Bibliosphere

 Guess what! My role with CureSearch has officially started and we held our first event recently! We went to a holiday market (hosted by the French community, a surprise to me) and I was able to share about our different projects and opportunities with CureSearch. I'm excited to see where this takes me next!

  It seems odd that four years have passed again, since I last checked to see if my vote had been counted. When it's a local or state election, I hope for the best, but presidential? Even though I know which way my state will go, I vote, for every race, even pulling up the judge reviews to carefully select who I wish to retain. If you are eligible, if you can, please do vote. While the deadline has passed to register in some states, many allow same-day registration, like Utah. Learn more from Vote.org .

I 100% meant to publish this October 1, but I was waiting for big news. I have that, I just can't share it quite yet. But suffice to say, it's going to be different. It's going to be ok, but it's going to be different.  I'm looking at a lot of changes. Some of them at work are coming into a more supervisory position, potentially more hours, and potentially changing a lot of processes. Now, work isn't the only area where there's changes. My home life is also going through changes, both related to and unrelated to work. Mostly I'm tired at this point. I'm trying my best, trying very hard, and there's a lot going on. As I juggle all of this, I'm unsure what the future will bring for many areas of my life.

 Heya, so, I know I don't have a huge following, but I'm asking for some help for an organization near and dear to my heart. You see, childhood cancer is not the only cause that I am passionate about, though it is up there. Mental health is also super important in my life, as the main thing that I seem to shape my life around. NAMI Utah is in a financial situation, and they need help. It's hard enough for an organization to be in that position, harder still to admit that to all of the people it serves (in a series of emails sent throughout today). I feel a huge amount of empathy and respect for any organization that can admit this. So, if you are so inclined, a donation would be greatly appreciated: https://www.namiut.org/get-involved/donate-to-nami-utah. NAMI Utah is a 501c3 nonprofit and donations are tax deductible.

 So, as of September 29, I have read 71 books in 2024. Twenty nine were in print, 42 audio. Five were in Spanish, the rest English. This year I've been learning that it's ok to put down a book you aren't enjoying, even if you never come back to it. I've put down a number of books this year, because I want to enjoy reading, and books that challenge me in a negative way are not a way to spend my down time.  The top books from August & September were (out of 16 finished during this time): The Teachers by Alexandra Robbins - This took me about 6 weeks to read due to... life stuff. But, it was well worth it and when things calmed down I finished it pretty quickly. Con el corazón abierto by Dalai Lama XIV - This one is important to me because it's the first book in Spanish that is for adults that I finished. Didn't understand all of it, but I did finish it. Owning Bipolar: How Patients and Families Can Take Control of Bipolar Disorder by Michael G. Pipich - I h...

Though extravagant, I subscribed to a produce box this August. I was convinced at a farmer's market stall, and I was skeptical. But, in all honesty, picking out fun and funky veggies has been an amazing source of joy these past couple of months. I've received 3 boxes so far. All have had something delightful. I couldn't even tell you my favorite veggie or fruit I've tried. Candystripe figs were a treat for someone who really only eats dried figs. Delicata squash has been on my "to try" list for ages (thanks cooking shows).  I'm very excited for these next couple of weeks too! I'm trying a whole bunch of things: burdock root, brown beech mushrooms, and honeynut squash. I also have ordered some tiny white turnips, some very interesting looking kiwi berries, and a few other goodies.   

 From ACCO, did you know, 1 in 6 children diagnosed with cancer won't survive more than 5 years after diagnosis. When I was younger, it was 1 in 5, so at least we're going in the right direction. But 1 in 6 is still far too many.

The Sarcoma Alliance has shared a number of childhood cancer sarcoma facts this September already. Here are a couple that I think are especially worth noting.  

 The CureSearch walk was a good experience this year. I raised $250 from friends and family, and I did get a t-shirt (which, I may add, is pretty cute). The walk was smaller than what it was, but it was still a good showing. I always like seeing the nurses from the children's hospital there, showing their support. While the walk didn't raise as much as they wanted, I think it was still a good thing.

 Here we are, September again. September marks the first day of Childhood Cancer Awareness Month. Last year, I was able to post 2-3 times a week, the whole month. This year I won't be able to. I do want to make a goal of at least one post a week, so that I can continue spreading awareness about childhood cancer. I will make one last plug for my CureSearch Walk fundraising. I'm super excited to be back this year with my team, though it may be a small team.  Donate Here  

 I never know the right way to start a post. Hello? No intro, just go? Greetings to the 4 consistent readers that I'm probably mostly related to? Anyway, I'm here. I don't know if I'm back, but I'm here right now. My summer has been probably the toughest I've ever had. And that includes both 2020 and the summer I was camp director, both exceedingly difficult summers. But I truly think this one was worse. Everything has been a mess, personally, professionally, health... ally? I don't want to get into specifics for a number of reasons, but I'm going to be picking up pieces of my life for a while still. I've got a very difficult decision to make soon. Difficult indeed. And I'm hopeful for the future, but I'm not looking forward to pulling the trigger on this decision, because there are things that I will have to pay for in any way I go. And also because of a great deal of uncertainty surrounding it. In picking up my life again, I am trying some ...

