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May 2016

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Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it! Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th. Ha! Makes me laugh every single time. I bounce from terrified, numb, then a little ambivalent, and finally total denial. That’s when I get my good workouts in, though, during the denial phases – so there’s always a silver lining.  Also, you can’t beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We’ll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it’s just waiting for results from there, and there’s nothing you can do about that. Might as well enjoy! Start Now, The Creativity Journal by Kate Neckel I haven’t convinced myself that the tumor has been growing again, even though that’s the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We’re working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I’ve been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I’m going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

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Grit: The Best Four Letter Word

A girlfriend just introduced me to the concept of “grit”. I knew the word well, although in my family it’s termed sticktoitiveness, what I didn’t know is that a curious woman is researching it. Angela Lee Duckworth has evolved into a scientist (she was corporate, then became a teacher, then went back to school to become a psychologist), and her work focuses on determining what is “grit”. She did an amazing Ted Talk, sharing what she had learned, and at that time she didn’t know if grit could be taught. Here’s the cool part, one day, probably not too long after her Talk aired, Coach Carroll happened to turn on the tv to the Ted Talks, and listened to Angela. The subject so moved him, especially the part where she wasn’t sure how to transfer or teach grit, that he immediately got in contact with her. It was fateful that Coach caught Angela’s Ted Talk (of all the days to turn on a Ted Talk, and for all the TT’s out there, it had to be this one), but it was grit, that drove him to reach out. See, Coach has been living a gritty life, full of purpose, and drive. With strength, and humility, and he’s been teaching it.  So tonight, my girlfriend invited us to attend the Town Hall Meeting at Seattle University to listen to Angela and Coach talk about what it means to have grit, how you can foster it in yourselves, how we can nurture it in our children, and in those around us. And good God it was powerful. And it was just what I needed.  You see, even though I’m not convinced I’m dealing with a recurrence, I still have cried quite a bit about this turn of events. At first, I thought…

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UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don’t know if I could stomach a fourth surgery, but before I can commit to that anyway, I’ve requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation. It’s confusing to hear conflicting results from two different centers, but that’s nothing new for me. At this point, I’m waiting for insurance to approve the scan. Next, we’ll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek. As always, I’ll keep you abreast. (That word always makes me laugh, so I had to throw it in there.) PS It’s my brother’s birthday today, so if you see him, please don’t say anything until tomorrow! xo

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Guest Blog Series – Anonymous

It’s the first Friday of the month, and that means GUEST BLOGGER! I am loving reading other people’s perspectives, their feelings, their experiences with their cancer and how it effects their daily life. When I received this article, I immediately started reading it aloud to Dan. We were both floored by her candidness, and her ability to get us chuckling in one minute, then nodding our heads in agreement, then cringing. Her writing is organic and true, and I love it. I’m very grateful to Anonymous and Lone Wolf for participating in the Guest Blog Series.  Jess, the guest column idea looks like a good one. I was completely absorbed by Lone Wolf’s description of her experiences, partly because she writes well but mostly because she writes well about shared experiences. Take the “tell your friends or not” issue. When I was diagnosed, I wanted to keep a low profile but it seemed to be hard for my family and against the advice I was getting from the experts. “Let your friends in,” one writer urged. “Keeping a serious illness under wraps is like trying to keep a beach ball underwater,” another noted. True enough.I ended up writing about my diagnosis and sending installments via email. Of course, once you start that, everybody knows – and they want to know more. Human nature is well-intentioned but it didn’t take me long to cringe at the eventually predictable conversations. Me: “Hey, how’re you doing?” Friend, “No the question is how are YOU doing?” There’s a certain look in the eye. It sets me apart. It makes me feel somehow targeted whether I feel like talking or not. Even whether I know who’s asking or not. Word gets around. Cancer is interesting. A grocery clerk at a local store invariably approaches me when I come in to ask how I’m doing. I…

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