
So, you might have noticed I’ve been gone! (Probably not, but don’t hurt my feelings and affirm that, will you?)
I can’t remember how much or how little I’ve told you about what’s going on with my mom. Essentially, last summer she found a sore on her tongue – and it ended up being cancerous. She had a surgery, they thought it was gone. Then it popped up again on her jaw, because cancer is the worst. But, thankfully, they went in and got rid of that too! After that, we weren’t exactly sold on the quality of care she was getting in Boston – so she and dad packed their bags (puppies and all) and headed to Houston, TX for her to receive radiation at MD Anderson.
I’m so grateful she’s getting the best care. But I also feel the need to extend the biggest and best “fuck off forever, please” to the big old C word on this very blog that hasn’t gotten much love from me because I’ve been an emotional, tired wreck for the better part of a year.
I kind of don’t know where to start, but I suppose – other than the cancer update in general – I wanted to take a second to talk about the emotional weight of being someone’s primary caregiver.
And of course, disclaimer alert : It is in no way a heavier cross to bear than cancer, obviously. My mom is going through hell and back and, despite the overtly dramatic occasional displays, has been handling it like a champ. Head and neck cancer isn’t something I’d wish on anyone. The things I’ve seen it do have made me everything from nauseous, to depressed, to frightened, and gobsmacked. UN. REAL.
The best way I can describe being a caregiver is like being thrown into a horse race – except you’ve never been a jockey, you don’t know the horse, and have zero training to excel in the sport – but somehow you absolutely have to come out winning. The second my mom got diagnosed, despite the feeling of doom that we all need to allow ourselves to experience, I automatically went on a deep-dive for information on everything and anything relevant to her case.
What was it? How does it spread? How did it happen? What will the treatment be like? What can we do now to make sure she’s in the best shape possible for surgery? Is there anything she needs to stop eating, drinking, or applying on her skin? Aftercare, doctors, hospital ratings, before and after videos, post-op expectations, how to pack a perfect hospital bag, researching medications, medical marijuana applications, soft food recipes that aren’t gag worthy, the possibility of reconstruction, the options she had for where the donor site was for reconstruction.. the list is truly endless.
You might think that sounds nuts. And maybe it was. But I will tell you this – not one part of my research went unused, and I regularly referred to it to get better answers and better care for mom in the hospital. Which is kind of scary, really. Had I not taken it upon myself to be an absolute lunatic with all of this, I don’t know if things would have went as smoothly.
Education is power – and more than anything, never be afraid to loudly (and kindly!) advocate for your loved one. My best advice is to go into every appointment with a list of things – how your loved one has been feeling, any new symptoms (aches, pains, soreness, etc.), questions about medications, etc. and absolutely do not leave until every single one has been answered to your satisfaction. It sounds daunting, but truly it makes the appointments even shorter – believe it or not!
I used a to-do list in the notes app on my iphone, so as we went through each Q, I was able to physically check it off and make a note of the doctor’s answer before moving on to the next. Physicians actually really appreciate this, and by being so transparent and comprehensive with what your loved one’s going through, they’re able to help to the best of their ability.
But honestly? I’m exhausted. As she enters week three of a six week radiation plan, she feels absolutely terrible thanks to mucositis (I’d link it, but I love you too much to expose you to the realities of it) – and so far the best thing they’ve offered is pain meds. It’s all par for the course, but I find myself feeling really sad that I can’t help more despite doing everything and anything in my power to make her more comfortable according to science. The dental oncologist reassured us that we were going above and beyond what’s considered great care – but sometimes, despite doing everything right, side effects happen and not to worry. THIS VIRGO DOES NOT LIKE THAT. Still, I understand. Stubbornly. I’ve found a few more solutions that I’m running past her radiation oncologist this week – but it feels as though this is very much the very worst part of “it has to get worse before it gets better” in her treatment. Bleugh.
So, if I’m a little quiet around these parts – feel free to find me on Instagram or Twitter, send a little hello, and know that I’m working on coming back as soon as I possibly can. The only upside to mom getting radiation in Houston is that it’s a city full of tacos, glitter, and color – so I wouldn’t be surprised if you see a bit of that popping up here soon.
To healthier and brighter tomorrows,