Guest Blog Series - Lone Wolf

Several days ago, a girlfriend shared a brilliant idea with me. She said, "What about guest blog posts?" It came as a solution to share other people's stories since I get sick of writing about me. You'd normally never hear about any of these folks because unlike me, there are people who fear repercussions from being honest about their diagnosis. And sadly, from the stories that I've heard, their often not wrong. Once we know something about a person, we can't un-know it. And that becomes an issue regarding employment; our stories change how we are viewed. 

You guys know me, I have no filter (or a very weak one), and I just speak. But there are times when I've regretted writing this blog. It's rare, but it happens, and it's because I know that the interwebs are eternal. If I apply for a job, there is no hiding my story. I can't disguise what I've gone through, the deficits I deal with. For certain lines of work, it's unappealing for employers to hire cancer patients, especially depending on the specific diagnosis, and prognosis. It's just a fact. Anyway, I reached out to one of my tumor friends, one who is living in solitude with her diagnosis. 

My goal in sharing these stories is several fold. I want patients to have an outlet, to express themselves anonymously. I want to give a voice to different stories so that people learn the dynamics of disease. I wish life was easier, that we could all share our truths openly, but if we can't, at least we can have a format to do that here. I have no idea if there will be others who would be interested in sharing. I really hope there will be more patients, caregivers, family members, friends, etc. that would be interested in sharing their views, their experiences. I wanted to provide this slot for guest writers, because I get to hear these amazing stories, and I learn so much. It makes me a better person, it helps me understand the myriad of lives on this earth. The more I learn about other people, the more compassion I have, the more I can love deeply and be patient, and kind. And it's interesting to hear what other people go through, to hear their perspectives. I hope this provides a benefit to those who choose to write a guest post, and a benefit for those who read them. 

The goal is to start by publishing a guest post once a month. Please let me know if you would be interested in contributing. Let me pull from two posts ago, "your story is enough". Let's learn from each other. I hope you enjoy.

"I love trees, especially when seasons change.
I love their stability, strength, and endurance." - Lone Wolf

“My Story”

So I am sitting here thinking …. “This is the first time I am going public about my diagnosis and yet I am using a pen name…ugh.” There is a reason I assure you.. Ok … So where do I begin? Honestly, I am not sure where to start. I guess I will start on the day my life changed forever, but first let me provide a little history. I am a 30 something mother of young children. I am a licensed mental health therapist, and I have been married to my high school sweetheart since, well forever.

On April 2nd, 2013 I went to the ER because I was having a pretty bad headache. A few days prior I hit my head very hard on our glass shower door. Of course this was because my puppy was up to no good and I went to quickly check on her and BOOM … there goes my head. Anyway, due to the headaches, my husband suggested I go the the ER in case I had a concussion. The ER visit went from “hey your young but let's do a CT anyway to now we need to do a MRI.” Honestly, I thought that I had bleeding in my brain and I was terrified. After my MRI, the doctor returned, and the nurse took our kids out of the room. I began to cry before he spoke because I knew it was going to be news that would forever change my life.

I will never forget that the doctor sat very close to me and said, “You either have MS or a brain tumor.” My husband and I sobbed for several minutes, but then I quickly remembered that my children are down the hall coloring and I need to be strong for them. I had to be!!!

Through time I visited several neurosurgeons, neurologists and neuro oncologists. Hey, I was on an interviewing tour. Remember we pay them!! After speaking with several specialists,  I was preliminary diagnosed with a low grade glioma. You may be wondering if I had any symptoms. The answer is no, not one. The neurologist did put me on Keppra (anti-seizure) just in case. However, three days after I decided to stop taking it I had a small focal seizure in my right arm. So my neuro oncologist decided to take away my driving privileges. Of course I would NOT let that happen!!! I have three very active kids. Therefore, on July 1st I chose to have an awake craniotomy. Ok … I have to be honest here; my two c-sections were more uncomfortable and nerve wracking compared to this craniotomy. All in all, the craniotomy went well and I had over 90% of the tumor resected. 

