Some may say it is unreal to have a craniotomy on a Friday morning, spend 36 hours in ICU and 12 hours in a regular room before you beg to be set free. I say, it’s not unreal.. . I just have my limitations, know my boundaries and also know I cannot get away with any antics with Paul, Karen, Andrew and the girls in Glen Rock, NJ. They’re all pretty damn strict chaperones. So, Thank you Costas for trusting me and letting me go!
This was hard, really hard. The pain this time was unbearable, raw, intense beyond any expecations or my prior craniotomy.
The ICU nursing staff was amazing and since Paul was unable to spend evenings with me, I was dependent on their support;talking me through the panic, hyperventilating and intense pain that even the strongest pain medications couldn’t reach. It was lonely, deeply humbling and I felt exceedingly vulnerable trusting in nurses with deeply specialized skills surrounding me with calm voices, warm hands and immeasurable patience until the pain became managable and my body calmed. Sleep did not come often and for anyone whose been in a hospital, it is an exhausting experience.
I came out of the OR with four IV’s. One in each foot, one in my left hand, an arterial line in my right wrist and then a fifth IV they added to my left arm. For the record, the foot IV’s were unelieveably large and I am counting my blessings they were inserted while I was under… considering they were the size of a large hollow drill bit. My arms and feet closely resemble that of an adict from a street corner, but with time, those wounds will heal.
My pain is finally under control and managable. While not gone, it is no longer comsumuming me physically and is tollerable. We once again have a complicated medication schedule to manage and thanks to Karen and her post it notes on each of my pill bottles and a written out schedule, Paul and Karen have my medications timed for delivery by the appropriate minute. Like 10 years ago, I am woken up in the middle of the night for doses of anti-seizure, steroids, pepcid, pain and muscle relaxers. Recovering does take a village and damn I am blessed.
I will have a fast taper off the steroids over the next week to 10 days, however, will need to maintain the Keppra (anti-seizure) for the duration. I assume, if this recovery is like last time, the pain meds and muscle relaxers will serve me well for a few weeks until my skull and temporal muscles decide to mend and heal. Currently, it hurts to chew, open my jaw too far and laying on my right side or even flat on my back is too painful.
Surgically, Costas needed to take a larger portion of my skull off in order to gain better access to the tumor, but… whatever works and I was certainly not in any postiion to debate the preeimant expert!
I was fortunate to be offered the opportunity for the Mt. Sinai media team to video and photograph my surgery… I think we all know how important and valuable you know I feel this documentation is and we look forward to sharing this with you once it is made available. These videos and images will be available for my own personal use and potentially for future media endeavers by the hospital on brain cancer.
We are awaiting the full pathology report which should come in about 10 days. There is a lot to test and a lot of genetic markers to evaluate on the tumor aside from simply determining stage and grade. Genetic markers, deletions and evidence as such will further guide my treatment protocol beyond radiation and oral chemotherapy. There was evidence in the OR from pathology that there were abnormal cells and we are fully prepared that this is a grade 3 tumor. A reality I was fully prepared to face and expect and frankly, none if this is a surprise or feels gutting in any way.
Aside from the medical stuff… I enjoyed an amazing week here in NYC. Time spent with Jared, Stephanie, Andrew and Gavin as well as connecting with childhood friends (Brendan, Nick, Dave) that filled my soul with peace and provided the perfect distraction and escape from the chaos that was to come. We stayed up too late, drank too much, laughed a lot, crafted with the kiddos, ate amazing food and I spent a considerable amount of time by myself exploring the city. It was near perfection if there is such a thing as you await your second craniotomy for a recurrance of brain cancer.
We have been blessed beyond measure by those who came to visit us in the hospital: Giardino’s, Rucci’s, Mulligan’s, Alex Bacon, Cardamone’s, Alison Boeckmann and Costas and Lorraine Hadjipanayis. For the record, we also have – thanks the humerous generosity of the Giardino’s a skull of Vodka (note instagram from Wednesday night) and an assortment of shot glasses. Because, in the end… humor always wins.
Paul returns to Atlanta tomorrow evening (Tuesday 9/18) and I will return to Atlanta with our dear friends Sara Rich and her son Jackson on Monday evening 9/24.
I know there are friends here in the NY/NJ area who have expressed an interest in visiting me here at Karen’s and I know Karen and her family are amenable to that. I simply ask that you coordinate through her directly(201.566.2966).
Thank you all for your prayers, support and love. This is going to be one long ass road ahead and a journey we will face together with the best semblance of grace, humor and reality we can summon. For those back in Alpharetta (friends, teachers, administrators, peers and mentors) who have been taking care of my babies (Tucker, Cooper and Harper) and supporting them in school and giving them the love and support they need but don’t know how to ask for… we are grateful beyond words.
From a really comfortable couch in Glen Rock NJ… I send you my love.