 This is going to be an emotional post. I am processing something I don't even want to tell my friends and family (so if you're reading this, I'm sorry I didn't tell you, but please do tell me when you read this). This week, I didn't get an answer I wanted. After about 6 wonderful months of relief from a decade of anxiety and depression, things got worse again. Around last September, things got worse. Upon reflection, what really started it, what my first and only infection with covid-19. Since then, I've struggled with what I've come to know are many of the symptoms of long covid. I didn't think this at first. First, I assumed I was tired, that my mental illness had come back, that I wasn't caring for myself properly and it was my fault. Then it was work stress that I blamed, the things I was asked to do, and the hours that I worked. I said, this will get better, if I can force myself to do all the right things. Well, I've been doing all the rig...

 So, as the title says, I have been going on walks when it's 95 degrees out. Yes, 95. We had a couple of heat waves here, reaching record breaking 106 F. But, except for the very hottest of days, I have still been going on my walks, for the most part.  I have had a rough go this spring and summer due to a medication change and further issues with that. My life has been unbalanced, but I'm working on getting it back in shape. I do a lot of goal setting, managing a lot of the care items that people can just do, on their own, without a bunch of reminders. Or maybe things they don't even need, but I do.  I have a great support system, I really do. My friends are wonderful, continuing to invite me out when I've said no, texting encouragement. I love them all. I'm doing my best and it's going to get better. In other news, I spend a lot of time reading, surfing the internet, and, of course, working. I am running my first bilingual council program (an overnight, no less...

 A while ago, I started making niche memes for my camp blog. I haven't in a while, but recently I was inspired to make some for the HOA.  I think I'm funny.

 I feel like this has been said many times, but as someone who has struggled with mental illness for years, it's so important to have things to do with your hands, things that are not online. I know that the internet and technology are safe spaces for many of us, places you have a home in. I'm not denying that.  But, if you are struggling, I am gently suggesting... hobbies. I love my hobbies, but sometimes put them down and forget to pick them back up. But recently I've been trying to pick them up again. I am big on visual art, but I also knit, sew, and garden. I will go to the library for craft night, and have made many a creation, just like I did for hours in my bedroom as a tween.  Mental health is complex, and it's hard to get into hobbies, especially with perhaps some shame of having put them down (I have struggled with this). But they're so worth it. And you're worth it too.

 When I was younger, I read constantly. I was the kid who got caught with a book hiding under their desk, reading while the teacher talked. Slowly, as I got older, I read less and less. I'm not going to blame this entirely on technology, but the biggest drop off was when I got a smartphone, and instead of reading while I waited for lectures to begin, I browsed Instagram or played games. I also struggled more the that I had to read those intense scientific articles, almost burning out my desire to read for pleasure. I know I've talked about this before, but it was a sad point in my life when I struggled to read a 150 page book in the three 3 week check out and renewal periods at the library, when I grew up devouring 500 page books in just a few days. But anyway, I am back into the swing of things! I usually have 1-2 audiobooks and 1-2 print books going at once, so I'm never getting bored of the same topics. I've also started doing audiobooks in Spanish, and I'm tryin...

 While I often hide what I'm going through, I struggle with a number of chronic conditions that impact my daily life. They are disabilities, hidden ones, but disabilities all the same. I think a lot of people don't realize that there are many more of us with hidden disabilities then we let on. In fact, disabled people are the largest minority in the US.  So I want to remind y'all that July is Disability Pride Month. I find it difficult sometimes, accepting myself and my limits, and especially having pride in being myself. But I'm working on it. So this Disability Pride Month, take a moment to think about your views on disabilities, as well as what you can do to increase accessibility.

 One of my goals for this year, was to make a creative project at least once a month. Yes, that's how low the bar was, based on my past couple of years. Any kind of creative act counted, writing a poem, drawing, crafting, anything. But I had to make it. After several months of feeling better with the act of creating, I decided it should be once a week, and now it's twice a week. I know this is a stretch for me, but I think it will be worth it. Right now, I'm really into visual journaling, getting out emotions and feelings through art and written word. I use my giant 18x24 sketch pad, purchased on a whim years ago. But it works. Oh does it work. It's less drawing for the most part, but it's nice to express myself through it. I'm also working to get back into French horn. I have already let me neighbor know. It's going to be a much longer road on that.

