UW Radiology Report

University of Washington just emailed me my radiology report, and since I can easily copy and paste, I thought I would post it here in case it might be helpful to others. UCLA doesn't provide a radiology report at their Tumor Board, however in the last post I included their opinion on my brain scan (hint: they think my tumor is growing). Now, because of the differences in opinion, we wait for the private third party review from Iris Radiology to determine if I'm in the early stages of a recurrence or whether the differences in findings are more a matter of MRI reading techniques.

Narrative

EXAMINATION:
MRI BRAIN WO/W CONT

CLINICAL INDICATION:
History of left parietal infiltrating astrocytoma status post resection.

TECHNIQUE:
MRI Head Tumor (Primary) contrast plus post GD SAG T1 (Glioma /GBM)(B 2PT)

Non-contrast Head: Axial T1, axial T2, axial diffusion.
Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal
& sagittal T1.

CONTRAST:
Prohance 15 ml 10/24/2015 08:10 AM INTRAVENOUS


COMPARISON:
Multiple prior MRIs of the brain, most recent dated 3/22/2015.

FINDINGS:
Post surgical changes compatible with left parietal craniotomy and tumor
resection again noted. Surrounding FLAIR hyperintensity is unchanged. There is
no evidence of new areas of enhancement at the resection site or elsewhere in
the brain parenchyma. A right frontal developmental venous anomaly is noted.

Incidental note of small intracranial right vertebral artery flow void again
noted and unchanged from 3/22/2015. Otherwise, the major vascular flow voids
through the circle of Willis are patent.

The ventricles and sulci are unchanged in size. There is stable ex vacuo
dilatation of the left lateral ventricle due to volume loss.

Orbital structures and extracranial soft tissues are normal.

ATTENDING RADIOLOGIST AND PAGER NUMBER

##############

UCLA Tumor Board

Morning Guys!

Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time - it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn't mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend's house and upload the report. It took a total of four minutes! Talk about fast. That's way better than the several weeks it usually takes. It's not that the US mail takes that long, it's the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board.

Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It's disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Naïvely, I keep hoping that the tumor has shrunk, but no such luck.

If we're lucky, we should have an update on the status of my tumor from UCLA later today, but most likely it will be tomorrow. There are a lot of patients who will be looking for their results. Lots of anxious people. It's amazing how these results can completely change the trajectory of your life. Sometimes I feel like I'm living in a labyrinth. That I'm constantly standing in the front of two doorways. I never know what's behind them. I never know where I'm headed.

Moving Up The MRI

Oh man, my face has broken out into blisters. Good grief, I am a ball of stress. This always seems to happen in the days/weeks before an MRI. Seriously, sometimes I feel like I'm a woman trapped in a neurotic miniature chihuahua's anxiety problems. Between the seizure and my skin, I am getting some major warning signs that I need to get this MRI over with. I'm scared, like usual, and no matter what I do (nap, meditate, walk, garden, clean, work) things do not seem to be getting better. Last night I was texting back and forth with my bro, and I sent him this quick pic to make him laugh (and illustrate the blisters).

What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn't even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded.

Isn't it weird how scary it is to get an MRI when the truth of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.

Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.

What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.

That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.

There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance,  a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.

I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

Problem Fixed

Success! I received a phone call and my neuro-oncologist will meet with us one hour after the previously scheduled, then cancelled, appointment. I feel guilty for having to be so straight forward and direct. It's frustrating to feel guilty about wanting an appointment with my oncologist. I don't enjoy being forceful. A girlfriend who is also dealing with brain cancer gave me solace though. She said that she's never been bumped by her doctor, that at each MRI review she's met with her doctor - not the doctor's nurse (different hospital). And that she would be upset if she was in my position.

