Thursday, August 25, 2011

Ok. I'm over myself. I hate complaining and yet I still do it. Here I am, I'm annoyed by myself. I'm alive. I have a kind, thoughtful man, a patient family and amazing friends that know when to distract me with laughter and when to just give a hug. Sometimes I have to remind myself that nothing is that bad in life until there is no life to live. It really snaps me back into reality.

Wednesday, August 24, 2011

Divalproex Is The Devil

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).

Monday, August 22, 2011

Friday Harbor Photos

My Brother (Kaal), Matt, Me, AJ & Larry


While I was in Friday Harbor, I had a chance for a quick visit with friends. Friends have been such a lifeline on this crazy ride. I can't say enough how much the love is appreciated. By the way, AJ is preggers! With TWINS!! A boy and a girl. I'm thinking the perfect names would be Jess & Danny. Or maybe they could use our middle names, Lynn and Wesly. Just a thought :)

Friday, August 19, 2011

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."



I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.



Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...


Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.

Thursday, August 18, 2011

Day 2: Broccoli Sprouts





I just rinsed the seeds, so some of them are floating, but they'll eventually fall down to the bottom. If you look closely, you can see some of the seeds starting to sprout. Yay! My mom says it's fail-proof, but I've been known to kill house plants, even cactus, so I'm still waiting to see if this whole experiment works.

Here's a link to the item that I'm using to grow my sprouts. My starter kit was a gift, so I'm not sure where it was purchased, but the brand is Sprout-Ease Econo-Sprouter. It has instructions included. In fact, it has more than instructions, it has a pamphlet tucked inside the package. Talk about making it easy. I will have zero excuses if my baby broccoli sprouts bite it. Anyway, the flier thing has information for all types of seeds, measurements, growth times, etc. All you need is a mason jar.

*Click on the link above for Sprout-Ease or you can click HERE





Wednesday, August 17, 2011

Broccoli Sprouts



I am officially growing my own organic broccoli sprouts. How fun is this!?! Allegedly, the process is very easy and we should have edible sprouts in 3-5 days. Year-round sprouts. This is fantastic!

I'm grateful to have Danny home. It's true what they say, with the right mate people DO live longer. We're eating ridiculous amounts of garlic, onions, and broccoli. We are two stinky partners in crime.

Here is a link to an article about sulforaphane explaining how it causes apoptosis (programmed cell death) in glioblastoma tumors (the most malignant and prevalent brain tumor around). I don't know the exact amount that naturalists use in treatment, or in experimentation for that matter, but I figure the more sulforaphane I can include in my diet, the less radiation or further treatment I'll need later.

If you're interested, you can google sulforaphane, and read how it kills lots of different cancer cells, not just brain tumor cells - it's very effective at fighting breast cancer cells too! Eat your broccoli. Seriously. Or, if you can't stomach enough broccoli, grow some sprouts like me! They're delicious on everything, salads, sandwiches, wraps, even pizza. According to Danny you can put sprouts on anything that takes toppings, "bagels, tuna....everything, pretty much."

I just remembered an article from months past that I posted, and I'm going to do so again, below. It's the specific information from John Hopkins scientists stating, "broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads." You can read the article here on my blog, or click the title for the actual website.

Cancer Protection Compound Abundant in Broccoli Sprouts 

September 15, 1997
Media Contact: Marc Kusinitz
Phone: (410) 955-8665
E-mail: mkusinit@welchlink.welch.jhu.edu

 
Dr. Paul Talalay holds broccoli sprouts
Photo: Keith Weller

Dr. Paul Talalay displays broccoli sprouts.
2100x1585, 300dpi TIFF JPEG, (2.7 MB)
"The young sprouts that we have found . . ."

 
JOHNS HOPKINS SCIENTISTS have found a new and highly concentrated source of sulforaphane, a compound they identified in 1992 that helps mobilize the body's natural cancer-fighting resources and reduces risk of developing cancer.

