I say it every time but this is really long - like, really long. A lot has happened (as usual), and I've been documenting this journey closely for my own personal processing; it helps me see big picture when I get lost in the plot 🫠 and in case my kids want to hear my story some day, like some dramatic narrated retell of their early life 😂,  okay, okay, sorry. Here's the TL;DR version:

- still dying

- cancer probably spread throughout my CNS

- weird crooked tongue... triage calls 

- moving in to Hospice House at some point soon

- also some cool stuff we got to do because I'm still a mom first and foremost! 

🙃

The last couple of weeks have been the most up & down I think we've experienced yet. The emotional whiplash is still stinging. I'm not sure where exactly to begin so I'm going to just go from the end of my last blog update through today.

We, thankfully, were able to find a morning child care provider, in the form of an angel neighbor who happens to be a perfect fit with our family! She and Adam spent a few weeks overlapping as she and the kids got to know each other, and it's been smooth sailing. She is patient and kind and all the good things our kiddos need! The priority of getting Adam back to work full time was really pressing on us financially, but unfortunately, my health continued to decompensate which led to him never quite getting back to full-time, yet. 🫠 

That same week of January 6, my pain continued to increase to the point a med adjustment was necessary to avoid leaning on my PRNs too much. I wasn't ready to switch medications altogether yet (more on that soon..) so for now we increased the doses. Along with the increased pain and adjusting meds comes increased irritability and emotional dysregulation (Cue the tears! Like, a lot of tears 🥴). It's impossible to shield our children from some of these raw and overwhelming moments, as much as we'd like to. And in these moments, I am extra grateful for my career and the knowledge of how to support them after seeing something stressful like their mom crying in pain.

There are two new hot spots we assume are cancer - my left hip which is causing significant nerve pain down my thigh, and, unfortunately, my brain (again 😒). That same week, I began experiencing some minor auditory hallucinations, difficulty typing and texting again, and then a few days later came some double vision and dizziness pretty much round the clock. I was also vomiting consistently for 48 hours, which added to my fear, because all of these symptoms felt eerily similar to those I experienced in September before my neurosurgery (remember, the one where the doctors said they were shocked I hadn't begun seizing already?! 🫠)

All of this led to my care team restarted me on steroids  (MF 😩😠) to reduce inflammation of any cancerous spots, especially my brain. They added some extra nausea meds and that symptom went away thankfully, so we chalked it up to the med adjustments. I hate steroids so much - the steroid face is back in full effect 😭, I am so restless, and the lack of sound sleep is difficult now because I want to sleep! I am exhausted! But if this means possibly avoiding seizure activity, then I'll do it. 

Because we aren't doing scans or treatment anymore, we have no idea about anything with certainty. It's not even worth spending time considering what's what, because none of that matters to my treatment. This unknowing feeling isn't new to me - much of this entire cancerous journey of fuckery has been venturing into the unknown (Hey Google, play Into the Unknown from Frozen 2 😝). But for some reason, this particular phase of the journey is really hard to sit back and accept.

Part of my struggle in acceptance is simply the overwhelm of sooo much change snowballing - at same time as I am adjusting to new symptoms & pain, and adding more medication and feeling worse physically, I am also fading out of my role as the default caregiver to allow Adam the space to grow into that role; to find out what that looks & feels like for our children and for him. Going from a successful, hardworking mom who had it *mostly* all together 💁‍♀️, to a complete backseat caregiver who can't even keep track of their sports practices or help with spelling words because I'm having a hard getting my own words out 🥴,  all within 3 months... it's traumatic.

Looking back at the hardships we have experienced in the last couple of weeks, I can now see how all of that led me to seek control over things that didn't need to be controlled. My innate care for our children and grief about not being here on earth through the rest of their lives has, understandably, created a mess of emotions in my head. 😭  Emotions that were telling me "No one else can do it good enough." "No one can meet their needs the way I can." "No one knows their quirks and little signals and is as deeply as attuned to their nervous systems as I am." My anxiety was lying to me. It was making me believe that I can't trust anyone else to take care of of my children - which isn't the whole truth. Our children are resilient, amazing, emotionally intelligent humans who are literally engulfed in love and care from those around us. My anxiety made me, unintentionally, undermine Adam's role as a fantastic, involved, primary caregiver. He, and we, needed to figure out a different groove now.