I've been bumped at least three times that I can remember. The most memorable was in October. We met with my radiation oncologist's nurse, she reviewed my MRI and said that the tumor looked great, that she wasn't sure if there was any new growth or not - there was an area of concern, but it could be the positioning of my head during the scan. The nurse said that my oncologist would call the following week with the final results. Unsatisfied, my mom pressed on and said, "Is there any way to meet with the doctor?" That's when we headed over to Harborview's Gamma Knife Center, intent on sitting in my radiation oncologist's office until he would meet with us and answer our questions. It turns out that there was significant growth, and when we met with my radiation oncologist, he wanted me to immediately start radiation, the very next week. If we wouldn't have pressed on, and would have instead gone home after the appointment with the nurse, my family would have gone back to Wenatchee, Danny would have been back to work, and I would have been at home when I received the phone call with the horrible news that they wanted me to start radiation. That's not something you should have to hear over the phone. It was a massive eye opening experience, reminding me that I have to stay on top of my care. I'm lucky to have a team, my husband and family, and there's definitely strength in numbers. Follow your gut, and don't be afraid to voice concerns. It's sad that you have to stand up for yourself, but it's the medical world that world we live in. 

Either the University of Washington's neuro-oncology department is understaffed, overwhelmed, masters of double billing, are out of touch with their patients and their feelings or maybe they just don't take cancer very seriously (which I doubt). Maybe it's a little bit of all of the above. Oh well. It must be irritating for some of the nurses and doctors, I don't believe that they're heartless, but there's a bottom dollar and currently my hospital has a bad system, that's for sure. 

On another note, here's a new recipe that I made us for dinner!

Dinner

Lacino Kale Salad
10 large kale leaves, thickly shredded
1 cherry pepper finely diced (you can chop a few of the seed to add some spice)
pine nuts to taste
romano sheep cheese to taste (I zested ours, but you could grate, or it however you want)

Toss the above ingredients (except for the cheese) with a mix of olive and sesame oil, the juice of one squeezed lime, and fresh cracked pepper. Dish up, and zest some romano on top.

On a side note, has anyone else ever noticed that lacino always has a bunch of little bugs in it. They're like little aphids or something. I wash each leaf by hand, pulling the little bugs off, but it's gross. I don't think I can continue to eat it. Any suggestions before I complete give up?

Brains Behind The Operation

Well, I'm still sick, but at least I'm feeling kind of better. As long as I'm vertical I can manage - horizontal is when my hacking cough sets in. I asked Danny yesterday why it is that I can handle brain surgeries, but not a common cold. What a baby! I'm still convinced that my immune system was juggling the stress of that silly little mole surgery. I used to be so tough, conquering things head on. What gives?

The only thing I can figure, is that I don't do well with optional pain. I also, will never elect to have surgery. I'm just too terrified. This little knife show that the dermatologists want to do, is a preventative measure. I had a mole removed and they thought that all of the cells were excised, however, unfortunately, the pathology came back as a moderate atypical melanocytic nevus and they left somewhere around 1-2% behind. Now they want to go digging for more.

The problem is that I'm a weeny. Since the cells are only "pre-cancerous" cells, and not cancer, there's no way we will ever know if the cells will progress. Well...actually...there is, I guess, if I show up with melanoma down the road. Of course, the fact has not been lost on me that I currently have brain cancer, so obviously my body isn't doing a stellar of a job fighting the bad guys.

Another thought swirling around in my head, is that the artemisinin that I had been taking (I stopped when I woke up with a fever and since I'm still dealing with a pretty serious head cold, I've put all supplements on pause), also fights melanoma with a vengeance. So, I wonder, do I need the surgery? Is this necessary? I've lost night after night about going through with this surgery, but what if I make the wrong choice? I've been horrible with the ambiguous questions ever since surgery, maybe even since I was born. I can sit on the fence playing the devil's advocate all day, and the next day, and the day after that.

