I've officially been on Methadone for the full 10 days it takes to build up in the system for hospice use. Methadone is an extremely long-acting pain relief, so it takes a full 10 days to create a base layer of pain protection. The pharmacology behind it, specifically in regards to hospice use, is super interesting 🤓

What wasn't interesting? The absolute shitshow of awful feelings I experienced during the transition... some of the worst side effects I have had since my neurosurgery. I was completely down for the count for 4 or 5 days - sleeping 18+ hours a day, dealing with a ton of pain in every tumor site, tons of neuropathic pain, achey all over, vomiting, hyperhydrosis flare ups, and feeling just straight up exhausted. My nurse Danielle said I can expect another couple days of this and then I should start to feel more comfortable.

I've also experiencing more intense neurological symptoms that may or may not improve with Methadone. The most frustrating for me is very vivid dreams where I wake myself up talking and moving - couple that with moments of deja vu often, and vertigo/double vision round the clock. All this has made me feel confused and emotional; for several days I was having a hard time knowing what I'd actually talked about with people or what I'd actually done already. I still feel like I'm constantly asking "Did I already tell you this?" I can see the shape of people and things but I can't always make out who or what it is until I get much closer. So if you see me looking right past you, I'm not trying to avoid you, I swear! 😅🫠

Additionally, my tongue continues to be crooked (seriously..wtf 😒) and is more swollen, as is my entire mouth and throat. Who knows if it's neurological tumors or the chest tumor pressing on my esophagus but whatever it is, it's the most challenging of current symptoms. I have total mush-mouth to the point that I am becoming easily annoyed with my own self while trying to talk. It's also made eating, drinking, and consuming all the meds extremely difficult, impossible in some cases.  I'm definitely relying on softer foods and thicker liquids. Water causes me to aspirate regularly, especially when trying to take my oral I pills. Daneille prescribed me a powder called "thick it" to add to my water and I haven't been able to bring myself to try it yet 🤢🥲 

Because the focus of Hospice is on comfort, not managing long-term illness, and the newfound challenges of swallowing pills, we are beginning the process of weaning off of some of my pre-cancer medications such as the two for my migraines, and reduce the overall pill load by taking less pill form and more liquid form when available. Last week, I was taking 36 scheduled pills and between 6-10 as needed pills Every. Single. Day. 😳😭

Once I am in the Hospice House, I will have zero pills and only three medications total - liquid Methadone for pain management, dissolvable Lorazepam for sedative (I already take a low dose of this one to support my overwhelming feelings of anxiety), and liquid Dilaudid for any breakthrough discomfort. So the next two-ish weeks will be slowly tapering everything down. This week, already, I am down to 16 scheduled pills and 6-10 as needed pills! I have added liquid meds 6 times per day and have wiggle room to swap two more meds (6 pills) to liquid when I want to. It did bring me a small glimmer of joy ✨️ to be able to get rid of one of my pill organizers and condense down to just one! 👏

Because of the impending snowstorm (is it actually a snowstorm? Is it going only going to be 2-4"?) will give us an excuse to hunker down and hang out at home ☃️ We had planned to take the kids and Adam for a tour of the Hospice House but we opted to reschedule. We did get to go out to 🪩 Cosmic Skate 🪩 night with our friends last weekend and it was so fun! Disco lights, music, and open skate for an hour! Watching Geno have so much fun cruising around the rink and feeling more confident with some speed, was so exciting to see. I also felt pretty good that evening after a long nap so I was able to watch the kids and dads have fun on the ice, and hang with Kylee and baby Colton 🫶

Then the week got pretty rough, again. As I took the final two steps down off Morphine, I was not prepared for the intensity of all those symptoms mentioned above. I was experiencing a ton of fatigue due to increasing Methadone + Lorazepam, and ended up napping through most of the visitor hours - that doesn't make me feel any less grateful for ALL the help! Dishes, laundry, organizing closets, meal prepping, hanging with the dogs. We are so so thankful 🙏

Callie had her competition dress rehearsal last night and she and my sister knocked it out of the park! 💃👏 Gillian did hair + makeup, and helped Callie  through costume changs backstage. Also always grateful for the momsnand staff who did all of her costume adjustments, rhinestoning, and helping my sister learn the ins & outs of backstage. Because of my significant neurological symptoms, I had to just sit tight in the rehearsal room instead of my usual hustle! It was a really emotional night for me - I miss the hustle and I love the girls' energy & excitement backstage. And reality hit me like a ton of bricks when I realized this was very likely my last night seeing her dance fom the audience. I shed lots of tears of grief and sadness yet also immense pride at how confident Callie was and her willingness to adapt to so many changes in her life at one time.

A family member recently talked to me about "God moments" and, regardless of what you believe it to be - the universe sending you a sign or a simple coincidence that brings comfort - Callie and I got to experience that with her Lyrical song by a very special teacher in Callie's life, Miss Maddy ❤️ Their song is "Let Them Be Little" and for my entire career of being a Play Therapist, I had those lyrics hanging in my office. It embodies who I am as a mom and as a therapist- always and unconditionally giving children what they need. When Callie heard the song, she knew immediately and shared that story with Miss Maddy. That is definitely a God moment 🫂

I'm also recognizing gratitude for Adam's influence on our kids in the form of being able to take things one day at a time. Its a beautiful balance to their emotional intelligence and I envy their ability to regulate their emotions in that way. I'm so proud of our kids and of Adam and I for showing up in our family every day and tryint our best, and our best looks different every day now, so we will keep riding the wave together as I move toward what feels like the final chapter of this cancerous journey of fuckery. Where the pendulum swings hard from being so exhausted of living in pain and heartache to the other side where my heels are trying to dig in and stop this from happening still. 

We aren't sure what any particular day looks for me at this time, but my capabilities are less and less dach day, as Adam takes on more layers of the primary/solo caregiver. Please give him hugs and kudos and specific offerings of help (sometimes he's worse at asking for help than me 😳😅). We have visitors for me covered through the end of February and we have been really loving all the meal deliveries lately- we have been getting meals throughout the week and letting our kitchen be a restaurant all weekend - the kids love it! 😅

📣📣 We are really working on reducing the treats and portion sizes as a family, though, as all of the comfort food hasn't always given us opportunity to listen to our bodies. So we ask that meals no longer include dessert, and please ask Adam or I about snacks if you plan to bring that; and half portion sizes of meals are also welcome!! Groceries are expensive and we do not want to waste any food. DoorDash gift cards are also helpful so Adam can grab dinner on the way home on sports nights.

Thank you all for the encouragement and support, as always! We love and appreciate every one of you!

❤️ Elizabeth