Monthly Archives

April 2012

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Too Large? Too Dense?

Man. What a week. I’ve been a busy bee. Happy second anniversary to us…for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom’s birthday – yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It’s important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It’s incredibly confusing. For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm. What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn’t be interpreting the results in our meetings. Maybe they shouldn’t be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I’m not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged – but my family is persistent. I think most people don’t analyze their MRIs quite as deeply as…

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Musical Awakening

A friend posted a comment on the blog with a link to this amazing video. It completely made my day. It’s incredibly moving, and a wonderful treat that I can share with my friends who work in the memory center with me at the retirement home. Thank you for sharing this. It’s adorable. Enjoy! “Music imprints itself on the brain deeper than any other human experience,” says renowned neurologist Oliver Sacks, who appears in the film. Pairing music with everyday tasks such as having a brief chat or taking medicine can help patients develop a rhythm they can use later to recall the memory of that conversation or medicine. But it’s not just patterns and rhythms — music also taps into the brain’s emotional centers. “Music evokes emotion, and emotion can bring with it memory… it brings back the feeling of life when nothing else can,” says Sacks.

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Posenjak Fund

CANCER SUCKS. I just found out that my childhood friend’s husband was diagnosed with Acute Leukemia. Above is Allison, her husband Bryan, and their two boys. Apparently he fell while in the shower and his body couldn’t heal properly. That lead to a check of his blood and bone marrow, leading to his diagnosis. He’s currently undergoing two different types of chemotherapy at Virginia Mason in Seattle, and he’s in a lot of pain. Today just happens to be one of their son’s birthdays; what a rough time. Please send your prayers, and if you are so moved, please donate to their fund at Whidbey Island Bank or you could send a check to Islanders Bank, I’ll give more information below. The family resides in Friday Harbor – both having grown up on the island. They’re another island love story, something that’s close to my heart. Man, cancer SUCKS. I hate this kind of stuff. All we can do, I guess, is support them with our love, and help out in any way that we can. I just hate cancer. I was taught to never say, “hate”, but I don’t care, I hate cancer. Posenjak FundWhidbey Island Bank535 Market Street, Suite AFriday Harbor, WA 98250360.370.5641 Posenjak AccountIslander’s BankP.O. Box 909, 225 Blair Ave.Friday Harbor, WA 98250-0909360.378.2265

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Goin’ for “Stable”

In the picture below, you’ll notice more of Larry’s fresh garlic. It’s delicious, but my breath is ATROCIOUS. Luckily it’s just Emma and I today, and bad breath is her favorite. This morning, I woke up rested. I had the chance to debrief with Meghan over the phone last night. We laughed, and I cried a little bit, told her my fears, and if I heard correctly, I think she might have dropped a tear or two as well. All in all, I feel like this is going to work; the low doses make me feel so good. Also, this protocol is great – absolutely doable. I enjoy having my last meal at 4:30 pm, then cleansing my body with only water until pill time at 8:30 pm. It takes a serious amount of discipline, but I enjoy the challenge. Oddly, it makes me feel strong. I like routine, things that I can count on. I like knowing that antioxidants are for breakfast and lunch, that every day is the same. There’s no guessing, no worries, just the basics, every single day. I’m scared to see growth, albeit minimal. I worry that somehow I won’t beat this. I fear that I will continuously decline, and that this tumor will invade and take over my brain until I am no longer functioning. Those are my fears. And, if I look at the majority of cases, it’s exactly what happens. BUT, I have stopped Herman’s growth before, so I know that I can do this. I know that it can happen. AND, we did shrink the other areas of tumor. SO, who knows. We just have to stop Herman’s growth. I’m happy – not thrilled, like I probably should be – that the other areas are smaller, but as long as Herman…

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Eating Away at My Core

My adorable little nephew Well, I tried the higher doses of artemisinin, and it appears as if my body didn’t prefer it. According to research, there’s quite an individual variability of effectiveness. So, last night I started back on the low doses of Artemix. I’m back to doing the same protocol from Oct – Jan. I’m back in contact with the lead researcher at the UW who knows all there is to know about the artemisinin derivatives. He’s originally from India where he was a medical doctor, but he moved to the states and earned a PhD, and he now researches artemisinin. He is the most kind doctor and researcher, possibly in the world. I emailed him and discussed what happened with this latest protocol and he expanded on the reasons why the low doses work so well. There’s a 24 hour cycle where you eat antioxidants in the morning and at lunch, then refrain and stop eating in the early evening. You then take the artemisinin four hours after dinner with a cup of whole milk. Then you start back over in the morning with antioxidants. By utilizing the 24 hour cycle, you keep your body healthy and it cleans up any residual damaged cells, then when you take artemisinin on an empty stomach, the body creates more free radicals which allow the artemisinin to attack the cancer cells. The artemisinin works its’ magic while you sleep and when you wake up, it’s time to clean up all of the mess. I’m excited to be back on the low doses, it’s so much easier. It’s crazy, but I never liked the high doses. It made my innards hurt. I’m disappointed that Herman grew, but I’m not surprised. I had been noticing some mental deficits, nothing too serious, but things…

