September 14th marks 11 months where I’ve experienced the known symptoms of LCH.
On my birthday, October 14th, it will be a year. Which is six months more than predicted by the first doctor, and one year shy of the average death rate for someone with my diagnosis (according to the social security administration).
If God issued people with printed expiration dates, how would you choose your friends? Would IVF or embryo selection look different?
Sure, everyone would assume the unknown factors. Cars, falls, ect. While knowing anyone could go at anytime- they would still still get fat, drink beer, smoke cigars, and ride motorcycles. Which means that even when knowing the consequence- we all willingly walk into some form of fire 🔥.
As much as the dates, blood counts, hotel stays, flight costs, and minutes with my kids matter- I’ve realized there’s little value in any of it. Obviously, I cherish every memory- but I leave every room with zero regrets.
In the most simple form- I have my shit together.
Summarized, I’ve….
had 30 days of chemo over 6 months
had 11 days of radiation on my skull
taken 48 days of high dose steroids
Been to 11 specialist
Traveled to NYC 4 times
Managed countless days of pain 🔥🔥
And had more PET, CT, MRI, MRA, Bone Scans, and X-rays, than I care to count.
So what’s the point of the update?
In the same amount of time and chaos, I’ve also….
managed to see family and friends get married
have a few small vacations with my kids
watched coworkers leave their jobs or change roles
watched my son graduate
thrown a few parties
had a few drinks and nights of relaxation
spent time with my closest friends
watched my Kinley start the 5th grade
attended 12 school events for my kids
kept working through my 10th year as a School Psychologist
maintained private practice patient care
and enjoyed every moment with my kids and pets.
Some of the measured items mean something to someone and others are pointless to most - but ultimately every twat philosopher feels partially true and simultaneously too hyper-focused on only one thought.
For my soul- I believe a little bit of most….
-Like the Roman’s were right- this is all temporary,
-the secret is true- you must innately believe that everything will be okay/stay resilient,
-faith in God or a purpose for doing the kind or right thing is valuable,
-and it ultimately doesn’t matter why you do any of it as long as you don’t harm others who are also seemingly aimless in walking their path.
It may strike others the wrong way- but those God Given moments of hope are no longer as fast streaming as they were when this journey started.
Things have slowed down.
Then- when I have moments of fear, the affirmations pick up the pace. I know I’m not in this alone and I am happy.
-No matter when I leave physically- I know I will never leave my kids or stop protecting their paths and that feels okay for now.
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