On Our Way

**************WRITTEN 6/2/12*****************

Thank you for all of the cherry sales, and donations! Thank you Susea & Sandy for helping Dan and I find a room to stay in LA!! Thank you Big Wave Dave & Sally for letting us stay in your home!! Thank you Auntie Lynn for using your air miles for our flights!! We are completely taken care of, all we need to worry about is making the correct medical decision, and I know that very soon, we will have the information to do that.

At 4:55 pm today, Dan and I fly to California to get answers. Who knows what will happen. We will keep you posted.

Thank you for all of the support, both financially and emotionally. It's crazy to think about another brain surgery. I'm finally understanding that it's not just a brain surgery, it would be MY brain surgery. They would shave my head, put me under, saw open my skull, dig around in my tissue, screw the skull back together, staple my skin back together, and then wake me back up. It's pretty intense. And that's if they don't wake me up, it's a whole new ball game if it's another awake craniotomy. But, we don't need to worry about that quite yet. We still don't know if we're going to join into the trial. First things first we'll meet with Dr Linda Liau.

If you're in Friday Harbor for the Fourth of July, please go watch the parade for me. Best. Parade. Evah!! Seriously, it is the best in the nation.

If you're interested in reading an article about a different clinical trial given by Dr Liau, please scroll down.

Personalized vaccine doubles survival time in patients with deadly brain cancer

By Kim Irwin March 21, 2011

Dr. Linda Liau

A dendritic cell vaccine personalized for each individual based on the patient's own tumor may increase median survival time in those with a deadly form of brain cancer called glioblastoma, an early-phase study at UCLA's Jonsson Comprehensive Cancer Center has found.    

Published last week in the peer-reviewed journal Clinical Cancer Research, the study also identified a subset of patients more likely to respond to the vaccine — those with a subtype of glioblastoma known as mesenchymal, which accounts for about one-third of all cases. This is the first time in brain cancer research that a subset of patients more likely to respond to an immunotherapy has been identified, said the study's senior author, Dr. Linda Liau, a Jonsson Cancer Center researcher and a professor of neurosurgery.

The study found that the vaccine, administered after conventional surgery and radio-chemotherapy, was associated with a median survival of 31.4 months, double the 15 months of historical controls in the published literature. In all, 23 patients were enrolled in the Phase I study, which was launched in 2003. Of those, about one-third are still alive, some more than eight years after their diagnosis.

The study also found that the vaccine was safe and that side effects were minimal, limited mostly to flu-like symptoms and rashes near the vaccine injection site.

"This is quite an encouraging result, especially in an early-phase study like this," Liau said. "It's promising to see patients with this type of brain cancer experience such long survivals."

However, Liau cautioned that the findings need to be confirmed in larger, randomized studies. She currently is leading a Phase II, randomized study at UCLA testing the vaccine in newly diagnosed glioblastoma patients. The patients will receive either the standard of care (surgery, radiation and chemotherapy) or the standard of care plus the vaccine. The study is a multi-center trial, and UCLA is the only site in California.

How the vaccine works

The vaccine preparation is personalized for each individual. After the tumor is removed, Liau and her team extract the proteins, which provide the antigens for the vaccine to target. After radiation and chemotherapy, the white blood cells are taken from the patient and grown into dendritic cells, a type of white blood cell that is an antigen-presenting cell.

The vaccine preparation from this point takes about two weeks, as the dendritic cells are grown together with the patient's own tumor antigens. The tumor-pulsed dendritic cells are then injected back in to the body, prompting the T cells to go after the tumor proteins and fight the malignant cells.

"The body may have trouble fighting cancer because the immune system doesn't recognize it as a foreign invader," Liau said. "The dendritic cells activate the patient's T cells to attack the tumor, basically teaching the immune system to respond to the tumor."

The individualized vaccine is injected into the patient in three shots given every two weeks for a total of six weeks. Booster shots are given once every three months until the cancer recurs. Patients are scanned every two months to monitor for disease recurrence, Liau said.