"Three-day-old broccoli sprouts consistently contain 20 to 50 times the amount of chemoprotective compounds found in mature broccoli heads, and may offer a simple, dietary means of chemically reducing cancer risk," says Paul Talalay, M.D., J.J. Abel Distinguished Service Professor of Pharmacology. 

Talalay's research team fed extracts of the sprouts to groups of 20 female rats for five days, and exposed them and a control group that had not received the extracts to a carcinogen, dimethylbenzanthracene. The rats that received the extracts developed fewer tumors, and those that did get tumors had smaller growths that took longer to develop.

In a paper published in tomorrow's issue of the Proceedings of the National Academy of Sciences, Talalay and his coworkers describe their successful efforts to build on their 1992 discovery of sulforaphane's chemoprotective properties. Work described in the study is the subject of issued and pending patents.

A systematic search for dietary sources of compounds that increase resistance to cancer-causing agents led the Hopkins group to focus on naturally occurring compounds in edible plants that mobilize Phase 2 detoxification enzymes. These enzymes neutralize highly reactive, dangerous forms of cancer-causing chemicals before they can damage DNA and promote cancer.

"A comparable amount of chemoprotective activity . . ."


Dr. Jed Fahey examines

young broccoli sprouts
Photo: Keith Weller
Dr. Jed Fahey examines young sprouts.
1500x2100, 300dpi TIFF JPEG (2.3 MB)
Sulforaphane "is a very potent promoter of Phase 2 enzymes," says Jed Fahey, plant physiologist and manager of the Brassica Chemoprotection Laboratory at Hopkins, and broccoli contains unusually high levels of glucoraphanin, the naturally-occurring precursor of sulforaphane.

However, tests reported in the new study showed that glucoraphanin levels were highly variable in broccoli samples, and there was no way to tell which broccoli plants had the most without sophisticated chemical analysis.

"Even if that were possible, people would still have to eat unreasonably large quantities of broccoli to get any significant promotion of Phase 2 enzymes," Talalay says.

Clinical studies are currently under way to see if eating a few tablespoons of the sprouts daily can supply the same degree of chemoprotection as one to two pounds of broccoli eaten weekly. The sprouts look and taste something like alfalfa sprouts, according to Talalay.
Talalay founded the Brassica Chemoprotection Laboratory, a Hopkins center that focuses on identifying chemoprotective nutrients and finding ways to maximize their effects. Brassica is a plant genus more commonly known as the mustard family, and includes in addition to broccoli, Brussels sprouts, cabbage, kale, cauliflower and turnips.

"Man-made compounds that increase the resistance of cells and tissues to carcinogens are currently under development, but will require years of clinical trials to determine safety and efficacy," Talalay notes. "For now, we may get faster and better impact by looking at dietary means of supplying that protection. Eating more fruits and vegetables has long been associated with reduced cancer risk, so it made sense for us to look at vegetables.

"Scientists currently need to continue to develop new ways of detecting and treating cancer once it is established, but it also makes sense to focus more attention on efforts to prevent cancer from arising," he adds.

Fahey and Yuesheng Zhang, M.D., Ph.D., a postdoctoral fellow, are also authors on the PNAS paper.

Work in Talalay's laboratory is supported by the National Cancer Institute, philanthropic contributions to Brassica Chemoprotection Laboratory, and grants from the Cancer Research Foundation of America and the American Institute for Cancer Research.

Talalay is establishing the Brassica Foundation, a foundation that will test and certify chemoprotective vegetables such as sprouts to raise funds for chemoprotection research.

Tuesday, August 16, 2011

Danny's Home!

Dan's home!!!!!! I was deep asleep in a nap a few moments ago, when I felt a little tickle on my foot. I jumped up, startled, sure that my eyes were deceiving me. He had driven the six hours all the way back to Wenatchee from Portland. Apparently, the training for Union Pacific has been canceled all across the western region.

I'm so happy to have him home, and yet disappointed that he again has to try a new avenue of work. The company called it "furlough" meaning he hasn't lost his job, but they no longer need him. He will be called back when work picks back up. The unfortunate thing is that there are people who have been working for Union Pacific for four or five years and they are also on furlough. Things are not looking good for this job prospect.

