So 16 days past surgery and all I feel I've been doing is sleeping and watching Maury Povich. I won't lie - my favorite episodes are the paternity test shows. They're completely addicting.
I still feel like shit, taking a Norco 10 twice daily with tylenol. I still need the Meclizine and Zofran, which the surgeon said I shouldn't need anymore. But I definitely know when I don't get them, and it's not good. I was down to Norco 5 by the time I was in inpatient physical therapy after surgery 1, down to just Tylenol when I got home. Certainly more than 2 weeks later I should feel better. But I don't. I woke up crying last night with pain because I needed more meds.
I am so tired I can hardly bring myself to do anything all day. Even when I do get up and do things, it's so minimal before I get tired and just want to crash. It cannot be normal to be exhausted after hanging Christmas stockings!
Plus there are some family issues that drain me emotionally. To the point that I can literally feel my blood pressure raise and it becomes hard to breathe and think rationally. I hope it all works itself out soon. I don't think I can take anymore of a certain someone's nonsense before I choke her.
Merry Christmas everyone!
But re: my brain surgeries update, seriously...I had half of my 70-something staples removed this week. Holy shit they hurt coming out. Twice as painful as the first 70 after my previous surgery. Then again, everything related to this surgery is twice as painful. Read my note above about the meds I'm still taking. The nurse was about to remove them, and immediately said there was more swelling than there should have been and ordered a CT Stat. Great. More abnormalities.
Turns out there's some swelling and still some fluid in there (ugh), but not enough to be concerned. Just take out half the staples, the other half will come out next week. Only Rob can't KEEP taking time off work, so Dad is taking me. The scabs from the staples they took out ITCH, the staples that are still in there hurt and limit my mobility. So I'm still a whiny mess.
But work has continued to be awesome and understanding. They reassured me my job wasn't in jeopardy (whew! since I don't quality for FMLA), though the doctor STILL hasn't done the short term disability paperwork...which means no paycheck for Stacey since October. And it's starting to hurt, especially with the holidays coming up.
So I am out of the hospital from my second brain surgery. I was NOT ready to come home yesterday, I told every nurse and doctor who stopped by my room that I did not want to go home, that I felt I needed one more day in the hospital. None of them listened or cared, so I am home now.
While I was in the hospital I was in excruciating pain - much more than I ever remember after the first surgery. It took Thursday night, Friday, Saturday, Sunday, Monday, and Tuesday morning to control my pain.
What we tried: Norco 10 (or two Nocro 5s) every four hours, and hourly shots of Dilauded
Norco 10 (or two Norco 5s) every 4 hours, and Dilauded in a PCA so I could dispense Dilauded to myself every 15 minutes (which I did religiously and it kept me from sleeping because I wanted to make sure I got every dose I could get).
What worked: 2 Norco 10s every 4 hours.
I am also taking Meclazine, Zofran, Benedryl (some of the meds are making me crazy itchy), and Senecot (TMI, I know). Yes, it all works, I'm not in excruciating pain, but that's too much medication!
My legs are weak and I emailed the surgeon's nurse all of my outstanding questions this morning. I hope she can comfort me and reassure me that I am indeed ready to be home. I can't get off the couch without straining, and the surgeon was clear for me to not strain under any condition.
I guess this has turned into my tumor blog. Which I guess is fitting since it's all I think about anymore.
So I went to see my neurosurgeon today, and turns out I do have a pseudomeningocele, which is a collection of cerebrospinal fluid. I have a grapefruit-sized lump under my head near my right ear, and I can feel fluid (or something "not right") going to the back of my head about an inch from my left ear.
Anyway - the size of this means I have to have surgery. Again.
They need to peel back my scalp and crack open my skull and reposition the skull plate so there aren't any gaps or airholes. Sigh. I know it'll all be fine. I trust my surgeon, I know they're not monkeying with the brain, and this uncomfortable bulge will be gone. But I don't want more staples, I don't want to go under again.
I just want to be back to normal. I want to go to our scheduled shows, have Thanksgiving dinner, and worry about what to get people for Christmas. Not if my spinal fluid leak has burst and I need to rush my ass to Northwestern.
