. I'm supposed to able to not be embarrassing when I walk beside him.  

Will my boys remember the real me? The one who could jump on the trampoline with them, who would run and race them, who played. The one who could get down on the floor and then get back up again? Will they remember me as anything but defective?

I know good things come out of the worst situations, that people can reflect on the course of their lives and pinpoint when they knew they wanted to be different or when they figured out what their life's purpose was and that usually those times are pinpointed within a seriously crummy part of their life. I know that there are so many wonderful, well-adjusted adults out there who watched their parents suffer and go through terrible things as the children grew up. I don't think that my plight is an automatic cancellation of their chance at a wonderful adulthood. In fact, I have hope that my boys will come out of this better people, kinder, more understanding and supportive men. But it sucks that you have to have a sick mom as your catalyst for greatness. 

I hope Enhertu works, and that I get back to being "normal" but I have this worrying thought in the back of my mind that this will eventually become the norm. That one day, I will look back on how I feel now, and actually miss it. What a depressing thought.

I told you I was a killjoy.

A note on memoirs.

I read a lot of memoirs. Well, rather, over time, I've read a lot of memoirs. I don't actually read much anymore. My focus is lacking and, unfortunately, my emotional investment in things is limited. I find that I pick up a book and get a fourth of the way through, only to realize that this doesn't 1) help me or 2) make me feel better, so why am I bothering?

Anyway... I've read quite a few memoirs over the years. In 2017, I wrote on Facebook:

I finished Cancer Mom this morning. It took me a little over 24 hours to finish it, which is great because it's another book read. It also means I'm not sleeping still because I've been trying to only read "my" books on weekends or after the kids go to bed.

As I was reading it, I reflected on the vast difference between her life and mine. I related a lot more with Hillbilly Elegy than Cancer Mom. I need to find a "hillbilly" cancer book, I guess.

I finished another cancer memoir last night. It was good and full of hope. It was honest. But I couldn't connect with all of it. She talks about breadcrumbs and finding hope in the little things. I do find hope in the little things, but I can't make sense of cancer through "breadcrumbs" that I find throughout my days. 

When talking about cancer, it's difficult because people want to hear the bad, but they want to hear that you're optimistic, that you don't lose hope, that you're making the best of it. People want you to be inspirational. And I'll give you, I'm amazed at my ability to make the best of it, to just keep going. But is it me, or is this just human nature? 

There's so much darkness in my story. Is there a place for the sad cancer story? Not just sad because cancer itself is sad, and the death of someone "too soon" is sad, but because the life outside of cancer is kind of depressing. 

I don't know, but I'm going to try to be more honest because I know there will be someone else like me with a dysfunctional extended family and a penchant for keeping kind-hearted non-family people at arm's length. 

My mom once told me Who would want to listen to you? And maybe she's right, no one will want to right now, but maybe later, someone will find comfort or humor or annoyance in my words. :) 

MyChart is a modern-day Pandora's box.

I teetered back-and-forth between opening the scan results before my appointment on Thursday or just finding out the results on Thursday, with the doctor. 

Then 12:04 came around and I felt a little annoyed that there was no notification from MyChart saying my results were available. By 12:06, both results from the bone scan and the CT scan were available. I, of course, logged in and checked them out.

My heart sank as I read them.

enlarged

progressive

slightly larger

increasing

Findings: Slowly progressive metastatic disease.

8 hours later, I can see some hope in this. "Slowly" is better than "quickly" and "slightly" is better than "significantly." And there are few new lesions, just what's there is bigger.

But 8 hours ago? 8 hours ago, I was having a hard time doing much other than cry. I cried on my couch. I cried in my room. I cried in the bathroom. I had a hard time breathing. Take a breath, open the floodgates. I'd take deep breaths and calm myself down, only to look at my kids and the tears would start falling again. Arlo brought me his penguin squishmallow and Evan came over, put his arm around me, and just sat next to me.

This is unfair on so many levels. It's unfair of me to cry like this in front of them. To let them see so much emotion from a lady who usually just handles things. To know what I know and not tell them all of the truth because while I know the outcome of all of this, I don't actually know the timeline.

Even though today was Evan's first day of second semester, we loaded up in the car with Bendy because Dahlia is in heat, and headed to Kohl's to return some pants and buy some new ones for Arlo. For some reason, he just keeps growing. Who knew this would happen with kids? 

I parked us out away from people because I like my car with no door dings. It takes forever for me to hobble anywhere now, though. As we made it about halfway between the car and the building, I reached for Evan's arm.

Are you ok, mom?

Yes, baby, just a little pain in my hip, you know. 

We returned our pants, found new ones, and looked for a new overshirt for Evan (unfortunately places seem to have fewer choices for kids his size). We took pictures of what we liked to shop online, and then I hobbled over to the single checkout location in the whole store. As we approached the line of about 10 people, I could feel their eyes, as they watch this not-so-old, pretty overweight lady, hobbling around with two man-sized boys beside her. What do they see? What do they think? 

Arlo decided to go out to the car since the line was so long and not moving too quickly. We don't like to leave our animals alone in the car very long, but we also aren't the kind of people to bring our animals in with us. This means, a lot of the time, someone is left in the car with them. Anyway, once Evan and I paid for our items, we headed out to the car. Evan led the way and I hobbled behind him.

Are you racing me? Because if you are, you know you're just going to win.

I hear a dog bark then. It's muffled, but I hear it. I look forward and I see that the whole car is rocking back and forth because it's not just any dog barking: it's Bendy. He barked the whole time, until I opened the car door. 

He's shaking. Arlo said.

Before I fully realize it, I say Probably because he though I was a zombie and figured I was coming to get you. It's been bothering me for awhile, this hobbling thing, but now I realize that my stilted movement is quite like the slow-moving zombies of The Walking Dead. I'm definitely not like the zombies of World War Z. I couldn't crawl on top of anyone's shoulders at this point of my life. :)

We went to the library for a book -- the play, A Raisin in the Sun. While we were right there, we grabbed 3 milk shakes, a scotch and soda, and a basket of French fries. 

There's nothing that will make you feel better than fat food.

Arlo - Like that fat guy says in Austin Powers, I eat when I'm depressed, I'm depressed when I eat. 

All of us laughed. 

I drove toward the freeway from Connection, and used my favorite half-circle on-ramp and we headed home. We listened to pop music and some rap music from my childhood. 

Nothing like reminiscing to music from when I was 12 to make today better.

And I am better. Not like health-wise better, of course, but mind-wise, I am. Getting out of the house, with a change of scenery helped.

Bo's birthday is on Thursday. What a rotten birthday week for him. We're going to go out to dinner for his birthday though, no matter what. I asked him if he'd made reservations, and he said no. I told him:

I'll call. Gotta live while the living is good or at least while the living's still breathing.

I'm making a lot of jokes and references to death lately. I think I hope that if I say it aloud enough that it won't be so scary, that it won't be so sad. I'll let you all know how it pans out for me, but I'm suspecting that I will never be ready to just go, to just say goodbye.

How does a mama and wife, who really generally likes her life, prepare for a future of saying goodbye?

She doesn't. Not really. Not fully.

I can make lists and notebooks. Do the will and fill out the paperwork.

I can save a little. I can declutter. I can write down the stories.

But I can't really prepare to say goodbye.

I have to focus on living, on each day that is still mine.

Sometimes, it just takes me longer to find my breath.