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chemo

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My Biggest Medical Asset

I have something that will help the cancer patient in your life, something that has been helping me for years. Why didn’t I think of sharing this sooner? I’ve eluded to it, even directly recommended it, but I’ve never included (that I can remember) a true description with photos. I’ve been sharing this info one-on-one with patients and caregivers, but for whatever reason, it didn’t occur to me to officially write something on how I stay organized in the wild wild world of cancer. Any large accordion style briefcase will do. The more slots, the better.Spring for heavy duty, this thing will take a beating with the amount of use it will get. I get copies of every medical record, and I carry this with me to all of my appointments.I have saved many a headache, and lots of time, during meetings because I have my own copies of my various pathologies, radiology reports, etc. This is a mini case that has its own slot in the big case. It holds every single one of my MRI and F18-Dopa PET scan disks. I’m able to pull out any disk that I need, in a matter of seconds. It’s astounding how helpful these disks have been in appointments.It has been common, in my experience, that new doctor appointments often do not receive my records in a timely fashion. By carrying all of my document and disks with me,I don’t get held up with delays or partial information from my doctors, because I’m able to provide the data for review and assessment. This briefcase has been worth its weight in mom’s cookies. Recently, at a new neuro-oncologists’s meeting, the doctor even asked what I do for a living. I replied, “This.” He responded by saying, “Want a job?” For a woman who has disabilities, who…

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Abbreviated 18f-DOPA PET Results

It’s a long story, and I’m pretty pooped, but here’s a basic overview. The “scan was concerning for active disease”. It really isn’t the biggest deal, it could have quadrupled in size. There’s still questions surrounding imaging possibly being effected by treatments – not likely, but I won’t rule it out, I’m always hopeful. We’re trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I’m surprisingly pleased with the results. It’s not the best news. As our neurosurgeon says, “It’s trending toward recurrence”(there are two “nodules” they’re watching). She wanted surgery, but we asked for a little more time. I’m not ready for the risk. I’m too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination. Apparently even my happy kitty socks couldn’t save the day, but they made me and my TSA pat down lady happy, so there’s that. Sorry that I won’t be letting people know individually, but as you can imagine, it’s overwhelming to reach out to all you lovely friends, I’d be on my phone for hours. I’m hoping to give a better explanation about the situation in the coming days.

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Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that’s the story of my life. My mantra should be, “Look again, there’s probably something obvious that will make you feel better.” To preface, I have to explain that I don’t sleep well. Actually, I’m a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it’s worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I’m on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it’s my right leg, and I snap out of bed afraid I’m about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I’ve been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn’t the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I’ve already gone against doctor’s wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I’ve done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I’m the only one who can control the thoughts in my brain. I choose to allow fear in,…

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Navigating, Always Navigating

On Friday, I was walking between doctor appointments and passed a bush of wild-ish roses. The smell was intoxicating. I find that since I don’t drive, I notice so many beautiful things each day, things that I wouldn’t have noticed if I was whizzing by in my car. It’s a much slower pace of life, and it’s a gift.  I’m completely overwhelmed lately. I have a wonderful new primary care doctor, and a fabulous naturopath, but I’m still reeling from all of the information and reality of my new treatments. Suddenly, my cancer seems painfully undeniable. I’ve been galevanting around Green Lake, taking care of myself with the low doses of artemisinin and diet, and I thought that I was really fighting Herman, but compared to the other cancer patients that I’m meeting, there’s so much more that I could do. That I have to do, and, all of a sudden I feel catipulted into the cancer world. Before, I realize, I had one foot in and one foot out. There are so many treatment options, and I need to exhaust them all, all at the same time. In about an hour I’ll jog to a bus stop. By jogging a couple of miles, I’ll avoid having to take two more busses. I’ll head to my naturopath’s office to start the first high dose vitamin C IV. On Friday they had to draw blood to make sure that my body could handle all the things that they’ll be injecting. I’m currently downing an intense sprout smoothie which should work synergistically with the IV treatment. It’s all about timing and combining, so I’m adding various things to increase the effectiveness. It’s enough to make a person crazy. I’ve just finished ordering some various equipment to create our amazing chemo drink, and…