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Ahead of Ourselves

Yesterday, my adorable little niece and I created our morning green drink. We added a banana, and then stuffed the blender with handfuls of kale. Then, poured some water in the base and Isla flipped the switch. We watched the drink swirl, and as it chopped, I pulled orange flavored fish oil out of the fridge. I love young children because they don’t have any preconceived notions. She never said, “Gross! Fish oil?” like an older child might have. I unscrewed the top, sniffed it, and said, “Yummy! Smells like fresh oranges.” I passed the glass over to Isla, and she agreed. When the drink was finished blending, we poured it into a large pint glass, adding two tablespoons of the fish oil. We stirred it together and tried a taste. Isla loved it, so I poured a glass just for her. If you look closely in the photo above, you can see the green goo on the sides of her mouth. It’s always fun hanging out with Isla. She’s adorable, and hilarious, always willing to try new things. I’m incredibly disappointed that Hermie grew. The day before the MRI, Danny looked at me, smiling, and asked, “If the MRI is good, how many good MRIs will it take before we can make a baby?” Obviously, we were getting ahead of ourselves. That’s hard to swallow. Also, I should clarify from the previous post that my doctor does not agree that the tumor areas are less dense – that is just our opinion.

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Chubby Hermie

Other than the growth of Hermie, the meeting went relatively well. The oncologist listened to our protocol, but as he was nodding, we realized that our protocol doesn’t matter. I could have inserted the name of any treatment and he wouldn’t have cared. He had already looked at my scans and determined that little Herman had grown. He didn’t care about the three other areas which had visibly shrunk. We are incredibly bummed that Herm grew, but the tumor cells are less densely populated, and we’re looking into two new institutions for further review. We’re also going to contact the researcher who tackles artemisinin to see if he will comment on the scans. We’re hoping that he will expand on the typical growth patterns of tumors treated with artemisinin. In reviewing the subject, my family and I recall the possibility of the tumor expanding before it gets smaller. Here’s a couple of photos for your review.  Oct 2011 – Jan 2012 – April 2012 After the MRI, but before the meeting with my oncologist, I went to the records department and had a tech burn a disk of my MRI. We brought all of my previous disks from all of my other MRI’s and we reviewed them on my father’s laptop so that we wouldn’t be blindsided during the appointment. It also makes it easier to figure out any questions we might have. The doctor has no idea that we did that. He never knew that we had already reviewed the scan. I don’t think it matters though – he doesn’t have to know EVERYTHING. April 2011 – Oct 2011 – Jan 2012 – April 2012 After the appointment, we mailed off a copy of the scan to our friends who have already beat their cancer, then we headed to…

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Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don’t need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption. I’m anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can’t help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There’s no point in stressing about the results, and yet, it’s impossible to avoid it. In my semi-stressed state, I’ve been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor’s position in patient care. It has prompted me to reorganize my appointment. Let me expand. I’ve decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we’ve attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we’ve always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we’ve been doing, starting from the beginning. We will explain that we’ve been doing a researched based protocol. I’m going to tell him that the research has been conducted in the Bioengineering Department right…

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Prevailing

We have a beautiful courtyard just outside our front door. Danny and I have shared games of scrabble, cocktails in the dark with our neighbors, and on Saturday afternoon, in such a happy place, I stretched out with my new book, The Anatomy of Hope: How People Prevail in the Face of Illness. It’s a perfect find, just as I’m nearing my Thursday morning MRI. Here are a few of my favorite quotes from the book:       “It was my right to choose what I did. Even if I didn’t prevail – and I didn’t expect to – it was my only chance. I deeply wanted to live, so I had to fight. Then I could tell myself that I had tried, that I had done everything possible. There would be no regrets.”       His was a libertarian mind-set, one that placed the individual squarely as the ultimate arbiter of his fate. It represented a certain form of hope – the hope to be strong enough not to yield, to have the determination and the fortitude to fight. Another favorite….       When we feel pain from our physical debility, that pain amplifies our sense of hopelessness; the less hopeful we feel, the fewer endorphins and enkephalins and the more CCK (important regulation factor in response to anticipatory stress) we release. The more pain we experience due to these neurochemicals, the less able we are to feel hope.       To break that cycle is key. It can be broken by the first spark of hope: Hope sets off a chain reaction. Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain. One more, which happens to be my personal favorite. I wish my oncologist and his team would read this…     …

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