 I've been busily working my way through audiobooks in June (and some print books too). Here's what I've been reading: At Blackwater Pond by Mary Oliver (audiobook) - this one was special in two ways. One, it was my first audiobook of poetry and two, it was read by the author. Thrive: Finding Happiness the Blue Zones Way by Dan Buettner (audiobook) 9 Things Successful People Do by Heidi Grant Halvorson - I read this in one sitting at the library The Blessing of a Skinned Knee: Using Jewish Teachings to Raise Self-Reliant Children by Wendy Mogel  - I read this on a recommendation, and it was really interesting. I know little about Judaism, but I thought it was a good book. Atomic Habits: An Easy & Proven Way to Build Good Habits & Break Bad Ones by James Clear (audiobook) - this one I waited for a while, because it was the most popular book at the library system last year, and it had a loooooooong hold list. Superlife: The 5 Forces That Will Make You Healthy, Fit, an...

 After a 9 year hiatus, I am pleased to announce that the Rhabdo Warriors are back at it for the 2024 Salt Lake CureSearch Walk. I am excited to slowly get back into the community, in ways that make sense for me. While volunteering for other CureSearch programs didn't work out, I am excited for the walk and for making my team. I've even roped in a friend! If you would like to donate to my walk profile, click here . Any donation is helpful! Together, we can end childhood cancer.

 July is Sarcoma and Bone Cncer Awareness Month. Sarcomas account for cancers in a variety of locations and tissues, and are divided into two categories: sarcomas in the bone and sarcomas in soft tissues. From the Sarcoma Alliance : "Sarcomas are cancers that develop from bones or soft tissues, such as fat, muscles, nerves, and more. Because bone and soft tissues can be found nearly everywhere in the body, a sarcoma can start in any part of the body." Sarcomas can originate anywhere in the body, with 60% beginning in limbs, 30% in the abdomen, and only 10% in the head or neck. Sarcomas are rare in adults, accounting for 1% of cancers, but are the cause of 15% of childhood cancers. There are also ways to get involved! From the Sarcoma Foundation of America, check their list here , or see some ideas below: Wear yellow on July 12 Order a sarcoma yard sign Check out their social media toolkit

 Exciting news posted by St Baldrick's: the long-term study for the biology- and response-based algorithm on the Children's Oncology Group study ANBL0531 for intermediate risk neuroblastoma is complete and the results have been officially published! In the long-term study, a ten year period, the overall survival rate was 95%, with an event-free survival rate of 82%, which is fantastic! Read the summary here .

 So I just went camping last weekend and I usually camp with my mom or alone. But this time I went with a friend. It wasn't perfect, but it was still nice to have gone. We made s'mores, enjoyed a traditional snack of beef jerky sticks and cheese, and made it through a 43 degree night. Yeah, in June. That's the mountains for you. But overall, I'm really glad that we went. 

 I have great news! February might be over, but you can still donate to my St Baldricks Fundraiser. In fact, you should definitely consider it, because they're upping the game, to 50 miles in June. I've gone back and done the math, and I have already walked over 30 miles! Perhaps this will inspire you to donate, or even start a fundraiser of your own! Click here to donate!

 I want a sign on my door at work that reads: "I'm trying my best, please be gentle with me." I want people to know that, even though my best no longer looks like it once did, it's still my best, and the best that I can do right now. Because I am suffering some of the worst symptoms of burnout I ever have. I am exhausted, emotionally and physically, and my executive function is trashed. I actually tossed out the idea of autistic burnout about a month ago, to my therapist. She said that it sounded plausible, or we agreed that it did. Autistic burnout is different though, from my burnout now, although honestly it's probably a combination at this point.  My brain does not work like other brains. All of my mental health conditions, my neurodiversity, make extra challenges in my work and life. The extra stress is extremely difficult, and I struggle with it on a daily basis. But it's invisible. I show up to work (most days) and I make an effort. I am accomplishing a...

 I love to do a little book report on what I've been reading. May and June were good months for audiobooks. I have taken a liking to listening to them not only while I walk, but also while I work, or in place of Netflix (which I do mostly just listen to). But here are my recent reads: The Lost Family by Libby Copeland - really interesting, had some points I hadn't considered An Abolitionist's Handbook: 12 Steps to Changing Yourself and the World by Patrisse Cullors (audiobook) Thanks a Thousand: A Gratitude Journey by A.J. Jacobs (audiobook) - this one was short, a little goofy, but a fun one 50 Ways to Rewire Your Anxious Brain: Simple Skills to Soothe Anxiety and Create New Neural Pathways to Calm by Maha Zayed Hoffman, Catherine M. Pittman (audiobook) I Am Malala by Christina Lamb, Malala Yousafzai (audiobook) - I actually did not know much about Malala's story, or about the situation in Pakistan, so it was interesting Moonshot: A NASA Astronaut's Guide to Achiev...