I know I need to make a decision soon, but it's incredibly difficult. That partnered with a letter in the mail from UW stating they have scheduled my radiation. Yikes! I talked to an assistant to the nurse of my radiation oncologist (say that five times), and told her that they didn't make a very good case for me to do the radiation. The only positive outcome (they say) is that the radiation will stunt the side effects of the brain cancer. "Stunt." What the hell is that? Seriously? "For how long?" I asked. The answer was that they can't be sure. So, I'm supposed to pay for a procedure that does not extend my life, does not kill the cancer cells, and should/could/might stunt the symptoms of the brain cancer? Eh. Ok. That seems absolutely asinine. That's seriously the plan? I'm supposed to have my head screwed to a board and get beamed with radiation for an hour a day for 5-6 weeks and lose all of my hair, possibly lose some or all of my vision, possibly lose my motor movement and cognitive abilities? I might lose the ability to speak or read down the road, and it could cause more malignant brain tumors in the time that I have left? All of that, just so that they can say that they might have "stunted" the symptoms.

And, here I am feeling like the bad guy, the idiot, that doesn't want to do it. The naughty patient that isn't buying into the "stunt it" approach. I feel great not doing the radiation right now, I would currently be starting week 3 or 4 of treatment, but at the same time I wonder if I'm crazy. All of their words don't add up to doing the radiation, but at the same time, radiation is the standard procedure. Radiation is the next step. It's what you do.

Am I crazy to believe, or hope, that I might be able to fight this fight without radiation? Am I stupid to think that I can win this battle, and survive? Am I doing enough? Is this, currently silent killer, proliferating and taking over my brain? I want to win, but I know that wanting isn't enough. Thinking positive isn't enough. If I only have a 1% chance of surviving this brain cancer, I need a better plan. I need the BEST plan. I have the fight in me, but that's not going to kill it on its' own, I need the brains behind the operation.

I try not to stress about this cancer, but it is absolutely impossible, especially just before bed. My latest reprieve is a trick from my good friend Janice. I start by closing my eyes, and then I pick a category. Next, I systematically go through the alphabet, and find an item for each letter. Here's an example from last night (I even had Danny help me for a few letters, but it didn't work. It started to be a fun game, and we ended up laughing too much so it defeated the purpose - good on stress but bad on sleep). I picked the category of, Adorable Animals. For the letter "A" Danny picked, armadillo (don't know how cute they are, but I gave him a pass). For the letter "B" I picked bumble bee (also kind of a fail since bees aren't animals they're insects). Anyway, I think you get the picture. In all of the times I've used this technique, I have only made it to "N" before falling asleep. I love waking up in the morning and trying to figure out the letter that put me to sleep. All in all I think this fun sleep trick is pretty astounding and hilarious, either I don't have much in my repertoire, or it's incredibly relaxing. Either way it sums up as success!

Okay, time for bed. Tonight I think I'll try Bodies Of Fresh Water (including all rivers, lakes, waterfalls...etc....). Something tells me I'll be lucky to make it past "G."

Blog Comments

I would like to mention that I absolutely love all of the comments I receive. Sometimes, people have questions, and I forget to answer them in the blog posts. I do not have a way to contact people that leave comments, there's no link to an email address. So sometimes, things fall between the cracks. I received a comment yesterday or the day before (days have a horrible way of blending), and I want to address the comment right now.....

To Jessica C, I am so incredibly sorry about your oligodendroglioma growing back. I don't know if you're headed for radiation now, or what you're planning on doing as your next step but I would love to hear about it if you have the time and energy (jessoldwyn@hotmail.com). Brain tumors suck.

The information that I received about the restricted ketocal/ketone diet was a basic ratio of 4:1:1 fat:protein:carbohydrate. There is a specific computer program that epilepsy nutritionist doctors use. I recommend finding an epilepsy doctor that specializes in the keto cal diet, you can then work the caloric restriction into the computer system. It can factor your height, weight, activity level, etc. According to my doctors it is an all or nothing, highly restrictive system. They have a specialist at the University of Washington (where I receive most of my care). I'm not sure where you live, or what hospitals you have available in your area, but I opted out of the highly restricted diet. I didn't want to waste the time of the specialist. I was using the basic concept of the 4:1:1 and restriction of 35% cut of calories. The whole point is to reduce glucose and all fuel. It's very hard to maintain and it was too hard for me to run which I use as a stress reliever. So, I stopped trying to do the restricted keto.

