Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.

Musical Awakening

A friend posted a comment on the blog with a link to this amazing video. It completely made my day. It's incredibly moving, and a wonderful treat that I can share with my friends who work in the memory center with me at the retirement home. Thank you for sharing this. It's adorable. Enjoy!

"Music imprints itself on the brain deeper than any other human experience," says renowned neurologist Oliver Sacks, who appears in the film. Pairing music with everyday tasks such as having a brief chat or taking medicine can help patients develop a rhythm they can use later to recall the memory of that conversation or medicine. But it's not just patterns and rhythms — music also taps into the brain's emotional centers. "Music evokes emotion, and emotion can bring with it memory... it brings back the feeling of life when nothing else can," says Sacks.

Posenjak Fund

CANCER SUCKS. I just found out that my childhood friend's husband was diagnosed with Acute Leukemia. Above is Allison, her husband Bryan, and their two boys. Apparently he fell while in the shower and his body couldn't heal properly. That lead to a check of his blood and bone marrow, leading to his diagnosis. He's currently undergoing two different types of chemotherapy at Virginia Mason in Seattle, and he's in a lot of pain. Today just happens to be one of their son's birthdays; what a rough time. Please send your prayers, and if you are so moved, please donate to their fund at Whidbey Island Bank or you could send a check to Islanders Bank, I'll give more information below. The family resides in Friday Harbor - both having grown up on the island. They're another island love story, something that's close to my heart. Man, cancer SUCKS. I hate this kind of stuff. All we can do, I guess, is support them with our love, and help out in any way that we can. I just hate cancer. I was taught to never say, "hate", but I don't care, I hate cancer.

Posenjak Fund
Whidbey Island Bank
535 Market Street, Suite A
Friday Harbor, WA 98250
360.370.5641

Posenjak Account
Islander's Bank
P.O. Box 909, 225 Blair Ave.
Friday Harbor, WA 98250-0909
360.378.2265

Success!

Team E&J conquered two laps around Green Lake without walking. Woop woop!! Hermie still didn't listen very well, he's very obstinate, but I don't like whiners so he might just push all the wrong buttons and regret it.

Goin' for "Stable"

In the picture below, you'll notice more of Larry's fresh garlic. It's delicious, but my breath is ATROCIOUS. Luckily it's just Emma and I today, and bad breath is her favorite.

This morning, I woke up rested. I had the chance to debrief with Meghan over the phone last night. We laughed, and I cried a little bit, told her my fears, and if I heard correctly, I think she might have dropped a tear or two as well.

All in all, I feel like this is going to work; the low doses make me feel so good. Also, this protocol is great - absolutely doable. I enjoy having my last meal at 4:30 pm, then cleansing my body with only water until pill time at 8:30 pm. It takes a serious amount of discipline, but I enjoy the challenge. Oddly, it makes me feel strong. I like routine, things that I can count on. I like knowing that antioxidants are for breakfast and lunch, that every day is the same. There's no guessing, no worries, just the basics, every single day.

I'm scared to see growth, albeit minimal. I worry that somehow I won't beat this. I fear that I will continuously decline, and that this tumor will invade and take over my brain until I am no longer functioning. Those are my fears. And, if I look at the majority of cases, it's exactly what happens. BUT, I have stopped Herman's growth before, so I know that I can do this. I know that it can happen. AND, we did shrink the other areas of tumor. SO, who knows. We just have to stop Herman's growth. I'm happy - not thrilled, like I probably should be - that the other areas are smaller, but as long as Herman is growing, he's a major threat and that rains on my parade.

Herman needs to be taken seriously; he's a formidable adversary. So, here we go again, another three month period to conquer this challenge. Herman feels angry, like I've been trying to keep him down, and he's pissed. I just have to keep the low doses of artemisinin coming each night, tucking little Hermie to bed with my own version of a bedtime story.

It's weird to live like this. To be a functioning young-ish adult living with cancer. My life would not be as easy if I would have followed standard of care and done radiation, so I can be grateful for that. I can't imagine all the effects I would be dealing with. Yuck. At the doctor appointment, my mom asked when they would stop pushing for radiation, and the response was: I need to get two more MRIs with minimal growth to be considered "stable." At that point, hypothetically, I would have an entire year of minimal growth which would put the radiation discussion off the table. They would continue to monitor but not push for radiation. So there you go, that's our next goal. We not only want to stop growth, and have it shrink, we want the doctors to stop pushing radiation.