 The other day, we had a staff work day at the camp I used to work at. I love that camp so much. It was a lot of work, but we did a lot. I was actually a team lead for this, supervising five of my coworkers to clean the basement of our lodge. We worked slower than we really anticipated, but that area looked so good. I am always feeling anxious that I'm not doing a good job, that I'm being awkward, that everyone is annoyed/upset with me. It's something I've lived with pretty much forever. But, at the end of the day, the HR director asked me to come over and told me that I had been a great leader that day.

 I recently listed to a book of poetry as an audiobook, read by the author. It was one of my favorite authors, and one of my favorite poems was included.  Who made the world? Who made the swan, and the black bear? Who made the grasshopper? This grasshopper, I mean— the one who has flung herself out of the grass, the one who is eating sugar out of my hand, who is moving her jaws back and forth instead of up and down— who is gazing around with her enormous and complicated eyes. Now she lifts her pale forearms and thoroughly washes her face. Now she snaps her wings open, and floats away. I don't know exactly what a prayer is. I do know how to pay attention, how to fall down into the grass, how to kneel down in the grass, how to be idle and blessed, how to stroll through the fields, which is what I have been doing all day. Tell me, what else should I have done? Doesn't everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life? Ma...

 June is Cancer Survivor Month! We are so proud of all of our survivors, and are so glad that they get to grow older and have the experiences of adulthood. My brother is a 17 year survivor of rhabdomyosarcoma. My dad is actually also a cancer survivor of around 25 years, so we have two long term survivors in my immediate family. I am grateful that both of them have made it to this stage. This month, we honor the survivors as we keep all children fighting cancer in our thoughts, year round. Survivors represent 80% of childhood cancer patients overall, though as we know this is only the 5 year survival rate. Cancer survivors, especially childhood cancer survivors who receive harsh chemo and radiation during critical developmental periods, face unique challenges, physically, mentally, and socially. So this June, check in with the cancer survivors in your life.

 I moved to Utah for many reasons. One was the weather. While not perfect, in my 17 year old mind, the weather of Utah was far superior to the dreary and humid Wisconsin. Another was school. When I moved here, I was offered a scholarship I could not turn down. I also moved here because of the mountains. The mountains have always felt like home, from the time I was small and playing in the foothills of Northern Utah. The mountains are still home, and I took a moment to appreciate them at sunset the other day.  

May might be over, but brain tumors affect children and their families year round. Keep the 83 kids that will be diagnosed with a brain tumor in the US this week in your thoughts.  

 So to really understand this post, we need to back it up all the way to December. And in December, I read a book about the Blue Zones of happiness (find it here ), written by the Blue Zones guru himself, Dan Buettner. Not to be confused with the regular Blue Zones, where people live longer and healthier lives than in other parts of the world, these Blue Zones of happiness are where people are happiest. And at the end of the book, it gave some top ideas of how you can be happier and live like people in these Blue Zones of Happiness. They were (in order of importance): Prioritize friends and family Get involved (clubs, teams, and other organizations) Learn likability (the art of being a well-liked person) Thirty minutes of physical activity a day Focus on the happiness of others Make a best friend at work Keep track of your health Live together, but with the right partner Be in the moment and take time to enjoy life or what you're looking forward to Set meaningful goals and track yo...

 One of the things I've come to learn as I've dealt with years of mental health conditions (and I learned this more recently then I care to admit) is that I sometimes have to redefine what a "good day" is. Because I have what's in my head as a "good day" that I aspire to. Something along the lines of, wake up, enjoy a full breakfast, go on a hike, draw, spend time with a friend, delicious food, hot shower, fresh sheets at the end of the day with a good book.  Ok, that's the ideal day, not just a good day. But recently I've had to think about what's really a good day. What is really important to achieve, and what really matters. So here's some of the things that have made a day good recently: I had a good conversation with my boss and felt understood. I had enough energy after work to cook. I made it through the whole day at the office without coming home. I was able to use my tools to manage my mental health. I was honest with someone abo...

 When I write, regardless of what it is, I'm often thinking about the voice that comes through. I can have a formal voice, like when I write an email to a volunteer I don't know, but usually I try to be more relaxed. The stuffy wording that I can find so easily puts distance between me and who I'm writing to, something that's not great in a social service job. Or in the rest of my life. But this blog doesn't have one voice, it has many. I have the more formal voice when I share scientific research, the more convincing voice when I'm writing calls to action, or my most honest voice, when I write stories of my personal life and experiences. But none are quite the voice I'm looking for in this mix of posts. When I think about the voice I want to develop, it is one singular voice, not many. It is a voice that is steady and true, while being able to speak not just in one way, but all of them. A voice that is adaptable, strong, and, most importantly, something I c...