Success with mesenchymal glioblastoma

It has recently been discovered that there are at least three subtypes of glioblastoma: proneural, proliferative and mesenchymal. During the course of her study, Liau and her colleagues saw that one group of patients seemed to be responding very well to the vaccine. The researchers examined their tumors using a microarray analysis of their DNA and found that those with a gene expression profile identifying their cancers as mesenchymal responded better to the vaccine.

The finding was surprising, Liau said, because patients with the mesenchymal subtype generally have more aggressive disease and shorter survival times than those with the other subtypes. In patients with this type of glioblastoma, several genes that modulate the immune system are dysregulated, meaning they don't work properly. Liau speculates that the vaccine helped replenish the immune system, allowing that subset of patients to more easily fight the brain cancer.

"Glioblastoma remains one of the diseases for which there is no curative therapy ... and the prognosis for patients with primary malignant brain tumors remains dismal," the study states. "Our results suggest that the mesenchymal gene expression profile may identify an immunogenic sub-group of glioblastoma that may be more responsive to immune-based therapies."

Eight years of survival

Brad Silver, 41, who grew up in Southern California and now lives in a Cleveland suburb, was diagnosed with glioblastoma in 2003 and was told that he had, at best, two months to live. He was stunned.

"I was 33 years old, and my wife was seven months pregnant with my son," said Silver, a college water polo instructor. "I didn't think I was going to live to see my son born, let alone grow up."

Silver sought a second opinion at UCLA, and the golf-ball sized tumor in his left lateral lobe was removed. He underwent radiation and chemotherapy and enrolled in the vaccine clinical trial. Today, eight years later, he remains cancer free. His son, named Brad Silver II, will celebrate his eighth birthday in April.

"If I had listened to that first doctor, I would not be here today. If not for Dr. Liau, I would not be here today," Silver said. "I'm 100 percent back to being me because of this vaccine and that clinical trial. It's almost unbelievable."

This study was funded in part by the National Institutes of Health, the Philip R. and Kenneth A. Jonsson Foundation, the Neidorf Family Foundation, STOP Cancer, the Ben & Catherine Ivy Foundation and Northwest Biotherapeutics Inc.

UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson Center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2010, the center was named among the top 10 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 10 of the last 11 years.

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

I'm Headed to UCLA!

Yesterday my medical files were sent to UCLA (at least the writen ones - the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau's office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I'm traveling from out of state, I asked for a later appointment, and was able to push it back 'til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven't been sleeping well anyway - I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, "Oh my god, I'm panicking. I'm not ready!!" The nice girl responded, "Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don't have to endure any extra expense or stress. But, just so you know this isn't a rush."

So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau's office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery.

The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?

I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.

The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.

If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.

Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.

It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.

Keeping The Door Open

I've been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I've had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others - most have clearly defined borders, mine is diffuse, it's infiltrated, it's intertwined with healthy brain tissue, it's messy, complicated, and dangerous. With a brain surgery, I could die - anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it?

Here's a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It's a pretty big deal.

This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we've conducted, there are several supplements that could also cure me, however it's exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I'm just getting started with the supplements, I'm taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they're time dependent. I constantly have to keep on my game, up on my schedule, and it's exhausting. If I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

Not Mutually Exclusive

Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.

Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.

At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.

It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.

I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.

This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.

I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.

Just A Chapter

Two days ago I couldn't stay awake for more than 4 hours at a time. If you think about it, it's kind of hilarious. I'm like a child sometimes. Yesterday I did high doses of curcumin, piperine and then followed it up with a sulforaphane drink. There's a picture below of the concoction in process. I wasn't able to finish it all, but I didn't throw up so that's progress! I took a big gulp again this morning, and almost lost it. I've saved the final gulp to finish later today or tomorrow morning. My stomach is in complete knots. The only thing I can handle right now is hot tea. I'm okay with that though. The whole point is to keep the drink down, so who cares if it makes me sick, as long as I don't barf. 