I knew it was time I called on some really wonderful mental health professionals to support Adam and I as we navigate this transition; how our parenting roles are changing and how that is impacting our the dynamic of our marriage. It's really heavy stuff and we are trying to use our time left together with as much intentional, healthy interactions as a family as we can. We want our kids to look back at this time and not just recall the scary stuff; we want them to also remember how our family spent so much quality time together and how their parents did everything possible to be the best parents for them.  This will only continue to foster that innate resiliency our kids possess. They are all going to be okay, even through the thick of it in coming months. Through this big emotional labor, we have found ourselves needing to create systems that meet our children's needs AND work for Adam in this new role; because the systems we have in place worked for *me* as the primary caregiver and I can't expect Adam to fit into *my* systems (rude. 😝) 

It's been a bit of a clunky transition; adjusting our roles after 8 years of parenting is...interesting 🤭 If anyone has any tips for getting our kids to ask Adam (who's in the kitchen already) to get them a snack instead coming of me (who's laying in bed resting), let me know 😂😂 As we try out new parenting ideas and ways of being with our children, we are also trying to navigate big hurdles with my declining health that impact all of our mental health. It's... a lot 😮‍💨 

Over that weekend and into next week (Jan 13), things got quite chaotic. I was experiencing more brain-based symptoms - mental fatigue, confusion and forgetfulness, emotional instability - all of which while trying to stop myself from my gut reactions as a parent because 1. Adam is needing to respond to our children more so he can continue figuring it out with them; they all need that experience, and 2. I'm reacting and not responding. My anxiety has been high and I wasn't consistently being the parent I wante  to be.

Over those next few days, a few more alarming physical symptoms popped up randomly here and there. I was having kind of mush-mouth and slurring for a few days; it felt like my tongue was getting in the way of my teeth, but it wasn't didn't feel swollen or painful. By Saturday morning, it felt even more strange to talk, so I went to the mirror and stuck out my tongue ..not sure why I hadn't thought to do this earlier in the week.. and it was CROOKED 😳😬 Like, a complete curve! I wasn't having any other alarming symptoms beyond that (at least per Adam's googling about curved tongues 🤦‍♀️😂), however, because of the suspected brain-based symptoms from earlier in the week, along with the fact that my tongue didn't go back to normal within a few hours, we called hospice triage after lunch. They sent someone out... 5 hours later 🫠🙃

In the end (See! I'm reflecting and making meaning! No getting lost in the plot here 😝), I'm actually glad I got pushed around down the line because the nurse who ultimately took my case was an angel 🥰.  Krista spent a full hour with me, it felt like an episode of the old doctor show "House" lol just running through a million different questions and possibilities. After that, she called the on-call doctor, who just so happened to be mine! Another blessing, because as she reviewed all of things we discussed in her hour with me, he pulled out all the notes and symptoms of the last few weeks (remember, my team meets every single week to discuss every single case 👏). At that point, she took him off speaker phone... 😟 which uuuusually is not a good sign. After they hung up, she grabbed my hand... again 😟 not a good sign, so the tears just started flowing. She said that my doctor's belief is that the cancer is far more advanced than we initially thought - he believes it to be throughout my entire central nervous system 🧠 😐

My original hospice care plan (and I don't just mean a plan I made up in my head and am being rigid about... for those of you who know me too well 🤨😅 but it's an actual part of my health care directive and, dang, those things are very specific! Like, down to how I want to be bathed, if I want my hair or nails trimmed, etc 😳) has always been for me to stay at home up until I'm going to be "out of it" the majority of the time. I do not want to get the point of my family taking physical care of me. Then, I would transfer to a residential Hospice House to live my remaining days. Well, the plan doesn't necessarily account for the weird limbo period in which I'm declining but not bed bound enough to qualify for a room. So we are once again, winging it 🤠

As I have gotten closer to that move, my social worker and I are planning with a little more detail now. My plan for moving into a  Hospice House includes being place under Palliative Sedation while Voluntary Stopping Eating & Drinking (VSED). Because I'll be under sedation, I won't feel hunger or thirst, and this aids in my organs shutting down more rapidly than they otherwise would. I don't want to drag out my remaining days any longer than necessary, once I reach that step. I've researched and gathered a significant amounftt of information about Palliative Sedation and VSED, and feelings confident (and heartbroken) in adding this to my Health Care Directive.

Knowing this was my plan led to my doctor basically saying - we need to look at getting me a bed in the next two weeks or so 😧 which was much sooner than we were thinking, before this week happened. This really goes to show how it's all of this is constantly fluid; a new metastasis can pop up and grow anywhere, especially with a cancer as aggressive as mine, and being completely untreated 😖 The freedom I felt when I first entered hospice care and ceased my ties to the cancer center has long since passed. This no longer feels like freedom. I am at the mercy of microscopic cells that are slowly killing me and we literally have no idea what each day will bring, what each moment will bring.  We are in completely uncharted waters, with some random strangers giving us advice based on their experience, but all that is, is their experience! Each experience is very different, because we are humans, not robots 🤖 So, while we have a half-drawn map of the uncharted waters, it's in a different language and we have to try and interpret it. We are really FIFO.