So pathology .. What's the news? Diffuse Astrocytoma, Grade II. Now this is when my dear old friend Google became my worst nightmare. Search after search said I was going to die and worst of all the time frame in which I can die varied. So here I am “the mental health therapist” that has dealt with everyone else’s crisis now in the middle of her own. Yeah .. I know all the coping skills, to accept what you cannot change, to move forward not backward, to reach out for help, to assess signs of depression and anxiety, etc. However, during this time I was literally a “hot mess.” I was on roller coaster of emotions that never stopped. I couldn't sleep, I couldn't look at my beautiful children or husband, I couldn't look at the sorrow on my parents faces. It was such a dark place in my life and I refuse to go back there. It took so much time to get from there to where I am today. I would love to share this in posts to come. However, I say that the one thing that ignited change was when a woman told me that I live in a house of depression. This shook me to my core. You see as a therapist I have worked with many children and see the ripple effects the parents actions can have on them. At that point, I became stronger, a fighter and a thriver. I have met amazing people along the way, including Jess. Jess and I have a lot of similarities, including diagnosis, but we are similar in one very important aspect … Yes we still live in fear of the unknown but we live, love and laugh as much as we can because guess what … no one makes it out of this world alive! So maybe, and that's a big maybe, my time is shortened but having to face my mortality everyday gave me the beauty of living in the moment. Ok .. Ok .. I can go on about that forever so instead I will address why I have a pen name.

When I was first diagnosed, many people I encountered felt sorry for me. They pitied me. Every face I saw had sympathy written all over it. One thing about me is that I have always been a go-getter. You know, nothing can stop me!!! However, I began to notice that their pity weakened my strength. It just dragged me down. Let me tell you, as a therapist, I  am highly trained on empathy versus sympathy. It was interesting to experience the two first hand. This actually helped me to become a better therapist. So after this experience I limited who I told. I never EVER tell my clients because their sessions are about them … NOT me!! Also, my job doesn't have a clue. I want to be seen as a qualified therapist and not “the woman with a brain tumor.” Oh and get this,  I use medical marijuana. Yeah … Not such a fun conversation to have with parents at one of my kids next game! So, for now, I have a pen name to protect my job, my license, and my children, but as my sister in law always says “I cannot wait for your ‘I’m coming out party!!!!’” Me too!! This baggage is too heavy for me to carry, BUT if I face sympathy, pity or judgement this time around I will be well prepared to point to where the door is!!! As someone I love always says to me and now I say to you, “Light and love.”

- Lone Wolf

Moving Up The MRI

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

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

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

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

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

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

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

Flipping The Switch

Oh you guys, it's almost here, we should know tomorrow about whether or not UCLA believes I'm "stable" or whether they'll want me to fly down for another Dopa PET. This is such a weird life, just saying those words. Do you ever find yourself stopping your gait, turning your chin up to face the sky, and just smiling with pure joy about how magical life is? I can't explain it that in this moment, this moment of uncertainty about the direction of my life, I find it amazing how deeply my soul is constantly overflowing with gratitude, and happiness, and wonderment. Half the time I just laugh at myself, at how annoyingly happy I am. It's absolutely ridiculous, yet I love it because I know what the alternative would be. I'm still logical, and analytical, and I still have bad days, or bad moments, but somehow I have a serious constant influx of endorphins.

Even though I can't really explain it, I do know that this inner joy, this ability to find silver linings in even the most dull, dark places, is the biggest gift the world has given me. I wish it was something I could bottle, wrap with a bow, and give as gifts. I hadn't really thought about whether or not my attitude is "normal" for a person with my diagnosis until I kept getting private emails from patient's families and friends, from people worried about brain tumor fighters who want to give up, are depressed, or are riddled with grief. Some have more progressive disease, others have less, but ultimately it doesn't matter how serious a situation is, because the power comes from whether or not it debilitates that person.

It hurts me physically when I hear each story, because I know that there is nothing I can do. I try to share my story, or give tips on how I trick myself into being happy even when I'm scared, but ultimately, happiness will always come from within. No one else can fix it. I've had my share of terrible times, and of course I've already had one recurrence, but instead of that overwhelming me, or derailing me, I used it to get stronger, to encourage myself. I used it as ammo. It's those silver linings that keep you going, that trick you into trying. Like this morning, I fried up two eggs for breakfast, and just the little detail of using my mom's old orange enameled cast iron skillet - her favorite, that she passed down - reminded me all about what my mom has given me, everything she has done, and continues to do. I think about the last time she hugged me, the last time she and I laughed together. In a series of seconds I'm filled with love, and it's escalating, it's like a catapult. I'm engulfed in gratefulness, for my life, for the gift of resilience, for the gift to be here on Earth, for the gift to experience all of this beauty, and love. It's easy for me to be happy, it's a place I go to often, I know the path by heart.

