Bibliosphere

 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 .

 February 14, in addition to being the all-important Valentine's Day, is also National Donor Day! Whether you donate bone marrow, blood, or a kidney (and everything in between), today is the day for you! So here are some ways to celebrate your love of donors: Sign up to give blood! Check out this list by zip code. Make a donation to a local blood bank, the bone marrow registry, or a tissue bank. Thank a friend or family member who donates. Sign up to be a part of the bone marrow registry here . Make sure that your driver's license says that you're an organ donor and make your wishes known to friends and family. Ask your workplace, community organization, school, or church to host a blood drive.

 Hello everyone! Guess what? My fundraiser is still happening and there's plenty of time to make your donation!  Did you know that St Baldrick's is a top funder of childhood cancer research? I donated over a foot of hair twice and shaved my head once, all to help kids fight cancer. There's nowhere for me to shave or volunteer in Utah, so I started my own fundraiser in parallel with the February Facebook fundraiser happening nationwide! I'm walking at least 25 miles in February, and I hope that you will join me in donating to St Baldrick's to raise funds for childhood cancer research. You can donate here ( https://www.stbaldricks.org/fundraisers/mypage/4993/2024 ). Thank you in advance for helping save lives!

 So here's the deal. I used to go home in middle and early high school and sit at my desk and just creative. I made jewelry and painted things and played with wax molds and printing kits and all sorts of things I'd found at Goodwill and yardsales. I continued to create later on in high school and into college, but it dwindled as I got older. Grad school and mental illness took a lot out of me, and getting back into the arts, even just drawing, felt like a huge task. But, slowly, I've gotten back into crafting. I started easy, drawing. I did a few Inktobers (drawing challenge in the month of October), I started getting into visual journaling, and slowly began to get creative juices again. It was different than what I'd grown up with though. I was trained classically in drawing at the arts high school, drawing only from observation in many classes (although I branched out at home and in classes with a loose format). But I started drawing from memory, and it's mostly l

 Did you know that February 4 is World Cancer Day? The theme from 2022-2024 is Close the Care Gap, and it aims to close gaps in cancer treatment. From their website : The last year of our campaign is all about bringing attention to a higher level—literally. We will raise our voices to engage our leaders. Now that we have knowledge and a united community by our side, we are ready to shake the very foundations of injustice—to become lifelong advocates fully equipped to push for lasting change.   Together, we will make sure our leaders know that we demand a commitment to prioritising cancer, to creating innovative strategies designed to confront inequity and to investing our resources to achieve a just and cancer-free world. We will call on leaders to eliminate health inequities by addressing their root causes, ensuring that everyone has access to quality health services when, where and how they need them.   Be sure to check out their website for actions that you can take thi

 Today is the day - my fundraiser officially kicks off!   Donate Here  I have to say, I did some pre-fundraising. I have a few donations, some unexpected for sure. Of course I donated to my own fundraiser too.  I set "milestones" for every $100 plus one at $250 for the halfway point. It won't correspond exactly to miles walked, especially since I walk 3-5 miles daily, but I think this will be a special amount that I count only actual walks.  I love going for walks, so the 25 miles isn't a problem. 50 miles probably wouldn't have been a problem. But it's not about the miles.  It's about the kids. Donate Here  

 My county library is probably one of the most awesome library systems (I am super biased though) and actually is one of the busiest systems in the country. I love the system dearly. I love going to their events and often bring along a friend. For the first week of the year, I brought her to our newest library building for a Vision Boards workshop. I didn't think we would spend the whole hour and a half, but sure enough, we didn't roll out until just before the end of the workshop. I spent a lot of time combing through the magazines, picking just the perfect images and text for my board. I focused on my hobbies, especially cooking, things I want to do this year. I unfortunately didn't include a lot of art items, just based on what the magazines had, but also got a lot of cool foodie stuff and them some other pretty things.  Overall, I don't have one concrete vision for 2024. I have some resolutions, sure, and I have my goals. But I'm trying not to set the bar too hi

St Baldricks February Challenge is almost here! While the fundraiser technically takes place on Facebook, I've made the decision to do an actual fundraiser page, on St Baldricks' website. You can find it here .  I'm honoring children close to my heart, but I'd love to honor more. If you have a child (or adult survivor) you'd like me to add to my page, please comment. Kids can't conquer childhood cancer alone, but we can help them.

 To track my reading, I use an app called StoryGraph. I highly recommend it as an alternative to Good Reads. It has lots of neat features and has great data visualization, perfect for your inner nerd. This year, I read more than I have probably since high school (if we're only counting reading for fun). While I've always appreciated nonfiction, it's become my one and only reading genre. Within nonfiction though, there's tons of options. I developed a taste for memoirs this year, reading 11 of them. I also read some poetry for the first time in quite a while, and got back into audiobooks (arguably the best format for memoirs, as often the author reads them). For 2024, I set my goal at 52 books for the year. I'm already on track, with two books finished in the first week of the year. Wish me lots of cozy books, lots of learning, and lots of enjoyment out of books.

