Gosh.. so much has happened in the last month - this is a long one 🫠

The spot on my left shoulder that just felt strained and sore before is now a palpable mass that's visible to the naked eye. It's become increasingly painful in the last week or so. I am losing sleep, feeling irritable, and it's overall a huge burden on my quality of life. 

In the midst of this chronic pain, my hair starting growing back. At first, I was very excited. My Onc said a 50/50 chance because one chemo causes hair loss and the other does not, so they see mixed results. I ordered biotin shampoo immediately and was counting down the days to order mascara 😍 But, last week, my menstrual cycle returned. Chemo has always kept me in medical menopause. These two things alone wouldn't necessarily be concerning, but the physical signs, in combination with the growth in my shoulder and the pain level, led us to be concerned about the efficacy of this treatment for me. 

My Oncologist bumped up my scan three weeks early so we can get a look inside. First, they missed my actual shoulder mass on the scans 😡 don't even get me started on that 🥲 Human error and all but.... ugh. In reality, I don't need a scan to tell me that's cancer. I know by now what these horcruxes feel like.

The scan did show several other issues:

1. New spot on the kidney (so now there's two tumors in one and one tumor in the other)
2. Pancreatic tumor grew
3. Pectoral muscle tumor grew
4. Lung was too clouded with early stage pneumonitis to see the tumor well - thankfully no other symptoms of that right now so no steroids!

All in all, it's clear that GemCarbo + Keytruda isn't working for me. I only did four total infusions (6 weeks time) and all of this growth happened. Big yikes.

So.... new plan, in as short a version as I can make it:

1. Tomorrow, instead of my scheduled infusion, I'll see my Onc in person to discuss all this again because it's... a lot. He's ordering a biopsy - We want a peek at the shoulder mass because, why is it growing so fast?! 

3. Some fancy gene sequencing and other testing I cannot pronounce will happen on the new shoulder biopsy & my original lung biopsy (they kept my tumor tissue for 9 months?! Yuck 🤣🤢) to see if there's aaaaaanything else possible we can target with treatment. 

4. In the mean time, I'll go *back* to Rad Onc (seriously, can I get a punch card at this point? 5 visits, earn a free CT scan?!). Rad Onc does their own imaging so she will capture the shoulder mass from that standpoint and then we will 🔥 that horcrux to help alleviate the pain so I can try to get back to at least basic functioning. 

5. Today, he and his nurse will be working on a referral to Mayo Clinic. Oof 😮‍💨 They don't want to wait until all the testing is back to do the referral because time is really of the essence now. And if there's a Clinical Trial we know will fit me based on the info we already have, I'll need to join it. If there isn't, we wait for the testing to come back and hope thay opens the doors to something else.... 💔

This is really hard news. Again, it's not necessarily surprising. But hard, nonetheless. I'm feeling overwhelmed and uncertain. My nervous system likes feeling safe (hello... I'm married to an enneagram 6... if you know, you know 😅). And right now, the unknowns about everything - this cancer, the treatment, my family, our future - feels really unsafe. The idea of not creating safety for my children is the most unbearable reality to ever exist. If you see us out and about, please extend extra compassion to my kids 🙏🏼 because this is so unfair to them, and we are all struggling right now.

And amidst the big feelings and heavy stuff, the world keeps spinning! We finished up project #1 in the house - the main level bathroom. We went to the State Fair and had an amazing day. Both kids started the school year at their new school and have been loving it! Callie started on the Twinkling Stars and Geno started hockey clinic through the Little Wild Program! I reduced my hours to part time at work and significantly reduced my roles & responsibilities. It's been a really hard and sad adjustment... still adjusting... but a necessary change. There is absolutely no way I could show up for others in the way they need with all of this on my mind and heart. I turned 34 and we celebrated with dinner out and our last boat days of the season.

We've turned on the financial donation option on this new website, as we anticipate me working less than we planned and with the possibility I will be traveling to and from Mayo. Additionally, because I had to reduce my hours to part-time, I lost my state-funded student loan forgiveness, which is a huge cost we also didn't anticipate. Please know we do not ever expect financial donations from anyone - all of us are trying to survive in this economy - and any funds donated here will go directly to our kids for things like school clothes, extracurriculars, future events and funtivities for them, etc. At some point, Adam will be raising two kids on his solo income and that's the harsh reality we have to plan for.

Thank you all for showing up for us time and time again 💚

Love & Gratitude ✨️
Elizabeth