Also, as a side note, I woke up from a dead sleep last night because I realized I had not mentioned the fact the title of my article was not written by me. I would never have titled my work "Jessica: An Amazing Woman." I was so embarrassed (and honored) that I forgot to mention that fact in my blog yesterday. I hope people know that I'm not that conceited. It was a huge compliment, written by the editor, but I would never have assumed that I should be considered an amazing woman. Maybe I have an amazing story, but I'm just doing what most people would do in the face of bad news. Anyway, I just wanted to clear that up.

Monday, August 15, 2011

My First Article

I'm back home after a week on the island (Friday Harbor). I'm sorry for not contacting people. Sometimes I become overwhelmed by going home. There are so many people that I would love to visit, and since I can't contact everyone, I often end up hiding out. Of course, I can't drive anyway, so that makes it easy to hide.

It's nice to be back. I just did my 40 minute workout - 30 minutes of running with 5 minute warm up and 5 cool down. I didn't feel like working out, but I told myself, now that I have a treadmill in my living room, I need to take advantage of the opportunity.

While I ran, listening to my MP3 player and watching the Jets come back against the Texans, I thought to myself, "I don't live to run. I run to live." What a crazy concept. I'm literally running to defeat the grim reaper. Of course, most people work out to be healthy and live long lives, but I truly feel a responsibility to exercise. While I was on the island I went for a few walks but I didn't run. I was scared to run on the road and go too far from the house. I was worried about having a seizure and not having someone help me. It's these little fears that make me frustrated. The seizures are real, in fact just as I was running on my treadmill a few minutes ago, I had to stop and get water because my right arm started slightly tingling. After I had some cold water it was better. I only had five minutes left of running so I just dialed down the speed. I thought it was important to finish my goal, to set a precedent. It's hard to know when to push and when to back off. I don't want to be a woman living in fear. I want to conquer mountains, not lay on the couch. At the same time, out of respect for everyone who loves me, I have to sleep a lot, and take it easy. Stress and sleep are the #1 killer and #1 healer for brain tumor function, respectively.

My life has changed so much, each decision, every activity. I have to weigh each choice so much, then re-evaluate. I can't just open the door and take off for a jog. Sorry if it sounds like I'm complaining. I know it's not the end of the world, I'm just trying to navigate the new rules of my life. 

Earlier today, as I was watching the national news, a girl was talking about her addiction to sun tanning. She has skin cancer, and yet still tans. She was giggling, and shrugging her shoulders as if to say, "Yep, I'm crazy, but hey, I'm hot." I was shocked, and it really got me thinking. What are people really willing to do when they get diagnosed with cancer or other illnesses? Shoot. I'm afraid to color my hair because of the dye, and here's this crazy girl tanning with cancer. I wonder if beauty can be an addiction? That reminds me, I need a hair cut. I've only had two hair cuts since the brain surgeries. I'm nervous to have someone deal with the scar. It's such a private, graphic, intimate look into my life. It's hard to be that vulnerable sometimes.

On a side note, I my first article was published. If you're interested, you can click on the following link:

Island Guardian
http://www.islandguardian.com/archives/00004017.html

Saturday, August 13, 2011

Evolution Of My Brain Tumor Diet

Jessica C, my tumor fighting friend, shared information about an amazing scientist and doctor. It gives me hope and a better direction. This whole tumor fight is a constant evolution and I'm grateful for people like Dr Servan-Schreiber. I wish I could hug him for everything he has done for people like me - unfortunately, he passed away just last month.

