Introduction to My YouTube Vlog

I'm getting lazy in my old age, and resorting to video blogs to keep in touch.

Okay, I was just cracking a joke, but truth is, I'm having a harder and harder time expressing myself with written words. I can't even think straight these days. I'm truly bone tired, and that's why I barely write anymore.

Please note: My YouTube channel will have all the videos, but the BLOG will have all the various posts: video, written, guest, etc.

No Model

A couple of months ago a patient told me that I'm a role model, and it completely freaked me out. That is a ton of responsibility. I don't want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they're going to die too? That we're all doomed? That's how I feel sometimes when tumor friends have recurrences. I don't want that on my hands. What if I just want to eat crap for a year and see what happens? You can't do that if you're a role model. When you're a role model you're held to a higher standard; there's good behaviors that you're supposed to exhibit. You're supposed to lead by example. That's a lot of responsibility, and it's definitely too much stress. I'm not trying to be perfect, I'm just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn't be looked up to. 

A couple of days ago I removed my favorite Buddhist saying and replaced it with this.
I like to think I made it up, but probably not.

Last night, a friend helped me see that I am not other people's stories. That when I help, I don't have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It's easier said than done, but it's a lesson we all have to learn. In life, we connect, even if we don't want to. There's these invisible strings that pull us together spiritually, emotionally, physically, and if you're dealing with heavy stories all the time, you can become tangled. Tied up. And that's where I was, in a balled up mess, until she helped me break loose. 

Someone asked me last summer, "What gifts has cancer given you?" And at first I wanted to blurt out, "A horrible case of paranoia." But then in an epiphany, I saw a slideshow of faces, of all the interesting, caring, brilliant people I've met because of my diagnosis. Many of the people, most actually, who read the blog, don't comment. They're private, but they can somehow relate to what I'm feeling, to what I'm going through. Some have had cancer, others are currently undergoing treatment, and most are healthy, but what I write has struck a chord in them. The biggest shame, is that there are exponentially more people who read this blog than engage. I wish people felt comfortable, and it's my fault for not facilitating it, to comment more, to create dialog not just toward me in private emails, but amongst each other. Maybe people don't realize it's easy to post anonymously, or use a pseudonym. 

I feel strongly that we have to be the change we want to see. And sometimes, eliciting that change is just talking. It's getting the information out there. It's discussion. It's provoking thought. We learn invaluable information from others, and I can't express enough the powerful conversations that I've had between patients. They have altered my view on various things, and helped me evolve. But the conversations are private, and I'm not at liberty to share. If only people could open up, even anonymously, we could all benefit. There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away. The most beautiful thing would be for readers of the blog to begin dialog even with each other. I field so many email questions, but what if a person chose to post a question in the comments, they could do it anonymously, and just see what people suggest for solutions, or just share their knowledge. The more we talk, the more questions will come up, the more problems we could address, the more we could educate ourselves.

I have grown by sharing my story. It has made me a better person. I took a hiatus because I became overwhelmed, but with the right tools, by setting some boundaries, I think I can continue, and be better for it. It sucks, but no one is going to set your limits, you have to do it yourself. Kinda like the dishes. Okay, that was dumb. But, you know what I mean. I could have shriveled away from the blog, and in essence, I did, but it would be a shame for me to lose the magic. It has brought me so much joy, revolutionized my damaged brain, given me hope, and love, and friendship.

Thank you for giving me space, and also encouragement while I was away. The most powerful thing I've heard lately, was, "Your story is enough." I never feel like I do enough, and to be given permission to own that as a fact - that I am enough - was powerful. I'm absorbing it. I hope you can except it for you too.

Podcast Interview "Living With..."

