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Don't let anyone else put limits on your life. You are not a statistic. People live long lives, even with cancer, so don't give up!

 

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Early Call

With a 1:30 am wake up call, I’m in bed and it’s just past seven. It was easy to head to bed since I can’t eat much anyway because of scan restrictions. No dairy, legumes, animal proteins, nuts, seeds, soy products – I can’t even remember all the restrictions so I focused on what I could eat, which is fruit and veg. I’m not hungry though, just physically exhausted. I can barely keep my eyes open because last night’s sleep was terrible – wide awake until 3:00 am. I had been fine for the last few weeks, my mental state has been a solid 8-10, but last night it hit me. It was inescapable. We have a scan in the morning that will show, with more than a 80% accuracy between necrosis, and recurrence or scar tissue. It’s a brilliant tool to have, but one that leaves little doubt, and really no denial either. At first, I thought this could go two ways. Tumor or no tumor. Then I started reminding myself that I won’t die of this tumor tomorrow, or next week, or even, heaven forbid this year. We’re playing the long game. It’s exhausting, but as you get to know the strategies, and learn from others, there are hundreds of thousands, maybe millions of different combinations of treatments. I’m certainly not at the end of my rope, even though, sometimes it feels that way.  I don’t really want to do the scan because I don’t want to have brain cancer, but since I do, I might as well get some answers. I have no expectations; I have no premonitions. I have hopes that this blob has a maxSUV of under 3.0 (which to my understanding will not be considered recurrence), but there are factors out of our control, variables…

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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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UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There’s a venus abnormality that they’ve been watching, but I’m not too concerned about it. All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I’ve been eating horribly, including a 20 lb weight gain – pure sugar. I’ve always equated excess calories as food for the tumor so the fact that there isn’t obvious tumor growth is a freaking miracle. Apparently diet isn’t the end-all-be-all of cancer growth. (I’m sure it matters, but who knows how much, and for which cancers, and which people?) I’m obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it’s fun, not because I’m scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being “heathy”, even though cancer has taken so much from me. From us.  It’s really hard to be fearless in this situation, and very hard to not get stuck. It’s time for me to stop punishing myself for success, for my good fortune and hard work. I don’t know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place,…

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Seizure Help

Hey Friends,Here’s the deal, I talk to a lot of brain tumor patients, and caregivers, about seizures. And although none are the same, there are often similarities, and definitely tricks. Even though each person’s situation is unique, there is almost always overlap. Last night I received an email from a caregiver about his wife’s seizures – a GBM patient. She switched from Keppra to valproic acid and vipmat several months ago, and had been fine, then twice in the past week she has had seizures. Each time she is forced back into the hospital is a major setback. She loses more weight (her weight is hovering in the 70’s ), and becomes weaker. In corresponding, I asked him if I could bring it up for discussion on the blog, hoping that people could share their successes and failures to help troubleshoot. I feel bad because I’ve talked to so many of you about these issues, the side effects, the trial and error of seizure drugs, the specific triggers, but I can’t remember everything that you all have said. Would you be so kind to share, even anonymously? I know it would be a huge help.I remember when a caregiver told me that he gets his wife’s blood levels checked regularly to make sure that her seizure meds are at the correct levels, not too high nor too low. When I heard that I was floored. I had no idea that your blood levels could be checked, or that every body metabolizes drugs differently. That it doesn’t have to be trial and error, and it doesn’t have to be a shot in the dark. The more we talk the more we know what to ask for, and how to help ourselves.So if you could please share and answer as many of these…

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Four Days of Freedom

The MRI is on Saturday, and with it comes phantom headaches, throbbing in the tumor cavity, dizziness, ravenous cravings, nausea, sweaty nights jumping up from bed. The usual paranoia. I’ve been hiding for months, pretending I never got diagnosed. Pretending I could do whatever I wanted, eat whatever I wanted, drink whatever I wanted, live the way I wanted. And now I have to face the reality of whatever is going on in my brain.  Which is nothing.  (Right?) MRI is scheduled for this Saturday. Guess we’ll find out about deez noodles. A video posted by Jessica Oldwyn (@happy_coconuts) on Apr 11, 2016 at 4:18pm PDT ………I still don’t want to do it.

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Guest Blog Series – Lone Wolf

Several days ago, a girlfriend shared a brilliant idea with me. She said, “What about guest blog posts?” It came as a solution to share other people’s stories since I get sick of writing about me. You’d normally never hear about any of these folks because unlike me, there are people who fear repercussions from being honest about their diagnosis. And sadly, from the stories that I’ve heard, their often not wrong. Once we know something about a person, we can’t un-know it. And that becomes an issue regarding employment; our stories change how we are viewed.  You guys know me, I have no filter (or a very weak one), and I just speak. But there are times when I’ve regretted writing this blog. It’s rare, but it happens, and it’s because I know that the interwebs are eternal. If I apply for a job, there is no hiding my story. I can’t disguise what I’ve gone through, the deficits I deal with. For certain lines of work, it’s unappealing for employers to hire cancer patients, especially depending on the specific diagnosis, and prognosis. It’s just a fact. Anyway, I reached out to one of my tumor friends, one who is living in solitude with her diagnosis.  My goal in sharing these stories is several fold. I want patients to have an outlet, to express themselves anonymously. I want to give a voice to different stories so that people learn the dynamics of disease. I wish life was easier, that we could all share our truths openly, but if we can’t, at least we can have a format to do that here. I have no idea if there will be others who would be interested in sharing. I really hope there will be more patients, caregivers, family members, friends, etc….

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Astroturfing

My brother sent me this 10 minute talk by investigative journalist Sheryl Attkisson and it changed my life, and scared the shit out of me. As a person who avidly researches, this floored me. I understand that information is widely manipulated, but I had no idea that it was this bad. It’s terrifying, and disgusting, and it makes sense. I hope you find it as interesting as I did, and half as disheartening. Think again about what you think you know, and who you think you can trust. “In this eye-opening talk, veteran investigative journalist Sharyl Attkisson shows  how astroturf, or fake grassroots movements funded by political, corporate,  or other special interests very effectively manipulate and distort media messages.” So what do you do? How can you protect yourself? How do you know what to believe? How much further can you really get with a discerning mind if there’s so much conflict of interest, and little disclosure? Sheryl has some tips at the end to help you analyze distorted media. This is a major issue for me with research studies. There are drug companies that fund studies, or they donate [endowments] to [medical] schools within colleges. It’s blatantly a conflict of interest. Everything is so tainted, so tangled. Where’s the truth? How is it that our knowledge base that is our researchers, and scientists are so exploited? You could even go as far as say they’re bought. It’s getting uglier and uglier, and I don’t see how people can wade through the sludge to protect themselves. It’s just gross.

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