Getting here has been.... a ROAD.
I'm technically on my second treatment of radiation. A series of six low dose treatments to my skull presentation of LCH.
There is a LOT to add and a ton to fill in through this blog but the journey has been exhausting.
As a reminder to myself on what I need to revisit- let me make a list....
getting accused of self-medicating with prescription steroids 🥴🤮
Having doctors begin mapping for radiation then cancel because I may have lymph node involvement 🤦🏼♀️
Having UofM refuse to use tests done the same week due to needing their own images ❌
UofM doctors disagreeing with each other then canceling radiation ❌
UofM asking me to sign off on them being my primary point of care and research of my LCH, then offering me no treatment options ❌
I found a specialist with adult LCH experience at Cleveland Clinic 👍🏻
Cleveland Clinic hematologist/oncologist dismissing my system level symptoms as due to steroids (that I had only been on 3 days) ❌
Cleveland clinic hematologist/oncologist leaving for a month due to a conference and vacation and forgetting to order my genetic sequencing for treatment ❌
Me having to seek doctor referrals from the national Histiocytosis foundation due to a lack of options 🤞🏼
Boston agreeing to see me (Dana Farber)👍🏻
Sloan Kettering agreeing to see me (NYC)👍🏻
The steroids making me sick gained 60lbs, lymphedema in both legs, moon face, heart rate, and bone pain.❌
Radiation gets agreed to by Cleveland Clinic Tumor Board and scheduled then rescheduled due to getting an emergency visit to Manhattan for Sloan Kettering👍🏻
I get radiation mapping finished with Cleveland Clinic and the face mask made 👏🏼
The radiation oncologist agrees to my treatment in Sandusky Ohio (making it drivable) for six days 👍🏻
I get to Sloan Kettering the day they come back from Christmas break 12/26/2023
Dr. Diamond begins my genetic sequencing study, notes my lymphodema, finds a bakers cyst behind my knee, and recommends me having a UofM specialist "near home" to manage my care with him---❌
I get home and spend another day in flower hospital due to swelling on the plane.❌
The ER determines that my swelling is due to LCH and wants me to follow up with my primary. 🤷🏼♀️
I realize that every day when I take the steroids, my symptoms increase and I taper over the next 3 days/weekend.👍🏻 once the steroids are out of my system and taper the swelling goes down.
Between my face mask build and treatment starting, I develop a larger moon face making the first treatment on 1/3/2024 painful and it causes a migraine then a slew of vomiting 🤮
This all leads to today-
Main doctor is Dr. Eli Diamond (Sloan Kettering) who is doing my genetic testing and monitoring treatment
My radiation oncologist is at Cleveland clinic but that will likely end after treatment 1/10/2024
My local hematologist is Dr. Saste at flower hospital- after me calling Dr.Diamond to discuss my recent experience with UofM, he agreed to work with my Toledo docs.
My primary care doctor is Dr. Machanda (UTMCO)
All of the aforementioned drama leading to today- A low dose radiation treatment where I just lay there and get a little bit nuc'd. But what I didn't expect- uncontrollable bowels and vomiting- especially because they said I'd probably feel nothing.
All I can hope is that it's working and I'm killing the bad stuff, preserving the good stuff, and I'll be getting stronger.💕
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