Edited to add the photo of my pseudomeningocele. You can't really see it in the picture - but it contained a pint of fluid and was quite large (at least it was to me!).
Who knew such a day existed? Seriously? Well, it's today - on my one-month-a-versary of my craniotomy.
My head is still swollen, but it doesn't hurt. (Probably because I'm not crying and worried about it like I was last night. Partially also because of the Norco I took earlier today, which I try to not take.)
I am still scabbing - TMI, I know it's gross - and it itches. But if I try and tap my head (think weave tap), some of them come out with clumps of hair! Gross and WTF?
I am so jealous that Rob got to meet Darian Trotter while I was in the hospital. (He surprised me with autographed pictures of Darian and Patrick Elwood, and met with Darian for a brief tour of the studio and a picture.) I sent both a thank you email today. I hope Darian will let me - the sick one! - come for a tour and picture, too! But I know that's greedy and rude to ask. It was nice of him to do the first one. Rob said he's a super nice guy.
Patrick said he would come to the hospital with cameras and stuff, but I was vomiting and feeling too ill for company. Boo
Ahh - itchy itchy bulbous head. Otherwise I feel ok though.
13 more days until Nada Surf in Minneapolis! yippee
I was having brain surgery. I know, I know. No one cares anymore, get over it already.
But I sneezed again today, heard / felt another alarming POP and am getting increasingly worried. My head is also becoming increasingly swollen. Like - it wasn't at all swollen a week and a half ago when the nurse was removing my staples. Now, I'm swollen out to my right ear (the side where they cut) to an inch from my left ear (no incision except for the one down the center of the back of my head).
It doesn't hurt (unless I sneeze or make sudden movements), but when I push on it it feels like a water balloon. Of course I don't push on it hard, I just touch it and it presses in. There's obviously liquid in there. But is it a cerebral spinal fluid leak? Is it an infection? Is it blood? What else can it be that I don't know is a possibility?
My scalp also itches. I've read that this means it's healing, so I'm ok with it. But it's annoying. And the scabbing is annoying too. And quite gross.
I am just so worried about this swelling and I don't know what to do. I do not feel any fluid outside of the skin. But about a week ago I did feel some cool liquid sensations under the skin - like, I was being rained on from inside. The nurse talked to the surgeon and neither thought it was anything to worry about. Then wham-o, my head is twice the size it was before.
Hopefully I just need a steroid and it'll go away. Keeping my fingers crossed...
***UPDATE*** So I talked to one of the neurosurgeons, and he said it's likely a pseudomeningocele. Nothing to worry about if I can talk to my surgeon Monday (which I already was scheduled to do). Too bad I can't find any information on this online...maybe that's a good thing. But I'm still worried, just a little relieved I don't have go to the ER. I'll still cry myself to sleep though. I'm tired of all this bullshit. I want my biggest problem to be an asshole client, or a report that went out wrong. Not whether I have too much spinal fluid leakage and if I need to have surgery again to seal up the scalp. Which means more time in the hospital, more staples, and starting over with recovery.
So I'm just sitting here, being a lump because I can hardly move, and I snezed. "So what?" you might think. Well, I heard and felt a POP! in my head, on the right side behind my ear, in my swollen incision site. I can't find anything online if this is normal, if I should be worried, or what. So of course I'm worried as hell. This fucking sucks. Everytime anything happens, I freak out and worry that I have fluid leakage. Fucking sucks, I tell you!
Once I'm better and can drink (yay!), I want to have a champagne toast a the house. Really I want to have it outside of the house, but I can't justify spending the money. Rob and I found this cute chocolate shop super close, but it will cost us $1000 and I'd have to really limit the guestlist, and it would only be for 2 hours. So I think we'll do it at home and just have to hire a cleaning lady to clean before and afterward.
Right now I'm thinking we will have this on a Sunday afternoon (to discourage people from over-imbibing). We'll have champagne (a sweet and a dry) and Miller High Life (the champagne of beers!) to drink, with some sparkling water. Strawberries, chocolate covered strawberries, grapes, truffles, lemon bars, cheese and crackers, potato chips (which go amazingly well with champagne), and whatever other goodies look good at Trader Joe's.
