I’m a little brain fried today. We’ve had a few days of battling some illnesses and my body and brain are tired from logistics of a slightly under the weather baby, husband, and self. But, I’ve been getting a lot of private messages and texts asking about how I am.
And we all know I love to talk about myself, so here’s an update.
Things are…ok. Stable-ish.
Andy is coming to the end of the second round of chemo. We’ve found a rhythm. Ronan and I are back in the swing of coworking and grandparent daycare and hanging out together.
I no longer have to lay down for all of Ronan’s nap time to feel human again. I actually got everything lined up for my business taxes, which is a pretty sizable undertaking.
The fog of grief and depression are lifting and things feel…normal. Breakfast, activities, lunch, nap time, errands, dinner, bed. The rhythm has emerged again.
But I still get slammed regularly by a reminder of the non-normality of it all. Andy has a pump on and can’t turn easily in his sleep. Ronan is being a baby and kicks Andy in the chest and Andy’s immobilized with pain because Ronan, of course, found his chest port. A list of everything we need for chemo day for ourselves and Ronan sits on the kitchen table. The cards and presents from loved ones sit in our living room as a reminder that we are loved and that love is coming in strong, hard waves because of something as devastating as Stage IV cancer. Someone posts in a Facebook caregiving group about how their loved one had a symptom like Andy and it turned out to be even worse cancer than they thought. Someone has entered hospice care. Someone has died.
Those ones are particularly hard to read and I usually have to walk away from that part of Facebook for a few days.
But never Facebook as a whole because sometimes reading about other people’s stuff is the only way I feel connected.
Also, y’all are good fodder for blogs for Willhelm Consulting. I can take a societal temperature via social media.
I’m still sometimes overwhelmed with the concern about how to pay our bills. Or more accurately, how to buy groceries, gas, diapers, and the crazy non-essentials like a take out meal when our baby has fallen asleep in the back of the car and we want to keep driving so he gets a decent nap. I’ve been told over and over that help will come and people won’t let us go without help. And yet, there is no structure or rules around how and when to ask for money in these situations. And, call me crazy, but out of all the things I’m managing, finding the courage to ASK for money is not something I’m really going to work up the energy for. The human brain can only handle so many open loops and some are bigger than others. My brain hit its capacity 58 enormous loops ago.
At some point I’ll update the GoFundMe with a new amount if Andy is out of work during the HIPEC procedure (God willing that happens. I’m so superstitious about it.), but for now I’ll just check into Mint every day and be very, very judicious about how and where I buy groceries.
You know, the fun stuff that a family in existential crisis should be dealing with.
And even if I wanted a full time job (I don’t) it’s not like the offers are rolling in. That’s not true, exactly. I did get an offer for a slightly less than part time job that comes with childcare for a company I care deeply about. It’s not consulting work (yet), but I can do my back end stuff if things are quiet, so that’s a positive development I need to keep in mind. The start date is fuzzy, which is why I’m not treating it like a done deal yet. A lot can change.
I’m using some consulting dollars to hire a resume coach to help, but I’m sort of mad that I have to do that.
I’m just mad a lot right now.
I’m mad that people can’t keep their shit together or get help so their crazy doesn’t spill out sideways.
I’m mad that the richest country in the world has no safety net for those of us managing serious illness or caretaking those who do.
I’m mad that a group of very wealthy people thought donning black designer dresses would be helpful to those of us who can’t pay for health insurance AND still deal with discrimination and harassment. Or maybe they weren’t thinking about us. Thoughts for another time.
I’m mad that I’m highly educated and smart, sensitive, compassionate, and funny as a banana peel, but I can’t find a way to make a living at 31 that can sustain my family. It’s just not what I had pictured at this age.
I’m mad, so so so mad that our lawmakers don’t just make single payer healthcare a thing. It’s fucking inevitable, let’s just do it now.
And I’m still mad at all the usual stuff like our President and mansplaining and fatphobia and the diet industry playing on new mom’s tenderness to make a buck and a lack of affordable, cute shoes in size 12.
So, yeah, the initial fog is gone and I still feel wildly helpless. Andy still has cancer, we are still stuck in this shitty shitty situation with not a lot of options or ideas beside the course we’ve been set on.
I wake up every day scared that I’m about to lose him. It sucks to go to bed on New Year’s Eve and wonder if this is the last time you will see the calendar change over together.
Will Ronan grow up without a father? Will I have to raise a teenager on my own? Were we poised to raise a well-adjusted, happy, healthy, adaptable boy who could actually be a part of the change in our culture we desperately need, but now that will all fall apart because he won’t have his papa?
It’s probably because I’m tired and listening to music that is making me sad, but I still can’t quite see the light. I still can’t plan more than 4 days in advance. Some days I can’t think about more than what Andy and Ronan need in the moment and completely forget my own needs until I’m dehydrated or hungry or have a bladder that’s about to burst. My body aches all the time from a lack of good movement. It just all sucks.
The shining light in all of this is that Ronan is still a smiley, happy baby and Andy seems to be managing everything very, very well. These Willhelm boys are mighty resilient and I hope that this resilience is working its way through the mucousal membranes of Andy’s body to kick the shit out of cancer.
I am their emotional shamwow and after all of this I’ll need someone to wring me out.