Monthly Archives

June 2014

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Cherries Are A Superfood!

I’m home, and although I tried getting back to bed this morning (at Dan’s request) I can’t help it but hit the ground running. My parents will be here in a few hours to spend the night, as they’re flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent’s house. Because – for the first time – I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we’re back on the next ferry off the island so that we can make it home and rest. Isn’t it crazy how everything always bottlenecks? NYC, venom, cherries. Cherry season is my favorite. They’re so delicious! And really fun to eat. I mean, maybe not if you’re really proper, but I’m more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I’m a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which…

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Off to NYC

I’m headed for my tenth immunotherapy shot right now. I’m a little nervous since I’m barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I’ve been dizzy, and frustrated. I’m sick of having to deal with seizures. I feel like a prisoner in my own brain. You’d think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I’ve been isolated further. Instead of not being able to drive, now I’m trapped not only in my house, but deeper, worse, I’m trapped in my brain. I don’t trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels?  If you’ve read the blog from the beginning, you’ll remember the times I tried anti-seizure meds. I’ve been on three before. Each time they made me violently depressed, not able to leave the bed. I didn’t want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn’t even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can’t live like this. That’s what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn’t get seizures. Or at least it was a rarity. Not back before the tumor (that’s impossible), but back when we…

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UCLA Results

I finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally.  Flowers from Danny after the good news… My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient. For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I’d be happy to. Compared to the tumor, they’re just like gnats. Annoying, but I can live with them.

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Water-Only Fast = Seizures

Oh fudgeknuckles. I did it again. The thing is, you’d think I’d remember that I have stress-induced seizures, and here I was doing a several day water-only fast. And the whole point of a fast is to stress the body so that it cleans out damaged cells. Stress, the word is written directly in the description. Fool. I always think I can handle more than I can. But the payoff (a completely regenerated immune system) was so great that I had convinced myself that I could handle it. I believed that I could make it three days and that it would be great.  But that’s not what happened. About two hours after that last post, I was waiting for the iron to heat up to press Dan’s shirts, vacuuming the house to kill time, when I started to feel off. I told myself that everyone doing a water-only fast feels off, but I still made my way to the kitchen to eat the second half of my papaya. What I noticed first, was that my right hand and arm were icy cold, and I was having a hard time spooning the papaya meat. I thought to myself that I needed more fruit, that I didn’t feel well but needed something gentle on my stomach, but we didn’t have anymore. One trick from my doctors is to eat something sweet when you’re about to have a seizure, I guess it’s supposed to help slow the onset, or perhaps even lessen the intensity. When I have my stress-induced seizures I’m typically hypoglycemic (another reason that I’ve come to reason why I probably shouldn’t fast). I’ve checked my blood glucose levels a few times just before seizures, knowing I wasn’t feeling well, and it’s always in the 40-60 range. This time, after having…

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Day 3 Water-Only Fast

Oh man, I broke. I cracked. This morning I woke up with such strong hunger pangs that it was almost unbearable. I tried tricking myself with pint after pint of water. I sipped a few herbal teas, and paced around the house. I thought about going for a walk around the lake, but worried I’d get to the other end and run out of energy and become stuck. And it’s cold today, and rainy (finally!) so that seemed like a bad idea. Overnight, my stomach collapsed, and appeared inverted, concave. At least that’s how it felt to me. It was very uncomfortable, kinda painful even. I still made it several hours, but finally relented. I grabbed the most gentle option, my trusty new favorite fruit, the papaya. I only ate half, and discarded the seeds. Figured they would be too hard on the stomach. You can eat those gorgeous blackish green seeds. They taste like a combo of cracked black pepper and mustard. They’re a fabulous anti-parasite food. You can toss them into salads (yum!) or add them to smoothies to clean your system, it’s pretty neat. I love using unique foods for health. I figure there’s so much that we don’t know about the benefits of various food parts, but I’ll bet there’s a lot of healthy synergistic properties. So, technically, I failed. I missed my goal by 10 hours. I ended up on my water-only fast for 62 hours. It’s definitely the longest I have ever fasted, so I still feel accomplished. My plan is to remain on the fast to the duration, having only broken with that (delicious) half of a papaya. And man, I do feel better after having eaten a little. I imagine that the shorter than anticipated fast was still cleaning out some of…