Some "champagne" I hear is inexpensive and decent are: Domaine Ste. Michelle Brut (fresh and dry), Freixenet Cordon Negro Brut, Lorikeet Brut (sweet Brut).
Rob and I were in St. John getting married one year ago today. Happy anniversary honey! So much has changed in the last year. But it's been a great first year.
St. John was spectacular and I can't wait to go back. Everything about the island is so charming and unspoiled. Hopefully I'll recover soon and we can scrape up the cash to go to next year with friends.
Ok, so I admit I had the surgery the week I did (rather than the following week) partially so I would be a smidge more healed in time for the Nada Surf shows later this year. (We have tickets to see them in Chicago and Minneapolis after Thanksgiving.) Though a larger part of that decision was just to have it over with and not agonize about what's to come, losing sleep and such. But a small factor was how quickly I'd bounce back to see Nada Surf.
I think this is the only time in my life I'm relieved they're playing so few Midwestern shows. Otherwise we'd have tickets to see them in a number of cities, and I know I'm not going to be up for that. Rob and I are already unsure about the MN show. I should be able to do the Metro - it's close, and it's a familiar place. I'm also glad the shows are so late in the season. When these shows were announced, I never thought November would come! Now, I can't believe it's already November 4, and hope the days drag slowly and I recover quickly so we can go and have a good time. I will be sober though - bummer no booze on Norco.
My hearing has changed since the surgery - I hope it's not permanent! I hear weird echos and high pitched sounds (from kids screaming to my own voice) sound even more shrill. But I also hear music differently. Not bad different, either. I can't really explain it. So a show will be interesting.
Do most people always have a song running through their head? I think I do about 50% of the time. But when I was in the hospital, I think I had a handful of songs that were running over and over for weeks:
Weezer (Holiday, Heart Songs),
Nada Surf (Pressure Free, Spooky, & 80 Windows [which was weird since I didn't used to like that song and now I love it]),
and Local H (PJ Soles).
So I'm trying to look forward to happier things to come instead of dwelling on my tumor since that just bums me out. Rob and I were supposed to see a bunch of other shows this month that we're skipping now, poo, but he's still going to Smashing Pumpkins (at least I really want him to go - I'd be sad if he missed it on my account). Such is life, right?
I'm also looking forward to Thanksgiving. I have a lot to be thankful for this year. Yeah yeah, cliche I know. But I am truly lucky that my brain tumor was benign, that we caught it before I got pregnant, that the neurosurgeon got it all (which is very rare), that I didn't have any on my spine, that I have short term disability, that Rob didn't cheap out on insurance like I wanted him to, that I have family and friends who are supportive, that I have Rob - I don't know how I'd have gotten through this without him.
I am excited about our first anniversary - one week from today. I have no idea what I'm going to get Rob (paper / clock) since I can't get out to the stores and we're kind of broke because of medical bills and my partial pay and stuff...But I'm just glad to be home to celebrate it with him. It's been a crazy first year of marriage - I know he really meant it when he said in sickness and in health. Even though the minister had to prompt him a second time to say "I do". hah
So I'll try and stay positive, and not so "woe is me" even though it's easy to be a drama queen post brain surgery.
After a week at Northwestern recovering and a week at physical therapy inpatient rehab, I am finally home!
I have to wear a very sexy eyepatch because I have double vision and without it I have horrible headaches. I've gotten so many wonderful cards, flowers, and gifts from people I never thought would have found out or even cared. It's so nice to know that people do indeed care.
My head hurts, which I suppose is expected. But my scalp feels like I'm wearing a leather hat...it's hard to explain. But it doesn't feel like my scalp or head.
But the great news is that I'm home. The surgery went well. The tumor was bigger than the doctor expected (2 cm x 3 cm), and wrapped around the brain stem more than he thought. But he got it all, and I'm home. Being home is the most amazing feeling. My husband has been wonderful. I don't think I could have gotten through this without him.
