I had a pretty emotionally draining day, and little of it had to directly do with cancer. It wasn't all good, but I'm trying to focus on what actually went well. I ended up taking a Xanax, which I have to do at rare times when I can't manage my anxiety.
I participated in a phone call today where I was able to share my story with some local political and healthcare personnel, in hopes to bring a fundraising event for lung cancer to Cleveland. There's still a lot of work to do and more phone calls to make, but I made a start today and I feel very accomplished for my tiny feat.
My favorite farm, Rittman - will have their berries at the market in the morning. I have to get up early so I can get them to make a strawberry pie for my husband's birthday. Later on, we'll hit the Cleveland Flea and hopefully see some friends and family in the process.
My in-laws are coming to Cleveland to visit us tomorrow and I think we'll have dinner - I am not sure what else we'll do but it will be good to see them!
I titled my post "Avocado" because I'm currently obsessed with avocado. I had it on a burger last night, I ate it at the restaurant we went to last week and I may (or may not) have eaten more for lunch today. I know there'll be a time where I'll get sick of it eventually but for now I'm going to ride that yummy green wave.
Showing posts with label lung cancer awareness. Show all posts
Showing posts with label lung cancer awareness. Show all posts
Friday, June 13, 2014
Wednesday, June 11, 2014
Streams of consciousness
All I feel like doing is being lazy.
Yesterday was one of the most tiring days I can remember having in a while - despite most of the day being spent laying down. I didn't really sleep until I was just too exhausted to stay awake anymore. Today my head has been pounding and I've been feeling flushed and tired. I probably should have stayed home, but was worried about being bored.
Even today I am still just so tired. My vision is fuzzy because my eyes are tired. I have such a comfortable set-up in the bedroom right now, so that's great.
Using my arm (on the side where the port is) is a little tricky - I can't lift more than 10 pounds for a week, and even doing things like reaching up and opening doors is a little painful. I have things I'd like to do, but I can't right now because of physical limitations. It's very frustrating to feel so useless. I know it's not my fault - I'm realistic about that but it's annoying.
I'm working on some pretty serious prospects for lung cancer awareness and advocacy here in Cleveland. I hope that what I'm able to accomplish will make waves through the community and touch a lot of lives. I have some meetings to attend (via phone) with both local and some national interests to see how we can work together. Though I know my personal involvement will be very tiny in the scheme of things, I feel very happy to know that I am trying to make a difference and I'm going to be educating people. I hope that the community rallies around the cause and gets a better understanding of the hard fight that is lung cancer.
I don't remember if I said this yesterday or not but the show Gold Rush is so, so bad. How the main guy hasn't disappeared - buried under feet of permafrost is beyond me. I cannot. Tear. Away. My sides hurt.
The company that provided my oxygen last year claims they've tried to reach me for weeks and has sent me a bill for 5500 dollars for products I have not needed to use in months. At one point they sent a man to intimidate me to keep the oxygen, saying that if I refused it that my oncologist would be unlikely to prescribe me oxygen again if I needed it - since I was basically going against their orders.
I didn't buy their bullshit, but I bet a lot of people do - and that scares me. The things that healthcare providers tell you are NOT absolute. You can and you should ask questions, and you do not have to agree with the things they ask you to do or suggest you do. When you're being asked to take a drug, have a procedure or a change in your treatment you really need to know what it is you're doing and WHY.
I didn't buy their bullshit, but I bet a lot of people do - and that scares me. The things that healthcare providers tell you are NOT absolute. You can and you should ask questions, and you do not have to agree with the things they ask you to do or suggest you do. When you're being asked to take a drug, have a procedure or a change in your treatment you really need to know what it is you're doing and WHY.
The good news is that they're coming to get their machinery and tanks. I will never use that company again. Hopefully I never need supplemental oxygen again but I know who I'm NOT using if I do.
I had an ER doctor tell me that my lung disease had spread extensively and that there was no shame in considering hospice at this point (in November). I've never really wished to hit someone in earnest before that day - I sort of hope I never see her again, because she will (at the very least) get an earful from me.
Another tangent? The new tattoo looks so good.
This post got a little random, my mental fatigue is showing. Tomorrow is another day!
Monday, June 2, 2014
Hey, Ellen...
Since I was diagnosed with lung cancer back in August of 2013, I've wanted to share my story with the world. I quickly found out that lung cancer gets the short end of the stick when it comes to research funding and awareness. Lungs can't be made cute or sexy, the awareness ribbon is white - it's hard to market... Not like breast cancer, I get it. Yeah, I'm kind of bitter about it. Can't be helped.