But, I'm getting ahead of myself. For now, I just need to go run green lake. My goal today is to jog two laps at once (without stopping), that adds up to be approximately 6 miles. I have never accomplished that feat before, but I need to challenge myself. Hermie and I need to have a run and a long talk. It's going to be wet, but I think Herms has pretty good hearing and can decipher my words through the wind and rain drops. He's already getting pouty. He knows he's in trouble.

Eating Away at My Core

My adorable little nephew

Well, I tried the higher doses of artemisinin, and it appears as if my body didn't prefer it. According to research, there's quite an individual variability of effectiveness. So, last night I started back on the low doses of Artemix. I'm back to doing the same protocol from Oct - Jan. I'm back in contact with the lead researcher at the UW who knows all there is to know about the artemisinin derivatives. He's originally from India where he was a medical doctor, but he moved to the states and earned a PhD, and he now researches artemisinin. He is the most kind doctor and researcher, possibly in the world. I emailed him and discussed what happened with this latest protocol and he expanded on the reasons why the low doses work so well. There's a 24 hour cycle where you eat antioxidants in the morning and at lunch, then refrain and stop eating in the early evening. You then take the artemisinin four hours after dinner with a cup of whole milk. Then you start back over in the morning with antioxidants. By utilizing the 24 hour cycle, you keep your body healthy and it cleans up any residual damaged cells, then when you take artemisinin on an empty stomach, the body creates more free radicals which allow the artemisinin to attack the cancer cells. The artemisinin works its' magic while you sleep and when you wake up, it's time to clean up all of the mess. I'm excited to be back on the low doses, it's so much easier.

It's crazy, but I never liked the high doses. It made my innards hurt. I'm disappointed that Herman grew, but I'm not surprised. I had been noticing some mental deficits, nothing too serious, but things were different up there. I didn't want to jump to conclusions because there's just no point in freaking out, but when I saw the further infiltration of Herm on the MRI, it all made sense. The growth is in my speech and language area, and although I feel like I'm progressively better at expressing myself with the written word, the deficits are when I'm speaking aloud, or processing speech. Tricky stuff. I still don't think anyone else would notice, but I notice and that's creepy enough.

The past twenty-four hours have been pretty tough. My family all returned to Friday Harbor and Wenatchee, and that's when the whole thing hit home. Here we go again, another three months of trying to stop the growth of Herman and hopefully, someday, actually see him shrink. Yesterday, as I was laying in bed trying to nap, I wondered if I was going to be able to keep up the fight. This is exhausting. Sometimes I feel like giving up. I know that I won't, but it's so tough. Luckily, my friends Meghan and Nicole invited me to run the lake. If not for that, I probably would have just laid in bed. I just need to keep one foot in front of the other, and do what I can. At least today I get to visit my friends at the retirement home, they always make me feel better and it's a great excuse to get up and out of the house.

It's so foreign to have a blob growing in my brain. And to feel it, recognizing that it's there and it's eating into who I am, deep in my core, my thoughts and processing, it's absolutely fascinating, and horrible, and terrifying.

Ahead of Ourselves

Yesterday, my adorable little niece and I created our morning green drink. We added a banana, and then stuffed the blender with handfuls of kale. Then, poured some water in the base and Isla flipped the switch. We watched the drink swirl, and as it chopped, I pulled orange flavored fish oil out of the fridge. I love young children because they don't have any preconceived notions. She never said, "Gross! Fish oil?" like an older child might have. I unscrewed the top, sniffed it, and said, "Yummy! Smells like fresh oranges." I passed the glass over to Isla, and she agreed. When the drink was finished blending, we poured it into a large pint glass, adding two tablespoons of the fish oil. We stirred it together and tried a taste. Isla loved it, so I poured a glass just for her. If you look closely in the photo above, you can see the green goo on the sides of her mouth.

It's always fun hanging out with Isla. She's adorable, and hilarious, always willing to try new things. I'm incredibly disappointed that Hermie grew. The day before the MRI, Danny looked at me, smiling, and asked, "If the MRI is good, how many good MRIs will it take before we can make a baby?" Obviously, we were getting ahead of ourselves. That's hard to swallow.

Also, I should clarify from the previous post that my doctor does not agree that the tumor areas are less dense - that is just our opinion.

Chubby Hermie

Other than the growth of Hermie, the meeting went relatively well. The oncologist listened to our protocol, but as he was nodding, we realized that our protocol doesn't matter. I could have inserted the name of any treatment and he wouldn't have cared. He had already looked at my scans and determined that little Herman had grown. He didn't care about the three other areas which had visibly shrunk. We are incredibly bummed that Herm grew, but the tumor cells are less densely populated, and we're looking into two new institutions for further review. We're also going to contact the researcher who tackles artemisinin to see if he will comment on the scans. We're hoping that he will expand on the typical growth patterns of tumors treated with artemisinin. In reviewing the subject, my family and I recall the possibility of the tumor expanding before it gets smaller. Here's a couple of photos for your review. 