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Day 2 Water-Only Fast

I have had bouts of hunger throught the day, but mostly I just feel great. I cleaned the house, and did laundry. I talked to a buddy for hours on the phone (a rarity), and laid down for a nap. I am amazed by the amount of time I spend on food related energy. What’s for breakfast, what’s for lunch, what’s for dinner, what do I need, chopping, blending, taking out the compost, washing dishes, going to the grocery store, thawing things, etc. I keep walking into the kitchen to get more water and am amazed by how clean the kitchen remains.  I feel a little disappointed that it’ll be over tomorrow night. It is all happening so fast. I can’t believe how much I am enjoying this experience. It sounds insane, masochistic even, and I would never have imagined this as an outcome, but there it is, I can’t deny it. Life is so much easier, the day oddly fluid, when you don’t have the punctuations of meals. No more decision making, no more worrying about macronutrients, no more worrying about blood glucose spikes or counting calories. It’s a mental vacation, and freedom from that judgemental voice always monitoring my food choices. I know I can never win anyway. I don’t want to downplay the level of difficulty, because it certainly has been hard, but it absolutely has wonderful benefits well beyond health. If I worked outside the home I don’t think I could manage, not with the seizure issue, but thankfully, I don’t. I have the safety zone of my little nest, and it continues to nurture me to health.

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Three Day Water-Only Fast

I’m 21 hours into a 72 hour fast. This is why…   You can also read the article HERE. If you’re more interested in the research study, instead of an article click HERE. There are all types of fasts out there; juice fasts, fruit fasts, broth fasts, minimal calorie fasts, you name it, there’s probably a fast out there. They’re a divisive topic with fervent stances on both sides. Some say they’re great for cleansing, fabulous for your health, and others say they damage your metabolism, that they mess up the delicate homeostasis of the body. As for me, I don’t know what I think. It seems like there’s both benefits and concerns. But this new research study that’s been splashing around the internet showing that fasting for 2-4 days can completely regenerate the cells in your immune system, got my attention and drew me in. To keep myself sane, I have been drinking pint after pint of water, and a smattering of herbal teas (which I chose because they’re are usually caffeine free and calorie free). This afternoon I felt well enough to walk the lake with Emma, but I’ll be surprised if I’m able to do it again tomorrow, let alone Friday. I’m just trying to take it easy and get through this. I have a friend who’s done a seven day water-only fast, so I keep reminding myself that three days should be easy. I mean, jeez, I’m almost a third of the way to the finish line. I’m definitely feeling hazy, but the growls in my stomach are oddly refreshing. It reminds me that I’m strong, and dedicated. Too bad my subconscious didn’t get the memo; I took a late afternoon nap and dreamed of juicy, chilled green grapes. On my walk today I glimpsed this…

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It’s All About Images

Good morning. Sorry I haven’t written in a week, I’ve been dealing with a horrible reaction to one of my treatments – cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I’ve since kind of gotten it under control. My friends didn’t believe that it was that bad (apparently I’m always saying that my skin’s broken out when I only have a zit or two – whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major. I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit. I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I’ve read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it’s what clogs the pores. Some people with even the slightest supplementation of B…

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Quite The Impression

“Postsurgical changes of a left parietal tumor resection are again noted, including a CSF (cerebral spinal fluid) filled resection cavity, confluent T2/FLAIR hyperintensity surrounding the cavity, a loculated extra-axial fluid intensity collection, and mild stable dural enhancement. The degree of confluent T2/FLAIR hyperintensity surrounding the cavity is not significantly changed from the most recent prior study and extending back to 2013.”“Impression: Stable resection cavity when compared with the most recent prior study, and multiple prior studies without new extension of T2/FLAIR hyperintensity or new nodular enhancement to suggest tumor.”And there you have it. Unless I’m reading it wrong, it’s excellent news. Now, maybe, finally, I can have a bowel movement and my acne will clear up. We still have to wait for UCLA’s confirmation, but we remain happily optimistic. Any time we see the words, “without new nodular” or “without new extension” we’re relieved. All day I was a zombie. I was lethargic, felt sick. Now I can breathe, and relax, and celebrate. You never know with these things. I’ve felt fine in the past and had tumor growth; I’ve been riddled with seizures and had no tumor growth. You can’t necessarily tell if you’re getting sicker. For now I don’t need to know more. I don’t need to think. The best day is today, that in this moment, just off the scan, we have tangible results about what’s happening upstairs. I can feel confident. I can’t wait to start tomorrow anew. A recharged soul ready for more research, or a run, or my ridiculous version of yoga – or all of it. I’m fresh again.  I’ll never tire in my awe for the amazing gift of this life. (A nasturtium from our garden. Enjoy him now because the poor guy’s headed into our salad tonight.)

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We’re Off

Headed to the records department in a few moments. I’m so nervous to read all of those terms, the removed, scientific way that they explain my condition. This all feels so dramatic, I feel silly, then am reminded that the results determine so much. It’s either a relief, or another trip to UCLA for more scans, more recommendations, more treatments, more effort. My favorite weekend treat yesterday, family… No more procrastinating, Dan’s here to get me. Here goes nothing. It has to be done.

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