🤓📚 For those of you who are nerds like me; I asked how they "rate" the decompensation and make judgements about how much time one has.The hospice team uses a rating scale called the Palliative Performance Scale (PPS). PERFORMANCE?! Sign me up! I'll get top scores! ⭐️ Okay for real, you can Google it and see what I'm talking about. Obviously we can't quantify the human experience because, again, we are humans and not robots, but we can use this as a tool, along with my vitals, observation by my care team, medications, etc. to make judgement calls with some accuracy. I like seeing tools like this, as it helps me understand the context behind which peopl  make calls about ✨️ my life ✨️. My nurse thought this was really cool of me to ask (😎 thank you, Danielle) and said she had never thought of sharing this with her patients & their families before. Yay for being able to advocate for client rights and quality care! 🙌 Okay so right now she has me about 50%. She said a patient must be at or below 30% to qualify for a bed in a Hospice House. Okay back to the shitty part ⤵️

So the Triage Nurse, Krista, left Saturday evening and then my Hospice nurse and with my social worker, came to visit me Monday to follow up. I was tearful, anxious, and confused about how I could go from completely independent in caring for myself to being bed bound and largely unconscious within the span of two weeks?! 😔 How do I wrap my mind around that? My nurse eased some of my anxiety in reminding me that my doctor has never actually MET me... 🥲 His opinion is based solely on my PPS Scores, the triage call, and his experience with patients mostly ages 70+. My nurse said straight up that I'm the youngest patient she's ever had. So once again - guessing game. She said two weeks would be on the sooner end, but it could certainly be a few more beyond that. The wrench in all of this is the possible spread throughout my nervous system because brain-based symptoms can become crises quickly. 

That same night, just a few hours after my nurse left, I was having a movie night with Geno (no school- yay!). My tongue hadn't really changed, but I had a sudden onset of tingling and numbness on the whole left side of my face and head. When I looked in the mirror, one side of my face appeared droopy. At the exact same time as I went to show Adam, he was walking Callie back inside from dance 🫠 Things quickly turned into a panic attack for me; Adam thought my face was droopy but by the time he could get Callie in and up to her room, I was in a full blown panic attack. I don't remember much of the next few hours other than thinking I was having a stroke and was going to die in front of my kids. Adam called Triage and my parents. Ultimately, Adam administered some PRNs to help me regulate my emotions and come back down. I was extremely tired and physically sore after this, but overall stable. Triage nurse basically said, get some sleep and call back if something comes up again (remember, triage isn't going to treat anything. As long as I am pain-free, that's all the farther they go.) My parents came and scooped up our kids for a couple hours and later that night, Callie wanted to talk to me about what happened. Again, I was so grateful for my career to equip me to help them process what they experienced. She felt better (Geno didn't want to see me quite yet.. we connected the next day 🫶) and we all crashed some time around 10-11pm 😴

My nurse came back again Tuesday. We decided she would start coming twice a week, and Adam and I will begin having some visitors come by for an hour or two during the day to check in and see if I need anything on the other days when I don't have a Hospice visitor.

We will also begin planning more seriously for my bed in the Hospice House. Just because it might not be exactly two weeks out, I am still steadily on my way there. Adam and I toured at J.A. Wedum last week and really liked the facility and the staff. It felt cozy and inviting - lots of family rooms to gather in, spacious individual bedrooms with a deck, prepared meals and space to bring in food as well 🩷 There is a significant financial cost to this home; we qualified for a grant to reduce the daily fee, however it's only for 15 days - and because I am young and have plenty of meat on my bones 🙃🥲 it is possible that my body would take longer than 15 days to transition, even doing VSED. While my family assures me they will make the financial piece work no matter what, I can't help but place that big burden on myself when weighing my options. 

My sister and I are going to tour at Our Lady of Peace tomorrow, which I have heard equally wonderful things about. It is run by the Catholic Church - really not my favorite segue into going for a tour, but my social worker assured me that patients do not have to be practicing any particular faith or participate in anything to do with Catholicism while living there 🩷

Becaus  of all this, yet another impossible conversation with our kids became necessary. Up until now, we have only discussed me dying from a general standpoint. They are going to need some more details now, to help them through. There is immense horror in having to tell our kids that I am getting closer to death...

And full on raw emotion explaining that I will be moving out of our family home. The one we just started making memories in. The one where we started fun and exciting projects that I can't see through to the end. The one where they will continue to grow and play and fill their cups with game nights and laughter...