My main diet at this moment is the removal of simple carbs, and simple sugars. I eat all vegetables (I don't eat root tubers), all fruits (but I keep the quantities of fruit to  2-3 servings a day tops), I eat mostly lean meats like salmon, tuna, shell fish, chicken and such. I do eat red meat, but it's just a day or maybe two a week. The majority of my diet is vegetables. My mom found a brassica tea that contains Sulforaphane Glucosinolate which is a very powerful antioxidant found in recent studies to slow the growth of and reverse the damage from glioma brain tumors. Anyway, it's really late and I'm going to be in trouble for not being in bed at this late hour. I have little spies that make sure I get enough sleep, and I think one of the ways is the time counter on the blog posts.

I'll ask for Danny's medical research stuff, the links and everything and add them to my blog so that all visitors to this blog can have the same information that we've been fortunate to find.

If there's anything I could recommend at the danger of sounding completely arrogant, always talk on speaker phone when using your cell, eat several servings of broccoli, all cabbages, cauliflower, brussels sprouts, and broccoli sprouts a day (pick one or two a day). Eat as many mushrooms as you can, especially shiitake, and maitake (maitake has been shown to pull the toxins from brain tumors and slow or stop brain tumor growth). Avoid all refined sugar and refined carbs. I'm sure you already know all of that stuff though, so please forgive me if I sound like a bossy idiot. I know first hand how hard it is to fill a day with the brassica family and billions of mushrooms, but hey, anything we do is better than nothing.

I do hope you email - I'm sometimes as bad as a week or two late on responses, but I respond none the less. Stress is a devil, so no worries about an email, I just hope I can help you in any further way possible.

I'll be thinking of you when I lay in bed trying to sleep (it's not creepy, it just helps me unwind....that was supposed to make you laugh) wishing all kinds of fun things for you in your life. Most of all, I can tell you right now, I hope you sleep soundly, and awake refreshed. Tumors are stupid. Let's beat this.

The Partially Awake Craniotomy

Ok, here it is, the story of my first brain surgery.

On Tuesday, April 27th at 4:30am my family squished together in my dad's truck on our way to UW for my 5:00am appointment for surgery. I sat between my parents, and in the back seat Jessica Abu Dhabi was sandwiched between Kaal and Danny. We knew where we were headed, but we had no idea how intense the journey would be.

Along the drive I joked with my dad that he was torturing with me with his coffee. I had been on the no-liquid or food diet from midnight on due to the surgery restrictions. I LOVE black coffee, thick as mud, just the way my dad makes it, and I was really wishing I could steal his cup. I could see that my mom was nervous, and there was definitely strained humor along the car ride as we tried to joke around. It was almost as if everyone was trying to pretend that we weren't headed to the UW, that maybe we were heading to the airport for a family vacation. I remember thinking that I was caught between two different worlds, excitement for my surgery because I was going to be awake while having doctors work on my exposed brain, and the other world of the unknown.

Once we arrived at the surgery pavilion at the UW, I checked in and we sat for a few moments before I was whisked away to surgery prep. When I changed into the hospital gown, and the assistant shaved the areas of my skull I got even more excited for the next leg of my journey. Next, they placed electrodes (don't know if "electrode" is the proper term, but I'm just going to use it anyway because I think you get my point) around my head and drew circles via marker around each one of them to mark the proper locations for the mapping (thanks for that! It took weeks to remove the permanent marker!). The computer calculates the location of the incision, but the electrodes are placed by hand. Below is a photo of me with the computer electrode thingies all over my head. My pre-op nurse Daisy, was pretty angry at the assistant for doing such a crappy job of shaving my head (you can see in the 2nd photo the shaved hair on my pillow). She basically kicked him out of our room because she knew (I was clueless) that I would have to be in the same gown for a few days and all that hair would itch like crazy. Gotta love nurses, they really take care of you! That's Daisy's hand cleaning me up in the top photo.

After a quick consultation with my anesthesiologist, my family quickly came back in to say goodbye I was headed out the door for surgery.