 A new-ish awareness day is DIPG Awareness Day, held on May 17. The awareness day dates to 2016, when the then-governor of Maryland declared the day for the first time, on the anniversary of the passing of DIPG warrior Michael Mosier. Currently 30 states and the US Senate recognize DIPG Awareness Day ( x ). Here are some fast facts about DIPG: DIPG is a rare, aggressive cancer of the brainstem. DIPG is the most common cancer of the brainstem in children and the leading cause of brain cancer deaths in children. DIPG has a median survival of 11 months. The overall survival rate is less than 1%, with the 5 year survival rate being 2%. There are a few long term survivors of DIPG, with some common characteristics, but they often face stigma from multiple communities. The most common ages for diagnosis with DIPG is 4-11 years old with the median age being 6-7 years old. Families can find resources and support here . It is time to #defeatDIPG. Sources: x , x , x  

 Let's be honest: every month is a mental health month for me. I live with a mental health condition, a pretty impactful one (though they're all impactful), and spend lots of time caring for it. I'm currently going through a big medication change. It's been very challenging and overwhelming. I haven't been able to focus on caring for myself as much as I would like due to work and other commitments. I do believe that it's very important to talk about mental health, including mental illness. There is still a lot of stigma in our world. For example, I feel like it would go over better at work if I was outed as gay, as opposed to being outed as having mental health conditions. There's just a lot of misunderstanding and a lack of education, especially for some of the seemingly more complex mental illnesses and conditions. Mental illnesses affect 1 in 5 adults every year. That's a lot of people. Mental health is for everyone, and together we can defeat stigma....

 May is Brain Tumor Awareness Month, also known as "Grey May" according to the National Brain Tumor Society. I used to think it was only brain cancer that was represented by May, but it's actually all brain tumors, over 70% of which are benign ( x ). It is thought that over 1 million Americans live with a primary brain tumor, including over 13,000 children. Indeed, it is the most common solid tumor cancer in children and accounting for a quarter of childhood cancer diagnoses ( x ). I actually had a bit of a scare with a (possible) brain tumor earlier this year. I've had a hormone imbalance for years, and we'd always assumed it was due to some medication I take. However, after finally starting treatment, the imbalance didn't resolve, and my doctors agreed that I should be tested for a pituitary tumor, a usually benign tumor of the pituitary glad that may be present in up to 10% of people, usually without symptoms ( x ). The scan was (thankfully) negative and we...

I am always learning. I love to learn, whether it's reading books, listening to TED Talks, or attending webinars. A love of learning is one of many reasons I went to grad school, to learn more about a new topic that I was passionate about. An inability to limit my interests is also a reason that I have the degrees I have, and why they are so different. Not many people attend an arts high school, then study and interdisciplinary form of engineering, then finish their education with a social science masters, all while working in jobs that are only semi-related. A desire to learn and experience new things has driven many things in my life. I still take classes. I'm taking one now, about race and the history of it in the US. I'm even writing a paper, like a real paper with citations and research. The courses are college level, so they have high standards. Some higher than others, and this one has very high expectations. The first assignment even took me by surprise when I looke...

 May is here. It's one of my favorite months. Warm, sunny, blooming flowers, leafy trees, flowing streams, perfect for being outdoors in Utah. May is a beautiful month. May is Brain Cancer Awareness month, as well as National Cancer Research month, Neurofibromatosis month, and Oncology Nursing month. Clearly a lot is going on. And it's all worth learning about. So stay tuned for more posts this month about at least some of these topics.

 So I recently, on a whim, decided to see if I could revive my tablet from college. The last time this thing was even turned on was 2016, let alone used for anything substantial. It was sadly left to the wayside when I got a smartphone, which was faster, smaller, and, most importantly, connected to data instead of just begging for wifi passwords. But it was like a step back in time when I looked at all those apps. The old Instagram icon, all the chemistry and premed apps. It was just this little time capsule. A look at my life circa 2015.

 I think a lot of people think I want to live forever, because of the health steps that I take. It's assumed that my fascination with the Blue Zones means that I want to live to 100 too. That's half true. I want to live a long life, sure (maybe not 100) but I also only want to live a life where I feel good.  I have spent years unhappy, anxious, and in pain. After years of struggling to keep weight on, I was even technically overweight (BMI is trash anyway, but it was flagged). I know, I know, I'm not that old, how can I have spent years like that? Between mental illness, constant respiratory infections, and assorted unhealthy habits, I struggled for a long time.  About a year, year and a half ago, I started making changes. I am genetically blessed (sarcasm) with high cholesterol, although initially we blamed my meds. But after over a year of suggestions, I decided to make some dietary changes, then exercise, then more. Then I started to feel better. I wasn't exhausted e...

