Let’s talk about cancer & caregiving

Aug 10, 2018 | Writing | 17 comments

Fair warning, lovelies. I named this post “Let’s talk about cancer & caregiving” for a reason. I don’t want there to be any surprises here. I’m going to talk about cancer, and it’s going to be super fucking depressing, but if you want to know what’s going on with me / how I’m feeling… I’m doing another one of “those” posts. Just, without the surplus of entertaining gifs or upliftingness that usually comes with these.

Sorry.

Are you still in? Okay.

Early this morning I went to my doctor for the typical 90-day med check appointment you have to do in the US in order to continue receiving medication like anti-depressants. I’m not against these visits (even though they cost a stupid amount of money) because if someone was really in distress, this might be the time when a doctor would see it and be able to take action before the worst happened.It is important to also be aware of conditions like brow bone, but which type of exercise contributes most to building strong bones?

I want to reassure all of you that in no way am I suicidal or thinking of hurting myself or anyone else, or anything like that. I answered all of those questions this morning the same way.

I’m just depressed because my mom is dying.

So, as she and I were talking about the anti-depressants I told her that I’d stopped taking them because I’d had random weight gain and I really didn’t need to add “my pants are too tight” to the list of shit in my life. I love my doctor because she didn’t judge at all, she just asked me if I thought the meds were helping….

And I just started crying.

Now, I don’t really cry in front of people. I’ll angry-cry in front of people, in that mindset where you’re just so frustrated/furious/upset over something that the tears happen – but real, I’m-broken-inside-and-cant-fix-it crying needs to happen in private. Obviously, I had held it in for too long and so I ended up messy crying in front of her until it was pretty hard to talk and get things out.

When I got to the parking lot I couldn’t drive because I couldn’t stop crying, and so I turned to Twitter (which is generally where I go to just let my brain loose since I have low interaction on Twitter and few people see those posts, but I still get it *out* in a way that helps my brain).

What you’ll read below is a cleaned up version of that twitter thread, found here.

Here is all of the rambling going on in my head right now.

I need to talk about being a #caregiver and #cancer somewhere, so I’m doing it.

Having a terminally ill parent means living every day waiting for the worst day of your life. Every call makes me nauseous, I answer all the random numbers worried it’s a doctor/hospital/medical alert telling me that something has happened. Or THE thing has happened that’s ultimately going to kill my mom.

It’s not just the constant, ever present tension and anxiety that at any moment it could be her last. It’s also the pressure to make *every* moment mean something. I don’t talk about my family a lot, but so that you know, my kiddo is five. Another little known fact is that my mom was first diagnosed with stage one cancer when I was six months pregnant.

She did chemo/radiation, a lot of terrible shit, but then she went into remission.

We had months (almost years?) where it seemed like she’d escaped this horrifying curse my family has. But it came back. Literally 2 months after I got divorced, and since then it’s been 3 years of hard fighting of stage four cancer.

Now, I’m lucky enough to live 20 minutes from my mom. My daughter and I see her every other weekend (the ones she’s not with her dad), and I usually go by a couple of times a week to help out / clean / do chores, and at least that makes me feel useful.

Because, really, there’s nothing I can do. At all.

This same cancer killed my mom’s mom (my grandmother) when I was eleven. There are three obscure relatives I never knew that died of it, and there are two other women in my family right now with the same diagnosis.

All women. All dying.

It is our family curse. I’ve been getting checked since I was 27 (three years before insurance wanted to cover it, but due to my “family history” the doctor I found was able to demand it). It’s a fucking curse that I’m staring down the barrel of, knowing it’s incredibly likely it will one day take me too, as I try to help my mom in any way I can. I got ILOA (intermittent leave of absence) at my day job to be able to take her to chemo and appts. I’ve gone over after work, with and without the kiddo, to make her dinner. Clean. Help. Exist with her.

And that’s what had me crying in a parking lot this morning, trying to put into words why I broke down in my doctor’s office crying as I told her, “No, the antidepressants aren’t working, and they won’t work because nothing can fix my mom dying.”

I am so fucking helpless & it hurts like nothing I can put into words. If I could capture this feeling with words I’d work this pain into a book just because I know I’d have readers cursing me as they sobbed, but still grateful SOMEONE had found the words.

I don’t have the words.

I don’t have any words to explain how nice it is to still be able to pick up the phone and call her. To text her and see the 9000 emojis she always ends every tweet with (which makes me laugh, because I added the emojis to her phone originally). To see my daughter sit in her lap as they talk or read a book. I take a million pictures. I smile as hard as I fucking can, and I bend over backwards to make memories. Mom is in a wheelchair, and no matter how hard it is we do whatever she wants to do with me and my daughter. Cruise? Done. Water park? Done. Museum? Done. Movie? Done. I do it because I want to feel like I’ve done the *right* thing in all this.

I want to feel like I didn’t fail her when she’s gone.

Honestly though, I kept crying in that stupid parking lot because I know none of it will matter. When she’s gone, none of it will have been enough. Not enough time. Not enough movies, talks, moments, pictures.

