2019 Made Me Tired

I’ve stayed quiet on Mark reports out of respect for the holidays. We have had many happy moments with the kids, and so much good food. The tree was the best it’s ever been, we have this adorable rental dog, as I affectionately call her and as you have perhaps seen, to distract us. Now the Pittsburgh grey skies have set in to hold us captive til about April. Mark is on week 4 of radiation. He just completed another 11 hour day of radiation and chemo yesterday. The side effects are setting in on schedule. He is exhausted and a tad confused. He’s having a harder time swallowing. That’s because the radiation zaps the salivary glands and makes his saliva thicker as well as reduced. His vision in his right eye is declining again. That’s because that pesky tumor is hanging out right by his right optic nerve, and even the fanciest of radiation machines and the most skilled of docs and technicians can’t dose the tumor and not the nerve. He’s having a harder time hearing. That’s because the chemo drug, cisplatin, can accumulate in the ears. To try to move more carefully down the rabbit hole of hearing loss, we are switching him to once a week smaller doses of cisplatin rather than a whopper dose once every three weeks. That means more 11 hour days at the hospital, but keeping a more careful eye on his hearing. He has no appetite, and while I am getting pretty good at sneaking calories in (if I offer you a shake, unless you want it made with high calorie Ensure, PB 2 powder, and half and half, you should decline), he’s still losing weight. That’s because the radiation causes enough cellular havoc that his calorie needs are even higher than normal. He’s cold all the time, and all his Christmas presents were about heat. Electric blanket, hot packs, neck warmer, portable heater. The more uncomfortable Mark gets, the less easy of a patient he becomes. Sometimes the only person that can get him to take his meds is Michael. It makes me worried for Michael as scenes like last night’s play out, with Mark very confused and refusing his meds and Michael and I together having to figure out how to convince Mark to take them. That’s a lot for a 19 year old kid. All these facts lead to one obvious conclusion: things are hard, and they are going to stay hard for a while. Maybe all of the grey sky season. All we can do is accept it and keep going. One foot in front of the other. Ever onward, Diane

Lila Dispatch 5

Dear Mother and Father, Next to Fake Mom, Mark’s caregiver Bobby is my favorite. He’s covered in Jesus tattoos, has the best stories, and sneaks me treats. Bobby tells Mark that community keeps us strong, and I like that because I’m staying strong with support from this new family, too. Bobby reminds me that love is all you need. And pasta. Love, Lila

Lila Dispatch 4

Dear Mother and Father, This is the seventh day of my dedicated study of Chanukah. I only understand the word “amen” so far. My favorite parts are the candles, the smell of gelt, and that Fake Mom lets me join in. Can’t wait to tell you all about it! Love, Lila

Lila Dispatch 3

Dear Mother and Father, Fake Mom set this plate in case a friend or Jesus comes. Adam says it was first for Elijah before it was for Jesus. I’m hoping it’s for me. I request leftover ham. Fake Mom says I’m missing the true meaning of Chanukah and Christmas. They love me anyway. Love, Lila

Lila’s Dispatch 2

Dear Mother and Father, Fake Mom looked on Wiki How to make sure she was doing Chanukah right. She decided we needed to go to Dunkin Donuts this morning to get a dozen jelly donuts. When you come home, can I pretty please show you the wonder of the Dunkin Donuts’ drive-thru smells? I promise I only want the smells, not the eats. Love, Lila

Rental Puppy

Dear Mother and Father, Merry Christmas! I am enjoying my stay in the deep suburbs. I’ve killed two plush animals, eaten a delicious cow urethra, and have convinced this new fake mom to let me sleep with her every night. I hope you are having a wonderful time on your trip! Love, Lila

Dear Hilly

Dear Hilly, I love your photos full of color from Sedona. I’m sitting in my living room, watching the sparrows build a nest in our birdhouse. The slightest bit of warmth, and they immediately get on task. Do they think it’s an early spring? Do they think they could fit in a brood before New Year’s? Where inside them is the urge to respond to the smallest opportunity for life? Hilly, I should have left it alone but instead I took this photo and then stripped all the color out of it. What is it in me that wanted the starkest portrayal of the line between life thriving and life quietly waiting? Between winter’s darkest days and the drive to survive? Love, Diane

Marriage

Mark and I aren’t legally married. We have rings, we call each other husband and wife. The legal part just never happened. “Maybe we should get married because of the cold hard facts,” I said to Mark this afternoon. This was after I told him that I talked to Social Security today, and his kids will not get any additional money because they are already get money from their mom having died. SS gives the kids the higher amount from the two parents. Because Mark will also be collecting on Social Security disability, the amount the kids would get due to his situation ends up actually being less than that amount they currently collect because their mom died. Even though she died after working many less years than Mark. Overall, financially, it would make sense to get married. “Cold hard socks?” he said back. I was sitting right next to him on the couch. Over the course of the past week, Mark has lost much of his hearing. Side effect of the chemo, most likely. We haven’t even gotten to the radiation side effects yet. “FACTS,” I said a bit louder. “Sacks?” he tried again. “FACTS! COLD HARD FACTS!” I repeated loudly. “About your pants?” In his defense, I was wearing some pretty ridiculous pants today. It’s a side effect of Mark’s cancer that I’ve become strangely attached to shopping online for pants that I can only describe as “clown pants.” They make me happy. He recommended last night that I not wear them to work. I did anyway. “DO YOU KNOW WHAT WE ARE TALKING ABOUT?” I yelled. “No,” he said. “MARRIAGE. I’M TALKING ABOUT MARRIAGE.” With a little shrug and a chuckle, we both gave up. We were definitely talking about marriage. Like married people. Ever onward, Diane

Friday Night Reading

If I could, I’d buy everyone I know this book. It is excellent. Be brave and go buy it. And yes, I spent Friday night reading it. But look at the full scene, and realize I am warm and content. 💜💜