Oct 2011 - Jan 2012 - April 2012

After the MRI, but before the meeting with my oncologist, I went to the records department and had a tech burn a disk of my MRI. We brought all of my previous disks from all of my other MRI's and we reviewed them on my father's laptop so that we wouldn't be blindsided during the appointment. It also makes it easier to figure out any questions we might have. The doctor has no idea that we did that. He never knew that we had already reviewed the scan. I don't think it matters though - he doesn't have to know EVERYTHING.

April 2011 - Oct 2011 - Jan 2012 - April 2012

After the appointment, we mailed off a copy of the scan to our friends who have already beat their cancer, then we headed to my parent's hotel. We pulled up all of the scans, and analyzed to our heart's content. We looked at them with the lights on, with the lights off, from a side angle, from above and below. We zoomed in and we zoomed out. It's important to really go through this stuff with a fine toothed comb. Our oncologist is very busy, he doesn't have the time (only 30 minutes) to review everything, so recently we started conducting our own reviews at home.

My oncologist is not impressed with my protocol, he feels that I still need to start doing radiation. He said that the growth was minimal, but it is still growth. He doesn't care that in the past six months there has been barely any growth, he's concerned about the past year of scans. I understand what he says, but at the same time, all we care about is the past six months - that's the time frame of the artemisinin. I told my oncologist that I'm not ready to give up, that I'm going to do three more months of artemisinin.

Today was exhausting and I need to go relax. We just got home and I need to put my feet up. It's a bummer that Hermie grew, but at least his friends are shrinking. All in all, at least Herms isn't growing exponentially. It could be a lot worse, and I'm grateful. I'm sad that he grew, but I know that this isn't over!

Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don't need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption.

I'm anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can't help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There's no point in stressing about the results, and yet, it's impossible to avoid it.

In my semi-stressed state, I've been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor's position in patient care. It has prompted me to reorganize my appointment. Let me expand.

I've decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we've attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we've always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we've been doing, starting from the beginning.

We will explain that we've been doing a researched based protocol. I'm going to tell him that the research has been conducted in the Bioengineering Department right here at the University of Washington. I will tell him that we're in contact with the researchers, and that we have a friend who has already eradicated her tumor with a combination of said treatment. This friend had the same exact type of brain tumor as mine, a stage 2 infiltrated/diffuse astrocytoma, even down to the lack of co-deletion of p19-1q (he will recognize the importance of that statement).

I'm going to tell my oncologist that this protocol is not invasive, it's cheap, and relatively speaking, it is without side effects. I'm going to tell the doctor that I need an oncologist that's willing to follow my situation, and understand that I am a unique case. I want someone who is on board, and excited about the progress and fortitude with which I'm going to fight this. I'm going to feel out this oncologist and see if he truly wants to see me cured with any type of treatment, or if he is more interested in western medicine's standard of care. My case is definitely out of the box, and I'm going to tell him that I'm looking for a teammate. By having this honest and open dialog, I think I will find out whether or not I will keep him on my team. It's all about how he responds to this discussion.

I'm excited and nervous to have this talk. I think it's about time I gave transparency to my doctors, but I also understand that it could go horribly wrong. It's a risk that I'm willing to take, though, it has to happen so that I can get the best care. They need to know what they're dealing with, and I need to give them the opportunity to truly help.

After Danny and I discuss my situation with my oncologist, we're going to call in my parents so that we can all review the MRI results. I feel like the first half of the meeting needs to be intimate, and private, so that the oncologist isn't overwhelmed by all of our faces, expressions, questions, etc. I want to look in my doctor's eyes and have his full attention. I am going to lay it all out on the table, and analyze his reactions. This could be an epic success or a tragic failure. Either way, in life, I'm reminded, you can't be afraid of the answers because it's the only way to move forward.

Prevailing

We have a beautiful courtyard just outside our front door. Danny and I have shared games of scrabble, cocktails in the dark with our neighbors, and on Saturday afternoon, in such a happy place, I stretched out with my new book, The Anatomy of Hope: How People Prevail in the Face of Illness. It's a perfect find, just as I'm nearing my Thursday morning MRI. Here are a few of my favorite quotes from the book:

      "It was my right to choose what I did. Even if I didn't prevail - and I didn't expect to - it was my only chance. I deeply wanted to live, so I had to fight. Then I could tell myself that I had tried, that I had done everything possible. There would be no regrets." 
      His was a libertarian mind-set, one that placed the individual squarely as the ultimate arbiter of his fate. It represented a certain form of hope - the hope to be strong enough not to yield, to have the determination and the fortitude to fight.

