Happiness = time with my kids ♥️🧡💜
Happiness =
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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. 💜💜
Good Company
You know what makes an 11 hour treatment appointment at the hospital bearable? Good company. 😂😂😂
Morning Commute
Here’s what it means to be broken open by pain. You also get intense moments of gratefulness and joy. Driving into work today, listening to Thank U Next on the radio, and just feeling so grateful for all that I have. Despite it all. Joy.
Rad isn’t Rad
Well gosh darn it, the route to wellness keeps changing. We thought that surgical resection was possible, and that would be preferrable. Instead, the new team (neurosurgeon, ENT surgeon, and medical oncologist) report that the scans show that the risk benefit ratio doesn’t work out in Mark’s favor to consider surgery at this time. The tumor is too close to the optic nerve and to the carotid artery. That’s a major blood vessels that supplies blood to his head, neck, and face. Kina want to keep that one intact.
So zap the heck out of the tumor it is. Mark’s radiation starts on December 9. Five days per week for six weeks, they will deliver to the tumor the highest dose of radiation that is tolerable using IMRT (Intesity-Modulated Radiation Therapy). They start with creating a mask. Picture a fencing mask filled with tiny holes and made of plastic that can be molded to exactly fit Mark’s head. Every time Mark goes for radiation, Mark will lie on a table and they will put him in the mask, fix the mask onto the table to keep Mark completely immobile, and then roll him into the machine. The radiation machine can deliver radiation the conforms to the shape of the tumor, with the radiation technician watching a realtime scan of Mark’s skull while administering the treatment.
To keep the tumor on it’s toes, Mark will also get the highest dose of chemo possible every three weeks. These chemo treatments will start with a blood test to make sure everything’s going okay, and then fluids to keep his kidneys healthy, and then anti-nausea meds, and then the chemo followed by a chaser of one more bag of fluids.
The side effects are daunting. The chemo brings the usual crapping stuff: nausea, fatigue, loss of taste, poor appetite, and just for some variety, the potential for hearing loss as this chemo drug can accumulate in your ears. The radiation is next level. In no particular order, it can include possible loss of vision, more hearing loss, fatigue, loss of salivary gland function, difficulty swallowing, weight loss, possible feeding tube if he can’t keep up his weight, open wounds in the mouth, tooth decay, bone loss in jaw.
I’ve never climbed a big mountain. I think I’m about to. Mark is embarking on six weeks of truly unimaginable challenge. He needs prayers. We will need support. The former, we know that all you caring, loving friends and family will give. We are grateful for life every day. Mark is fighting. Stay with us.