Tag: writing

You don’t really want to know.

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.

Living on the Fringe

My Christmas Cactus must know that I need a little Christmas, right this very minute. She is blooming full force. She does her spring and summer on the oasis. I just try to keep her going until she can go back outside next spring. I guess I am just trying to keep me going until, well, I don’t know that answer. I feel that I am in the midst of a challenging period of growth. Those are always tough until I come out better on the other side.

I have always felt like I was on the fringe of society – not an outsider, but certainly not an insider. I had friends at school but that did not really translate to people to hang out with after school and weekends. Same at college. Same at every workplace. Oh, I can point to reasons beyond the obvious social awkwardness. I have always needed quiet to process and sort life. That is difficult for some to understand. I enjoy solitary hobbies like playing piano and organ. Yes – I can play in front of many, but most time is spent practicing alone, my favorite kind of playing. I was always surprised to hear when most co-workers went to an evening or weekend outing of which I was unaware. At my last job at the co-op, the other 5 people who worked in the main office with me would order lunch and never let me know. But, to be honest, I never felt deliberately excluded. I felt more like an after thought. I worked hard at work so I could get home to my family earlier in the evening. I also am really bad at reading people. I always assume the best in people until they show me otherwise, but then am shocked when they do. The election reminded me of my place in the fringe. While it stings, I needed the reminder that not everyone has good intentions toward me, my children, and people I love.

I have done a lot of advocacy work since I was diagnosed, both for metastatic breast cancer and for breast density. Advocacy requires many contacts and lot of social media. It is also work. Social media is not good for me. I am an empath so I take on more people and causes to care about and lack the ability to scroll past loud, angry social media behavior. I think of social media like the scene from the movie, “The Wizard of Oz,” when the curtain is pulled back to reveal that the Great and Powerful Oz is really just a tiny man working an effects machine. Social media gives us a false sense of security that we can say anything without consequences and we don’t have the opportunity to “read the room” to see if our true message is being received. We see examples of loud, threatening behavior on social media most days. Some of you handle it so well and I admire those who can debate their position in a calm, straightforward manner. That used to be me. That is not me anymore. Five years plus of a terminal illness, years of caregiving for my parents, the pandemic, the divisive nature of our society and some serious illnesses in my family besides my cancer has rendered me unable to handle social media. For that reason I am giving up my advocacy work and making my circle smaller. I am surrounding myself with the people I know for sure have my best interests at heart. Here, I hope to find some peace.

The HFS (Hand Foot Syndrome) is intolerable. I stopped capecitabine again but am still waiting for the pain to subside. Living with pain every moment, day after day, is exhausting. I am afraid that I am not going to be able to stay on this line of treatment.

Other channels of peace

My “inside oasis” is either at my piano or in my Llama Lounge (my former office for work). This is where I write, zoom people, draw, sew, and scrapbook. Two very special little girls provide me artwork, along with the painting my daughter made for me a few years ago.

Here are some photos of the Veterans Memorial in Elliott, Illinois. My dad was an Air Force Veteran and we used his memorial money to place a bench here and to fund some improvements to the memorial. Other than his time in the Air Force, my dad spent his life on the farm in Elliott. I love spending some quiet time here at the memorial when I want to think about him.

I can also count on my 2 black labs for providing stress relief. This is what Madi does when she wants her tummy scratched.

“Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid. “

John 14:27