A few minutes ago, through the pouring rain, I jogged the lake. I needed a challenge. I've been so damn tired, and for a second, I started to feel a little better. Seizing the moment, I tossed on some running shoes and a hat, snagged Emma's leash, and took off around Green Lake. Oddly, my stomach loosened up as I ran. The rain was refreshing, and reminded me of how fortunate I am to be able to run again. I thought about the long journey after the brain surgeries. This brain tumor is just going to be a chapter in my life, not the whole story. 

Guest Blog

Here is my guest blog, posted on www.suvivorshippartners.com

What does it mean to advocate for yourself?

It means survival.  Unfortunately, in today’s medical maze, there aren’t many successful treatments for my type of cancer.  I’m fighting a malignant brain tumor, and the replication of those nasty cells progress faster than current healing science.

According to the traditional system, my treatment plan is supposed to go something like this: brain surgery, radiation, chemotherapy, another brain surgery, maybe another type of chemo, and then an agonizing death while my body and mind degenerate.  Sound like fun?  No.  Nope, the outlook is horrible.  Is that acceptable?  No!

If your doctor doesn’t have the means to help you survive, it is your duty to look toward other options.  You have to fight to survive, which is heartbreaking because those with these death sentences are exhausted and beat down already.

At first, I believed my doctor’s words and thought that there was nothing I could do.  My very prestigious neurosurgeon and accomplished radiation oncologists both said that I could eat whatever I want.  They said I should live my life however it makes me happy.  It sounded nice.  I was set to sustain on red licorice, peanut M&M’s, sourdough bread and glorious full bodied red wines.  Yum! But, something didn’t sit right.  It just didn’t make sense that my food choices didn’t matter.  I mean, wait a minute, I had heard that you are what you eat?  If food is fueling my body then it doesn’t make sense to load up on junk.

I realized that there was so much that I didn’t know, and I decided to figure out more about what causes cancer and what feeds it.  Then, here and there, I kept hearing stories of survivors of brain cancer.  There are only few, but I realized that those few have valuable keys to survival.  That became my new goal, copying survivors.

There is so much that you can do, including supplements, diet, exercise, meditation, clinical trials, etc.  When I came out of my brain surgeries (there were two consecutive) my doctors told my family and me that I have a 1% chance of surviving this cancer.  Scary!  At least it sounded scary, but once I started researching alternative treatments I realized that I can increase my survival by several or tens of percentages.

You can not be afraid to do hard work.  You can not give up (except for once in awhile when you really need some ice cream).  Each cancer is different.  Become an expert on your diagnosis, on the treatments, on the survivors, on the diet, on the mechanisms of cancer cell division, of how the cancer feeds itself, and what the cancer cells are comprised of.  I know it’s a lot and it takes an incredible amount of energy, but that’s what friends and family are for.  Don’t be afraid to delegate.  People want to help you, they want to see you survive.  Everyone loves the underdog!  Yes, you are going to be exhausted, and sometimes you won’t want to go on, but you have to.  You need to.  You must.  You can do it!

You must be your own advocate.  If a treatment doesn’t feel right, or if the risks outweigh the benefits, you don’t have to do it.  For example, my radiation oncologist has been trying to force me into doing radiation, even though he admits that it will not extend my life and that there are very serious short and long term effects.  You are a customer in the medical system.  Your surgeon, your oncologist, your radiation oncologist, each nurse, they all work for you.  I’m not recommending that you give off an attitude because that’s just unnecessary and rude. But keep that in mind while you are in appointments.  You deserve to be treated with kindness and respect.  This is your body, your life, and your survival.

If you want to survive, and I believe that we all have the ability to do so, advocate for yourself.  It’s the biggest challenge you will ever face.  Contrary to common belief, you’re not fighting the medical world, you’re fighting yourself.  Once you stop fighting against your sadness, or disappointment of your illness, you can dust yourself off and decide that you are your own best treatment.

