I did kinda check out over the holidays and focus on the kids and the memories. I did the cursory hunting for MRI order. Which entails locating passwords for 3 different sites to try and see if an order is in and the referral. It was not.
Cautious nagging from mom and special friends kept me honest. Especially that special friend who says- I will be there the entire month of February. I know what that means. In addition to my onc, nurses and 2 neurosurgeons- my trusted advisory committee is weighing in on the necessity of this plan and surgery. So I finally emailed my new neurosurgeon's secretary. The MRI order was at Tripler and can we put a date on the books, she asks. Yeah. lets. The MRI had not been referred out. Can't win for losing or predict. So I call and make the appointment for a Brain MRI (Thursday)and we settled on a date for Boobie Tumor Eviction. FEBRUARY 8. Notice is given. a month to prepare.
Now that the date is set- the nagging- I have to schedule it feeling is gone and we'e moved on to the lets get this shit show on the road feeling. The I have to get shit in order feeling is overwhelming. The I am too tired to do anything but basics feeling is overwhelming. So each day- a half an hour to organizing something. The way I want it. I also have 8 whole days to get stuff done with Monica and mom when they are here. Because the last thing you want to deal with when you have a brain tumor is the am I legitimately losing my mind or are people messing and moving things feeling.
After so many years of doing this journey and trying to be independent as possible- we have gotten there. Phil is still not so much on board with the asking for help- so please be gentle. He's gonna need it because I need him.
Here's the general idea- in the hopes of keeping it brief and everyone knowing whatever.
The tumor is in my cerebellum. For non brainiac people- this the the fun spot at the base of the head- near the neck that controls things like balance, coordination, and some muscle control. So for surgeon sorts who deal with major cognitive and sensory issues with patients- a patient stumbling around like a drunken pirate isn't the worst outcome. Now- then there's me- who is a bit of a control freak- doesn't so much like the out of control, dizzy feeling and you kinda feel like this is one of THOSE trying times. SO I have faith.
The surgery will take several hours- I will have a super duper high defintion MRI right before so the surgeon knows what is going on and essentially will have a gps map of the tumor region. I will have to sit through the surgical admission center nonsense which usually takes about 3 more hours than it should whilst you listen to every employee of the area stand in the hall complaining about everything from hunger to long hours. There was the famous previous incident where we took advantage of the wifi and sent ICE(customer satisfaction survey) complaints over an over while we waited. That's a lot of complaints in 3 hours. I am so anxious to see the improvements. Not holding breath- will affect pulse ox and ekg and possibly delay surgery....
The doctor will cut into the back of my head- and due to the muscles back there- recovery will have some good pain involved. I'm planning on taking advantage of meds. The dizziness and balance issues will be a wait to see thing and most have some for a few days to a few weeks. I will probably be in ICU for a night and then spend 3-7 nights in the hospital. I have reinforcements caring for the kids and really want Phil there to help me.
After I get home- between the whole brain surgery thing and massive doses of steroids- I will probably not be a visitable human. I promise to let you know if this ends up being different than expected. I would like to have our home environment be as zen as possible. Ok Ok insert maniacal laughter here. I am working on getting our bedroom cleaned and relaxed and hope to get our lanai updated for a relaxing fresh air space- I have a month right?!?!?. If nothing more- I will get the kids to hose everything down So I don't have to flick the lizard poop off the furniture before I sit.
So what we will need as a family. Please stay tuned. I have a friend who will put together a meal train for us. Many who are going to help with kids' rides to school and activities and give them much needed love during this time. If there is something you would like to do or want to be added to the "call in case of need" list- please message me. We will have my mom and Monica here for the first round, and several others on call- but my brain surgery friends assure me- 6 months is a realistic time frame to adjust to new normal. Notice I don't say get back to normal. I am very hopeful and plan on exceeding expectations- but brain surgery is not for the weak. I've been on the helping side several times. It is a frustrating beast on lots of levels. As always- prayers- juju, positive anything are very much welcome and appreciated. Messages, cards- always always loved- for me, phil, the kids. A good friend has become a Lily penpal and it's amazing what a morale boost a piece of mail can be for the littles! Thank you thank you thank you and lets get er done!
Messages for the Mallorys
8 years ago