I don’t normally read romance novels. They are not really my jam. Too sappy. Too much happily ever after. I picked this one up because it’s a darker tale, about a woman who is caretaker for her mother, who is dying from Huntingtons. She’s had the genetic testing and knows that at some point she will also develop symptoms. So she makes a list of rules for herself which includes no dating/no falling in love, because she doesn’t want to put anyone through the hell of watching her die. But then she meets a very special man and obeying that rule becomes much more difficult.
I enjoyed how this novel didn’t shy away from portraying just how awful it is to watch someone you love deteriorate, and even more so – how difficult it is to know you will suffer the same fate. I feel like it’s exactly what I needed to read right now as my body is consumed by cancer. I saw so much of mine and D’s struggles in the lives of the main characters. I felt seen.
Love is always worth the struggle. Yes, there will be pain. It’s a roller coaster ride for sure. The ride can be rough, and sometimes you want to get off. But every single moment with him has been worth it. I would say yes over and over, a million times yes.
Thank you for riding with me, my babe. ♥️
And cry. But in a good way. Oh K, how I miss you, lady.
I already feel bad enough about…well everything, so passive aggressive texts from my mother about how I obviously don’t want her to come see me are annoying af, and make me feel even worse. I don’t need this from her or anyone right now.
For the record, I’m not seeing most people outside of D, the kids, and my docs. I occasionally see a friend, but not often. It’s not that I don’t want to see my mother, but she lives like two hours away, and it’s not easy to plan when I don’t know how I’m going to feel on any particular day. I’m forced to cancel plans constantly. Oftentimes the day of. Ugh I’m just so annoyed by this right now. So much so that I haven’t responded, and it’s been over 24 hours.
On the other hand, as a mother, I get how she must be feeling, and I feel guilty about it. But I’m the one who is dying, and we have to do this on my terms. And I’m just not ready to say goodbye to her yet. I’m not. The next time I see her will almost certainly be the last. Is it surprising I’m not in a mad rush to set that up?
Plus, she’s acting like she wants to come down here and take care of me, which is just not going to happen. We don’t have that type of relationship. I love her, but I’m not going to pretend like we’re something we’re not.
I just needed to get that out. It’s been festering.
I’ll likely reply to her tomorrow when I’ve had a chance to figure out how I want to do this.
I’m on my laptop, and that always feels like a good excuse to update the blog. Typing is just so much easier on a full size keyboard. I’m old school. And…old. haha
Lots of stuff going on this week. Tonight is Jackson’s choir concert. The entire fam, plus Annie, will be going to that. I have invited my ex to sit with us, and it will be interesting to see if he accepts that invitation. It has been over ten years since we split, but he still holds a big time grudge against D, so that makes things quite awkward. However, my ex visited me in the hospital last month (when he brought Jackson up) and he actually said “take it easy” to D as he left. So that was def progress. My ex likes my bestie, so she will be a good buffer. I just really need G (my ex) and D to be able to talk to each other. Once I’m gone, they are going to have to communicate somewhat extensively. D is the trustee of Jackson’s trust, and there is going to be a lot of stuff to hash out over the years. I worry about this a lot. I’m a control freak, and so I am trying to control the future, which I obviously cannot do. All I can do is try to set things up to go as smoothly as possible. The rest is out of my hands. This has been a tough pill to swallow. Anyway send good vibes for tonight. LOL.
In the same “worried control freak mom” vein: both of my kids are having friendship issues right now and are struggling socially. I know this is totally normal and will pass. I also know that it drives me crazy that I can’t fix it for them. I hate seeing them suffer. And I keep thinking worst case scenario stuff like: what if I die and they have no friends to support them? Right now I’m Freya’s confidant, so what happens when I’m not around to fill that role anymore? What happens when I’m not around to be the mediator between Jackson and his dad? Who will Jackson open up to about his feelings when I’m not around to prod him? I know they worry about these things too. UGH – worry, anxiety, sadness…I’m trying to fight back, but it feels like that’s the atmosphere around here lately. And really – why wouldn’t it be? That’s totally normal given what we have going on. It’s a suck.
But I keep telling myself that everything is going to be okay. Death is a normal part of life. They were always going to grow up and move on. I was always going to be come less important in their lives. They will be absolutely fine. They will thrive. I can die knowing I’ve set them up to be emotionally and financially stable.
Then I start to worry about D. And that is an entire other thing. So much worry and sadness. I don’t want to get into that right now. I don’t want to spend my day crying over shit I cannot change.
This ended up being a trauma dump, which was not my original intent, but maybe it’s a good thing. It’s good to get the feels out, and that is always how I’ve used this blog. Why stop now? Anyway – what I was originally going to talk about is how this is a busy day/week, and I’m happy with how it’s going so far. I’m feeling okay-ish. Enough so that I got some errands done this morning. I’m excited about tonight, and plan to take the fam out for dinner after the concert. Looking forward to having that time together.
I’m trying not to get overwhelmed by everything going on this week (especially this weekend – yikes). It’s nice to have stuff planned, and to feel like a (somewhat) normal person just enjoying the holiday season. One big thing happening this weekend is we are having a photographer come out on Saturday morning to take some family pics. This is really important to me, and I’m hopeful we will get some great shots. But then we are having our holiday party with our besties on Saturday night – so it’s just a lot. (Oh and D’s work holiday party on Friday night / Freya’s choir concert. Busy fucking weekend).
It’s going to be fine! Deep breaths. Enjoy the ride.
Trying not to cry because I am having a hard time doing stuff for myself nowadays and feeling like a tremendous burden and that everyone would be better off if I just hurry up and died already.
Awake and sad at almost 2 am.
Oh and in pain too.
And a touch angry, because it’s all just fucking bullshit, ya know?
Yet somehow still grateful to be here, alive, and able to function despite how much it hurts.
It’s all so complicated, this living thing, and still I want more.
I’ve been following Megan over on Insta for a while now. She was a fellow mbc thriver. She’s been on the struggle bus big time recently – with brain and skin mets. Then she got covid. And, as of last night, she passed. I know I didn’t actually know her, but she was so open and honest about life with MBC, that I felt like I did. She was only in her mid-thirties, and left behind a husband and two young kids. It’s heartbreaking and unfair and I fucking hate it.
I feel like a ticking time bomb.
Stage 4 needs more.
Trying really, really hard not to go down that rabbit hole.
I can’t eat much anymore (or drink much either) without feeling really full and sick. I’ve also been having a lot of reflux. I wake up super ill in the middle of the night. Lots of nausea, reflux, and cramps. So I think I’m going to ask that my scans be moved up. I’m worried the peritoneal mets are growing again. I’m not supposed to scan until June 23rd, but I don’t think I can stand to wait that long. Plus, I need to report this kind of stuff to my oncologist anyway.
I’m so tired. I don’t know how much longer I can handle all of this bullshit.
Everywhere I look, there is another under 45 yo woman dying from metastatic breast cancer.
I can’t deal with this shit right now. I may need to take a social media break.
My body hurts and I’m tired. I’m mentally and physically fatigued. I slept like ten hours last night, and it still isn’t enough. Nothing makes this feeling go away. The Ritalin just masks it.
I’m trying not to get down. Everything is fine. I’m just unhappy at where I find myself – it wasn’t supposed to be like this. I was supposed to be more than this.
It’s so fucking hard. Some days are better than others. This day I feel the weight of all of it.