Another favorite....

      When we feel pain from our physical debility, that pain amplifies our sense of hopelessness; the less hopeful we feel, the fewer endorphins and enkephalins and the more CCK (important regulation factor in response to anticipatory stress) we release. The more pain we experience due to these neurochemicals, the less able we are to feel hope. 
      To break that cycle is key. It can be broken by the first spark of hope: Hope sets off a chain reaction. Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain.

One more, which happens to be my personal favorite. I wish my oncologist and his team would read this...

      We will likely discover genes that contribute to the very complex feeling we know as hope, but the circuits in the brain that stem from this feeling are not static. Rather, events in our lives modify them, and I would posit that the words spoken and the gestures made by physicians and surgeons and nurses and social workers and psychologist and psychiatrists, and family and friends, influence the synaptic connections. No one should underestimate the complexity of factors that coalesce in this biological process.

In order to succeed in healing myself, I have created an ever changing bag of tricks. Sometimes it's a walk along the lake, or a jog with a friend. Other times it's trying a new healthy dinner recipe, or a vegetable smoothie, or perhaps a micronutrient dense juice. Inspiring books, or personal stories, have also been a wonderful catalyst, changing my whole mindset and energizing me to continue the fight. It's important to find the things that inspire you; it's imperative even, to not only survive, but to thrive.

Beautiful Reciprocation

Thursday was an adventure. I hopped on a bus, then a second bus, and arrived at the Ballard library to take advantage of the free tax help. Free tax help? How wonderful is that! When it came to my turn, I pulled up my chair to speak with Judy. She appeared to be in her sixties, and I noticed that the hair around her ears was white and wispy, yet on the top it was carrot orange. She was very helpful, but at first, she didn't want to review my receipts for an itemized deduction. She scoffed and said, "Since you're married, there's no way you can beat the standard deduction of $11,400." My face flushed, and I said, "Actually, I have cancer and quite a bit of medical bills." Instantly her entire demeanor changed, and I realized her orange hair was a wig. She turned to me, with a half smile, and said, "I'm just about to go through my third round of chemo, the coming round is just for insurance - I'm beating it. My sister, who was Harvard educated died of breast cancer at age 34, along with my aunt, and I knew odds were good so I wasn't exactly surprised."

Here we were working on my taxes, complete strangers, discussing intimate details of her life. She seemed lonesome, brimming with pent up emotion like a bathtub overflowing with water. Judy talked, and talked, and I listened. I understand how much I've needed a good listener at times. We never discussed my cancer, or my situation, only my financials. It was refreshing. And, in the end, I felt like I was able to give her something valuable in return for her help. It was a beautiful reciprocation, and I was grateful that life had brought us together.

Breakfast Drink
12 Carrots
2 Inches of peeled ginger
2 Inches of the entire diameter of a green cabbage

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?

Juggling Act

I am so incredibly frustrated. This happens lately with each reoccurring MRI, they juggle me around, calling the week prior to change things. They change up my appointments, cancel on me, or switch me to see nurses instead of my doctors, and it's incredibly frustrating! They don't even ask! We schedule my MRIs three months in advance. My parents take time off of work, travel to Seattle to be with me, and Danny takes time off of work.

This time, at the last minute (I still consider a week to be last minute in these trying times), they called to tell me that my neuro-oncologist is no longer going to make my appointment, and that I will be meeting with his "very knowledgeable nurse." I believe there are nurses that know much more than doctors, but in the past, my experience has not been good. Each MRI appointment that was held with a nurse instead of the oncologist has been riddled with bad information. I'm sick of meeting with a nurse, then having to come back to meet with the doctor to get my questions answered. I'm done paying for multiple appointments. It's unnecessary. I only want to talk to my oncologist. If I can't meet with my oncologist, I might as well just get the MRI and review it myself. The nurses always have to refer to the doctor to get my questions answered anyway, as they are very technical - or if you recall during the last MRI review, the nurse said my brain tumor was growing significantly when it actually remained the same exact size (10 x 16 x 9). I'm done with the roller coaster of misinformation. I realize that there will be errors, that medical professions are human, but I'm not going to pay hundreds of dollars to someone who may or may not know what they're talking about.