Was I always this way? Was it always this easy? No, it hasn't been. I've been depressed before - even needing anti-depressants, but it was long before diagnosis. But from the moment I was slapped in the face with the news of my brain tumor, life instantly became "real" and I internalized the fact that this isn't a trial run. This is it. This is all we've got. We've got this one life, and in any moment we can decide how we choose to interpret what's happening around us. We have the choice to be whomever we want to be. And we can choose how to best handle each situation. Those facts, the facts that we have great control over how we view the world gives me great strength. It flipped a switch in me, and I am so glad it did. Now I just want to love people, and laugh, and have great conversations, and hug people, and help others in any way that I can. (God, am I just obnoxious?)

I don't know why I'm so fortunate in life, or why I'm still here - a lucky one. I don't know how I became so blessed with all the wonderful people in my life, but I don't take it for granted for a single second. I know it can all be taken away in an instant.

Okay, I'm off to work more on an art piece for friend....

Buphenyl (Sodium Phenylbutyrate)

I'm embarrassed. Remember back a few months ago when I was ranting about that very expensive drug that treats gliomas? (As an aside, it's the same drug that Dr Burzynski uses to create his antineoplastons.) Well, apparently, I'm one of the lucky ones that can get it. I kind of assumed I couldn't because my doctor said it was a long shot. So, like a defeatist, I didn't bother to even check with my insurance. Yesterday, as I was reviewing my lists of recommended supplements and recommended medications, I decided to bite the bullet and not be afraid of hearing, "No".

After several phone calls, lots of hanging out on hold, it looks like Buphenyl (sodium phenylbutyrate) is mostly covered. If you recall, that is the prescription medication that is for people with urea cycle disorders (UCD); it is also used for off label use to fight various cancers.

After a little bit of web surfing I read that Aetna health insurance (not my health insurance - I'll be getting it though Blue Cross Blue Shield) goes as far as covering Buphenyl for UCD and also acute promyelocytic leukemia and malignant gliomas. Wow! The problem? As I try to find more proof that Buphenyl is effective to treat malignant gliomas, I can't seem to find it. There has been one complete response that I've found, but that's just one person. Shoot - that result could be as simple as tumor genetics.

I feel dumb because I wanted this drug, and now I wonder if it's actually worth the side effects and effort. I'm posting the study here for my other brain tumor fighters so that you guys have the info if you're interested...



There's more out on the web, but not much. Please feel free to email me (jessoldwyn@hotmail.com) or post links in the comments section with any information you find - or opinions. I'm not a fast responder to emails, but I read all of them and appreciate the help.

Partially Back

Hi Friends! I'm on limited technology. And I have to say that Dan is truly amazing. He can read me so well. In my downtime I've been able to focus on resting. I started a new routine in the mornings, I wake up and pick up the house, make the bed, do any random dishes from Dan's breakfast and I've even been doing small loads of laundry. I do chores for one hour, then put the kettle on and I start stretching. I make a tea, as it cools I continue to stretch and do floor exercises.

I've been able to paint two large canvases for my niece and nephew, which is VERY exciting! I lay in bed every day from 1-3, sometimes napping, other times just laying with my eyes closed (usually pinned by my cat). Dan has been joining me on evening walks. For the first time in weeks Danny had Saturday off, so yesterday morning Dan and I walked, and jogged from our house down and around the lake, then home. The entire trip was about 4 miles. I slogged a total of 1 mile (not consistently).

This morning Dan took me to the gym for the first time since the surgery. We spent a little under an hour, which is fantastic! Heading to the gym is a very big deal because the noise of the loud music, voices, weights clanging - the smells of cleaners, the bleach and vibrations of the cardio machines can be overwhelming at times, triggering auras. I have always been able to get out of the gym before it has turned into a seizure but it's still very scary. Today though, it was a complete success! We worked out on the cardio machine, we did weights and I even went into the woman's locker room to weigh myself without Dan's supervision (I can be overwhelmed at times doing things alone without Dan or someone in case of a seizure).

