1st Solo Trip

Okay, so I only made it 1 block, then started to panic. I was slogging, and I couldn't feel my right foot, leg, arm or hand and my heart started racing, and I wondered what would happen if I had a seizure (I've been feeling off), would anyone find me? How long would it take? I would end up in an ambulance all alone, in a hospital all alone, and I thought to myself, "Why am I pushing this?"

Last surgery it took 5 months to be able to slog a 10k. I haven't even walked alone yet and here I was on a journey around the lake which would require 45 minutes of running, door to door, at my pre-surgery pace. Sometimes I jump into things too quickly...

Hey everyone, this is Dan and I have commandeered this blog from Jessica. I came home early today to find Jess in a less then desirable state. She was completely exhausted, stressed to the limit, and still trying to finish her blog. Although the parameters will need to be discussed, I feel it is necessary to institute  another technology blackout. Jess feels extremely guilty when she does not respond to texts and emails, or puts off blogging for too long. As with everything in her life she needs to be 100% in (or out in this case). If she is going to answer one email she will answer 100. She loves communicating with friends and family, and appreciates all the support, but sometimes her love for gab gets in the way of her healing. Jessica's recovery is so vastly different from her first surgery that it can trick you into thinking she is farther along then she is. Because she is doing so well physically its hard for me to remember that she is still only roughly five weeks removed from brain surgery. 

As with the cancer in general, you do not see the area that is hurting. There are no bandages or limps to identify the problem, just an attempt at understanding the intricacies of her healing brain. Many times I have misjudged Jess's comfort levels and stamina because her physical and communication skills can take her far past the end of her cognitive stamina.. Unfortunately, I usually do not know I have misjudged her comfort level until it is too late and she is burnt out. Jess is still attempting to get back to the routine of her normal life, and sometimes responding to the number of emails and texts she receives can take up a day in itself. She receives more emails and texts in one day, then i do in a week.

I hope that this will give everyone an understanding of why we are restricting Jessica's technological outlets for a bit. It is not just because I am mean, I promise. I am sure that she will be back at it within half the timeline we agree on, but it will give her some time to relax and catch up on much needed rest. She hopes everyone understands her silence, and thanks you all for your support. 

'till the next technological intervention, Dan.

P.S. I have been writing this for roughly ten minutes and Jess is already asleep.

Happy Thanksgiving

I hope everyone had a wonderful holiday! Dan and I hosted our brother and sister-in-law and their son. Christel and I cooked an entire thanksgiving meal (my first). It was hilarious! I never understood the necessity of timing for such a feast. Usually I'm with the boys watching football. I seriously deeply appreciate the women (and few men) who have cooked Holiday meals in the past. It truly is a logistical nightmare! Some things were a little cold, a couple of things were forgotten, and we might have over cooked the turkey, but it was also delicious! Thankfully none of us are picky :)

Now I'm relaxing at my parents house. I think it's been around 6 months or so since I've been here, it tricky when you can't drive and traveling alone isn't an option. I've been excited to get here, but I was also very nervous. The movement and travel are exhausting. It kind of jumbled up my brain. It's frustrating but I try to remember that I'm just over a month past brain surgery.

I'm recovering well, but its also confusing. I look in the mirror and I think I look fine, but I don't always feel fine. I still can't leave the house alone. I can't be in fluorescent lights or shopping centers, or anywhere too loud. My brain gets overwhelmed easily, yet refuses to nap. My right side has not improved, but I'm learning to work around it. It takes 5-10 attempts to put a glove on my right hand. It takes about 10 +/- minutes to put earrings in. I can finally put a bra on by myself (no more sports bras...yes!) - still it takes several attempts. I'm getting better at doing things that make me feel like a normal girl, but the sensation is still horribly lacking. It's creepy, and messes with my confidence. I know it will get better bit it physically feels bad, it almost makes me nauseous and definitely frustrated. I want to run it out or go lift a weights to wake it up, but I can't leave the house alone and I can't workout at the gym because of the stimulation. I've gotten fatter, which I know will get better when I'm able to truly exercise, but it's hard to keep positive when I'm missing my endorphins.

