I'm BAAaaaaAACK!
Where do I begin..... or where am I now?
In a couple weeks it will be 3 YEARS!
It's been 19months since I wrote an entry - while paying for the “Beatlchnow.com” domain I’ve been locked out and too exhausted to call the company to hash out the details....
Luckily, I kept the domain and my blogs have not been consumed by AI (YET)....
So here I am -That's right- I made it past the
3mo,
6mo,
1st & 2nd year🙄
It hasn’t been easy. In fact, I had no idea I could be in this much pain for this long. More on that later…
I think I left you during my final round of chemo (for now) and I have been managing my LCH symptoms with a biologic called Anakinra. It’s a 1ml injection that suppresses my symptoms for a few hrs a day. It’s long enough for me to drive and work but then I have flares that have made it hard.
In the beginning (May of 2025) the shot was effective for more of the day and over time (similar to the chemo) my LCH has gotten spicy again. At night, I have a two spots on my ribs and my head, jaw, back, teeth, and bone pain is back. Needless to say, I’m still 🔥 .
The last round of Clofarabine in February of 2025, worked the longest. I went from limping to walking fluidly and having a fairly typical gait. Over the first 6 months it faded slowly to working shorter amounts of my day and sometime this spring (2026) I started to sneak 2 shots in if I need to function for a kids performance or meeting.
This means I have a LOT of needles and I’ve been amping up the art made from my treatment materials. This year, I was able to donate a side table made for the Histiocytosis Association auction in NYC. The Biologics used to make it were worth between 30-50k so I doubt I’ve made them worth the $$$ but I tried….
There has been so many things that happened in the almost 2 years and I can’t use my fingers to text as long as I used to - but I will be better about checking in. This is important for the other Histio warriors who are fighting- and for our friends that we’ve lost.
Hank has past away. An older Histiocytosis patient who inspired me at the national hike last March.
I was able to meet his daughter with my daughter. We spent a few of the event evenings sharing war stories, dinner chat, discussed our vastly different political views, and he urged the rare disease community to create a data base for Histio patients which sounded a lot like a mandated chip. He proposed a desire for us all to be Implanted and tracked to ensure monitoring and research. His heart was kind and soul was fierce. Without him, I definitely would not have tried the hard chemo and we were all lucky to call him a friend.
While I’m much less excited to leap into that version of our future, the treatments continue to expand. Even my daily injections aren’t typically used for this cancer- most people taking it are fighting autoimmune arthritis conditions and inflammation in their joints.
Whatever the reason, it’s working as well as it can. But- my levels are back up.
My endocrinologist thinks my liver is “infiltrated” and it seems to be slightly elevated. Soon, I’ll need to adjust something but I have another PET scheduled for 10/4 which may explain what my body is going through.
On the bright side- I’ve enjoyed 3 more trips to NYC to see Dr 💎 while exploring my second home. Kinley expanded her theater bug to include playing the saxophone and starting a garage band & Logan has completed a short semester in cabinet making and is focusing on his physical health before returning to work.
I’m alive
I’m happy to have more time with my kids.
Overall, I’m grateful. Except when I’m pissed- I’m human- the days are still long and the saga continues ….
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