 Great news! A new childhood cancer treatment has been approved by the FDA! From the pharmeceutical company's website : "Day One Biopharmaceuticals, Inc. (Nasdaq: DAWN) (“Day One” or the “Company”), a commercial-stage biopharmaceutical company dedicated to developing and commercializing targeted therapies for people of all ages with life-threatening diseases, today announced that the U.S. Food and Drug Administration (FDA) has approved OJEMDA (tovorafenib), a type II RAF inhibitor, for the treatment of patients 6 months of age and older with relapsed or refractory pLGG harboring a BRAF fusion or rearrangement, or BRAF V600 mutation. This indication is approved under accelerated approval based on response rate and duration of response. With the approval, Day One received a rare pediatric disease priority review voucher from the FDA."  This treatment is specifically for low-grade gliomas (the most common brain cancer in children, affecting 1100 children per year) ...

 April is Autism Acceptance Month. You read that right, acceptance, not awareness. I know very few people who aren't at least somewhat aware of autism. Most people know someone on the spectrum (usually a child) as well. Quite a few adults are autistic themselves, more than we think. This includes me. I was diagnosed at 13 and re-diagnosed twice more as an adult. There's no denying it, I'm on the spectrum. Autism Acceptance Month is twelve years old. I know that a lot of people think that it's all about puzzle pieces and "Light it up Blue." But the truth is that Autism Speaks, the organization that is the most vocal and prominent, is considered a hate group by most autistic adults. The idea that autistic people need a cure, rather than accommodations and support, is ableist at it's core. We're not broken and we're not sick. It's not a disease, it's a neurotype. And neurotypes aren't curable. So that's why it's about acceptance. T...

 Last week, Utah had about 50% totality for a solar eclipse, the last one in the US until, wait for it, 2045. That's right folks, if you missed it on April 8, your next chance (unless you'd like to leave the country) is in 21 years. Anyway, I was sick unfortunately, so I did not get to gaze upon the eclipse directly (my solar glasses were at work). However, I still got to see the image of the eclipse, using a pinhole projector that I got at the library. My pinhole projector experiments were observed by a very confused gardener, armed with a weed wacker, nervous to hit me, or even disturb me. This is actually my second eclipse in a year. As some of you who have been reading for a while know, I ran an eclipse program in October for work. Never again will I have that opportunity, but I will have the opportunity to see another eclipse.

 Ok, so March was a blockbuster month for books for me. I finished 7 books for a total of over 2000 pages (which does include some conversion of audiobooks). Here's what I read: The Blue Zones: Lessons for Living Longer from the People Who've Lived the Longest by Dan Buettner (audiobook) - stoking the fuel of my interest in the Blue Zones. Fuzz: When Nature Breaks the Law by Mary Roach - this took longer than I expected to get through for whatever reason. Awestruck: How Embracing Wonder Can Make You Happier, Healthier, and More Connected by Jonah Paquette (audiobook) Everyday Something Has Tried to Kill Me, and Has Failed: Notes from Periracial America by Kim McLarin The Life-Changing Magic of Tidying Up by Marie Kondo (audiobook) - I'm hoping to use some of this in my tidying next week. What's Eating Us: Women, Food, and the Epidemic of Body Anxiety by Cole Kazdin - this was a favorite, one of the top books of the year. So well written and engaging. Rest Is Resistance:...

 I wrote this for my other blog, but I wanted to add it here, because I think that this is so relevant to what this blog means and to my life as a whole. So here you go, my thoughts on advocacy. The older I get, the more I realize that it is perfectly acceptable and normal to have one or just a few causes that are "your cause." You know, the one you could stand up and do a TED Talk on right this minute. The one you feel so strongly in your bones that things must change for it. So anyway, I have a few. Empowering younger girls and women is one of them, probably The One if I had to pick (yes, this is why I work at Girl Scouts). Childhood cancer research advocacy is another one I'd stake a lot on, but it's come and gone over the years. Mental health is breaking through as one that's really important for me that I'm actually willing to do work on, but I've been involved tangentially in for a long time. For a while I felt guilty. I felt guilty that I was un- or...

 A few years ago, I was given some post it notes and a prompt at a support group: to write myself something kind, something motivating. I made 2 and hung them on my bathroom mirror. They stayed there during COVID. I eventually put some up in my office too. When I moved, I wrote new ones. I had them up until very recently, when I replaced them with these: Do they do a lot? Maybe. But they're there, a reminder to myself of my value, my capabilities, and my strength. I do smile a little when I read my post-its.