The Story of Dr. David Servan-Schreiber:

If you click the above link it takes you to the website for the book. The diet and information is facinating and gives me so much hope! It's one thing to have hope just because you don't want to give up. That type of hope, I feel, is short lived and empty. I need hope through positive proven actions. By doing everything I can to eat a healthy well balanced diet full of foods from the allium and brassica families, I am increasing my body's ability to fight cancer. The book points out all kinds of cancer fighting foods that specifically help with brain tumors. I love this guy for what he has given me!!
Interestingly, according to the author from above, in petri dishes, garlic is shown to kill brain cancer cells. In order to activate the enzyme (allinase) that fights the cancer, you peel, then chop the garlic and let it sit for 15 minutes. Then you can either add it to both raw or cooked dishes. Who knows if the enzyme is going to cross my blood brain barrier to fight the brain tumor, but what the heck, it's worth a shot!
My new thing, after having read the articles, is garlic toast for breakfast. I take one slice of Dave's Killer Good Seed bread and toast it. I drizzle some olive, or flax oil, pile two large fresh chopped cloves of garlic across the top and spread bunches of broccoli sprouts onto the slice. Yum!! I stink for a few hours (although no one around me will admit it), but I feel powerful against the tumor by eating garlic. I literally visualize the tumor shrieking like the evil little yellow troublemakers on Despicable Me (the yellow guys would be the tumor cells).

I don't want to be all preachy about food, I'm just excited. You don't have to overdose on the garlic like yours truly. In fact, you don't have to do anything that I choose to do. That's the fun thing about personal choice.
Other than the garlic finding, I'm also excited to adjust my diet to include whole grains which should help keep my glucose levels stable and give my stomach more glue to keep my body fueled. My diet is ever evolving. I'm avoiding coffee these days, which is fine. I just want to avoid seizures at all cost. I had been doing a version of the Paleolithic diet (yep, Marlis you are totally right - and thank you for all the kind things you said. I have so much love for you and your family. I remember hearing about when you were going through your crazy medical ordeal, it was so scary and I didn't even know all of the ins and outs. I'm so glad to hear that you're doing better, but I imagine you're still not completely healed. Please hug your husband, I distinctly remember riding the bus with him, and an occasion when he dared Kaal to eat cat food, and someone bit a slug. Aaaah, childhood memories!), but I just don't think I can sustain the diet long term. I need to include whole grains. The low energy was tough, and that's why I hit the coffee too hard and the coffee bit back with seizures. Now, I just have some green tea and drink a bunch of ice water. I find it helps me with the low energy. That and getting enough exercise, like a walk each day. I'm trying to get a good walk or exercise in, it's not always easy, and sometimes I don't feel like it, but I always feel better after it's done. 

The evolution of the brain tumor diet. Always changing. The more I learn the more I include. Maybe I'll be able to avoid radiation by enhancing my immune system. That would be amazing! I reeeeaaaaalllllyyyy do not want to do radiation, but heck, no need to borrow trouble! :) As soon as the fear crosses my mind, it's already fleeting. Too beautiful of a day to think about such serious things! PS Thank you for the fresh garlic Larry - it is DELICIOUS!!

Larry said (hopefully he doesn't mind me sharing this), "If your tumor could be cured by love, it would already be gone." The interesting thing, though, is that Larry shared fresh garlic from his garden that I've been eating on my toast. So his love, could literally be curing me. How cool is that. Between the garlic from Larry and the broccoli sprouts from Susea, I have the ultimate breakfast tumor fighting team. Thank you guys!!

Tuesday, August 9, 2011

Low Glucose?

It's amazing how not being able to drive will slow ones life. The past two days I have been sleeping and sleeping. Well, sleeping and bathing. I'm almost rested, and very clean. Yesterday, I took both a shower, and a hot bath. Water conservation fanatics would curse me.

Although the second seizure was a shock, I'm feeling better.

What does one do when their body starts doing weird things? Obviously...Goggle it! At least, that's what I do. It's how we found out about the brain tumor in the first place. Thank you internet!

