Weird.

Let’s give my life a title. Just one word to describe or prelude the inevitable. In this case, I don’t need help- it’s just WEIRD.

If it’s not the usual, expected, or typical outcome, expect it with me. Always. Some examples include but are certainly not limited to;

Cancer doesn’t hurt——- not true for me.

Chemo is poison——-it makes me feel amazing!

LCH affects the central region ——-it is all over.

Best hospitals mean the best care——-prepare to work your ass off trying to schedule your chemo, port implant/removal/implant again.

You can beat this——— it doesn’t go away

In November, my family hosted a spaghetti dinner for my travel and medical costs- they are the most supportive group and I am extremely grateful.

Throughout the holiday season, I continued the Mek inhibitors Cotellic and Mektovi-

—-- they caused visual side effects and the doctor ended the treatment due to complications.

The ongoing choice between pain or vomiting is annoying.

Everything hurts 🔥and I’m tired 😒.

For New Years, we took the kids to Frankenmuth. There isn’t a need for me to justify my decision - but some may wonder- if you hurt, how are you traveling? If you can’t work, then how can you swim?

The simple answer is- I’m trying like hell to make memories. As many as possible with my kids.

Early into 2025, Logan took his written test to get his driving permit. It was a huge milestone for him, and I was incredibly proud of how hard he worked to achieve this goal.

meanwhile, I’m off treatment and still dealing with joints that are on 🔥fire and pain 🔥that wakes me up all night long….

After a week in NYC, the update is exhausting-

• the LCH is still affecting everything (joints, bones, liver, ect)

• The Mek inhibitors aren’t working

• The oral chemo isn’t working

  
  

The good news-

• there is another option for a “better” chemo

• My doctor believes we can knock it out with more chemo then maintain with oral/chemo.

• Keith was able to wheel me around the MET, we saw Seth Meyers, one more Broadway show, and 2 ongoing shows at the NYC Comedy Club.

  
  

The hard truth-

• I need to take time off work

• Now I need a new port

• Everything I did to manage the relationship between Promedica, Cleveland Clinic, and Memorial Sloan Kettering- I have to repeat for the University of Michigan

• My body is in pain waiting for something to get rid of this stuff

Despite the overwhelming amount of to-dos- We made it home and now I need to cry….. Then pull it together to watch Kinley perform with the Jr Soirée.

Next….Process this mountain of work ahead of me, and keep shit together for my kids.

There is NO BETTER person to care for them or manage this mess and the only way forward is through the fire. 🔥 Just a reminder for myself, and those who think they’d do it differently 💕