As a patient, I am a customer. I have hired my doctor to provide a service, which is to review my MRI with me and answer any questions I might have. It is irresponsible to cancel a meeting, and contract out the job to a less qualified (although surely nice) person. This cancer patient seems to get pushed around by her doctors. I hope that I'm the only one. It's overwhelmingly frustrating, right in a time when I least need more stress.

I left a message for the nurse who cancelled the appointment with my neuro-oncologist (she did it over a voicemail no less), letting her know that, "Yes, actually, I do have a problem meeting with the nurse practitioner, it's not personal, but I've hired the doctor to meet with me and review my MRI. My family is traveling from out of town, they've reserved hotels since I can't accommodate everyone. My husband has asked for time off, and in this economy, that's risky. We anticipate these appointments and take them very seriously; this brain tumor is our whole life, everything revolves around these appointments. I realize that the doctor has different priorities, but this cancer is incredibly overwhelming and I wish we would be shown a little more respect. We are willing to meet with the doctor any time throughout the day, surely there's a few moments when he can squeeze us in and honor our appointment."

If my new (yep, he's my new guy - I've only met with him once) neuro-oncologist is too booked up to meet with me, they shouldn't have allowed him to take me on as a new patient. I realize that I'm probably annoying since I'm very hands on, and that I always come with all sorts of questions, but I take my health very seriously. I mean, think about it, I've been told that this cancer is going to kill me, that I should not have children - I'm basically in a holding pattern, waiting for the next shoe to drop. I am astounded that this is how they treat someone who is fighting for their life. Although I do a lot of research about my cancer, my options, clinical trials, western, complementary and alternative treatments, etc., I also want to tap into the brain of my neuro-oncologist to answer my questions. I have a few non-negotiables: I will not over pay, or get double billed anymore (like an appointment with the nurse just to have to make another appointment with the doctor to get my questions answered), and I will not be pushed around with appointments. If they can't meet with me then I will need to find a new doctor (of course I won't tell THEM that - who knows if they'd even care).

I was so worked up just now that I had to walk into the kitchen and try a new recipe. It's was forwarded to me from a friend, and although I've tweaked it, it still has the same bones.

Turmeric Tea
1/2 Teaspoon ground turmeric (curcumin)
1/2 Lime (squeezed)
*Add agave, or stevia if you'd like
*Add milk if you'd like

If you don't appreciate Indian food, you may not enjoy this tea, but man, I swear it is scrumptious. I'm a tea fanatic, I actually have a whole drawer full of various teas, and I'm always excited to try new stuff. This drink is special since turmeric is known to kill cancer cells. It's pretty hard to ingest enough to actually kill cancer, but if you start sticking the root or the powder in everything, it sure makes it more likely! I also took two BioPerine pills (black pepper extract). Black pepper aids in the absorption of turmeric. Some people add milk to the tea, but I don't think it needs it. Another note, you'll want to continuously stir it, as the powder settles.

Sorry, for complaining throughout this entire post. I'm frustrated that I get so worked up about this stuff. I wish I didn't care, that I wouldn't have so many questions, that I didn't need to be integrally involved in my care. I wish I could just do whatever the doctors say, and be satisfied. It certainly would be much easier. The thing is, I just absolutely can not do it. I always need it to add up, I need reasons, and I need individualized care. Each cancer fighter is dealing with a unique situation. Patients react differently to mirrored treatments. Each tumor even in the same category is different. They grow differently, the characteristics may be similar, but they manifest in their own way. It is ingrained into my being that I will not survive if I am pooped through the medical system on a one-size-fits-all conveyor belt.

I believe that someday I won't need to take these MRIs so seriously. Someday my MRIs will be an afterthought, or non-existent. Unfortunately, in the meantime, I'm probably going to continue to be the friendly, yet annoying, cancer patient.

Reproductively Cancered

Dusk at Alki Beach

Over the weekend Danny and I got the chance to bid our life away at the Bids For Kids auction benefiting uncompensated care at Seattle Children's Hospital. Pair me, a current cancer fighter with some vino, and I was ready to give everything in our possession to help the sick children. The cause truly struck close to home. At one point in the evening, while I listened to a mother tell her story of how Children's helped her young child, Danny was wiping tears from my face. I would give anything to heal all of the children, and in the same moment I would give anything to be healthy and be able to have a child, be it healthy or not. It's an interesting concept, would you rather have a sick child, or no child? I guess it's not fair for me to say that I would rather have a sick child than none at all, because I don't know what it all entails. I have friends with children that have serious medical problems, which makes me realize that there's no way I could ever comprehend the stress and heartache involved, but I also see the happiness that their children bring them, and how fulfilling their lives are.

