It's a given

 I've been thinking a lot lately. [No, there's no smell of smoke here...]

People today complain about a lot of things. Some things, I totally agree with: we shouldn't be banning books, women should be able to make their own choices, there shouldn't be such a vast difference between the pay of a CEO and the regular working people.

But other things... I just don't get it. We complain about not being able to afford things, and I totally KNOW there are people out there that can't afford to buy a house or who struggle to buy food, but there are A LOT of people who "struggle" to maintain *needs* but somehow do *wants*.

People get Lasik, Botox, laser hair removal, vacations to other countries..

And then get "help" (from parents or government, it's all the same to me; help is help) making their mortgage, paying their cell phone, or their health insurance.

Sometimes it feels like people today (any generation, not just mine) feel entitled to the fun stuff, but the need-stuff should be givens. Given from whom, I don't think it matters, as long as it's provided-for.

If you can't afford your mortgage and groceries for your kids on your own, then I don't think you should be able to afford to go to Mexico, Hawaii, or Disneyland. I say this, but then I think about when I had a mom and I remember that I wished she WOULD just pay $200 toward the power bill instead of gifts we wouldn't use because that would give me wiggle room to pay for something I wanted. So maybe, all of these people who say they can't afford their regular life things and wind up getting what I deem as extras are really getting help to be able to afford their fun stuff?

Who knows. I'm just thankful for the life I have, where I'm not worried about my day-to-day stuff anymore or future, really. I just know I have enough right now and that's ok with me. (Though, I would really love to get Lasik. I just can't justify it when my expiration date could be 2 years for 10 years. Seems like a lot of wasted money just to be able to see for maybe a 1,000 days).  

Round 1 - Day 19: A rollercoaster

 I expected this week to be my "best" week: I'd have energy and feel mostly normal. So far, that's true. My heartburn/acid reflux is greatly diminished. I haven't had nausea in a few days (other than when I drank a dark soda -- I think I need to give up soda again). I don't have a lot of pain.

But...

I am mentally a mess. 

On Sunday I noticed that my hair is shedding like crazy. It's not like when I did TC chemo in 2017 and lost my hair. In 2017, my scalp felt like I had a too-tight ponytail in and my hair fell out in large amounts, like if I leaned against the back of anything, there would be a big ol' chunk of Amy-hair that remained when I moved away. This time around, it's just shedding, sort of like postpartum hair loss, but a little more. I'm feeling a little anxious about what this means for my hair situation. Will I lose it all? Will I only lose it in places? Am I going to look like I'm a fallout-survivor? What can I use to cover my head as the weather warms? 

Since I'm struggling with anxiety, I find that I'm fairly emotional at night, too. I sit and scroll through Facebook, half-paying attention to what I'm looking at and tears just start appearing on my face. 

I don't even know what I'm sad about, honestly. The treatment appears to be working because the pain in my left hip is significantly improved. I can keep up with Bo when he's walking. I do get a little winded now, but I think that's from 2-3 months of limited mobility. I need to rebuild my strength/stamina. The muscles in my leg fatigue easier and I can feel how tight they are from lack of us, but my pain has gone from an 8ish (maybe a 4 with Norco) to nearly non-existent right now. This is the best news because I thought I was going to have to do radiation to get pain relief. 

And still I cry.

I cry because I am so freaking worried about my kids and their futures. I find myself increasingly aware of how isolated Bo and I are. It's not that we don't have people who care; it's mostly that Bo and I are used to being on an island of our own and it's hard to invite people in. While Bo can talk to anyone, together we're not really "people people." We like our space and our non-routine routine. It's hard to "entertain" people when life is emotionally heavy. It was a lot easier to be around people when we were young and naïve. It's more difficult now because I feel like we're such a downer, like our situation sucks the life out of people. Who wants to be the vampire in the room?

And yet my boys are going to need people. People to check in on them. People to take them to coffee or breakfast or a movie. People to talk to them about their choices and how they're feeling. I have Evan in counseling so that he has a safe space, and I'll get Arlo in counseling soon, too (he's not really ready to talk to someone). I can take care of the "paid-for-support," but I don't know how to ensure that they don't get forgotten later. This is a hard place for me to be because Bo and I have built our whole lives around absolutely not needing anyone to support or take care of our kids. I've prided myself on the fact that we just handle what needs to be done. But I don't want my kids to feel alone whenever it is I die, whether it's soon or much later. I want my boys to feel connected because I know that connection plays such a big role in being "ok". 

It's so hard to know all of the "right" things to do, but to still be human, with all of my own baggage and flaws. Here's to hoping I can figure this all out somehow.

January Books Read

 I read two books in January. Not many, I know, but two is definitely better than none. 

The School for Good Mothers by Jessamine Chan
My rating: 4 of 5 stars

This was a depressing book. It was good, in its own right, but it's definitely not something you should pick up if you're wanting to connect with the bright side of motherhood. The plot is basically that the social services system has been revamped and instead of having to do a couple hour class to get your kids back if CPS is involved (or whatever, I honestly don't know much about CPS cases), parents are forced to go to "school" for a year to learn to be a good mother or father. The book explores the differences between how men and women are treated when they become parents. It's definitely interesting, but at this point in my life, it was a struggle for me to finish it because it was so sad and hopeless for the main character.

View all my reviews

Two More Years by E.C. Stilson
My rating: 5 of 5 stars

I stumbled upon EC Stilson on Facebook. I think a local-to-Idaho news station did a news bit on her, and I saw that. Or maybe it was just that I was scrolling Facebook and somehow her page popped up. I honestly can't remember. But she's a very hopeful person, experiencing a terrible diagnosis of stage 4 melanoma where the doctors actually tell her she has just two years to live. In this memoir, we get to see how she chooses to LIVE instead of die before she's actually dead.

I'll be honest here, I was a little caught off guard by the ending. I felt it ended pretty abruptly, but that might be because I want to know more, even though the story hasn't ended yet. I look forward to reading more of what she writes.

If you're not a fan of hers on Facebook, you should be! She shares lots of hopeful and interesting stories.

View all my reviews

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.