Survivor Problems

Oh you guys it's so weird. There is this thing that I am realizing that many cancer patients go through. They have aggressive bouts of exhaustion, then they get depressed that they're not out doing things, not conquering the world. One of my beautiful camp buddies posted a dark photo of herself in the cavern of her bed. Her hair was mussed, her face pained. She was berating herself because she isn't as productive, and accomplishing as she was precancer, prediagnosis. Now this badass girl, I am not exaggerating, has had more cancers/medical issues, more surgeries/treatments/etc. than most humans will in their lifetime. The girl has been pin-cushioned, poisoned in the name of survival. She is a force, one of the largest personalities I know. I remember just watching her emitting her fearless vibes, her mastery of the rocks, the confidence in her soul, and when I saw her recent Instagram, my heart ripped for her. It still brings swells to my eyes. I had no idea how much this overwhelming exhaustion, and self doubt permeates the cancer world. It seems crazy when I look her, so obvious that she's being too hard on herself, but also I can relate perfectly. It's something I live everyday. It's so frustrating for us. And it's impossible to explain because we don't understand it either. We can't understand why our bodies and minds won't just do what we want. Is it all the cutting? The toxins, and foreign substances that have cursed through our veins? We don't know, but instead of just being patient with our bodies and our situations, we get sick of it. We get sick of being sidelined, sick of not being able to be the person we want to be, the person we once were, the person we should have been before everything changed, before it was taken away. I realize, conceptually, that I may never have the same energy, that I may be riddled with bouts of bedridden exhaustion, almost a depression or sadness, but I can't stop hoping that it will get better, that one day I will wake up and realize that I'm healed. That I'm back for good. Completely. Until then, I hope and pray that it gets better, because I know we're never going to give up and just allow ourselves to be ruined by this.

Know My Limits

You guys are so patient with me. Thank you so much! 

I hung out with a buddy this morning, and it was so refreshing! And fulfilling. There are people that just get you, that make you laugh, and understand your trials, and it's priceless. With her help, I am coming to the realization that if I take care of myself (just like you guys said - you are so smart!), I won't get worn down. That if I don't take time out each day, I will drown. That this life alone is a lot, tack on a brain tumor trial, then tack on putting your story out there online, then tack on helping people that come to you for advice, then helping others research their cancers. It's taxing, but no one is trying to tax me, it's me putting it on myself. It is my responsibility to know my limits, it's my responsibility to express that, and let others know if I'm overwhelmed. People aren't mind readers. Next time, my goal is to not get this worn down, to not let it get to this point. 

It was hard to get out for a walk today, it had been weeks, but I reminded myself that I just have to put one foot in front of the other. Little by little, before I knew it, I was walking out the door. And it's all part of taking care of myself. I had been treating exercise/meditation like a luxury, not a necessity. This is my health, it has to be a priority. (Say and repeat and maybe it'll sink in.)

Thanks again guys, I really appreciate your insight, and kindness. I can't imagine what my life would be like without all of your love, and friendship. 

What's good for me is good for whomever is around me, didn't you guys say that?

Please Forgive Me

Sometimes I wonder what the hell I've done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don't see is that I get so tired. I get these brain flu episodes. I can't explain it; I can't anticipate it. When I don't feel well, when I can't get my brain to unfuzz, I don't blog. I don't complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I'm missing healthy brain tissue, tissue that I'm sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they're only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I'm known for not putting things off, but there's a fine line between putting things off and not being an alarmist. In the meantime I'll focus more on diet, lowering inflammation, and regular exercise, and meditation, and prayer, and rest.

I'm wondering if a portion of it is stress, these issues, or the majority for that matter. Another thing that I don't tend to write about is that I get contacted daily via email, text, phone, by other friends with cancer, and also several times a day new people find me. Right now two of my closest cancer friends just found further metastasizes. And that was just in the past 24 hours. Those two girls, along with another of my closest friends who also has active stage 4 cancer, need me. And I adore them. I love them. Then I get other people that need help and direction, and I'm happy to do so; those emails are a joy. I want to help people survive, but then I get other emails, so so so many of these emails, of people that don't tell their husbands, their parents, their siblings, their children, that they are battling cancers, and tumors, or diseases, and they come to me for camaraderie, and to vent, and to find a source of support. But the thing is that I am only one person, and I am already exhausted, and scared, and trying to remain healthy. Stack on top of that, my friends whom I adore, whom I want to save, whom I want to cure, whom I want to be around for decades and decades. I want them to be around for a lifetime. And I'm virtually helpless. I'm stuck here. I'm just me. I research for them, I brainstorm, but it's not enough. I want to do more. I want to be there. I want to take it away from them. I want to be the superhero that snags the ticking time bomb of cancer and flies it away at supersonic speeds to another galaxy, returning in the nick of time so that we can all be saved. (Sorry neighbor aliens.)

I want to help everyone. I want to give you strength, but each time I give my strength I have to be replenished too. I can not continuously give. I can not be everyone's rock. From the time I was young I have internalized other people's plights. I was one of those kids who would cry for starving children. When I read your emails, when I hear people's fear, I feel it. I can not live removed. So what I have to say right now is that I am asking those of you who reach out (and as you read this please know that there are tens of people daily, this is not singled at any two or three people) and are carrying the burden in the dark to open up to your friends, and family. Not only will you need that strength and love and support, but also, as my dad recently reminded me, it makes them feel better to be a part of the journey. They appreciate being involved. They want to help us. Of course, you don't have to do anything you don't want, but I guess this is my cry to you, I can not carry everyone else's burden. I can carry a few, but this is not normal stresses. This is life and death, and my friends are a high need group, and in order for me to be a good friend, and be able to handle the reality and research and emotional support to help them, I have to focus and know my limits.

I feel horribly guilty that I can't be everyone's friend, that I can't have relationships with everyone who reaches out. I hear the fear in your voices. I feel what you feel. I want to help. I want to fix. I am so sorry that I can't do it all. I'm so sorry that you're going through this. Even though I'm writing all of this, I hope that you still feel comfortable reaching out if you have direct questions. I really appreciate it when they're short. It's especially the long emails that get me. It takes so long for me to read and think and analyze - it zaps me. I am incredibly capable, but I have limitations, and I have to be able to triage. I can't be attached to my computer and phone all day, it isn't healthy. And the subject matter is so heavy, so dense, so dark.

I'm sorry that I had to post this message. There is nothing more that I want than to help, but I am only one woman. And I'm not trained for this. I'm not built for this. And my heart, which thankfully is quite large (probably big like my huge noggin), is reeling. It is deeply bruised, and hurting for my two First Descents camp friends who have had such horrible news. Fucking cancer.

I'll leave you with this quick video, it's about angiogenesis and cancer. There aren't any great anti-angiogenesis drugs for brain cancer that will cure, but don't forget that food does matter. We can eat things just because we're hungry, or because it makes us feel temporarily better, or we can make our food serve a purpose, to make it count. There are all these little things that we can read up on and learn about to take charge. I'm not trying to imply that diet is enough. I'm only imploring you to get curious, read up, research, Google stuff, and find what empowers you. There are so many times with cancer when we feel helpless, and scared, but there are actions that can help. Never give up. You are capable just within yourself. In any moment you can make choices to change. It's all in you.