THE BAD NEWS FIRST
Wednesday 4/9/2025 - It's only been 3 weeks - since starting down this path.
It's pretty serious/bad. I have Stage IV Non Small Cell Adenocarcinoma Lung Cancer that has metastasized all throughout my lungs, lymph nodes and brain - shoulder blade - a few other spots....etc. One highlight - my cells do have the EGFR genetic mutation - meaning immunotherapy is also an option.
I met Dr. Mullvain - my oncologist. She seems so perfectly wonderful. I think I'm really going to like her. Everyone else is supportive and wonderful too - and I've been assigned a palliative care team too - it's more for comfort during treatment than like you might think for hospice (I'm not there yet)
This is the only research that means anything right now. - all in this one chart - from the New England Journal of Medicine.
To summarize, because of all of the metastatic disease in addition to the primary lung disease and the EGFR component - treatment with immunotherapy (pills) and chemotherapy together can be effective for about 24.9 months on average - before its efficacy stops and you need to pivot to hopefully new research/drugs or whatever is coming down the pipes. But I'm an extremely healthy person - and I've always been above average when it comes to health - so I got that going for me. (Still hoping for the best)
On the other hand...LUCKY FUCKING ME!!!! THOSE MOTHER FUCKING SELFISH BASTARDS IN THE WHITEHOUSE JUST CUT FEDERAL CANCER RESEARCH FUNDING - AND UNIVERSITY SCIENTIFIC RESEARCH!!! ARE YOU KIDDING ME - ASS HOLES!!!!! Seriously - you can't make the timing of this shit up! Probably right when I'd be needing to pivot - the research results won't be there. THIS IS SUCH BULL SHIT! - I AM SOOOOOOO ANGRY - and reserve the right to CUSS! GEEZ!
We'll see how that goes. I sometimes just can't even let my brain go there. So, after a few more tests in upcoming weeks I will start the drugs and the chemo. And apparently they said that the particular chemo I'll be on doesn't make you lose your hair - so hopefully I'll still be a curly girl. (the least of my worries) But all the other fun side effects are the same.... I'm exhausted just thinking about it.
THE BEST GIFT EVER!
So we stopped at the Willy Street Co-op on the way home to pick up a few items for tomorrow's dinner (Including black garlic - I'm gonna try it this weekend, Dad) and I am exhausted. I had finally laid down on the couch, when a delivery driver drops a package off on the front porch.
I get up - It's addressed to me. I open and...…
My little sister, Erika sent me a Zelodec!!!!!! Yes, yes she did! It is literally the best gift like EVER! It's that garlic and smoke infused Slovenian meat/sausage. I'm so so happy I could cry. I told her I wanted to curl up with it on the couch - and swaddle it like a baby - I can't wait to eat that. - Though I do have another coming from Port Washington, WI next week. Which is just more Zelodec for me. Maybe I'll cook it now - I don't know how things will taste during chemo???? who knows - and it would kill me to waste it by throwing it up. And Lilah, our dog - she's trying so so hard here to be good - but it's stinky - and oh so yummy and tastes like my childhood. Such a highlight!
ROUNDING OUT THE NIGHT AT LOLA'S
I fell fast asleep on the couch - too emotional and hard of a day. And luckily I woke up just in time to realize that we'd almost missed going to Lola's HI/LO Dining Room & Cocktail Lounge. For those of you that don't know, it's on Sherman Ave. here in Madison. - it's one of my favorite places. I'd been scrolling through Instagram and saw that they were going to have a Wednesday night listening party of Fleetwood Mac's Rumours album. What a perfect night for that - Plus its a super SWANKY and retro place to go.
Rumours is an old favorite album for both myself and Paul - but here, after 35 years of knowing Paul- I'm still learning new things about him. At the age of 12, in 1977, it was the very first music album he ever bought. It was $5 at Uncle Bill's Discount Chain in Cleveland, OHIO. He talked about how he used to play it on his Dad's old Grundig Hi Fi - which we still have and Paul's been restoring. The music played and I just loved every minute. (As an aside - I have been dreaming of this yarn colorway that's an orangey yellow called "Fleetwood Mac - n - Cheese" - whadda ya think about that? dibs no stealing)
And the food and cocktails were great too. The Pisco Inferno is an excellent cocktail. - one of my favorites. - and I might as well - because it's not like I have Liver Cancer (sorry for the dark humor - it's a coping mechanism)
And I slept for a few hours - but I keep waking up and here I am again....Just finishing up at 4 am. Time to go back to bed.
Thanks for listening. Do something nice for someone else,
Love ya,
-L
4 comments
I really don’t know you other than to say hi but your story really struck me. Shit sandwich is right. Your head seems to be in the right place and that helps. When I had chemo, I found bland but salty helped—I ate lots of baked potatoes topped with cottage cheese, chicken, and salt. I’m sending you positive vibes. I’ll be protesting the current administration to try to get things straightened out.
Sending positive & healing thoughts your way. The fact that you have always been relatively healthy & your sense of humor will be a great help during this difficult time. Just missed you at Lola’s Wed! Had dinner but left before the music event. Enjoyed a few Al Green cocktails.
I agree, that sounds like a “perfect shit-sandwich day” 😏 Lola’s looks amazing, I’ll have to check it out sometime! Thanks for writing these blog posts. I think about you every day, and I’m glad you are keeping us in the loop (so I don’t have to pester you!).
Aaargh! Fortunately, you are NOT average… you are 2 to 3 standard deviations off the mean. So, screw that number.
I want to come in and take you to Lolos, drink cocktails (I never drink) and wear your sausage on my head. Let me know if that sounds inviting.