Tag

blog

Uncategorized

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.

Continue reading
Uncategorized

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…

Continue reading
Uncategorized

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….

Continue reading
Uncategorized

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…

Continue reading
Uncategorized

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,…

Continue reading
Uncategorized

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.

Continue reading
Close