I feel like I'm focusing on resting, and utilizing my energy for physical activity which is integral for my improvement. I appreciate your patience with emails, texts, phone calls and Facebook stuff. I'm still not back, and at this point in emails alone I have over 75+ legitimate emails that I have yet to respond to. I love all of my friends and family so much, and I'm sorry I'm not a good friend these days. I don't know how long it's going to take me to get caught up, and I'm sorry for that! It's probably going to take a very long time. I probably also won't be up for social stuff, even walks or runs for a bit. It's amazing how tired I am after a normal day, for now I just need to remember that I'm healing and I need to get into a normal routine, take it easy, and as soon as I'm able to get my life semi-back to the way it was, I can start getting social :) I think, initially, I jumped out of the gate running and it was a mistake. I'm fixing it though :)

I love you all, so much. I'm sorry to those of you who I have yet email back, etc. I appreciate the patience.

Tuesday afternoon I have a phone call with my NYC doctor. He will review my surgery notes, my blood work, and my overall health to see if I'm a viable candidate for dendritic cell therapy in Germany. I'm excited, and nervous. My stomach is full of butterflies. Not much rest for the weary :)

This therapy could help clean up residual tumor (the invisible cells) and teach my body to recognize tumor cells as the enemy for the future. To train my body to seek out and rid my body of cancer cells would be AWESOME!! Fingers crossed that the appointment goes well. I'm also grateful that I'm able to discuss my situation over the phone with my doctor, that I don't have to travel. Lots to be thankful about.

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.

Crushing Dreams

The most frustrating thing about my doctors, is that they are truly waiting for me to die. They don't believe that there's anything that can be done to extend my life (and yet they stiiiiill want to radiate). When we discussed the lack of change in tumor size from October 25th, and January 13th, the doctors said it didn't matter. They care about the big picture. I understand that they're trained to compile the chronological MRI scans to review and observe changes, but when I held the tumor at bay for three months I didn't get a "Woop woop!" Nor did I get a, "Huh. Interesting!" Nothing. They said it didn't matter. Really? I would have appreciated a small smile, or a, "That's great! Not what we typically see here, and you can't extrapolate that to anything one way or another, but heck it's better than the opposite." It's all always so negative. They don't believe in me, they don't believe in us collectively as brain cancer fighters. I've shopped for oncologists, trying to find a better fit, but to no avail. The truth is that according to modern medicine, I'm supposed to continuously get worse as the tumor grows. I'm supposed to progressively lose my speech, my cognitive skills, my independence, my motor skills, my dexterity, my body will start falling apart, echk...everything. I'm supposed to be a good girl, a model patient, and to just give in to whatever my doctors recommend, and succumb to this cancer, and I can see how people do. When you're surrounded by professionals who handle your care, and they don't believe in you, it's hard to believe in yourself.

It is true, the brain tumor did not grow in the time period from October 25 to January 13, the doctors verified that fact today in our appointment. It's amazing how Danny, my parents and I, find this astounding fact to be something to rejoice in, and yet the doctors completely blow it off. It's sad, really. We should be jumping up and down, using this momentum to catapult us to the next phase of our Adios Hermie mission. But somehow, instead, I just feel defeated, and wiped out. I don't cry very often, probably only once every three months, but I can feel a swelling of emotion.

It was a long day of appointments, and there was a lot of information. The main point is that my oncologists, and all of my doctors for that matter, are in the business of crushing dreams. They all expect me to die, it's in their words, and worst of all in their eyes. My dream is to live, and today they just peed on that.

90-95% Of Cancer Rooted In Lifestyle/Environment

Almost Merry Christmas! Kind of, I'm two days early. It feels like Christmas (even though we don't have a tree). It's a combination of the smells outside (it's sooooo cold), and the lack of traffic outside our living room window. This is the first Christmas that Danny and I have had, just the two of us. I'm excited! It's not going to be the homemade cinnamon rolls that my mom always makes, but a green drink in pajamas will still be fun.

I finished the 4-4-4 last night and I'm so grateful. It was starting to make my stomach upset and the right side of my body was tingly. The tingles are good, that means it's working. My digestive system is still a little bit off, so I went for comfort food this morning. My old favorite toast with Dave's Good Seed Sprouted Bread, an egg (free range of course with no gross hormones in the chicken or its food) doused in tumeric, with a massive clove of garlic chopped on top. It is the first time I've had an egg in two months.

The toast still isn't sitting well, but I'm sure it'll even itself out. I'm going to wash it down with some broccoli tea and see what happens.