About Jessica Oldwyn

On April 13th, 2010 at age 29, Jessica was diagnosed with a tennis ball sized brain tumor. The classification is an infiltrating/diffuse astrocytoma (a type of glioma) tumor. Within several days she underwent a partially awake craniotomy, with a second emergency brain surgery to follow. This is her life, living with a brain tumor. Visit her website atjessicaoldwyn.blogspot.com

View all posts by Jessica Oldwyn →

5th Percentile? Ouch.

Yesterday was so much fun! I got the chance to paint the nails of a 100 year old woman, Margaret. She grew up in Cashmere, then in Anacortes, and finished high school in North Bend. Margaret is such a sweetheart. I just adore her. I'll be painting her nails each week. I'll walk up and put the basket of goodies on the table, then I'll go to her apartment and get her. She manages all by herself (except for her rolling walker). Margaret prefers her nails to be tapered, which she mentioned seems to be out of style at the moment, but she considers herself to be old fashioned. She let me know that she always picks the same nail polish called, Mud Slide. It's a shade of light pink/mauve. She likes her nails to have a french tip which makes it a little tricky. I painted her nails, leaving the white area at the tip. I was concerned that her nails weren't looking as good as they should, but as Margaret laughingly confessed, "It doesn't really matter since I can't see that well anyway, dear." How cute is that!

After nails I head over to the memory center. This is a secure area. The residents have memory issues, and if they were to get out of their residential area, they wouldn't know how to get back home. You wouldn't know it working with them though. They are the happiest, most jovial group. I join in the circle group of sitter-cise. It's exercises from a sitting position. We throw balls back and fourth, and play with a parachute. It's a lot of fun. They loved my purple ruffled ballet flats, and gave me a round of applause when I finally on the third go-around, remembered all of their names. Wow. A round of applause!?! I haven't had that happen in I don't even know how long. What an ego boost!

I had to warn Danny that there's a gentleman, Marv, in the memory care that's going to give Danny a run for his money. He's absolutely adorable, and even though he remembered my name, I kept forgetting his. He just smiled and said, "It's okay honey, it's a hard name." But the thing is, it's not a hard name! I've been visualizing all of their faces and one by one memorizing their names. I'm determined to call them by their first names next week. It'll be interesting to see if they remember me. This is such great practice! Seriously.

The other day my mom asked me to get the full file from UW so that we can read everything they've documented about my case. I just finished reviewing a report from my speech therapist, and I'm not going to lie, it hurt to read. I think I'm done looking into my file for a bit. According to my speech therapist's notes, "Reading - Assessed reading speed on Nelson-Denny Reading test for both reading aloud and to herself, her scale score was 175 and reading aloud 171 (both at the 5th percentile for her education level)." Ouch!

Before my brain surgeries, I was a smart girl. I was an A/B student. Especially in English courses in high school and college, I was at the top tier of the class. How ironic that I now have difficulties in the exact areas where I used to excel. The 5th percentile? The speech therapist never said that to me, which is probably good. That would have broken my heart. Now, it's just sad. I'm improving little by little, which is great and I'm so grateful, but my deficits still shock me. I'll bet it shocks those around me as well. I can type pretty well on the blog. I'm good at articulating how I feel, or what's going on around me. At least I have that. I can and do read, but the comprehension is pretty poor. I still enjoy reading though. I don't think you have to retain stuff to enjoy it in the moment :)

Scabby Makes Crabby

I am about to completely throw up on myself. Apparently, during my shower The water hit my scab and it started peeling back. This has to be a joke, this scab, blood, fluids, all of this is my worst nightmare. I abhor gooey things (non-edible of course). I've just spent a good 45 minutes trying to cut back the lifted area (there goes my allotment of writing time), but it's impossible to do without scissors, nail clippers, and hydrogen peroxide which I do not have at the moment. I can't wait until this scab is gone. Luckily it's really looking like sooner than later. Gross.