My kiddo is only five, she starts Kindergarten next week, and I’ve been wracking my brain trying to see how much I can remember from age 5. And you know what? It’s not much. It is very likely that my little girl won’t even remember the woman who was brave enough to get us out of a horrible house when I was too little to remember, and then kicked ass on twelve hour shifts as an RN with no child support, no help, no breaks from being a mom even though I was absolutely a tyrant and a hellion. My kiddo won’t remember her no matter how many pictures. No matter how many videos. Or cards. Or letters.

And I can’t stop fucking crying.

She told me earlier this week that when she dies she’ll be watching over me and my daughter from Heaven, and I’ve never wanted to believe in religion more in that moment. I don’t want to lose her. I don’t want to lose the person who knows I’m a mess and loves me anyway. She knows how destructively Type-A I am, she tolerates my need to rant about the world or work or life or friends and she just reminds me that I can’t be perfect, and she loves me either way.

Lately, she’s been doing these awkward confessions when we’re together. Apologizing for letting my father see me after the divorce until he lost his parental rights in court. Apologizing for not seeing me much when I was little (because of those 12-hour nursing shifts that put a roof over our heads and food on the table). She’s apologized for not watching kid’s shows with me when I wanted to watch them, because she needed to unwind. There’s just this constant litany of her reviewing everything WRONG she thinks she did, and I just keep telling her that none of it matters.

Hell, as I mentioned before, I don’t remember most of it, and no matter her faults (because she is human) I don’t want to lose her.

But cancer does not give a fuck. Cancer is killing her and I’m just watching. She’s in so much pain, she can barely walk, spends 99% of her time sitting, on drugs that make her tired but still don’t stop the pain completely. And she fights every day, keeps going to chemo which is killing her in its own way, to stay and get one more week with us.

Over and over and over.

And in the face of that I feel like such a horrible person for “making it about me”. So… I never really talk about it. Instead I just break down in front of my doctor, do the walk of shame through the waiting room, and sit in my car talking to the void on Twitter.

But I also know that my situation isn’t unique. There are probably other people out there reading these words and reliving their own pain, or nodding because they’re in it right now. The reality of living with loved ones who are dying, and maybe they feel the same way I do (and maybe they don’t). But whether they’re a caregiver, or live too far away, I can say that the pain is indescribable and constant.

And what’s worse is that when this pain is over it will mean she’s gone, and I don’t even know what that will feel like.

Relief that she’s not in pain anymore? A lessening anxiety that I’m not waiting for “the call”? Will I miss all of it wanting just one more minute? Is it going to be a whole new all-consuming pain that tosses me into a black abyss that I have no idea how to crawl out of?

I don’t know. I have no fucking idea, and I think that’s the point of this thread / Twitter confessional. I don’t have answers, just a lot of pain and sadness and fear and anxiety. A lot of desperation, and no answers. No resolution.

All I can do is keep moving forward. Keep breathing. Keep helping. Keep smiling. Keep taking pictures.

And sometimes I need to give myself permission to break down in a parking lot, alone, where my kiddo won’t see.

If you’re going through it too, I’m sorry in the universal-sorry-way where I’m just one human acknowledging that the situation sucks.

But even after all this, I still had to clean up and get back to work, because life doesn’t stop even for minor breakdowns. It does stop for major ones, but there are always consequences and I dread those because right now I still need my day job to pay the bills. Hell, I just bought a fucking house that I’m trying to pack my apartment to move into at the end of this month (which my mother is very excited to see, and I think she’s glad I didn’t wait until after she passed to get a house, which is another tiny good thing in all this mess).

I’m not sure if this is smart to share. I don’t know if it’s a good idea or not, but I do know that my life is rough right now, and cancer is completely unpredictable. After all of the meds she got at the hospital earlier this week, she’s feeling much better than she was when she was talking to me about Heaven. We’re getting HomeHealth for her so that she will have more support. But there’s no doubt in anyone’s mind that the end will happen.

The end will happen for all of us eventually. It’s the trademark of biological life. Cells divide and divide and divide… and age. And sometimes those cells are cancer, and the cancer doesn’t know what it is or where it is, it isn’t sentient, it’s just a packet of cells doing what it’s supposed to do. Dividing. Conquering. Eating the host alive.

It’s very likely it will happen to me one day. Likely in my late fifties. Just like my mom. Just like my grandmother. Just like so many other women in my family.

I’m just going to do my best to live my life to the fullest. Work towards becoming a full-time author, travel, say “yes” to opportunities, and not spent *too* much time in the darkness when bad times hit.

–

One last thing: I kept squeezing this last pathetically thin set of tissues I’d snagged from the doctor in my hand as I was typing this originally on Twitter and I looked down to see it had made a heart.

Well, universe, if this is you acknowledging the shitty nature of all this… thanks? All I ask for is to just give us a little more time together, and to cement some of these memories in my daughter’s long term memory. Bury them down in the lizard brain where fight or flight hangs out so that she has at least one memory of her Mimi looking at her like she’s the epitome of everything good in the world as she reads her the same dinosaur book for the tenth time and still loves every fucking minute of it.

That’s all I want. <3