My adventures in cooking originally started as a way to address health problems. Nothing romantic, just trying to feel better. At different points, the style I've used was different, from just getting calories at all to cooking in a specific diet. My cooking the past year or so has been the Mediterranean diet, but with some fusion elements. While I use ingredients in line with the Mediterranean style, I don't limit myself to Italian and Greek cuisines. Traditional foods from the region are my staple, but I branch out, incorporating ingredients and techniques from the Americas, Asia, and the Middle East. This winter, I've made many new recipes and used new techniques. I learned that I am not big on spaghetti squash, indoor dutch ovens are a fun twist on hearty dishes, and mint does go with parsley (and I enjoy it). I have enjoyed all of my adventures and am grateful to everyone who has sampled my creations or listened to me talk about them.

 Every year, teens and young adults are recognized as cancer warriors and survivors for National Adolescent and Young Adult (AYA) Cancer Week. This year, it falls from April 1 to April 5. From the Children's Cancer Cause' s website, the purpose is: "This annual awareness week is an opportunity to shine a light on the unique challenges that teen and young adult cancer patients and survivors face." AYA week encompasses young people ages 15 to 39. While this is an uncommon age range for cancer, it's not as uncommon as you might think. Some 89,000 young people are diagnosed with cancer in the US annually, and some cancers are even most common in young adults and adolescents ( x ). These include thyroid cancer, lymphomas, and primary bone cancer. AYA cancer survivors face unique challenges, from navigating more health problems than others their age due to long term side effects to peers not being able to understand their experience. Through CCC, one survivor said: “I...

 I've been a bit less active on this blog. It's been a rough few weeks with managing everything and some things had to be set down (to be picked up again later). If it makes blog readers feel better, I also did this to the HOA, so you're not the only ones. Some changes at work coupled with the season changes and a few other things. Plus someone accidentally lit their condo on fire. So there's that. Overall, I'm doing alright. This past week was better than the week before, and that was better than the week before that. Some stories are more exciting than others. Some are just the ones that I look back at and think, that might have been an overreaction. But I'm still cooking (my respite), getting back into walking, enjoying the sun, and reading my way through my TBR (although not as fast as I'd like on that one). I've finished many books in March, as well as walked nearly every day, ran one program and participated in another, and spent many hours hauling...

 I have a number of mental health conditions, and probably more that aren't diagnosed if I'm being honest (I have no interest in more diagnoses if there isn't a treatment I can do that I can't get now). However, one that has been present for years, in various forms and severities, is anxiety. I'm officially diagnosed with both generalized anxiety and social anxiety, so there's a lot of anxiety in my brain in pretty much all situations. It's gotten a lot better in the past year or so, but it's still a challenge. Coping with anxiety comes in various forms, and sometimes it's more successful than others. Currently my anxiety is higher, mostly due to work. I was explaining this to my friend, that I always have anxiety, but when I'm stressed it gets worse. We had this conversation because I am worrying about a lot of things, including the people in my life, which can be tough to deal with (I understand this, and usually hide it pretty well).  I wanted...

 Alright, so this is actually two updates in one. First, my St Baldricks fundraiser officially ended with $177 raised and 40 miles walked (counting only actual walks, not just nervous pacing while I'm on the phone). However, if you didn't donate, don't worry, you still can! My kind St Baldricks contact has informed me that people can donate all year, so if you missed February, please do still consider donating here . Also, my dad and grandpa both shaved this year, as they do every year. While Utah doesn't have St Baldricks shaving events (a future me project perhaps), Wisconsin does. It used to be put on at a high school but is now held at a bar (very Wisconsin). Anyway, February might be over, but please still consider a donation to St Baldricks, either through my fundraiser here or through their main site.

 Ok, so my reading goal for 2024 is 52 books (1 per week). I have read 12 books as of March 1, which is ahead of the pace I need to be. I generally have an audiobook and a print book going at once. So here's what I've read in January and February 2024: Don't Sweat the Small Stuff by Richard Carlson The Thing Explainer by Randall Monroe (author of one of my fave comics, XKCD) The Deepest Well by Dr Nadine Burke Harris (highly recommended for anyone working in a social service position) A Thousand Mornings by Mary Oliver All Cats are on the Autism Spectrum by Kathy Hoopman Mala's Cat (audiobook) by Mala Kacenberg (this was extremely hard to get through because it was pretty graphic in describing the Holocaust) Hood Feminism by Mikki Kendall Cost of Living: Essays by Emily Maloney (I think this is actually my least favorite book I've read this year) Success Under Stress (audiobook) by Sharon Melnick You Are Here by Thích Nhất Hạnh Pageboy (audiobook) by Elliot Page Iki...

