Two weeks

Two weeks post op and things are not as I expected...

The real problem is that before my surgery I spent my time researching what the surgery was like, what the possible tumors were like, and what the side effects of tumor resection in the supplementary motor area would be like. And of course I youtubed a couple frontal craniotomies because I'm a glutton for punishment. For the record - those videos gave me serious nightmares and I really shouldn't have looked them up — and yes Jordan told me not to. You don't really think about the fact that they're cutting into YOUR brain and blood vessels and skull and protective covering and those videos made me realize they were. They're one of the reasons I almost didn't go through with it.

What I should have been looking into was "life after brain surgery" which I guess wouldn't have really made a difference but at least I could have prepared my family and friends for what would be different. Since I'm still waiting on the final pathology results, I can't say for certain that I kicked cancer's ass but the doctor is fairly positive that they completely removed a grade 2 astrocytoma from my brain. An astrocytoma is a type of tumor formed from astrocytes (a type of glial cell) in your brain. You can think of glial cells as the supportive infrastructure of your hardworking neurons that make you who you are. So my tumor was made up of me. There aren't clear reasons why they form...they just do. A little genetic mutation tells them to start forming a mass. That mass eventually gets big enough and people usually notice changes that take place that tells them something isn't right. My changes happened to occur around the time my sister was missing which is why I didn't pay attention to a personality change, change in sleeping patterns, change in appetite and food preferences. And of course I already talked about the hand spasms that were actually seizures that I wrote off as carpal tunnel.

The scary thing about astrocytomas is that they come in different grades (1-4) each one being worse than the previous. A grade 2 astrocytoma, if left untreated, can turn into a grade 3 or 4. And once someone is diagnosed with a grade 4 tumor they're pretty much given a death sentence (but of course, people still beat those every single day). I do recognize how lucky I am because we did catch it early, and the problems associated with them removing a piece of my brain have been extremely minor - well at least from what I can tell so far. The problem is that astrocytomas are really great at putting little feet out, and those little feet can grow more tumors. And since pathology is taking so long to confirm that the entire tumor was removed/what type of tumor it was ... I'm just a nervous wreck. I'm trying to stay positive but how would those guys feel if they were waiting around to find out what kind of cancer was just cut out of their freaking brains? AHHH!!!

But anyway, it has been two weeks since my tumor was removed and my life is a lot different than I anticipated. A lot of the problems actually relate to the medication I've been on for recovery purposes. The first 24 hours after the surgery I was in the ICU. I don't even know where to begin with that... the were catheters, about 4 or 5 different IVs, tons and tons of injections, some physical tests and they woke me up every hour to talk to me and give me drugs. Apparently they were making sure I could speak and that my brain wasn't bleeding because sometimes it takes a while for cognitive decline to present itself.

The next morning I got an MRI done and they took the catheter out, and moved me to the 7th floor. Getting the catheter removed was by far the best thing that happened. For those of you who haven't had the pleasure, a catheter feels like a permanent bladder infection and it makes you feel like you have to pee constantly except you are peeing constantly through a tiny tube that's in your urethra. Discovering there's something in your urethra while you're on anesthesia is horrifying -- just FYI. And I can still remember the first steps I took after my surgery and how hard it was to walk, a sense of dread definitely crept into me that day. But the second and third steps were much easier.

So I was finally released Friday morning, two days after my surgery. I had to pass physical therapy and talk to a couple different professionals but all of them seemed impressed with my functioning and attitude. My boyfriend came to meet me at the hospital for my release, he also wanted to sit in on the meeting with the surgeon and the physician's assistant for when they told me how to clean my incision site and how to wash my hair. They finally took the bandage off of my head that day and I couldn't believe how small the surgery site was. Just like everyone else, I was expecting half of my head to be shaved... instead it looks like I have a little skin headband. And I have so much hair that now that everything is cleaned up, you can hardly tell I'm missing any hair at all, although the entire back of my scalp is completely numb and my scalp is extremely itchy...the itchiest thing I've ever experienced. The PA also gave us a bunch of prescriptions to be filled and said that I needed to get them that day.