Soon I won't have the tickle of tightness that comes with the scab. Just turning to look at my head in the mirror, I still can't believe that they chopped open my head a few times. This might take a while to really sink in.

Removing The Unknown

I'm still bald-ish with the gnarly scar carved across my head. The scab is slowly disappearing, and things are definitely looking up.

Ever since this debacle started, specifically when I shaved my head, I was faced with the option to leave my head exposed or to cover my head with a scarf, hat or the possibility of a wig. When I'm home, or with close friends I leave my head exposed, but for the longest time while I was in public I left my head covered.

I was covering my head, not for myself, but for those around me. I was trying to avoid the stares and the uncomfortable reality about my situation. I also didn't want small children to run in fear (although the only child that's actually seen my head was more concerned about my "owie" and wasn't afraid in the least).

I've noticed that people stare while I'm wearing hats or other covers. They can already tell that I don't have much hair, and eyes just naturally gravitate toward my head. They don't mean to stare, they're just curious. They probably don't even mean to keep staring. It has to be confusing that I still have my eyebrows and eyelashes, so they know that I'm not going through chemo, yet I don't have much hair and there's definitely something going on.

As I've been grappling with this head situation I've been increasingly comfortable exposing my head, and I'm starting to walk around in public without hats, or scarfs. Without a cover on my head, people know that what they see is what they get. They can see that I've had some sort of traumatic surgery on my head and then they move on. In my own (very unscientific) study I believe people are more comfortable with the truth than the unknown. They want to know what's going on under my hat, and by removing the secret I am effectively taking away the unknown.

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.

Little Leprechauns

I was just laying down for a nap, when it occurred to me that the pain around my head is from the fusing of nerve endings. At first, my whole left side of the head was numb (probably from the Oxycontin) and now it's slowly going back to normal. My left temple (where that jaw hinge is located) is tender to the touch and swollen, but the rest of my head is slowly gaining sensation. Hopefully my bite will come back to normal too. They had to sever some tendon on the left side of my jaw during surgery. It doesn't hurt, it's just a little inconvenient when I'm brushing my teeth and I have a harder time cleaning the roof and tongue because I can't get my toothbrush in there as easily. I'm now an open sandwich eater. I also have to act like a lady and cut things into bite sized pieces. No more jumbo burrito contests. Interesting that you'd have to unhinge the jaw, or that they would need to cut anything around my jaw. I wonder why they had to cut that area inside my head. I wish I had a video of my surgery. Huh.

I'm down to only two pills a day (a far cry from 42 pills a day), one at 8:00am and one at 8pm. It's only for preventing seizures. Yay! I'm still prescribed some heavy duty Tylenol but I try to avoid it as much as possible because I'm trying to clean out my system (my poor liver). I always thought wine would be my downfall, who would have thought it was going to be tumor cells. I honestly thought that my first ailment would be self inflicted. I thought I would have broken a bone, or maybe I'd get diagnosed with lung cancer from a couple of years of rebellion when I thought it was cool to smoke. I really never expected a tumor. All in all I've been a very healthy person. I'm a runner. I love vegetables. I take flax seed, fish oil, and spirulina. I was not expecting this. I guess you never do. At least I've done the best I can to always keep evolving. I continue to make healthier and healthier choices. I guess that's the best you can do.

Ugh. I'm exhausted. I was thinking about that fusing of nerve endings. I'll be laying in my bed sometimes and it will feel like pins and needles randomly on my head - not even close to the scar/scab. Sometimes I'll accidentally say out loud, "OUCH" - Danny looks at me like I'm crazy and then we laugh. It's almost like I've got little leprechauns driving the wheel in my head. I hate that saying, "This too shall pass" but I guess it's annoyingly true because that's all I can think about. This too shall pass.

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.

