Back so soon? Yes, yes I am, because it's becoming apparent that a lot can change in a short amount of time and that last post was excessive 🤣🤣

In the days following my last update, my pain levels spiked yet again. I waited it out a couple of days after the MOA, hoping that it was just residual soreness and it would go away with rest. I rested all weekend to no avail. My nurse was scheduled to begin 2x/week visits with me this week, which I was looking forward to because I had officially decided on a Hospice House and was ready to switch over to the new primary pain medication she'd been hinting at.

The new plan will be utilizing Methadone as my primary pain medication (right now, it is Morphine). And, cue the stigma! I absolutely had a stigma-driven reaction to it when my nurse initially brought it up about 6 weeks ago. I immediately said, 🙅‍♀️ nope, not interested... and that was that. My own trauma of watching loved ones around me die from addiction decided for me before my brain could catch up, just like it had when they first discussed Oxy (for break through pain). And, ultimately, that ended up going well for me.

But then, as per usual, I started silently researching because I needed to know more information and circle back with her in a more regulated way. Thankfully, she also didn't continue to press the issue - recognizing my trauma reaction and knowing I wasn't ready to hear more about it, yet. Until, she brought it up again 2 or 3 weeks ago. This time, I had done some research, asked around in my Stage 4 and Hospice Care groups on Facebook, and I was ready to talk more about starting it. The research I've done and stories I've heard from fellow Hospice patients and their care teams, it seems like a great alternative to Morphine. There are far fewer side effects with Methadone and, once I'm officially off the Morphine, we will discuss weaning off the Gabapentin, as Methadone resolves neuropathic pain, as well. I am all for less meds! 

Unfortunately both my nurse and my physician were out sick on Monday 🫠 so I had an alternate nurse swing by for my appointment. We discussed the Methadone on a deeper level and she explained what the transition would look like. While everything sounded good, I didn't feel comfortable starting until at least one of the two on my medical were back... there's been too many weird fluke symptoms and side effects for me, so I want someone who knows me well.

Today (Wednesday) is my first official day of Methadone. Right now, I'm simply adding it to my existing meds. Over the next few days, the Methadone dose will remain the same, but my Morphine dose will decrease. I will have nurse calls,  and a visit if necessary, to check in every day. Then, my nurse, Danielle, will (hopefully) be back Friday and come to see me for our scheduled appointment. From there, I'm unsure of what will happen - my medical team will discuss it as we go.

The hope is this will give me a few more weeks at home... a little less intimidating than the "two weeks" they said during my triage visit.... 🤨. When the time comes and I get to that 30% range on the PPS scale I shared in my last post, I will be transported to the Hospice House.

Between now and then, I will become less mobile and less able to care for myself. In addition to my nurse/social worker visits, we have a team of close family and friends who will come to the house to check in, help with anything, hang out if I'm napping, and just be there for support. If you offered your support and I didn't get back to you- please know how much I appreciate your offer! If/when there are days my family cannot cover, I will absolutely reach out! 🙏

I'm having a really hard time accepting this (have you noticed a theme here with my level of acceptance being pushed to the maaaaaax 😮‍💨😅) because I love my independence and am a hostess by nature so feel like I want to make a charcuterie for you when you come over 🫠🤭 and then I have to ask YOU to make ME lunch?! No, no thank you. Ugh... baby steps. I'm starting with my two besties the rest of this week so that won't be too traumatic for me 😂.

While we aren't sure of the exact timeline, my hospice plan is now complete and sent off to the Hospice House along with all my records. I've chosen to go to Our Lady of Peace in St. Paul. It's the oldest Hospice House in Minnesota and is beautiful. When I was walking through the rooms, I could envision myself surrounded by my family in the beautiful, spacious room, and it brought me peace (and heartache). 

Well, not much else to report since its only been less than a week 😅 Callie did her very first "Inquiry Fair" presentation and absolutely rocked it! She chose to research how normal cells turn into cancerous cells and what to do if that happens. We are so proud of all the hard work she put in to this project and she definitely felt proud of herself! 

Okay was that short? I don't know when to stop myself! Hope you made it to the end so I can thank you 🥰⤵️

Thank you for allllll the love and support you've shown up with - we appreciate you all so much! Admist the absolutely dumpster fire that is our nation (and my life) right now, you all help me find gratitude, love, and peace in every single day. 🩷

Love, Elizabeth 

P.S. there is a glitch in the website that limits who I am able to sent thank you messages to. Each time someone volunteers, donates, etc, I get a list of them. Some have the option to "say thanks" right through the website, and some don't, but they are all supposed to. The awesome team at SupportNow are looking into it for me because I don't have a way to thank some of you!!