I try and find someone to walk with five days a week, but at heart I'm a runner and I need speed. Hopefully ill be able to start pushing the boundaries so that I can get out alone. I'm scared though. I've been overwhelmed once since the surgery when I thought I might be having an aura. I took a lorazepam and stuck my head into the crisp cool air and I calmed down. I just don't want to have a seizure out around the lake all by myself, worse even would be along the walk to the lake among the neighborhoods. It could be very ugly. I don't want to push things and yet at the same time it's the only thing I DO want to do. It's all a gambling game.

I'm going to try and take a nap. I'm pooped.

Morning Laugh

Saw this video this morning and laughed out loud, then knew I had to share. Best morning video ever!! Poor little baby red panda..

Two Irish Boys

I'm relaxing on the couch under my favorite faux fur throw. I truly do not even feel like I have anything wrong with me! Still got the numbness thing going on, and lack of dexterity in the hand, but shoot that's nothing. I'm thrilled!

I've already gone on several three mile even a couple of four mile walks with friends. In no time I'll be jogging around the lake :) I have to keep pushing the limits because I'm bored. Dan's working 10 hours a day which takes him away from the home on average 13 hours a day, and now he's working spans of 9 days in a row. I'M SO BORED. I am so grateful that Dan has a job, I remember the year and a half when he was out of work (which was perfect for nursing me to health from the first brain surgery). I feel dumb even saying anything. Maybe its because I'm jealous. I wish I could work. I can't wait to wake up in the morning, be all sleepy and groggy and rushed, and get in traffic as I drive or ride the bus to work. I can't wait to have co-workers, and office politics, and new friends, and hear about other people's lives on a daily basis. It's going to be so fun!

So here's the current deal, I am in talks with doctors at the German clinic to do the dendritic cell therapy. I have a phone consultation on Dec 4th. In the meantime, I've been trying to get all of my blood work, liver enzyme levels, and key information - like pathology, pre-surgery MRI report, surgery report, post-MRI report and such. Gotta call around to a few departments at UCLA, get the forms for them to release the documents, then have them sent. It's wonderful that I can speak and process information! I think of how grateful I am multiple times a day, how this surgery is exponentially better in recovery. It's fantastic!! Of course there were the dark moments, but since I'm in the sun now, I don't focus on the clouds :)

Here's a sweet video that my buddy Meghan sent me from YouTube. I know that I say this a lot but.....this is the cutest video!!! My eyes started watering and I got goosebumps. These two boys are so talented, and adorable. Trust me on this one, you will love it!

POW

Things have been steadily improving. I chose to slightly taper off my muscle relaxers, Tylenol and Aleve. My last pills were 48 hours ago. I am no longer on any type of medicine, and I'm telling you it feels GOOD! Here's the story....

This surgery I had sutures instead of staples. Sutures are basically extremely tightly woven stitches. Mine was threaded through the skin with a very thick type of wire like material. The stitching was incredibly tight which I appreciate (it made for a very small scar), but as it was removed I could feel my scalp relax, and the pain increased into a deep throb. I'm convinced that the horrible pain was due to the sutures, then to the suture removal which caused a shift in the skin all over my head. After four days it started to get better, and then POW.

Typically, sutures and staples are taken out at around 10 days or so after surgery. Because it was my second surgery, Dr Liau scheduled me for 25 days out. It makes sense, I can only imagine that each time they saw through my skull it becomes weakened. The incision is truly beautiful, half the width of the original scar (and only slightly longer). Before the surgery Dr Liau looked at my scar and asked me if when I get a small cut, does the scar pucker along the edges? I looked at her sideways and thought to myself, 'Doesn't everyone's?' Apparently not. It's only like that for certain skin types. She's so smart!! I can't wait until I can compare the different scars from both surgeries. Hopefully Dan can take some pictures soon.

Ok. I'm pooped. I have so much going on but it takes about 2-4 hours to do a post and although I can not feel my right hand, it is starting to completely quit on me so I have to click the keys with my left hand like a chicken and its' beak. Awkward. It's hard enough to type and make my left hand hit the right letters, but when I'm tired it all goes to crap.

Here are some random photos I've taken over the last week or two...