It's wonderful supporting those in need, in fact it's almost selfish. There's a pure joy that engulfs you when you help others out. I've heard the argument that there's no such thing as altruism, and you know what, I'd have to say I agree. There's some sort of endorphin rush when you help someone, or do something kind. When you give to others, be it financially, physically, emotionally, etc., you definitely get something out if it. So many people help support me, and it's my goal to continue the spirit. When people show me love and support, it makes me want to magnify that love and spread it around. I'm a total cheeseball and love the movie, Pay It Forward. I feel like the best way I can repay everything that I'm given, is to continue the kindness to those I encounter. It's tricky though, it's an ongoing battle, you have to train yourself to look for situations where you can help others. It obviously doesn't have to be with money, it's as simple as a smile to a stranger as your paths cross, or it could be as big as donating an old used car to a person in need (friends of ours recently did that - very cool). 

The auction was a lot of fun, but it was also emotional. It made me realize how badly I want to have a tiny little baby Danny. I'm not in a position to think about having a baby, and may never (I have to be honest with myself) and it scares me to think that I might never get the chance to experience our own little ones. I will be ecstatic if I get to spend the rest of my life with Dan. He is all that I need, and I am incredibly grateful to have him. But....man....have you seen Danny? Have you ever watched his adorable little mannerisms? A mini Dan would just melt my heart. Of course, it DID occur to me that if I ever do get to birth a little baby Danny, my heart might spontaneously explode. The thought alone puffs my heart to double the size, my blood pressure increases, my face gets hot and I get giddy. It's pretty ridiculous. For now, I need to focus on the here and now. I have everything in the world to be happy about, a wonderful life, and it's always important to remember that we never know what's coming around the corner. 

You can't help but wonder about things in life like finding your true love, of planning a wedding (another thing that Dan and I want to do someday), or starting a family. They're all fun things to think about! There's no harm in dreaming, but you can never let it go too far. The dreams shouldn't become a burden of sadness, I think that's when they have a horrible impact on your life which can be paralyzing. There are things that I can change, and other things that I can not. Some things can change, but it takes time. I believe that someday we will be able to fulfill our dreams. In the meantime, my overactive imagination will recreate visions of a hilariously adorable baby Danny with his big old baby muscles, and we will continue on our journey, filling our life with laughter and love. All in all, it's a magnificent option. 

Easter Weekend

Meghan sent me a photo of her fridge yesterday :) Looks organized! It doesn't look that different from mine. There's something fun about looking at someone else's fridge. I know when I go to my parent's house, it's the first place I explore.

I just made a delicious breakfast drink. Here's the recipe:

4 Large Stalks Of Rainbow Chard (stem and all)
1 Granny Smith Apple
1 Whole Lime
4 Carrots
4 Stalks of Celery

That was very refreshing. I've read that for the best effect, always drink your juices on an empty stomach. Then, for an hour after drinking your juice, you should only drink water, or tea.

Hope you're all having a wonderful Easter weekend!

More Micronutrients

Thank you so much for the beet advice! I just made a new juice, a different recipe, and peeling the beet fixed the problem! No grit. So far I'm on my second glass and I don't have any of the dirt. What a relief! Woo hoo!! I'm totally getting nuts with the juicing. Yesterday I made three different batches each as a new recipe. Since I was on the high doses of artemisinin three days out of every week and I wasn't supposed to eat antioxidants, these juices and my blended drinks are H.E.A.V.E.N. to my body.

This recipe is amazing. I'm being good and following recipes since I have such a horrible track record. I figure I'll play around and learn all of the suggested pairings, then when I really get the hang of this I will be able to figure out fun variations of my own. Below is the recipe from today.

Beet Detoxifier
1 Peeled Beet (Include greens & stalks)
4 Stalks Celery
4 Carrots
1 Inch Ginger
1 Lime
1 Green Apple

For breakfast I created a new smoothie, and it was delicious!

Breakfast Smoothie
1 Small Head of Napa Cabbage
1 Large Banana
1 Tablespoon of Orange Flavored Fish Oil

Don't confuse the smoothies with juices. The smoothies you end up eating the entire piece of produce, unlike the juice where the pulp and fiber are removed. I like to vary between the two options. It's important for me to get a lot of the cabbage, kale, watercress, etc. But, at the same time, it's really hard to ingest a whole blender of liquid. That's why it's nice to have a micronutrient dense juice too. I've read that the juicing allows your body to absorb all of the enzymes quickly since the fiber is hard for the body to digest. Removing the fiber speeds up the absorption.

