Oof...It's a long one...sorry about that lol! I'm on a "little" rant for the first half here so I will put a divider after said rant, so you can skip right to the updates part if you want to 🫡😂

The last couple of weeks have been relatively quiet from the outside looking in; and it's always interesting to me - seeing the way others react to someone going through life-altering shit. I've seen a variety of different reactions to uncomfortable emotions and difficult conversations, both in my career and now, being on this side of the table.

Earlier this week, I shared an article about people who "ghost" cancer patients because they feel uncomfortable, they are overwhelmed by their own emotions, or they simply don't know what to say to us cancer warriors. I've personally experienced this reaction from some people in my life. Others have said things like, "No news is good news, I assume?" and then I have to awkwardly smile and lie because I know this person doesn't actually want to know the actual news. Some have reached out with thoughtful messages, recognizing when I've withdrawn and offering specific support, understanding that things must be difficult right now.

(Here is the link if you want to read it - https://www.npr.org/2024/12/18/nx-s1-5179011/cancer-ghosting-survivorship-young-survivors) 

I've experienced ghosting on a micro level when I am in conversation about, or share something on social media, that's super positive and uplifting; the conversation easily flows or there are tons of hearts and comments on social media. But when I share the honest truth to "how are you doing?", or I post on social media something that's difficult and sad about this cancerous journey of fuckery, it's... crickets and the conversations fizzle out or awkwardly end with something like "you'll get through this." The reality is that I won't, and there's no need to sugar coat it. Tip-toeing around life-altering shit makes it more taboo to talk about, it brings shame to the experiences of grief, and is really freaking isolating. Maybe it makes you feel better but it certainly doesn't help the person going through said life-altering shit.

I say "I'm not done yet" because I'm still full of deep love for this life I have, and, simultaneously, that love doesn't change the fact that my body is slowly being overcome by cancer and I will die at some point long before I "should".

Because I am someone who often harnesses a lot of compassion and empathy, a majority of those types of interactions roll off my shoulder because - we are humans and emotional beings and we all respond differently to our emotions and the emotions around us. Each of us have different triggers and my situation is going to trigger others from time to time. It's okay to say weird shit sometimes as long as we can laugh about it together 🤣 and it's also okay to say "I don't even know what to say. This is a lot." or "I cant imagine what that's like to....", and I'll nod my head in agreement and that's all it has to be.

As you encounter other unexpectedly sad situations, I hope you'll remember that being there for someone else doesn't have to be something you overthink, remain in denial over, or run away from. Emotions can be uncomfortable AND they are allowed some space to just be. In fact, these emotions need to be seen and acknowledged for what they are underneath - deep love. If we don't, they fester and show up as anger and denial.  It's okay to not know what to say or do, and acknowledging that is much more understandable than awkwardly avoiding us or the elephant in the room. 

And if it's me, specifically, you can ask the most outlandish questions about any part of my journey and I am an open book! When I feel passionate about sharing knowledge or helping others learn what to do with big feelings, I will tell you anything you want to know (and probably more..if you've seen me talk about children's mental health or play therapy, you know this 🤣).

And let's be honest, most people experiencing the specific life-altering shit that is hospice care, are 50+ years older than me and are probably not blogging their entire journey, so we don't often read or hear about their perspective, unless you have lived experience with a loved one in hospice care. If I can help even a few others others understand what this is like by sharing my experience, in a sometimes brutally honest way, you may find yourself feeling better able to support someone else who's experiencing their own life-altering shit. 🩷 

(quietly steps down from soap box 🫡)

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Anywayyys... 😅 

(I am also going to be more mindful of the brutal honesty I do share here, because when I started tracking this journey it was for for MY mental health and I don't always realize the way I share my story can sometimes be jarring, and I want to hold space for your mental health, too!  So - trigger warning - sad life-altering shit ahead 🫶🏼)

Things have appeared relatively quiet from the outside but that's not quite the case here on the inside. Just a few weeks ago, I was writing about not needing or wanting to change my med schedule or increase any meds. Wow, did that change quickly! 🥴 It was like whiplash. Within the next two days, I couldn't use my left arm at all, without sharp, shooting pain in the left trapezius tumor up through my neck and down my shoulder and arm, and from the pectoral tumor in my chest down through my armpit; across all my clavicle and and down into my first rib.

