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.

Time To Work

Started playing with my pills this morning. Not exactly the beer can towers of college days. Yesterday, at the gym, I weighed myself. YIKES. In January at my last MRI I weighed 144. Now, I weigh 150. I guess I need to take this a little bit more seriously. It was quite the wake up call. Dan and I talked about it for quite a bit last night. We are very strict right now, this whole week I'm on a plant based diet (other than a glass of milk each morning and evening for pills). We're going to take Saturday off to celebrate Saint Patty's day with friends, but come Sunday we will be back on the whole foods diet of months past. We will not be cheating again until after the MRI. It's been a lot of fun, but it's time to get back to business. I have to say, when I stepped on the scale and had to move the little black weight over further and further to the right, my stomach pulled into knots and my sweat pores started tingling. I was in shock.

Oh well, I can get this back on track. I love taking a week or so of only eating plants. You can eat whatever you want, as much as you want. It's actually a lot of fun. That probably sounds crazy, but it's fun to change it up. Damn. 150? Ugh. Jessica Lynn. I'm not so upset about the numbers necessarily, it's more the fact that any extra weight feeds Herm. That's always the kicker. But, each day, each meal, I decide what I'm going to put in my mouth and each step is a choice. I'm ready to conquer this next month and see what's going on in my brain at the MRI. I have to relax and play a little, but now it's time to work.

Watercress & Wunder Runners

Recently, a fellow brain tumor fighter sent me all kinds of information on Artemisinin, sulforaphane and sweet wormwood. The research is incredibly promising, and it looks like I will be starting an alternative treatment based on the research. The best part, according to the research though, is that I had already been including a lot of the main foods that cause the death of the brain tumor cells. A lot of the research is relating to sulforaphane in the brassica family, and sweet wormwood. Although I have not been taking any supplements, I have been eating a diet highly enriched with the brassica family. In fact, I just ate my breakfast of an Omega 3 organic free range egg (it gets the extra omegas from flax in the diet), sprinkled with turmeric (a healthy teaspoon), placed on a slice of sprouted bread which was stacked high with watercress leaves (brassica family) and sprinkled with a clove of diced raw garlic. Needless to say my breath is ripe, but my macha green tea is helping calm it down.

My Little Watercresss Plant

I bought a living watercress at my PCC the other day. I've been picking off the leaves of the poor plant every time I walk past it. It's delicious! It's spicy, and helps disguise the garlic, which is a plus.

I don't always eat so wonderfully, for the record. I have to be honest. Last weekend was our third annual Oktoberfest Marathon Relay, and it happened to fall on a double birthday weekend. The birthday girls were Meghan, and Jenny. So, of course, I brought two dozen organic cupcakes (gotta love that it's all organic ingredients, it makes it sound healthier, but the truth is that they were loaded with scrumptious mind altering SUGAR. Yum!). I didn't make them, which is probably good because I would have eaten my weight in icing. As it was, I ate all kinds of delicious crap. It was fun! And then on Sunday night Danny and I realized, that once you get the taste of blood it's really hard to stop. The cravings are tricky, and it's so easy to go get crapy food. Crapy food melts in your mouth then hits your stomach like a rock. Healthy food has crunch and within moments you have more energy and you feel better about yourself. Even knowing that, it can be really hard to forgo the instant gratification that my tongue is pleading for.

Here's a photo of our group. I'm so proud of everyone. This marathon relay was my dream, it's my little baby. I always wanted to get a group to celebrate running and friendship. It's just a very, very happy thing for me. I've got a great group, and I can't wait for next year!! I guess you could say that my only long term goal right now is to be healthy for next year's race! Is that weird? Maybe I should have a different goal. I guess it's the only long term goal that I have because I'm always afraid to plan too far out. It's also the only thing on my calendar that's a year away. I can train for it too, which keeps it easy to use as a long term goal. It's concrete, and I like that. Anyway, here's the fabulous crew......

Operation Grab-A-Stein III

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