Once I was wheeled into the operating room, I remember saying hello to my smiling surgeons, and the technicians from my consultation from the previous week, and seeing about a dozen other faces that I didn't recognize, but they were all really kind. I remember feeling completely comfortable, despite the cool temperature. They gave me a run-through of what I should expect and before I knew it my mouth was covered with what looked like an oxygen mask and someone was counting down.

The next thing remember, I was laying on my right side on the operating table as I heard someone calling for me, "Jessica?" The anesthesiologist was right, once I woke up I didn't feel groggy at all. I was completely awake, and ready to go. I had been waiting for this moment, anticipating this portion of the surgery like a test. I was ready to do everything I could to aid the surgeons. To keep the mood light, we had some small talk and joked around a little bit and they told me that they were going to go through a sample of images on the computer screen and I was supposed to name the image (for example if it's an image of an apple, say "apple"), while they stimulated different locations in my brain.

As the image series was conducted, they were probing my gray matter to discriminate between healthy gray matter and tumor matter. Throughout the image series, as I was naming the images, every once in awhile my body would involuntarily jerk. I remember at one point, my torso spasmed, and I said to the surgeons, "Oops, guess I need THAT section!" They laughed, and said something along the lines of, "Don't worry, we'll keep that."

When they were done with my image series I said a variation of, "Thanks guys, that was really fun!" And I went back to sleep with the help of the anesthesiologist. For the remainder of the surgery while I was asleep, the surgeons weeded out the groups of tumor cells as best they could. It's impossible to remove the bad cells. In the size of the tip of a pin is a million cells. As you can imagine, it's impossible to differentiate between every single cell, or even small groupings of cells. Also, there is no visual difference between tumor cells and brain cells only a difference in density so they used an ultrasound machine to discriminate between the unhealthy and healthy sections. As one of the UW neurosurgeons explained to my family and me, the tumor cells in my brain are like a bucket that has had a handful of sand tossed into it. Although most of the sand is concentrated in one location, there's sand all throughout the water.

The next thing I remembered I was awake and a little hazy. I vaguely remember smiling at the surgeons as I was being wheeled out the door and I gave them two thumbs-up signs (which was later confirmed by the Chief Neurosurgeon when he spoke to my family and friends in the waiting room - it's almost too cheesy, right?! A double thumbs-up?? I've never been good at playing it cool. One thumbs-up sign would have sufficed). At that point I remember feeling exhausted, but at peace. Little did I know what was in store for the next 24 hours. I thought I had made it through the hard part, but the really frighting reality was my continued mental deterioration and the emergency surgery the next day. I had no idea it wasn't ALL just fun and games as I had been hoping.

My Own DNA is Fighting Me

Tomorrow is the fifth week since the second brain surgery. I'm growing exponentially. In fact, I can't believe how much I've grown. When I was in the ICU for the week during and after the surgeries, and I was starting to re-learn things I was trying to brush my teeth with the wrong end of the brush. I couldn't grip silverware, or if I could grip it, guaranteed it was the with the wrong end. I tried to read a sentence for the speech therapist and out of eleven sentences the only thing I could recognize was the word "orange." It was absolutely bizarre. I could recognize that the page was full of words, but I didn't understand what they meant. That was a shattering moment. I would lay in my bed in the hospital trying to read the posters on the wall. I would practice over and over trying to figure out what written, "University of Washington Hospital." I would try to sound out the letters, one by one.

I had been feeling depressed before I went out for our walk today and that's when Danny reminded me that I'm still pretty fresh out of the hospital. He reminded me that with my personality having to slow down, take naps, avoid work, limit stimulus, basically I feel like I'm being punished. I thrive off of multiple stimuli. I love a good challenge, and yet I can't hit this head-on in the same fashion that I normally would. I would probably just tackle my recovery like a job and bulldoze through it. Unfortunately, that is the absolute opposite technique that I'm supposed to use. I'm already feeling guilty about not being back at work, and that alone stresses me out! It's almost like my personality is attacking my body and hurting my progress. Just like it was explained to me by Dr Silbergeld, I have tumor cells in my brain that are attacking my brain. The tumor cells are created by my own DNA. So my own body is fighting me.

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.