I had the honor of being interviewed for the podcast, "Living With..." recently. Here is what this iTunes channel is all about (in Tom's own words): 

Description

Living With… is about those living with cancer and other diseases or challenges. It's a community of inspirational people who got some bad news, were dealt a terrible hand, a horrible diagnosis, which changed their lives forever. I have Myelodysplastic Syndrome (MDS), a progressive bone marrow disease which robs the body of its ability to produce blood cells and fight infection. For some reason the body stops making proper blood cells, leaving the body weak and vulnerable. Treatments include blood transfusions, drugs to boost blood cell production, and ultimately bone marrow transplant. My levels have declined considerably. I take drugs to keep my levels from declining even more, but no one knows how long they will work. I get routine blood tests to monitor my levels. I used to be an avid runner and have run several 5k, 10k, half & full marathons. I suffer from lack of energy and fatigue, but I’m able to work and do most things if I pace myself. Now, I am a walker, but I haven’t given up. I miss running, but I’m alive! The Living With Podcast is my way of bringing you interviews with inspirational people who are living with cancer, illness, and other challenges. I feel we can learn a lot from them, be inspired by them and ultimately live more meaningful and fulfilling lives. I hope you will listen to the podcast and will be entertained and inspired!

Here is my interview: https://itunes.apple.com/us/podcast/living-with...episode-023/id975036684?i=347582559&mt=2

It's a little bit long because, hey, it's me - I was born talking - but you could listen to some, go take care of some stuff, then come back, etc. I had a blast talking with Tom, and it was really fun to listen to his other podcasts and hear other people's stories. It is a privilege to share my story with others. It is a privilege that I am here on this earth. I am humbled that Tom found my story to be one that would be a benefit to the community. 

I Need To Believe

This last weekend was such a blast! Danny and I were able to pack Emma and a bunch of goodies for a quick road trip to Wenatchee. We didn't tell my parents we were coming, and they were completely surprised and ecstatic - I'm horrible about keeping surprises secret, but somehow I managed. As we drove closer and closer, I became more and more giddy. I am so lucky to have two amazing parents who give me so much love. They are incredibly supportive. I had been needing more hugs lately, and on Saturday morning my parents engulfed me, it was so healing. I love the fact that I can tell my parents anything. They understand so much because they see things that I'm going through, the struggles, the demands on my body, on my mind, they know so much because we talk almost daily. But it's different to get a hug :) A hug might be the best support I could ever get.

My Saturday morning hug came because I was honest with my parents about how I feel about my future. I have been trying very hard to keep a brave face, to shove down the thoughts of failure, of death, but it's not as easy as it once was. Unfortunately, in January, a very close friend said to me, "You know, there's a chance that none of these treatments will work. That there's nothing you can do." It was quite possibly the most painful thing that I've ever been told, and I said that to her. Obviously, you guys understand that I realize, only too well, that I might just die. That my fate may be sealed. That I'm spinning my wheels to no avail. It's something that crosses my mind several times a day, then I try like hell to be positive, to fight on. Just for future reference for friends and family, I only want support. I want to believe - I NEED to believe - that I can beat this diagnosis. I need unfailing support. I can not have anyone say to my face that I might not make it. You guys can say it behind my back, that's fine, but not to my face. It's just unnecessary, and cruel. Her words resonate in my mind and I hate it. It physically hurts my heart, my soul, and sucks at my hope. And I know that it's stupid for me to be effected by someone's words, but words are powerful, especially when they echo your own fears. Ok. Enough of that, I just had to get it off of my chest. For the record, I know that my friend didn't mean to hurt me, but obviously it did. Some things just don't need to be said.

Dealing with cancer is a 24 hour 7 day a week kind of thing. I'm constantly trying to think positive thoughts, making healthy decisions, researching supplements, diets, treatments, doing anything I can so that I know that I'm up on all of the latest treatments and tricks that fight brain cancer. It's exhausting because as I research I also learn so much about the things that don't work, I read stories of people time and time again that have not made it. Brain cancer is one of the least forgiving cancers. It ravages your being, your mind, who you are. Reading and researching is emotional and scary. I feel I need to do it because I learn so much, that I need to be my own expert, my own advocate, but it's terrifying. It becomes overwhelming and that's why I need the outlet of this blog, to just purge my feelings and fears. Somehow, being open and honest about how I'm feeling gives me strength, it makes me feel honest, and transparent.

On a positive note, I have officially been in ketosis for 10 days. Ketosis is when your body uses ketones to burn energy instead of glucose (ie: sugar or carbs). The science behind this diet of low carb, high fat, medium protein, is that your body's organs and cells can fuel them selves off of ketones, and tumors and cancer cells can only eat glucose. Therefore, the less glucose you provide your body, the more you starve the cancer.