First Trip Around Greenlake In My Wheelchair

Supporting Movember (outfit furnished by MMF)

Bingie & I Studying Our Vocab

A Love Photo From Jules

First Slog

Dan and I walked the whole lake today, 2.8 miles. Last week, Dan took me in a wheel chair. At that point I was only able to walk about 1/5 of the way. I've done a few different walks, small little ditties, but today I decided to get nuts. When I get frustrated, it fires me up. Dan took a video of my first little run (I thought he was taking a couple of pictures). I look like such a goober because I'm so exited. I figure if I'm fighting a headache I might as well take any break in pain and use it to my advantage! We drove down to the lake, grabbed a coffee, walked the lake - speaking dreams aloud, solving all of our problems and then completely inspired I decided to start slogging (jogging at the same speed of a slow walk). I didn't go far, but it spurred my belief that maybe I can slog completely around lake by the end of the month!

I need to get my heart rate going. It makes me feel alive. Today I felt more me like me in over a month. Dr Liau is truly a miracle maker. The recovery from the first surgery was massive, I'm looking forward to blowing this one out of the water!

Snarky vs Snarky vs Snarky

I have been in bed....let's see...going on six hours, with no sleep. There were two moments when I was almost asleep, then I heard a very loud *CRACK*, then later a series of cracks, coming from my skull, and both times I shouted, waking Dan. I am exhausted. I'm still taking pills every four hours. My circadian rhythm is all messed up. When I lay down my head makes crackling sounds which I'm very familiar with from the first brain surgery, but I don't think I'll ever get used to it. Not to mention the right side of my body is still mostly numb.(Sometimes it'll tingle a little, the whole side, or just in specific locations.) It's weird when you can feel none or 10% of your hand, or arm, or half of your bum, or your foot. Hard to get used to that feeling. It's the feeling that I used to get just as I was having an aura - just before a seizure - that's confusing. Now I'm constantly reminding myself, 'this is just a continuous false alarm. Nothing to see here. Mentally move along.'

I've been off the anti-seizure medicine for a few days (5) and the hallucinations have not returned. My skin is clearing up as well, which is fantastic! I'm not as depressed, just completely exhausted. Even though I clearly need more pain medication to function (remember, I required the equivalent for a 300 lb person to function while at UCLA - double my weight.) I can not get anything until I can get into the Perioperative Pain Clinic at the UW, which is a maze of insanity. Call this doctor, call insurance, call the clinic, call to see if they received the fax, "it's at the call center", "call back Tuesday, Monday's a holiday". I JUST WANT THE PAIN TO GO AWAY. It's ridiculous. I'm taking muscle relaxers, one every four hours and Aleve every 12 hours, but that's it. The thing that's crazy is that the muscle relaxers don't have much of an effect. They slightly lessen the pain, but I'm still at the least a 6 out of 10, other times I'm at an 8.5. What gives? Our government and hospitals are so concerned about the over use of pain meds that they are hesitant to treat me. It's horrible. I just had brain surgery, let's get real. From the time I was released from UCLA I had 13 days of pain medication. Not even a full two weeks. I didn't abuse it. I never took more than was prescribed, I tapered off to make the pills last longer so could function for the trip home.

I hate that I feel physical pain so deeply - twice as intensely as i should. I don't want to take the pain pills. I normally don't even take over the counter medications, other my herbs or supplements, but those are to fight my brain tumor.

This is my second time at the brain surgery rodeo and both times I have had horrible lingering pain issues. A side: while I was at UCLA in the neurosurgery ICU, three days in, the "pain team" came to assess me because I was so miserable, quietly sobbing most hours of the day. The head doctor asked me a series of snarky condescending questions, then finished with, "Please don't be offended *snarky* but do you take street drugs recreationally? (I chuckled.) Because it has been widely been researched and documented *snarky* that brain surgeries are not painful. I mean, you MAY or MAY NOT be having a lot of pain." My instant response (after three days of sobbing unless they gave me extra shots of pain killers on the hour with pain pills every two hours) was in a very direct and cold voice (a voice used in less than 5% of my interactions in my 32 year life - typically reserved for a 'behind the back' rant voice), "Oh no. I am IN pain. And I understand your concern about the problems with pain pills, but I am a runner, I'm healthy, I take a lot of supplements and no. No, I am not I'm not using 'street drugs'. I'm just in a lot of pain. From my surgery."