"When mommy's body gets sicker, I will have to be asleep all of the time. I will need nurses to help take care of my body and give me medicine through my port to help my body feel relaxed and calm. So mommy had two choices: 1. We can hire a nurse to come here and take care of me, and this means I would get sicker and die here in this house. [Enter: looks of shock as if I've grown 3 heads - it's a good thing I had the same reaction and have already made my decision 😅] or, 2. I could move to a special hospital that's smaller and quieter like a house. It has apartments and a play room with some books, and a couple of rooms to hang out in. This is called a Hospice House and that's where mommy will move to in a few weeks."

And then preparing them for that time with just a little more generalized information about what lies ahead, again until we get closer and they need more details again.

Because we have not selected a Hospice House yet, that's where the conversation ended. The next step will be to get more specific based on where I'll move to and what the transition into the Home will look like. We will then explain about going into a deep sleep until my body cannot live any longer and I will die..

We knew all of this was coming so it's not a surprise that it's here; that certainly doesn't make it hurt any less 😢 I fucking hate this for all of us. It's so unfair. I'm not saying goodbye yet because there are also people who live beyond their suspected timeline. But I'm going to remain realistic at the same time as I hold space for hope. 🩷⚖️🧠

We have also had some really amazing experiences and core memory making amidst the chaos which was a big part of the emotional whiplash 😅 but I am so glad we had them!!

Callie and I have been working on her very first Inquiry/STEAM Fair project for school. She independently picked her topic, came up with the the specific questions she wanted to answer, and designed her board with great creativity. She named her project "How Good Cells Go Bad" dun dun duuuuuuun! 🙃 Her reasoning for choosing this topic brought tears to my eyes - she said this is the right topic for her because she's going to be a cancer researcher one day to help find a cure 🥹🥰 

While we worked on finishing up her project, Geno and Adam have been hard at work on the next/simultaneous house project: Geno's bedroom! The upstairs level of our house has the primary bedroom (Queen Callie's room 👸😅) and two veeery small bedrooms. We knew coming in to this house that we'd eventually combine both the small rooms to give Geno a similar layout as Callie's, along with creating a large storage closet. But the kitchen isn't done, right?! Right 🫠🙃 Adam is working on both to the point of electricity, so we can get electric done in both projects at the same time before Adam installs drywall and keeps moving along 🙌. These three projects - Geno's room, the kitchen area, and the build out of the new primary bedroom downstairs - were budgeted for with our profit from the sale of our Wyoming house. It helps immensely that Adam is, and is surrounded by other, blue collar workers 👏🫶 Shout out to all of those who are helping us out! But in the end, he really only gets maybe 2-4 days out of the month to work because we have a feeeew 🤏 other things going on! 😅

Geno had his very first play date ever and did so well! We did a double date with Callie and her dance buddy and had such a fun morning at InnerActive! This same week, we were absolutely blessed from non-profit organization, One Day to Remember, where they plan a totally fun kid-centered "yes day" for kiddos who have a parent with terminal illness. We had a day packed full of Mall of America things and hands down one of the most fun days we've had in a long while.

So all in all, it's been a rough go the last couple of weeks, but Adam and I are determined to enact changes necessary give more grace & compassion to ourselves, one another, and our children because there's no right or wrong way to cope with this shit. We are figuring it out as we go, with the help of some folks who can coregulate with US, so that we can trickle that regulation and support down to our children 💚 

As for help - meal delivery and/or meal gift cards, as always, very helpful. Please text Adam or I to check before adding anything else besides the fresh meal so we can check the status of our freezer and cupboards space first 😂😂 Financial donations are also always helpful to support our family as we are officially down to one income and I have not yet gotten confirmation about SSDI payments yet 🙄 

Also, in the near-ish future, we will need a few volunteers to come hang out at the house for an hour or two during the day to check in on me, help with prepping lunch, etc. If you're someone who works from home and will not want to make small talk with me (sorry not sorry 😬 being blunt - I'm not in a place where I want to socialize and chitchat, and it's my nature to entertain so I have to force myself not to 🫠😅  I will likely be in my bed sleeping or reading and just need occasional check-ins 🫶), aaand you must be cool with our dogs, then send me a message and I'll add you to our list of people to contact when we are ready to establish that schedule. We have WiFi, Comcast, and good snacks so that's your compensation 😝

Holy wow, that was a lot of words. If you made it this far, give yourself a pat on the back 😂 I really hope my next update is shorter; my hope is that I can consider a med change next week that can bide me another couple of weeks without extensive pain. Cancer doesn't give a sh!t about my plans though, so we'll take it one breath at a time 😣

Thank you all for everything - every card, gift, meal, message of support - I appreciate every single one of you who reaches out in ang way 🩷

With love & gratitude, 

Elizabeth