You can see a few of the incision pictures here, for some of you they may be NSFW... the images are slightly graphic and a little bloody. You can see that one of the wonderful PAs also braided my hair in the front to get it out of the way:

As my boyfriend and I were leaving the hospital the first thing I noticed was ANXIETY. The bright lights, seeing other people, being in traffic, but more than anything...riding in the car. I hate riding in the car now. It fills me with so much irrational dread. It has already gotten better, but it sucks. Especially sitting in traffic, it really freaks me out. We got back to my house where my parents were getting ready for me to come home and Jordan and my dad went and got my medicine and a whole bunch of water. The drugs I was prescribed were: a corticosteroid to counteract inflammation, 2000mgs of Keppra, the anticonvulsant I've been on for epilepsy, the pain medication percocet, and an anti nausea medication because the pain meds make me extremely nauseated.

I thought I would spend the first two weeks sleeping and watching movies and eating jello but that has not been the case. The thing no one tells you about steroids is that they ruin your life. Corticosteroids are a necessary evil, but they have been the single worst experience of my healing process. They make you irritable, anxious, depressed, agitated, really REALLY hungry, and they give you insomnia. They also make you retain water, and make your skin break out, they also make your joints really sore and your skin hurts when you touch it. Combine those with the pain pills, that basically stop your GI tract from moving anything through it and imagine how unpleasant I've been. EVERYTHING has been pissing me off. Literally everything. I yelled at my dad for slurping cereal and coffee. I yelled at my mom for accidentally spilling a glass of wine on my birthday. I yelled at my boyfriend for singing along with Coldplay during the Superbowl Half Time Show - please make fun of him for that. I yelled at my dog for sniffing something on her walk. I've also been crying for no reason about nothing. I cried all day on my birthday because I'm crazy. hahahaa. It's just been unreal. The doctor should have warned us like "hey, if you survive brain surgery and don't have many issues you're going to be freaking psycho for a while and you'll be really mean to everyone for no reason for a couple weeks." Thanks a lot, modern medicine. I also have some serious ADD, I can't pay attention to anything for more than 10 minutes. So getting any work done, reading, binge watching a show online, are all out of the window. I am still having a few minor issues as well with typing, handwriting, texting, and some fine motor skills. And because my joints and muscles are so stiff - walking and getting up have been tough. The physical therapist recommended I get some crutches or a cane so I got a cheap cane and bejeweled it. I have only used the cane once, and that was yesterday when I was suffering from those very bad headaches. The only other huge difference so far is extreme weakness and fatigue and my short term memory really sucks. I get winded going up the stairs and have trouble walking more than 2 miles but I know those will get better with time.

Again, it's good that I can complain about the trivial things because a lot of people who have gone through similar things definitely aren't as lucky as I am. My last day of steroids was Saturday so I'm slowly but surely coming around. I finally slept these past two nights and aside from some really bad headaches (we're talking level 10, debilitating, feeling nauseated, can't move headaches) yesterday and Monday, I haven't had to take too much of the pain pills either. Now that I'm weening off of all the drugs, except for the Keppra, of course, I'm excited to see if anything really is different. I get to meet with my neurologist next Wednesday to see what the next steps are to track my epilepsy and the final results from pathology should be in by then too. I should be hearing from an oncologist soon to figure out how to track my tumor growth (or hopefully lack there of) and I should get cleared for work from my neurosurgeon on March 9. This next month will probably be one of the laziest, most boring months of my life but it's better than having a brain tumor.

Again, thanks for reading. The amount of love and support I have received is truly indescribable and having an outlet like this blog is helping me recover and acting as a type of therapy. I also hope that some day someone going through this will come across my blog and realize that they aren't crazy and that they may have a tumor and that they can do it. I plan on updating this blog regularly so if you think these are interesting please stay tuned.