On a different note, thank you to everyone who donated to Matt's Movember quest. Thank you to those who've donated to the Islander's Bank account in Friday Harbor. Thank you for those of you who have already bought from the hopeforjess site on Etsy. Danny and I have been talking, constantly, about how fortunate we are. The money that you've donated has given us such a relief. We are still getting medical bills from 2010. Isn't that crazy?!?!? My goal is to continue to get healthier and healthier, treating my body with respect and kindness. I'm excited for this MRI because I believe my brain will look better than it did in October.

I believe I can beat this, and my confidence isn't based in hope alone, it's research backed. Dan and I were recently sent a thread from a cancer post, which included several research studies. Below is an excerpt which I found encouraging (to read the full post and access the research studies please click here):

Cancer is a Preventable Disease that Requires Major Lifestyle Changes
Abstract. This year, more than 1 million Americans and more than 10 million people worldwide are expected to be diagnosed with cancer, a disease commonly believed to be preventable. Only 5-10% of all cancer cases can be attributed to genetic defects, whereas the remaining 90-95% have their roots in the environment and lifestyle. The lifestyle factors include cigarette smoking, diet (fried foods, red meat), alcohol, sun exposure, environmental pollutants, infections, stress, obesity, and physical inactivity. The evidence indicates that of all cancer-related deaths, almost 25-30% are due to tobacco, as many as 30-35% are linked to diet, about 15-20% are due to infections, and the remaining percentage are due to other factors like radiation, stress, physical inactivity, environmental pollutants etc. Therefore, cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. In this review we present evidence that inflammation is the link between the agents/factors that cause cancer and the agents that prevent it. In addition, we provide evidence that cancer is a preventable disease that requires major lifestyle changes. A more detailed discussion of dietary agents that can block inflammation and thereby provide chemopreventative effects is presented in the following section. Most carcinogens that are ingested, such as nitrates, nitrosamines, pesticides, and dioxins, come from food or food additives or from cooking.

If 90-95% of cancers are rooted in environment and lifestyle, shouldn't we be able to reverse most them? I still believe that my cell phone was to blame for my brain tumor. I think it was the radiation. Lots of people think I'm misguided, but I don't care. They don't do the research, and most people don't know to check WHO is doing the research. Most of the studies stating that cell phones are safe have been funded either directly or indirectly by the major companies that profit from them. Anyway, enough of my rant. Back to the cancer.

My body isn't going to right itself, I need to build up the Natural Killer cells, they're the little warriors of your immune system that go out and clean up tumor cells and viruses. It's been proven in studies that people with cancer have a depleted amount of NK cells. So, just by eating "clean" food will not, alone, fix my problem. This cancer is a whole body disease, it can not be eradicated with food alone. I need to build up my immune system, and cultivate my NK cells. With supplements you can increase your NK cells, and often after a period of supplementation, your body starts to create more on its own. I just need to train my body, and give it a jump start of sorts. Anyway, I think I'm getting to technical in all of this - sorry. I tend to get really excited about this stuff.

I want so badly to fix this cancer and help others. I don't mind doing the leg work. It would be my ultimate dream to get to the point where there is no detectable cancer in my body and then help others achieve the same outcome. That would be the ultimate. I can not imagine how wonderful that would feel, to replicate the success. But, first things first, I have to start with me.

Enjoying Life's Pulse

We should have the keys to our new place in Greenlake in two weeks. Fun! This move signifies freedom for me. I will be able to walk all over the place running errands. It's literally thrilling. My heart starts going crazy just thinking I'll be able to take care of myself, and the daily things for Danny and I. It has been painful to be stuck in our Wenatchee home, isolated from humans (other than my parents and the friends that stop by). I can entertain myself, I like to listen to music or do things around the house, but there's something about being around people in public, looking at life as it goes by. It's fun. It's therapeutic and magnificent. Life has such an amazing pulse, it's in humans, in pets, in the animals in nature, trees, plants, bugs, even the wind - and when it's all combined, when you look around, it's a lifeblood.

Breakfast On The Patio

I've already been packing for a few hours this morning, but it's time for a breakfast break. I toasted a piece of Dave's Killer Bread, sprinkled an egg with loads of turmeric, and chopped a clove of garlic for the top, and I've got my broccoli tea. I would have added sprouts on top of the toast, but I'm fresh out. It might sound like a crazy meal, but it's delicious and full of cancer fighting elements. Turmeric is insanely important to fight cancer, it's right up there with the brassica family.