Hair Envy

Pantene shampoo commercials are taunting me. I'm seriously starting to get hair envy. I've had long hair my whole life, and I'm starting to realize that it will take several years to get back to my normal hair. Ouch. It's the little things that ground you back into reality. Oh well. Worse things have happened...literally.

I wonder how my hair will grow out with this massive scar. I'm I going to be able to comb-over my scar like Donald Trump? I basically have a center part due to the scar, but I'm more of a side part kind of girl. I'm not going to lie, I seriously worry about my hair. Foolish, yes, but I am a woman, and us women want to feel attractive.

Seriously. What the heck am I going to do with this scar? The good news is that my makeup covers my braille face. And it's getting a lot better. I guess I need to deal with one crisis at a time. 

Did I mention that my first brain surgery was an awake craniotomy? I keep dreaming about the part of the awake surgery, the conversations, what it looked like, the whole thing. I've got to tell THAT story. Now, for a nap.

Urgent Jess Update

The email I sent to friends and family after the results of my scan:

Friends & Family,

Just wanted to send a quick note to let you know that I've had some extremely unexpected news. After an insanely intense debilitating headache that occurred last Friday while snowshoeing with Danny (and a couple of re-occurring headaches on Saturday and Sunday), I scheduled an appointment to meet with my doctor yesterday morning (Monday).

I told her that I had such a bad headache that I couldn't walk or see for about 90 seconds, and that the left side of my head, and lower back of my head, felt like they had a lot of pressure, and continued to have a pretty bad aching sensation.

I pressured her to sneak me in for an MRI scan immediately, but there were some hoops regarding my insurance so we planned a CT for today.

This morning I went in for my CT scan, at which time they said that I would instead be receiving an MRI (at which point I thought, "ooooh, UPGRADE!!"). Once in the room for the MRI they told me that I would not only be having an MRI but also an injection to see my brain even better (at which point I thought, "Cool! Double upgrade!!!").

After the procedure the radiologist looked at me funny and asked when my followup exam was (and I told her Friday), she told me that they would have my results shortly. I only got halfway home on my drive before I had a call from my doctor who told me that she had been on the horn with the neurosurgeon Dr Higgens and that I have a massive brain tumor and an AVM. I asked her if I was going to die, and her response, "We hope not."

She wanted me to turn around and head back to the hospital because they were holding a position at the CT dept for an Angiogram as soon as I could get in. Of course, I then called Danny sobbing and told him I couldn't talk but that I had a brain tumor. Then, I had my parents come get me from my car - I couldn't drive because I was sobbing and shaking so badly.

I've since done the angiogram and I just took my first pill to take care of the brain swelling. 

I have an apt with the neurosurgeon tomorrow where he will go over my diagnosis and my options. It all depends on the AVM and the Tumor (I'm capitalizing because I fell like it deserves that kind of punctuation). The two issues are unrelated, but make it difficult for surgery. I have no idea what type of tumor it is. We have no idea what I'm actually dealing with.

Anyway, at this point all I know is that I have a large Tumor in my lateral parietal region and an AVM.

I will be in and out of the hospital in the following days, and it looks like the first brain surgery is scheduled for Thursday morning at 8:00 am.

In the meantime, I love you all - all of my friends and family, and if you pray or send positive energy, please do what you do and think of me because I'll feel all of your positive thoughts. I'm not sure how things will continue from here, and I probably won't be on the phone except for doctors or things of that nature - I've already been on the phone today with three different doctors, two radiologists, and multiple nurses regarding this issue. They are awesome, awesome people, and they're really moving this right along.

Sorry if this email is ridiculously long - but you all know that I'm absurdly long winded.

Please don't be offended if I don't get to your call/text/email - it's definitely not personal. All of my love to everyone - I have been so insanely fortunate in my life - and I can't wait to conquer this - and for the record, I am cashing in regarding this email...any grammatical error of any sort or any particular aspect of my writing that doesn't sound eloquent and mind blowingly witty, is because I have a brain tumor.

ALL MY LOVE
XOXOXO
Jess