Postie Debriefing - Surgery 4/23 at Massachusetts General Hospital with Dr.s Barker and McKenna - full removal of left-sided 3.2 cm X 2.2 cm Acoustic Neuroma
Best things:
Cut hair: I buzz cut my hair (my hairdresser did). It was SOOO worth it. I felt clean and comfortable and cool the whole time. I never worried about my hair. I felt like it looked good and now that I’m out and about I like wearing cute scarves and continue growing it out to about Jamie Lee Curtis’ length.
Buy scrubs: I bought a mismatch of clearance scrubs to wear as pajamas. They are clean, light, easy to wear and wash and mix and match and of course CHEAP
Denial: Stay in some denial about how difficult this surgery is. I read up everything I could on these sites and still saw mostly the positive. For me, this surgery was a must because of the size and impairment the tumor was causing so I found it very helpful not to be aware that I would feel hit by a mack truck afterwards, plus, you heal out of there pretty quickly. I am unhappy with how I feel physically, but feel great emotionally about being tumor-free and having a brain all to myself now.
Process different roles: My wife and I have three growing children and a household to take care of and never does just one person have to do it all so entirely like now. We try to talk a lot about how little I can do and what she needs from others to help her do what needs to be done. We also talk about how useless and guilty I feel by not being able to do the things that I normally do in the household for the family
Lots of childcare: The children are school-aged so 9 to 3 is taken care of, but then we also added after-school care for 5 days a week which we don’t normally do and have friends taking them for the whole weekends the first two weekends. This has helped incredibly. The kids are around stable people and are being kept entertained. After those times, we plan to do some slower activities like movies and such that I can join in or even go to friends’ houses so the kids can be near me and friends.
Strange thing: Delusions of fur - IN the first few days when I would close my eyes I would feel surrounded by a great sphere of just plain pulsating fur like I was lying next to a wild, but sleeping bear. I had trauma and violence feelings, feelings of euphoria and body wholeness. I would often fall into restless sleep which seemed torn by violence and trauma and falling. I just let these dreams come and go and they went away in a week or so.
Hardest thing is to eat: I have (temporary) left-sided facial weakness so I can’t open my mouth much and I don’t feel like I have a lot of control over that side of my face. It makes eating difficult and frustrating and hardly worth it. I eat a little for each meal and I try make sure it has good protein and nutrients since I eat little.
Day one surgery: I remember little other waking up. I have excruciating pain and discomfort all day. I was so incredibly thirsty when I got out of surgery. I just wanted to drink. I just wanted to stay unconscious and drink. Whenever I closed my eyes I saw a huge spherical shape in front of me and some kind of nap like fur or hair or towel but it was very weird and it would ripple and move around like it was on something live. It sort of seems like my brain is working to take over the real estate left open by the brain tumor
I'm also having odd and violent dreams. Again it seems a response to my brain dealing with the trauma. I've been taking the ARNICA 30g and delving a bit into the violence and intensity of the dreams
Day two in ICU: I’m hooked up to apparatus and doing nothing on my own. Pain is at 10. The nurses are trying to help mitigate pain and help improve independence. Extremely thirsty. Wanted to drink intensively. Then had to relearn to pee. I didn't realize it'd be tough after being catheterized. Had to stray catheter twice then success. Feel very self-empowered, ingesting fluids and peeing independently. Moved to regular unit late at night. Everything is turned -180 degrees on its head when I open my eyes.
Day three in regular room: Still out of it, sleeping often, but in short spurts. No thanks to intrusive muses wanting to make sure I stay alive and am healthy. Day and night is one big mess of time. Time sensation is completely out of whack. Delusions and disconnected, violent dreams remain.
Day 4 (Monday): doing well, eating, drinking, pooping, sleeping, taking medications, doing PT, unable to cope with external stimuli.
Day 5 (Tuesday): Docs talk of me going home, but I am too tired. I mostly sleep during the day and the PT says she wants to see me the next day before letting me go
Day 6 (Wednesday): I want to keep my eyes closed, but I showered and I'm waiting to go home. My biggest problem is stomach nausea so I don't want to take my medication right now to give my tummy time to calm down some.
Day 7 and further - Some days are better, some are worse. Some days I feel like I can’t lift open an eyelid and other days I have to keep myself from taking a long walk (I tried that on day Day 9 or so and suffered a great fall back, so I’m trying to stick to frequent short walks, like to my basement, etc.