Not wanting to be rude - what would that do, nothing - I let him leave. They assessed and upped my meds, thankfully. I wished later (always how it works) I had said to him, 'Have you had a team of specialists slice through your skill, the protective layers, the muscles? Have they dug around in your brain stimulating various muscle groups with electrodes sending electric shock waves through your body to verify which is tumor, which is brain matter? Have they differentiated between the two then physically separated, then cut, and cut, then pushed it all back together layer by layer? Have they cut out the old scar from the FIRST CRANIOTOMY stretched the skin to cover your skull, then tightly sewn the halves of your scalp back together and then call it good?'

It was a good lessen for me to remember; if I haven't been through something, I have no idea what people have gone through. Each situation is completely unique.

I'm attaching three close-up photos of 2/3 of my sutures. They are finally out! After a week of calling, faxing, and emailing every day between Danny, my dad, my mom and me, we finally persuaded UW to remove them so that I wouldn't have to make the exhausting trip back down to LA. It was a battle, but it's over. Now we just need to make sure the wound doesn't get infected. There is an "area of concern" according to nurse Ratched (at the UW - not her real name) but I'm not convinced that she's not just trying to freak me out. If it does somehow become infected (fingers crossed all will just heal from here) I will bring her flowers. So there. That makes me feel better for being snarky about the snarky nurse. Ok, I'm going to go try and read some of my Jack London Collection. Never read his stuff, but his name sounds familiar. Thanks LK for the loaner!

I really am sorry for being so snarky. I go back and forth between too much pain, or just enough pain to make me crazy. Silent tears, sobbing, insomnia, dull monotonous never ending pain on the left side of mg head. (Imagine Chinese water torture with ice water or scolding drops, with oscillating internal sword fights and brick breaking. It's kinda like that.)

Mal Meds

My medications have been making crazy. For the past week I have been confused about what specific meds are causing problems. As my pills run out, it's easier to pinpoint. I have been hallucinating, talking to myself and to imaginary people when I'm alone. Now that I'm back with Dan, he caught me in an episode, so he emailed Dr Liau. He also talked to her about the fact that my whole face is covered in painful blisters. I'm not fairing well, constantly in pain (no more pain meds), blisters all over my face - spreading across my body, hallucinations, serious depression, suicidal thoughts, it's so awful.

Dr Liau has me tapering off the anti-seizure medication early,thankfully. All we can hope for is to get back to normal, back to the happy place where I normally live. I am barely hanging on, at the end of my rope, feeling crazy, LITERALLY psychotic and very much in pain.

Sorry to my friends, but I don't want to see anyone. Please don't stop by. I love you guys, but I'm not ready.

Future

This little bird can now fly, her leash has been cut! I could have cut my hospital tag earlier but it felt like an accomplishment, a sweet victory.

 I have not been awake more than two hour at a time today. Somehow, the exhaustion has finally caught up to me. It's been tricky because in order to sleep I have to be sitting up and I can't lean on anything against my head, it's too painful, so it becomes a riddle, a challenge to figure out how to get comfortable. Happily, today I've become so exhausted that I will just rest my face down on my chest and pass out. I need as much sleep as I can so that I can make it through tomorrow. I should be home sometime around 9:30 pm or so.

Of course I can't wait to see Dan, to be home and cuddle my kitty, but I'm also nervous. Dan will be working 60 hour weeks and I'll be managing myself. My parents have been cooking for me, helping bathe me, and taking care of all of my pills and such. I'm going to need to a system figured out for all the serious pills, eight times a day, reminding to eat, figuring out WHAT to eat, etc. I have a feeling I'll be eating a lot of apples :) Easy stuff.

I just ordered vocabulary flash cards and a math work book from Amazon, it should arrive early next week. I figure I can spend a couple of hours each day freshening my brain :) It sounds fun to me, I'm pretty excited. I know I'll spend most of the next month on the couch or in bed, and I don't want to be mentally bored.

We'll be looking into other treatment options soon, but after that I'm already excited to think about the future, maybe even consider taking more courses. Perhaps formal schooling of the Restricted Ketogenic Diet. Who knows!