|Fun with DIY projects|
However public it truly is, this blog feels safe. Things I would never post in a Facebook status or tweet feel more discreet in a blog. Facebook tends to devolve into a discussion that has little to do with the original intent of the post (generally to the point where I want to just delete the post and maybe even delete my entire account because YES, OF COURSE I HAVE GOOGLED IT ALREADY or whatever the obvious answer/suggestion/recommendation/solution is). Twitter can be so easily misinterpreted because it’s so out of context. Like when someone last week retweeted me with a “thoughts and prayers to you in your first world problem” kind of situation, when this person had no idea that I own the domain webothhavecancer.com. Out of context, my tweet looked like a vapid whinge, and while, my life is definitely significantly better than a majority of the world, things aren’t roses right now.
Though I can’t afford proper therapy, I’ve learned enough from my friends who can afford it — that my feelings are still my feelings, no matter how much I acknowledge that life could always be worse. Of course if can be worse. It could be worse for all but one person on the planet — for that one person who, at this exact moment, truly does have it the worst. But outside of that, I’m trying to accept that a lot of things suck for me right now. My family, while full of love, has had to deal with a lot of trauma, drama and heartache, with horrible timing and unfair swings of emotion.
I’m holding my shit together because I have no choice. When David comes home on the weekends, I usually lose it because I can. I hold it together during the week for my kids. I have no time for self-care. Please don’t tell me to make time because right now I’m in survival mode and self-care is NOT at the top of the list. The idea of adding one more thing to my To Do list right now — finding time for a yoga class or a walk around the block — adds exponential stress, particularly when I fail to cross off that one more thing. If you’re itching to comment that I should put on my own oxygen mask before helping others, please refrain. Think it, but understand that right now that’s just not possible. Survival mode.
I’m pretty frustrated with the medical and health care system. My dad’s had an invasive recurrence, and I am not happy with the attention (or lack of attention) and communication that he’s received. I’ve advocated for him deeply. Phone calls aren’t returned. Surgeries aren’t scheduled. Doctors have made incorrect assumptions about my dad’s choices. People are giving us different information. I can’t tell if the surgeon wants to operate because he honestly thinks he can cure my dad or because my dad happens to be an interesting case.
My dad is as stoic as ever, though he’s trapped in a situation and a location that he has no control over and I just feel awful for him. The poor man lost his wife and best friend of almost fifty years. He spent the last two months of her life in extreme pain from his own radiation and chemotherapy. I want to just hug him tightly 24 hours a day, but he feels like he’s a burden on us. He’s not. This is family, and I love him. He raised me to love and help and be there for family, and it’s a no-brainer that I want to take care of him and spend every minute I can with him.
But it’s a crap time. I hate that there’s no home health care (yes, we’ve looked into palliative care, which is not hospice, but it’s been a several week process to get that ball rolling, involving financial forms and phone calls, even when it ends up that you qualify for full financial assistance because, well, you lost your job the same week your wife was diagnosed with pancreatic cancer). I just wish home health care was standard. I wish there was a team of people who had eyes on my dad on a regular basis. I wish people would call us back. I wish it felt like the doctors saw my dad as a whole person, for, like, one minute — that he was more than a 74-year-old widower with cancer living in his daughter’s basement. It feels like they’ve given up on him, but that they forgot to tell him that and want to cut his head off to try to save his neck.
It’s infuriating, and my mind is swirling. I want to be kind to everyone, but I see people with full sets of grandparents and I just get angry. And sometimes I just can’t get out of bed even to do something so simple as to turn off the light because even that feels too overwhelming. And I tweet about it because that’s all I can do — throw a whinge into the universe.
I know. Life could be worse, but it really really sucks for my dad right now. And having just watched my mom endure a really awful death, I want my dad to be able to catch a break for once. He spent the past 3 years caregiving or in treatment, and he could really just use a week at the beach. Or, like, to not be in pain.