I have tried this diet before, several months after my first brain surgery, but it was too restrictive. I was still yearning to eat the foods of my friends, to share wine with the girls, I was unable to completely commit. Thankfully, I have a renewed strength and amazing friends who don't mind if I'm drinking Pelligrino, or abstaining from most foods. The girls that I've been able to spend time with, Christel, and Libbey, and Laura, have been so supportive. They want me to succeed above their own immediate desires, discussing the details of my lifestyle so that they can join in when we're together. It's so nice to be able to talk about the details of what I'm going through, what I'm researching. Each time I explain the ketogenic diet and its' relevance to brain tumors and seizures, I gain further insight into the whole process. It solidifies my memory and makes it easier to continue. Also the girls have all kinds if ideas on recipes, we end up turning it into a fun excuse to do something different, to problem solve.

Over the weekend Dan, my parents and I golfed 9 holes at Desert Canyon (We played best ball - which I must be honest took three hours. Ha!) and it was a blast. My goal these days is to continue to get out and enjoy life. It requires lots of naps and resting later, but it is so worth it!

Saint Patty's Day

Sometimes people just get sick. It's tough when you're dealing with cancer to not read into things too much - like your immune system. Luckily for me, my friend Meghan has been sick for the past week after hanging out on Saint Patty's day just like me. She was just as immobile, and oddly, her sickness made me feel so much better :) Once I realized she was in as bad of shape, I actually felt completely normal which was fun. I was just a sicky, living in a sick world. Here's a few photos from the infamous day...

Meghan, Julia, Me, Lauren

Lo & Megs getting me camera ready

Ta-Da!

My partial Irishman

The holiday was a blast. You can't beat Saint Patty's day with a group of close friends, our favorite Irish man, and all of his Irish buddies.

Good luck getting a photo during the Irish rugby game...

Michael at least gave us his face, but his eyes gave him away :) 

Here's a funny story about Saint Patty's day......We celebrated in downtown Seattle, at an Irish pub called Fado. At one point, I went to the ladies room (as one does from time to time). As I was washing my hands, and checking to make sure I didn't have anything in my teeth (or stuck to the bottom of my shoes), a woman my age started smiling and said, "Oh my gosh. I swear I'm not creepy, and you don't know me, but I'm a friend of a friend of yours and I read your blog!" She was absolutely hilarious! It was amazing. She told me that she loves reading my blog because it's a true story. The girl, Meghan or maybe it's Megan? I'm not sure on the spelling, but regardless, she was incredibly sweet, and it completely made me feel so wonderful. What a huge compliment! Danny teased me later, because I made her come over and meet him, and he said that I hugged her about three different times. It was just such a thoughtful thing for her to come up to me.

What an honor. It's amazing. I'm still completely touched. That is something that I'm going to swirl around in my mind to make me smile. Everyone needs a few of those little memories for a bad day. A gift that you can pull out to cheer you up. Life is so full of fun, and I love that we're all intertwined, integrally interconnected. It's beautiful. I'm so lucky!

Danny's Home!

Dan's home!!!!!! I was deep asleep in a nap a few moments ago, when I felt a little tickle on my foot. I jumped up, startled, sure that my eyes were deceiving me. He had driven the six hours all the way back to Wenatchee from Portland. Apparently, the training for Union Pacific has been canceled all across the western region.

I'm so happy to have him home, and yet disappointed that he again has to try a new avenue of work. The company called it "furlough" meaning he hasn't lost his job, but they no longer need him. He will be called back when work picks back up. The unfortunate thing is that there are people who have been working for Union Pacific for four or five years and they are also on furlough. Things are not looking good for this job prospect.

Also, as a side note, I woke up from a dead sleep last night because I realized I had not mentioned the fact the title of my article was not written by me. I would never have titled my work "Jessica: An Amazing Woman." I was so embarrassed (and honored) that I forgot to mention that fact in my blog yesterday. I hope people know that I'm not that conceited. It was a huge compliment, written by the editor, but I would never have assumed that I should be considered an amazing woman. Maybe I have an amazing story, but I'm just doing what most people would do in the face of bad news. Anyway, I just wanted to clear that up.