All of the C words

I’m really starting to hate the letter “C.”

COVID… Cancer… Chemo… all of these words are swirling around in my head right now.

And Christmas… woof.

Christmas sucked this year.

It’s almost annoying, isn’t it, that holidays have the audacity to just pop up and do their thing in the midst of all the shit that’s going on?

A very COVID Christmas

We went home to Ohio. Luke and I are both vaxxed and boosted, and while the omicron variant is raging, I really needed to see my mom. She has CLL — a form of leukemia that’s supposedly non-aggressive but also chronic, so it doesn’t really go away. But when she was diagnosed a few years ago, we were told it’s not likely to kill you — “you’re likely to die from something else!” — and can be managed.

For the first couple years, it was just background noise. Her blood levels were good, she felt good. She didn’t have to do chemo because that wasn’t proven to be super effective with this type of cancer. It was the most chill of cancers!

And then over the past year, everything went to shit.

At some point, she started developing itchy spots on her head. A few people in our family, myself included, have psoriasis, and we have special shampoo we have to use sometimes. So we tried that. Then the itching started to spread. As the weather warmed up, it got worse. She was itching all the time and nothing was bringing her relief. It just kept getting worse. She’d have good days and bad days, but it generally just wasn’t going away, and her doctors didn’t seem to have answers. One kept insisting it was not related to the cancer.

Finally, this fall, she got a new oncologist who decided it WAS the cancer and her lymph system was raging out of control. Oh, and she was maybe like Stage IV?! They put her on some new drug that brought her relief. This happened to be in the same time period as my brother’s wedding celebration, and she was feeling good and in good spirits for the event. We had a ton of family come to town. I thought maybe we were on an upswing.

But she couldn’t stay on that drug. She had to go off of it for awhile. And then everything came back, worse than ever. By the time Christmas rolled around, she could barely even walk. She has a swollen lymph node in her groin, her leg is swollen, she has some hacky cough that’s been there at least a month (she keeps testing negative for COVID), and the itchy spots are all over. She’s miserable.

So, I had to come home. I don’t understand what’s happening. I wanted to talk to my dad, and my brother, and make sure she’s getting the care she needs, that questions are being answered, that she’s not slipping through the cracks. And talking with my dad — he’s on it. They’ve been everywhere. Shuttling around to all these different doctors and hospitals, trying to get opinions and second opinions, taking tests.

But my dad travels for work a lot. So sometimes she’s alone. Not this past week, but he could have to travel again as soon as next week. I’ve gotten my brother more involved as well. I think he was, perhaps unintentionally, being kept a bit in the dark, and he’s up to speed now.

But what about me? I’m her daughter. And I live nearly 500 miles away.

It’s always been complicated with my family, as it is in many families. I love them dearly. They also drive me totally insane. We all talk over each other. Mom and I are super emotional, my dad is kind of a stubborn, selfish butthead and my brother is the talented, charming comic relief.

As I sit here in Wisconsin, I think things like, Should I move back home? I can work from home, should I just live there for awhile? I think about how involved my mom was in my Mimi’s care before she died, and I feel horrible that I’ve never even been to an appointment with her.

But then, I’m there for a couple days… and I can’t wait to leave. Even now. Even, and maybe especially, with all of this going on, I couldn’t wait to get out of there.

Here is what people don’t talk about when they’re going through this with a sick loved one. You’re still going to get mad at them. They’re still going to piss you off. You’re going to swear up and down that there’s nothing you wouldn’t do to make their lives easier, and then you find yourself melting down in a shopping center parking lot on Christmas Eve because they asked you to buy last minute gifts but gave you no ideas and you personally never leave shopping until Christmas Eve, that’s for psychos.

Just, you know… as an example.

You’re going to want to wait on them hand and foot but then get tired of that real quick when they just want you to get one more thing, or warm this thing up, or find their goddamned cell phone again. You’re going to really resist the urge to yell at them to cover their mouth when they cough, until Christmas, when you can’t take it anymore and you say it.

You’re going to put your significant other through hell, between helping with tasks and bearing the brunt of your emotions, and they’re not going to say one word against you. Not one word. And you’re going to wonder why you’re subjecting them to all of this in the first place.

We ended up leaving a day early because we were all potentially exposed to COVID, and Luke and I wanted to be home in case we got sick. So far, we’re fine — everyone seems to be “fine,” as far as COVID goes — but it was a long week of wondering how that was going to go.

And the thing is, I was relieved. I was freaking out about COVID, but I was ready to go home. My parents’ house depresses me. The water is shit, it’s so fucking CLUTTERED everywhere, they have 4 pets. Loving, adorable pets, but it’s like a zoo. My dad was kind of busting his ass — I’ll give him that — but it’s still just depressing. They put up a tree, but Luke and I had to decorate it Christmas morning, and there were no stockings.

I’m not trying to be like a 5-year-old here, whining that I didn’t get any candy canes. It’s just that it’s all a sign that things are all wrong. My mom is not currently someone I really recognize. Someone I just saw in October. Even the gifts I got her — a nice shirt and sweater and cute shoes — were kind of wrong. She’s not wearing that stuff right now. She can’t even wear regular shoes because her feet are swollen. I felt kind of like a moron. I did also surprise her with a girls’ beach trip in May, and she did perk up at that, but who knows if we can even go?

Because the thing is… this week, we found out she’s going to have to start chemo. Chemo is something my mother never wanted to do. Something she was just very afraid of. I think largely because of what it means — that things are not good. But she didn’t want to lose her hair and get really sick, and all of that jazz. But now, she’s so miserable she’s almost like, give me whatever. After I found out, I called her, and she just sounded so angry. It felt like she was angry at me for calling. “I don’t have answers right now.”

They don’t want me to come home. It’s going to start up right after New Years, I think. My brother is heavily involved, especially if my dad has to travel. We also have some other people. But I’m still freaking out. This is the biggest thing yet. In talking with friends, and Luke, they have tried to help ground me. To remind me that chemo works. That she might get better. That I need to try to stay positive.

I hope so. God, I hope so. The last thing I want is for her to suffer more, to no avail. I’m still not convinced I won’t be coming home. I mean, there are likely to be future rounds, right? I guess it all depends on how each one goes. I had a completely panicked thought that I may never see my mom again the way she was in October.

I know, I need to clear thoughts like that from my mind. But they’re in there. They’re in there with all the bad C words.

I just need a new letter. I’m going to try H, for hope. I’m going to hope. I hope in May my mom and I are sipping margs on a beach and this doom-and-gloom blog entry is a thing of the past.

I hope, I hope, I hope….

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