And when that wasn't happening, the ache in my entire neck, shoulder, and arm that's always there in the background, sometimes more subtly, but this time it was louder. It feels like I'm carrying around a bowling ball all day long without ever being able to set it down, unrelenting soreness. So I spent the next few days high as a kite with my parents coming over the entire weekend to help us get through the next couple of days until my nurse came again.

Aaaand the first thing she said when she walked in? "You don't look good. You should have called me sooner." She was firm and honest with me; she doesn't sugar coat (just like my favorite Oncologist Dr Perez 🩷). We talked through changes in my symptoms and how much of the meds I'd been using at which times of day. Then... 🫠 we discussed the reasons why I didn't call her sooner, even when I had thought about it - hello, denial 👋🏼 duh, just a week ago I was smiling; feeling good and optimistic so, clearly, declining suddenly makes me feel like I'm going to die faster than I want to. I'm still not ready. We cried and she hugged me and we agreed that if I wanted to have more days, I need to exert less energy on the days I have 😔

She immediately called my hospice doctor to discuss some new orders and getting them delivered the same day, so that I could get started with the new right away. We came up with a new schedule system, still focused on my mom time but also prioritizing medicated sleep time so my body can rest. This really challenged me and my radical acceptance about where I'm at in this process and what my body is telling me I need. I'm 14 days in to it and I'm confident we made the right decision.

I still feel that background pain through my entire left upper body, and if I start doing too much, my neck seizes up in a stark reminder to sit the hell down...😒 rude. We have to rely on more help with our children, which feels stupid and hard as a primary caregiver who loves her job as a mom 😭

We've loved having people come over to visit - I've figured out that about an hour is all I can handle before needing to get back in bed. I also prefer a small group of people over several individual visits. I've been able to get out of the house a few times - bringing pillow and/or blankets with me everywhere I go, and honestly? Why didn't I do this sooner?! Let's normalize being
✨️ comfy ✨️ out in public!!

This new schedule also means I'm also sleeping a lot more, about 10-12 hours of sleep at night and then I usually nap another 1-3 hours in the early afternoon while our kids are at school. I stay just mildly medicated for the after school hours, so that I can interact and play with them as fully as my body allows.

And, of course, life outside of hospice is still moving along, with Adam champion-ing all the way. He's got kid schedules printed, stays on top of all the emails. Just out here doin' the dang thing and I couldn't be prouder 🫶🏼 We (by we, I mean Adam, because, once again, champion!) have our next project framed in and ready for electrical. Callie is getting geared up for competition season. Her first one is 10 weeks away and she is banking on me being there, "Even if the moms have to help and Gillie will help so you can just sit and relax and enjoy the show!" 🥹🫶🏼 I love her optimism so much, and, now I now have a new goal to focus on. I've been moving my own goal posts my entire life. Especially in my career and, now, I'm aiming for life ✊🏼 Geno is growing so much in his skate clinics and has been showing more pride and confidence; it's beautiful and amazing to see that part of him unfurl. Adam sends me videos of him because there ain't enough pillows in the world to make ice arena bleachers supportive enough for my body 😔 so I haven't been able to see him in person since October.

What I am blessed and soooo excited to see is another Christmas with my family!!! 🥰🎄 I got my Stage 4 diagnosis on December 21 last year (through MyChart, at 7pm on a Thursday, right as we were about to put our kids to bed... what an experience that was 😳). And in those first several weeks, I certainly did not expect to be alive this Christmas. Not only is it a blessing, but it brings me true peace and joy, and those two feelings have been missing a lot from my life recently.

Meals, gift cards, and financial donations remain the most beneficial avenue of support for us. We appreciate the outpouring of responses, feedback, and "shares" when we ask for help on social media. Our freezer is full again 😅🥰 so sign up for fresh meals only please! And small lunch portions are also helpful because 1. I cannot do anything more than microwave or air frying something right now 😑 and 2. Our kids are in sports most nights of the week so having things we can easily whip together and/or already portioned out is extremely helpful.

The kids have been loving receiving little added-on snacks, like a box of granola bars or a container of raspberries or blueberries because Geno eats them all in one day 🤭 but we don't need every single one of you to start bringing extras like you did before! 😂

Thank you for your ongoin  support,  messages, love, and generosity! We hope your holiday season is full of the things that fill your cup!! Tell your people you love them, take the picture, make the memories 🫶🏼 We don't do Christmas cards so here's a random selfie they left on my phone 😅

With love & gratitude, 

Elizabeth 🤟🏼