To say that things have been difficult since beginning Votrient would be a gross and negligent understatement. Trent has missed days, yes days, of his life. There’s the irregular morning sickness that he has stopped fighting and given himself over to, because it’s just easier to let it all go. There is diarrhea – often, with a belly that rumbles like a mini-Texas storm front. He battles extreme fatigue, inability to eat, sleeplessness and irritability. Irritability. Yeah, irritability. His hair is white and softer then Coley’s. No jokes about it not mattering about his hair because “he has none.” He has hair, and feelings, and it sucks that he’s made a come back from being totally bald -everywhere- to looking a little bit like Gunther from “Friends.” He’s endured skin changes and wounds that won’t heal. He has a myriad of other side effects and symptoms. Some I won’t share because it’s too personal and some I can’t share because only he knows what they are. He eats what he can when he can. No spicy. No cheese. Yeah, no cheese. Cancer is so cruel. We combat the “nothing sounds good/tastes good” with trusty ole Strawberry Ensure. It usually does the trick – meaning he can swallow it and it stays down, and in. Mom fights the good food fight when I’m not here with choices. She’ll suggest a million things until she just settles on one and goes with it, cooking and serving with love – the only way we do it in this house. He tries to eat. If you happen to bring a meal and he’s not into it please don’t take it personally – he’s trying, but sometimes he just can’t eat. He’s lost weight and muscle. But here’s what you need to know about Trent…he doesn’t stop. He does everything in his power to keep moving forward. If he’s down, he feels terrible and that is scary to us but in spite of all of the symptoms I mentioned above he’s still Dad. If he needs to take a break from being Up-Dad and transitions to Down-Dad, we’re prepared and it’s ok, but it’s emotionally taxing one everyone. We’re still just not used to it. It’s not Trent, and that hurts. Like, today. It’s a Down-Dad afternoon. *fever and pretty sick as I post. I’m watchful…*
But the boys never quit on him. Remember, little hugs have power. We’ve been dealing with insurance a bit. Trent is supposed to have a ct scan tomorrow to see if any of this is worth it, but according to Aetna it has been to soon since his last CT took check the growth of his Stage IV tumor. So we might have to put off his appointment with Dr. Cancer as well (who is a great guy, but that’s what I call him in my head). Thanks a lot, insurance – way to bridge the gap when we can’t…oh wait. You didn’t. I guess it’s a bit of a moonshot to think that a cancer patient would get what they need when they need it.
As for the rest of us. Sabrinna seems to be headed in a direction. She has a job! She loves it. She works a lot. She gets paid and school is on the horizon. Excellent. Steps in the right direction make this hot-mess mama happy. Lily is up and down, honestly. Some days are better than others, a fact I can totally identify with. We have somethings in the works for her and I feel pretty confident things will improve. Little G was a sick baby this weekend and just ate a nearly full meal for the first time since Friday night early today. He has more energy again. He gave us a scare, but he comes from good stock.
Mom is putting along. I know she gets tired, but she sticks to her schedule pretty staunchly, and I’m glad and proud of her for that. I could learn a thing or two from her about making myself a priority.
As for me, it was a rough…rough weekend. I had a long week, an exhausting Saturday, which led to a bad Sunday night which led to a worse Monday. Finally, a chink in the armour. I was exhausted and I can’t continue to do things the way I have been doing them. I’m looking into a few options as far as work is concerned, but I know I can’t continue to feel ripped in two every time I get in the car to head to work, or when I have to call in to work knowing that my kids at school aren’t getting what they need, and what they deserve, from a teacher who can only be there 60% of the time. And I cracked. I knew the things that I was thinking Monday were not good and I HAVE to be present for everyone. I sent a pretty cryptic text and my sisters, and brothers, came through for us. I’m so thankful that we have the people in our lives that we do. My heart breaks for people who don’t have or can’t access support. You can’t make it without a team. This disease is the worst. At times I’m sure I’m being tortured, punished for something. I must be, that’s the only logical explanation. Cancer multiplies in its victims and seems to virtually do the same in those closest to the sick. It will rob you of everything. Mind. Body. Soul. I was empty. A shell. The hair on my neck stands on end when I think about how much worse off I would be if it wasn’t for our babies. We have so much to live for, and fight for. Thank you for hearing me and bolstering my heart when I couldn’t do that for myself.
I’m working on treating myself better and listening to my little voice. I’m working on taking my own health seriously. It’s difficult, but I know that nothing works without me and I have to be here and be good. That doesn’t mean that I’m not allowed to be down, I just can’t stay there. If you are a caregiver, or anyone, who is suffering please reach out – to your healthcare team, to a friend who will listen and take you seriously, to a boss or coworker, to your pastor – shoot, to me if you need to. You are not alone and somebody loves you and hates to see you in pain. Please, reach out. Thank you to The Flatwater Foundation for providing my family with the counseling services that we need, and for providing such a necessary service to families who are simply trying to find peace. (It’s free, y’all!)
As always, thank you for reading – shoot, and wearing!