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Armouring UP

This photo makes me laugh. I was trying to hand over my phone to Danny so that he could take a photo of Mount Rainier. It sums up my life at this point, completely sideways. I have been exhausted, spinning around in circles, trying to take care of my body, rallying the troops against Hermie. I’m in a regrouping mode. Last week, I realized through further research, that I’ve been incorrectly doing the whole artemisinin protocol. Apparently, cancer cells do most of their reproduction during the night. The highest cell division between midnight and 1:00 am. My researcher who told me to stop eating after dinner, and walk in the evenings for a few hours before pills, never said a time to stop eating. He just said, refrain from eating for 3-4 hours after dinner, then take your pills and go to bed. So, being the old soul that I am. I decided to stop eating by 4:30 at the latest so that I could get to bed early. I like to be tucked into bed by 8:30 pm. Well, guess what, I’ve been sabotaging myself. The point of this low dose is to ingest the pills between 10:00 – 11:00 pm so that the artemisinin is at its most effective state during the replication of the cells (12:00-1:00 pm) – that’s when the cancer cells are most vulnerable. The artemisinin has a half life of about 3-4 hours, so there was still SOME artemisinin getting through, but the doses would be incredibly low and quickly tapering off. Damn it! I’m always effing up things. Usually, when it’s not life threatening stuff (like when I put my foot in my mouth), it’s hilarious. But in times like this, I just have to roll my eyes, and cringe. I guess it’s fitting that my mother’s…

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Misery Loves Company

Beautiful blooming tree in front of the Green Lake library It’s gorgeous in Green Lake today. It’s sunny and the air is crisp. I just jogged the lake with Emma, stopping by the library to pick up a book that I had on hold. Things have been great, just chugging right along with the protocol. I’ve made some changes and decided to allow antioxidants to my Monday-Wednesday routine. Those are the high dose days of artemether, and I’m supposed to limit my antioxidant intake because antioxidants clean up free radicals in your body. The free radicals are what are needed for the artemether to arrive into the cancer cells. Anyway, it’s a long story and I don’t completely understand it, but what I do understand is that my body needs an apple or a hot tea here or there – and some raw garlic. I’m hoping that allowing my body to have antioxidants on the high dose artemether days won’t hurt the progress. Guess we’ll just have to find out in April at the MRI. I just can’t live off of bland, boring, nutrient sparse foods. I crave tea more than I crave wine. Is that crazy or what?!? It’s true though. Never thought I’d say it. Other changes in my life include the removal of my copper IUD. I had no idea that copper causes angiogenisis (the development of new blood vessels), which is “a fundamental step in the transition of tumors from a dormant state to a malignant one,” according to Wikipedia. Ooops. Thank you to my brain tumor friend Jessica for pointing that one out. Jeez. Seriously, I am so glad that I post so much personal information on this blog because ya’ll keep helping me get healthier and healthier. There are so many things out there…

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Removing The Unknown

I’m still bald-ish with the gnarly scar carved across my head. The scab is slowly disappearing, and things are definitely looking up. Ever since this debacle started, specifically when I shaved my head, I was faced with the option to leave my head exposed or to cover my head with a scarf, hat or the possibility of a wig. When I’m home, or with close friends I leave my head exposed, but for the longest time while I was in public I left my head covered. I was covering my head, not for myself, but for those around me. I was trying to avoid the stares and the uncomfortable reality about my situation. I also didn’t want small children to run in fear (although the only child that’s actually seen my head was more concerned about my “owie” and wasn’t afraid in the least). I’ve noticed that people stare while I’m wearing hats or other covers. They can already tell that I don’t have much hair, and eyes just naturally gravitate toward my head. They don’t mean to stare, they’re just curious. They probably don’t even mean to keep staring. It has to be confusing that I still have my eyebrows and eyelashes, so they know that I’m not going through chemo, yet I don’t have much hair and there’s definitely something going on. As I’ve been grappling with this head situation I’ve been increasingly comfortable exposing my head, and I’m starting to walk around in public without hats, or scarfs. Without a cover on my head, people know that what they see is what they get. They can see that I’ve had some sort of traumatic surgery on my head and then they move on. In my own (very unscientific) study I believe people are more comfortable with the…

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Left Awake Craniotomy. That’s me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W. We’re all in shock right now, and I don’t even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee. I guess I’ll just start putting this all down on “paper” and you guys can help sift through the details. Sorry for the disorganization. On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I’m put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they’re cutting/removing. They’re trying to make sure that they don’t remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won’t incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours. My…

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