This juicing kick is such a great distraction. It's perfect timing in fact. I have less than two weeks before my MRI and I'm nervous as hell. We stopped the growth of Hermie from October to January, but now I've been on a whole new protocol. Instead of doing the trio of sweet wormwood compounds, I've mainly been taking the artemether which is the fella that crosses the blood brain barrier. We have a friend who used this protocol and cleared up her brain tumor (same type as mine), but it's still scary when you try new things. I'm mostly scared because I didn't eat as strictly as I did for the previous MRI period. It's hard not to overanalyze, and that's why I need distractions.

This morning, I woke and met up with my friend Jessaca and her baby girl. We walked over to Green Lake, and wandered to the playground. It was wonderful to see them! I miss my Wenatchee girls. After that I took a nap until 2:30 pm. I sleep a lot, but while I'm up, I need things to do to keep my mind sane. My life consists of sleeping, juicing, blending, laundry, running, showering, etc. Just the basics - but I like it that way. If I do too much I get run down, and then I get sick. I've come to the point where I'm pretty clear where my energy boundaries are, even though sometimes I still push it and wear my body out. It's always worth it though :)

Last night Meghan and I ran Green Lake, then swung into my house so that I could make her my favorite green apple, carrot, and ginger juice. She was pretty impressed, and laughed hysterically, when she saw our fridge. To be honest, it's been a long time since I've seen anyone else's fridge, so I didn't really know what the big deal was. She grabbed my phone though, to take a picture. I wish I could see what other people's fridges look like. There must be some delicious looking food or something? I still like whole real food, like normal meals, but I really enjoy cleansing my body with veggies and fruit. My body feels so much better. Especially the green drinks. Tonight, Danny has class so I'm on my own for dinner. I think I'll tackle a new green juice. I'm excited about it! In the meantime, I still haven't ran the lake yet today so I'd better get to it. I'm not going to lie, it's beautiful out and I wish I was sitting at Duke's on the patio with a large Hefeweizen and a side of their delicious cabbage salad, but oh well. Maybe later in the week.....who knows.

Bad Beet Grit

Help. I can't seem to clean my beets properly. The juice was delicious, but the grit was disgusting. I still managed to drink the whole pitcher - I just pretended I was camping. The flavor was wonderful, truly.

Beet Juice

2 Large Beets (greens, stems, roots, everything)

7 Carrots

1 Granny Smith Apple

1 Inch of Fresh Ginger

Any suggestions on how to clean the beets? I noticed that even the leaves are littered with dirt. The beets really add a wonderful flavor to the juice, and beets are known to increase the body's production of glutathione levels which help fight cancer, especially tumors, so I can't just omit the red buggers. Somehow, the body uses glutathione as a master detoxifier, and the body uses it in the cleansing of each and every cell in the body. Research shows that cancer patients are massively deficient in glutathione. There are supplements to help boost your body's levels, but the problem is that glutathione is synthasized in the body by combining three specific amino acids. Therefore, supplements don't really work. You need to use food as your supplements to truly be effective. I think that's why all of the medicine, and supplements, in the world don't seem to make you healthy if you have a poor diet. It's fine to eat bad food every once in a while, but we need to nourish our bodies daily so that we have the building blocks to fight cancers, disease, fatigue, etc. 

So.....although the beet juice was a success (minus the grit), last night's dinner drink was pretty rough. I followed a recipe called, "Immune Builder." I've been nervous about Dan since he's been doing night work. He leaves for work at about 10:15 pm, arriving home in the morning at 8:00 am. They're doing taxing work, ripping out old escalators at the airport. He loves his job, but I worry about the irregular hours, and his exhaustion. As we speak (...or as I write...), Danny is curled up in bed with the curtains drawn. He'll remain there until late afternoon or hopefully into early evening. I have my little MP3 player on, quietly blogging, and running laundry in the basement. Anyway, I digress, my point is that I thought I'd find a good juice to boost our immune systems. Obviously, I'm always in need of some extra help, and although Dan seems to conquer any bug that swims into his airstream, I figured it couldn't hurt. 

Immune Builder (you'd better like garlic - Larry, this one's for you!) - serves 2

8 Carrots

4 Garlic Cloves

4 Stalks of Celery 

1 English Cucumber

1 Granny Smith Apple

The immune builder is definitely a breath buster, but least we were stinky together. In the future, I think I'll keep the garlic in our foods, not in the beverages. It's too confusing. I wanted to chew it. If anyone has any specific juicing suggestions, I'd love to try them out!