 I recently listened to an audiobook called "Ikigai: The Japanese Secret to a Long and Happy Life." It was a short little book, but very interesting, and honestly covered a lot in its 3.5 hours. It was also very cross-culturally translated, because it's a book from Spain, translated to English, about Japanese culture. But I enjoyed listening to it. I feel like this fits with my very strong interest in the Blue Zones. I'm actually reading The Book about Blue Zones (the original one), or listening to it I guess. I'm glad that my library is so full of good resources to learn about these topics. Top takeaways? Eat well, socialize with those you care about, and find your purpose in life (your Ikigai). Good little read.

 Did you know that March is Kidney Cancer Awareness Month? Kidney cancer is a type of cancer that effects children, usually as a Wilm's tumor (about 90% of childhood kidney cancers and 6-7% of all childhood cancers), but other types are also possible. A new fact that I learned this year is that 5-10% of childhood Wilm's tumors effect both kidneys or there are multiple tumors in a kidney ( x ). I didn't know that was even something that happened, let alone that frequently. I also learned that about 10% of Wilm's tumors are genetic, which also seems like a lot (same link). If you're looking to spread awareness, check out the Kidney Cancer Association's website . You can even order a free orange ribbon to show your support.

 This month has been a challenge. The whole winter has been honestly. But I am moving forward and making progress, as always. I thought that I would share some wins from February: My large-scale work event served over 225 people throughout Utah, which is an attendance rate of about 70%. For a free event, this is a minor miracle. I survived initial orders for cookies, which is a feat in and of itself. I went on my first date in a year. I started walking more, a welcome reprieve from winter blues. The sun has been shining more too, making walking more appealing. I tried many new things, including an indoor dutch oven and a sumo mandarin. I finished 5 books (2 audio, 3 print). One was finished on February 1st though, so you can debate me on whether that counts. I did two illustrations, one of my friend and my 2024 bucket list and one comic. My St Baldricks fundraiser is almost over and I've raised almost $200 for childhood cancer research (full post on this soon). And last, but certai...

 Before you assume based on the title, it is not that I have issues with my friends. I love my friends dearly. But, if you have some sort of chronic illness or disability (including mental illnesses), there is a process when you get a new friend that they have to learn about it first hand. You can tell them about what it's like for you, but until they see what you go through, that's when it really sinks in. I've been autistic my entire life. I always will be. And I've had an assortment of mental illnesses for well over a decade now too. Not the same as if I had a physical disability, but it's still something that flares up and effects me in deep and painful ways. The worst part is that sometimes it kicks up when I least want it to, in ways that make others feel like it's their fault. But it's not. It's mostly genetic, a bad luck before I was even born. It's not something I'll overcome permanently, even if I have long periods of recovery. I know p...

 So, for those of you who are new, one of my new years' resolutions was to try new things. By way of ease, many things that I try are food-related. This month I've tried a number of new things, including cooking wild rice, using an indoor dutch oven, and tasting a pomelo. I enjoy trying new things, and it's a source of enjoyment to explore different cuisines.  Cooking is also a form of expression for me. As I told my colleague, I will be moved to stop adding red pepper flakes to my food when cooking. I express my love for myself and others as I cook for them. The Joy of Cooking is a mood that I take with me in my life. Even when I don't feel like making dinner, I can find a little bit of love for myself in making a hot meal that I know I will enjoy. And, when I have time, experimenting to find just the right flavors and techniques also brings me joy.

 I have some wonderful news from France that my mom shared with me on Valentine's Day. A child, a 13 year old, from Belgium has been cured of DIPG with an experimental drug ( x ). It seemed to good to be true, honestly. How often do you hear that a tumor with a 0% survival rate just... disappeared? And other children in the cohort surviving beyond the normal survival time? I went a little deeper. The medication, everolimus , has been studied a few times for DIPG. It's a repurposed drug, currently used for a variety of types of tumors and more. According to this research on genetically targeted treatments for DIPG, the average survival time increased from 14 months without the adjuvent to 20 months with the additional treatment. However, this is ultimately a very early study on the drug, not a study that will truly create a treatment plan to help these kids survive. In another phase I study , you can see results with two biologic treatments, the same drug above combined with an...

 While a lot of this blog focuses on days and awareness of what's happening with childhood cancer in the US, the reality is that childhood cancer has a global impact. This year International Childhood Cancer Day falls on February 15. From the organizers , "International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families." Did you know that over 400,000 children develop cancer annually, but only half are ever diagnosed. There are huge gaps in childhood cancer care between countries, where 70% of children in some low and middle income countries won't survive their cancer, but only 20% of those in high income countries won't survive. Still far too high, but think about that difference for a moment. The International Childhood Cancer Day organizers have provided a toolkit to learn more about how you can help here .