How are you?
It’s a simple conversation starter people use when they really don’t want to know.
I’m not making resolutions. They don’t usually work anyway but I also try to take life one step at time these days, trying to do the next thing and the next thing. I’ve been in a real funk lately. There are many contributing factors: short daylight hours, winter cold, the anniversary of my mom’s death, Christmas without my mom, rotator cuff issues, the return of hand foot syndrome that made walking painful again, fatigue, nausea, explosive diarrhea, a nation in turmoil. I have absolutely earned the right to be in a funk. I made a point to attend a Siteman Metastatic Cancer Support Group via zoom this week. It meets weekly but I have not forced myself out of bed in the morning to participate in several weeks. I am so glad I did. They asked for an update and I said, “Not good…no I’m fine…wait… I am not fine.” What a relief to say that aloud. In this group, no one’s eyes glazed over as I continued. No one tried to convince me that I really should be happy instead. No one tried to tell me how to fix it. No one changed the subject. They know I have the tools to get myself into a better mindset and that I eventually will, just like all of them. But for now, they let me wallow in it. It felt so good to say it and to say it to people who truly understand. No one said, “Well. We all are going to die someday.” I really hate it when people without a terminal illness say that to me.
I am also not a fan of well-intentioned people who see me and tell me I look so good that they would never know I have cancer. Just what does cancer look like? On my bad days, you don’t get to see me. You don’t see me suddenly have explosive diarrhea when I’m just watching tv. You don’t see me suddenly throw up as I am driving down the road. You don’t see that I carry a bag with extra clothes and baby wipes and ziplock bags whenever I leave home. You don’t see the fatigue. You don’t see the pain. You aren’t there when I get my port accessed with the huge needle. You aren’t there as I swallow chemo pills morning and night, knowing that in the next hour nausea will hit. You aren’t there to see me inside the clanging MRI machine. You aren’t in the exam room waiting for the latest test results. You don’t see my heart break as I wonder if this is my last “whatever” (Christmas, birthday, etc). When you talk about your job you don’t see my heart twist because it was not my life goal to be on SSDI at age 56 because I am completely disabled. When you speak of retirement dreams, I die a little inside realizing the chance of me living to age 65 is slim and, if I do, I will have no savings because I cannot work and our medical bills are large. Dave sees all of me, the good and the bad. He is there for all of it. Our children are also there in the trenches with me. My lab, Madi, also gets the real me. She listens attentively, never says the wrong thing, and loves me even on my most unlovable days. We should all try to be more like her.
I get it. It is awkward as hell talking to someone like me. You don’t want to say the wrong thing so you avoid me. It is probably a little scary being around me. If this could happen to me, it could happen to you, too. The dark sense of humor I’ve developed can be a bit too much for people. But I love random check-ins. I love funny memes, especially involving black labs and Diet Coke. (Speaking of that, someone sent me an adorable Diet Coke hoodie from Etsy. Whoever you are, thank you. I love it!) I’m not one to talk on the phone but I love to text, and video messaging on the Marco Polo app is fun. I love snail mail. I love to talk about my dog, my mom, my family, my favorite podcasts and true crime documentaries. And don’t forget Taylor Swift. It is hard for me to schedule things in advance since I don’t know how I will be feeling that day. I also don’t plan very many things away from home because of the cancer side effects unless it is with someone I’m willing to use that damned just-in-case bag around.
The next time you ask me how I’m doing, I’ll probably just say, “fine.” But now you know the rest of the story.
I am not in control. 