Jess is Juicing Again

Uh oh. If you remember a year or so ago, my mom surprised me with a juicer. I continued to create the most nasty concoctions, liquid evil, that would make even the most open minded health food fanatic cringe and scold me. In this new phase, I've decided to follow recipes, and you know what, those little juice chefs really know what they're doing! My first juice was DELICIOUS. I am addicted to a place called Thrive in Seattle. It's a raw vegan establishment, serving my favorite juices, including spicy shots of various greens. I used to favor a different type of liquid lunch (and still do from time to time), but now I've become a complete juice head.

It's interesting, I've never liked juice. Boxed, canned, or bottled juices are all so gross, they're too sweet, and I feel like they're not even good for you - there's too much sugar and yuck, don't even think about the preservatives. I used to laugh, and tease my girlfriends in college, "I don't drink juice unless there's champagne in it." Now, I've created a juice so delicious that it tastes better than a mimosa! I swear. If you don't have a juicer, and you live near, I'll make it for you and I promise it'll open your eyes.

My hijacked recipe.....
Better Than A Mimosa (serves two)
10 Carrots
1 Granny Smith Apple
1 Inch of Ginger

I'm excited to play around with my other ingredients. Juicing is so much fun! Dan doesn't seem to be quite as excited. He's more of a meat and potato kind of fella. He's a great sport, always allowing me to shove all sorts of concoctions and recipes down his throat, never complaining, but I know he needs more substance. I'll let you know how things turn out with the other juices. I think I'm going to make a dinner drink too...poor Danny.

Also, on another note. I was thinking about it last night, as I was trying to fall asleep, I'm sorry if I'm annoying. Sometimes I wonder if I sound too cheesy. Or I wonder if it sounds like I'm bragging about how wonderful my life is. My only hope, if that's how I sound, is that you feel the same way about your life. I've gone through a real gamut (engagement, calling off a wedding, marriage, divorce, getting fat, losing weight, etc), and I probably sound completely nuts, but this is the best part of my life so far. Undeniably, I am incredibly fortunate to have such a wonderful husband, kind family, overflowing network of fabulous friends, and those things along with my happy disposition (which has not always been the case) have catapulted me into a position where I believe I have the best life I could possibly imagine. Life is perfect, elephant in the room not included. Life is quite complicated, but the things that truly make me happy are very simple. It's been a great lesson for me to learn.

Turtles Are Back!

As you can see in the photo attached, my favorite neighbors, the Green Lake turtles, are back. There's a specific log where they love to sunbathe. Each time I run the lake, I always look for signs of my green buddies. It's been months and months since they've shown their adorable faces. What a great omen! I've heard before that turtles symbolize longevity.

As Dan and I jogged the lake in the beautiful sunshine, we laughed and watched everyone stop, and pull out their phones to take photos of the turtles. We hugged and reminded ourselves how lucky we are. Life is truly good! Even though we can't help but be nervous about the MRI, we still recognize how healthy I am and what a wonderful life we live.

I remind myself, often, that this stage in my life is definitely going to be the easiest. My only problem in life is brain cancer. Someday I'll have the stress of working, parenting, and everything that comes with adulthood. For now, I just need to be healthy, find happiness in things around me, enjoy laughter with loved ones, and breathe deeply, inhaling the beauty of life. It's all so simple. Someday, soon hopefully, life won't be all about me and my needs and my survival. I can't wait to worry about the pitter-patter of little feet, or a career. That will be fun!

Pure Exhaustion

Good morning...eer, afternoon. I just woke up from my second nap of the day. I feel like I'm sleeping my life away. I'm just so exhausted all the time. Somehow, I feel like I've been sleeping for the past two weeks. Yesterday, Dan and I forced ourselves to jog Green Lake, then I went in for a shower and a nap. I'm recovering nicely from the over dosing of artemisinin, my only complaint is the lack of energy. Hopefully there's a nice cleanup crew working overtime on my brain cancer cells. Sometimes I picture a bunch of little teeny tiny happy, yet serious, bubbles with little scrubbing brushes rubbing each cancer cell until they're so shiny that they pop and two other little cleaning fellas sweep the rubbish into dust pans.

Man. I'm so sleepy. You'd think that after sleeping 10 hours last night, then a three hour nap this morning, and then a four and a half hour nap this afternoon, I'd be revving to go. No such luck. I'm going to pull my running pants up over my feet, toss a shirt over my head, grab Dan and jog Green Lake again. It's the only thing that makes me feel alive these days. That, and when Danny makes me laugh. I'm grateful for him. He always makes me feel happy.

Here's a random picture of my favorite tree around Green Lake. It lives on Winona, on the way to PCC. It's beautiful, and I'm pretty sure that I'm not the only one who's in love with it.