According to the National Institutes of Health
Causes of seizures can include:
  • Abnormal levels of sodium or glucose in the blood
  • Brain injury (such as stroke or a head injury)
  • Brain injury that occurs to the baby during labor or childbirth
  • Brain problems that occur before birth (congenital brain defects)
  • Brain tumor or bleeding in the brain
  • Dementia, such as Alzheimer's disease
  • High fever
  • Illnesses that cause the brain to deteriorate
  • Infections that affect the brain, such as meningitis, encephalitis, neurosyphilis, or AIDS
  • Kidney or liver failure
  • Phenylketonuria (PKU), which can cause seizures in infants
  • Use of illegal street drugs, such as cocaine or amphetamines
  • Withdrawal from alcohol after drinking a lot on most days
  • Withdrawal from certain drugs, including some painkillers and sleeping pills

After trying to find the cause of my seizures, Dan, my parents and I have isolated the similarities between the episodes. There are only two bullets from above that work. Obviously I have a brain tumor, and the second cause is abnormal levels of glucose in the blood. Both days that I had seizures, I skipped breakfast (I know, I know, very stupid move but I was busy) and drank 2+ espresso shots.

My whole life I have been irregular with my morning meals. I've never had a problem skipping breakfast, or drinking lots of coffee on an empty stomach, but now, my life is changing, my health is different, and what used to work does not work any longer. I am not the iron horse I once was. Again, I need to be more gentle with my body.

At every turn, with this tumor adventure, my body is making me slow down. If I don't listen to what my body needs (like more glucose), my body makes me listen.

Note to self: Eat breakfast and keep a regular eating schedule. Maybe it's time to revise my diet a bit.

Friday, August 5, 2011

2nd Seizure

Damn it. Danny is in town for the weekend and we spent the entire afternoon in the ER. We were running errands, Dan went into the DMV to renew his tabs, while I sat in the car, and after about 5 minutes I started getting the tingles in my arms. It was just like the feeling before my first seizure. I became insanely hot, my heart was racing and I thought for sure I was going to lose my cookies. I lost control of my hands and arms - they shriveled up, I couldn't grasp objects, nor could I lift my arms. It's a long story and I don't have the energy to expand.

I have sense napped for a few hours. The whole ordeal was exhausting. I'm just so disappointed that this is happening. It's frustrating and sad. I know that my seizures effect everyone around me, they worry, they change their lives to take care of me. I hate the fact that my body isn't reliable. I've never experienced anything like this before.

Dan took a photo of me in my hospital bed. Not my most shinning moment.


At least we were able to stop the seizure from turning into a grand mal. My doctors had prescribed a medicine for me to take when I felt a seizure coming on. When I was in the truck, Danny came back from the DMV and I started begging, begging, begging for water, he ran to the nearest place and paid for a huge water, putting the straw in my mouth. He then remembered the super pre-seizure pills that I couldn't access (nor did I remember in my time of confusion). After swallowing one pill and putting the next one under my tongue, we were off to the ER.  

What a day!

Wednesday, August 3, 2011

Jess & Isla


I have that "deer in the headlight look" because I'm terrified of having my photo taken, I just wanted to share this picture of my little niece Isla snuggling up to me (taken a few weeks ago). She truly melts my heart. This photo was taken the day Isla agreed that we're best friends.

Sometimes, when I'm overwhelmed, or sad, I think about all the wonderful people in my life, just like that little silly little two & a half year old. Life is tough sometimes, but it's also amazingly beautiful.

Tuesday, August 2, 2011

Parental Picnic

The past several days have been busy. I'm overwhelmed and instead of wallowing in stress and the changes in my life (Seriously, I can't drive?!? When will Danny's training end?!? Is wine really that bad for me?!?) I'm trying to make a conscious effort to change my frustrated attitude. I cooked and hosted dinner for my parents tonight, trying to distract myself from all the crazy things going on in my life.

Kale salad w/cucumber
Zucchini stuffed with tomato/basil/a bit of sheep cheese (thanks Laura!)
Grilled chicken breast

Then, I printed a 10k schedule to get back on track with my workouts. Now, it's an early bedtime to finish my love affair with a book Green lent me, Bel Canto by Ann Patchett.

I've heard somewhere that when in doubt, do something nice for someone else. It will cheer you up. So, I used my parents to make myself better :) Luckily, they didn't seem to mind.
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