 January is National Blood Donor Month! Cue celebratory emojis for all those who donate blood! But, in all seriousness, there is a nationwide blood shortage in the US, the lowest number in 20 years (a 40% drop). That's a huge issue, not just for the childhood cancer community, but for many medical communities. My brother had many units of whole blood and platelets during his treatment, an amount I have since given back through donation. The need is greater than ever: every 2 seconds someone needs blood. Most needed? Platelets or red blood cells from those with type O blood (either Rh).  I was a gallon grad, someone who donated 8 units of blood prior to graduating high school. Later in college I started doing platelets. Then I went to camp one summer and moved further from the blood bank and just stopped. I asked them to stop calling and they were respectful. Early in January, they reached out. It's been 6 years. But I had been thinking about this for months, how I should start

 Martin Luther King Jr weekend is a national weekend of service. There are many fabulous ways to give back to the childhood cancer community. Our kids need all the help that they can get. Here are a few ideas to get your started: Raise awareness, either on your own or working with a community organization. Raise money for a childhood cancer charity or donation fund Participate in a Curesearch Walk or Ultimate Hike Shave your head (or volunteer to help) at St Baldricks Volunteer at your local hospital on the pediatric floor Volunteer as a patient advocate or educator at a local hospital or nonprofit Create art or game kits for childhood cancer patients Create a meal train for a local family whose child is undergoing cancer treatment Volunteer to write guest posts or content for nonprofits Volunteer to use your skills sets with childhood cancer nonprofits There's tons of ways to give back and I hope that you'll consider some!

 Ok, so I invented this the day before I left for Wisconsin to use up what I had. It was delicious and concocted purely on the fly.  Ingredients: 2-4 oz whole wheat rotini (can sub other pasta) 1 cup baby bella mushrooms, cut into 4-8 pieces, depending on size 1 medium shallot 2 Tbsp olive oil, divided Sea salt Fresh cracked pepper 1 clove garlic Asiago cheese, shredded, for serving Chopped fresh parsley, for serving And here's how you make it: Cook pasta according to package directions. Drain. While it's cooking, thinly slice the shallot and break apart the slices. In a small to medium pan, heat 1 Tbsp olive oil. When hot, add the shallot, seasoning with salt and pepper, to taste. Cook approximately 5 minutes, until tender and beginning to brown. Add the chopped mushrooms to the pan. Drizzle with additional olive oil, to coat the mushrooms, and season with salt and pepper, to taste. With one minute left to go on the pasta, add minced garlic to the mushrooms and shallots. Cook

 I've been in the market for a new car, and on December 17th, my parents found the perfect one. Similar size, lots of great features, reasonably priced. So we cancelled my plane ticket last minute and I drove to Wisconsin with my old car, transferred it to my parents, got my new car, and drove back with my mom. Here are the highlights: Overall, the drive to Wisconsin was uneventful. I stopped at 1 Costco (Coralville, IA) on my way there, which was surprising to my parents, and also they have an enclosed parking area, which was weird. I tried very hard to stop at rest areas for a walk, but also, I like to just power through honestly. On the way home, we spent much time playing with my new car's features. It has sensors galore, a navigation system, and a CD player (yes, this is exciting). In Wisconsin and much of Iowa, unfortunately we went through the bulk of a snowstorm. About an hour in, the car beeped and said it couldn't use the sensors. When we stopped, the entire front

 I'm going to do some posts that give readers a background on childhood cancer throughout the year. My goal is to do at least a few related posts every month, for sure the awareness days and months, and then some other information, news, etc.  First, let's dive in to what types of cancers occur in children. There are many types of childhood cancer, hundreds in fact, especially when you consider subtypes. But which are the most common? In order of most to least common, by percent of childhood cancers, they are: Leukemias - 31% Brain and spinal tumors - 26% Lymphomas - 10% Soft tissue sarcomas - 7% Neuroblastoma - 6% Kidney tumors - 5% Bone tumors - 4% Germ cell tumors - 3% Retinoblastoma - 3% Liver tumors - 2% Other cancers - 4% According to the Children's Cancer and Leukemia Society from the UK via MacMillan Cancer Support ( x ). All childhood cancer is considered rare, with only a few hundred per million diagnosed annually. But if you add that up over the span of a childho

 2023 has come and gone. My goal for this year was simple: have better work-life balance. While some seasons were better than others, I feel like I accomplished my goal. So here's some highlights from my year: I started out slow with minimal activities in winter, although I was dating someone so there were a few outings. Also in the winter, I took up cooking as a hobby, spurred by the decision that I finally needed to listen to my doctor and address some health issues with lifestyle changes. I went to Seattle area in March! My dad's family still lives there, so I visited, the first time visiting on my own. A month later, I bought my digital step counter and joined my health insurance's app, so now I'm extra motivated to move my body, eat healthy, and take care of myself. We had record snowfall this past winter. Seriously, some ski resorts had over 800 inches, including a snow storm in April. Also in April, my work bestie moved back east to be with her family. We sen