I think the hardest part about dealing with cancers and tumors is the diet. There are so many different voices from specialists and they definitely don't all agree. Each illness varies, with the exception of sugar. Sugar feeds cancers and tumors. Sugar is incredibly bad for you. The dispute falls between the doctors that believe that all sugar is the same, and others who still recommend fruit in the diet. (The doctors who recommend removing fruit from the diet exchange the fruit for supplements to get the essential antioxidants and other benefits from the fruits without the sugar.) Some strongly believe that not only breads, pastas, and rice need to be avoided, they also want whole grains out of the diet. I just know that I can't live without some whole grains, so I'm still including healthy whole grains, but keeping the carbs as a small portion of my overall diet.

The brain tumor suggestions for diet is a complete mind game. It's tricky, it's frustrating, and if you over analyze each piece of food, every meal, looking for failure, it will make you crazy. It's impossible to overlook diet, it's the number one way to try and slow the tumor growth but I still have days when I eat poorly. In fact, for the first time, Danny and I went camping. I hung out with our friends eating Cheetos, and Polish sausages, but I'm still sick from all of the bad food. That's the thing that's crazy. If you eat really healthily, if you take a day or weekend off, you will pay for it. When I woke up on Sunday, all I wanted was a cabbage salad. Sounds weird, but my body was craving the crunch and the way I feel after I eat it. 

Our First Camping Trip

Bunny Happy Hour

I'm embarrassed. I've been cranky and negative. The worst part is that I've been feeling sorry for myself. That's embarrassing! It's not about the tumor, it's about how the tumor has effected my life. I miss running, I miss being active, I miss driving, I miss having hair, I miss my pants fitting, blah blah blah. I've been mourning my life, and now I'm fed up of my own whining.

Soooooo, I wrote down all the yoga classes at my gym and I'm going to start doing yoga. Yay! I'm waiting to get cleared for some more active exercising, but at least this has to start somewhere. I'm not going to lie, it's hard to hold back because I miss getting the runner's high, but I have to start doing something or I'll start kicking puppies.

By the way, I have some very good news. Danny and I sat on the patio at the warehouse apartment and watched stars two nights ago. Apparently, happy hour for bunnies is just after dusk. It is a cotton tail paradise all over our back parking area, big bunnies, little bunnies, bunnies doing indos and stoppies (like a little motorcycle that pops up on its front tire), the bunnies were going CRAZY! I knew there was something going on when I realized my plants were mysteriously losing their leaves. The Stewie clan is alive and well! To celebrate, I'm going to hit the plant store to buy a few of their favorite flavors!

Mini Stewie

Two days ago, as you can imagine, I was thrilled to find a Mini Stewie in my garden (Stewie is about double the size. I don't know if it shows between the photos from the two posts). Here's a few photos. As you can see, I went a little camera happy.

Is he the cutest thing in the whole world?!?! Well. He was. Sadly, I found him dead in my garden when I got home from the speech therapist yesterday. We believe the neighbor's dog attacked him. Mini Stewie then ran through the fence and into my garden, where he died.

The worst part is that I was so excited when we got home that I was looking for Mini Stewie and I found his dead body. I loved him. It's amazing how much you can love something instantly and become attached in less than 24 hours. I was so devastated yesterday that I couldn't even bring myself to get on the computer.

Yesterday, while I was mourning for Mini Stewie it occurred to me that just because you love something, like the bunny, doesn't mean that it will live. I hoped that the bunny would be safe around the neighborhood, and grow old to have Micro Mini Stewies. Just as I was hoping to enjoy Mini Stewie for a long time, I'm realizing that my whole life is going to exist on hope. I hope in two months I'll have a clean MRI (and then the next MRI after that, and that after that). I hope that I won't need radiation and chemo therapy. I hope that the rest of my existing tumor won't grow fast. I hope that I will beat the odds for the seven year average. I hope that I never have to spend another week in the ICU. I hope. I hope. I hope. I guess that this is my life.

I realize that wasting time worrying about the "what if's" in my life is just what it is, wasting valuable time, but at the same time I'm human. Of course there will be times when I'm going to worry. Maybe I'm just looking at the word "hope" with the wrong connotation. Maybe I'm starting to associate hope with fear. I don't know. I just feel so vulnerable.