I’ve finally reached a monumental medication dosage right of passage. I’m down to two a two steroid dose per whatever hours (I’m not supposed to be responsible enough to know all the timing details.” All I know is that the horrid, yet helpful steroids are phasing out and will soon be purged from our daily dosing routine. God bless the little things.
The beauty in experiencing a second craniotomy is a double edged shard of glass. There is comfort in having been there, reliving similar experiences and the absence of the shock and awe that comes when you’ve already been there the first time. Hard to explain how one can process any of this as “normal” or familiar, but somehow trauma has a way of settling into a place in your mind where the experience isn’t as wildly unnerving as it is comforting.
I am tired. I am supposed to be tired. I feel like an ax has been hurled at my head and while the pain medications and Valium dull and minimize, it is a constant battle to find comfort. Sleep comes and goes, but I have yet to wake actually feeling rested since it is an all night struggle to find a comfortable position that doesn’t find laying on my right side and awoken by a deeply pounding headache.
The massive bruising at my multiple My IV sites (arms/wrists) are slowly fading and I am confident (hopeful) that airport security at Laguardia will not tag me as a drug mule Monday evening. The worst of them (healing IV sites), in terms of soreness are the two that were in my ankle and foot… but I am not complaining – just grateful that I wasn’t conscious to be aware when they were inserted – they looked like what nightmares of made from.
Karen and I spent the morning on the front porch together… talking, laughing, drinking coffee and soaking in the gorgeous fall breeze. I’ve got two college sorority sisters stopping by soon with lunch (Siobhan Crann Winograd and Jeannine Langbein Fitzmaurice) and I am so grateful for the visit and the opportunity to reconnect, even under what is less than ideal circumstances.
Heading to Lilliana’s soccer game tonight and looking forward to being the crazy “aunt” cheering her on. I miss my kiddos and Paul so, so much. I am thrilled that Tucker had the opportunity to travel yesterday with his HS cross country team for a meet in Florida this weekend and side adventures with his team. He deserves the time away with his friends and to develop and soak in experiences that are entirely disconnected from his mothers recovery or diagnosis.
We are grateful beyond measure for the meal train that has been coordinated and the meals provided for our family thus far. Thank you. Your generosity and love for our family is something we will forever have a difficult time to quantify and express appreciation for. However the impact will remain in our hearts and souls in perpetuity.
I cannot wait to return home on Monday night and fall into to the arms of my children and Paul and snuggle with my three, four legged furry children. I look forward to welcoming friends over to Netflix and chill, share meals, laugh and eventually, take some adventures with.
We will have more information on treatment schedules once pathology is done and we have the opportunity to talk it out and execute plans. Too much to speculate but jut throwing out there that we appreciate in advance any and all help we will need on this road as it continues to be paved for us. .
Carpe Diem the shit out of your day today people… smile and be the someone nobody knew they were looking for.
My girls all just got back from school… we’ve done high fives to celebrate Friday, snacks are being eaten and there is a collective exhale for an evening of no homework while we play music off my phone and hang on the the front porch.
God bless you and for sharing your journey