I haven’t updated many since my terrible turn of events late last week so I apologize for that. I needed the weekend to grieve a little bit. I went into last Wednesday feeling so strong in the plan: biopsy, clinical trial, calendar is nice and organized, radiation almost done, feeling nice and organized, oh yeah.
So last Wednesday (6/8/16) night all of those emotions were squashed sending me into a confused state of questioning and discouragement. A cancelled routine biopsy, off the clinical trial, low platelet counts, blood clots like I’m 90, pain everywhere,
My platelet counts (radiation on hold under 50k because it’s not safe/Normal is 150k-500k):
Wednesday (6/8): 48k
Thursday (6/9): 48k still, running fevers. Not sure if I contracted pneumonia (had deep cough).
Friday (6/10): 46k. No fevers (prayers answered). IVC filter procedure went well compared to first liver biopsy experience at Mercy where I felt everything and then was left in a room alone in pain with nor nurse in sight for 40 minutes.
OU Doctor was great (kinda McDreamy which Adam agreed so I can say!) until he told me he was going into my vein through my JUGULAR and not my hip like the nurse told me (less risk for infection). Prayer and the loopy you’re out fast and won’t remember meds helped. Neck pain wasn’t too bad and I was able to unwrap it on Sunday. Was discharged from hospital Friday evening so was able to rest at home but struggled with headaches.
Monday (6/13): 43k and white blood cell count dropped for the first time. Bad day. Headaches were terrible all weekend from brain masses because I was told to stop the steroid (anti inflammatory) medicine but was given permission to get back on and taper off again later when full effects from brain radiation set in.
Tuesday (6/14)! 56k and headaches gone.
Woooooo. They let me do radiation (3 more sessions left) and seeing my tech team lifted my spirits. They rallied together more donations for our medical bill fund- who does that?! So much kindness.
The biggest news other than my platelets is that my Tarceva targeted therapy “chemo pill” came in! It gets shipped once a month to me and since I was dropped from the clinical trial who was going to cover the cost of these $100/piece pills I was nervous to ask how much was covered under our insurance since it’s not like there are off brands of this cancer fighting therapy! All 30 pills cost us less than $20 a month, praise Jesus and great insurance! I take this beautiful life saver (lol) once a day on an empty tummy and let it do its thing! It even breaks through the blood brain barrier that regular chemo can’t penetrate!
(On the trial I wasn’t able to start this until 17th so praise Jesus I was meant to be off of that and start sooner, even just a few days!)
Lastly for this great day, I met a really sweet 3 year old, Haylie, at the Stephenson Cancer Center who was visiting just for one day of testing and new bone marrow/treatment set up from Tulsa where she goes to St. Francis Hospital for her care. She has Leukemia, diagnosed at a year and a half old. Her parents are actually from a town where my best friend’s husband and family are from so of course they knew eachother and small town Oklahoma stories always make me smile.
Haylie has been through a lot but was so brave and we were able to spend time together talking about our matching pink nails and similar hair cuts. I hope to see you again sweet girl and I’ll be praying over you daily.
Going back in at 8am for blood work check and radiation of above 50k!