In 2012, just over 314 million dollars was spent by the National Cancer Institute for lung cancer. Twice as much money was poured into breast cancer research despite the fact that lung cancer is the U.S.’s top cancer killer, claiming approximately 160,000 lives per year. It is a devastating disease that can afflict anyone, regardless of smoking history, gender, or ethnicity. One in 14 people will be diagnosed with lung cancer, and it kills more people than colorectal, breast and pancreatic cancers combined. (Source: Lungevity, Cancer.gov)
So let's try and level the playing field, shall we? Lung cancer is often found by sheer luck. They found mine because I'd complained of a pain in my calf, which ended up being a blood clot in my leg (that I rode a 150 mile, two-day bicycle tour on). The hospital performed a CT scan of my lungs to check for clots and found "too many to count" along with an "unknown mass" on my right lung. If you're reading this and you have lung cancer, feel free to share your story about how it was discovered for you.
In my case, most doctors probably would never have considered a relatively healthy, active and non-smoking individual to have lung cancer. Lung cancer doesn't really have too many symptoms in the early stages, so you don't start seeing signs until it's more advanced.
A lot of times, as I'm sitting in a doctor's office, laying in an MRI tube or just standing in the shower I think to myself... "Is this really my life?" and it's not even in a melancholy way - it's just that you never, ever imagine that it could happen to you. The reality is, this can happen to anyone. As easy as it is for some to dismiss lung cancer as a smoker's disease - it's truthfully not. The very air you are exposed to on your bike, in your car - anywhere at all, can raise your risk for lung cancer. But you don't stop going outside, you don't hold your breath until you collapse, you must keep living...
But we need to understand lung cancer better, and we need to research ways to find out how to cure it. If it really kills upwards of 160,000 annually - which would basically be as if you wiped out the entire population of Pasadena, California every single year... Isn't it time to take notice? I'm asking all of you - please, please do not wait for a friend or family member to get cancer before you start caring about it. Lung cancer isn't sexy, there's no way to make it more fun or pretty to make it more marketable. I'm jealous that the breast cancer awareness movement has that going for it. Breasts can be sexy. Pink is a darling of a color. Boobies, ta-tas... Call them whatever, just stick it on a mug with a pretty font and people will buy it.
If it will get you to donate money for lung cancer research, I'll make you a t-shirt. I'll even sell it to you for a fair price. I won't profit a dime, I just want the money to go to where it needs to be. I'll make buttons. Whatever it takes.
Ellen DeGeneres, I love your show and I love the compassion you show to your guests. You seem to be such a genuinely kind person, which is why I'm reaching out to you here and on Twitter. I want people to know that lung cancer is very real among people who are young, active, and otherwise perfectly healthy. I want people to know that however you came to have cancer, it doesn't matter. You deserve love. You deserve a cure, and you deserve a life. You have the gift of a large audience who loves you and will listen, I want that podium just for a day - just for 10 minutes, to be able to tell people how important this is to me.
Please, let me share your spotlight.
#Cheer4Cara
 |
| Am I on to something? Call me, Sanrio! |
In 2012, just over 314 million dollars was spent by the National Cancer Institute for lung cancer. Twice as much money was poured into breast cancer research despite the fact that lung cancer is the U.S.’s top cancer killer, claiming approximately 160,000 lives per year. It is a devastating disease that can afflict anyone, regardless of smoking history, gender, or ethnicity. One in 14 people will be diagnosed with lung cancer, and it kills more people than colorectal, breast and pancreatic cancers combined. (Source: Lungevity, Cancer.gov)
So let's try and level the playing field, shall we? Lung cancer is often found by sheer luck. They found mine because I'd complained of a pain in my calf, which ended up being a blood clot in my leg (that I rode a 150 mile, two-day bicycle tour on). The hospital performed a CT scan of my lungs to check for clots and found "too many to count" along with an "unknown mass" on my right lung. If you're reading this and you have lung cancer, feel free to share your story about how it was discovered for you.
In my case, most doctors probably would never have considered a relatively healthy, active and non-smoking individual to have lung cancer. Lung cancer doesn't really have too many symptoms in the early stages, so you don't start seeing signs until it's more advanced.
A lot of times, as I'm sitting in a doctor's office, laying in an MRI tube or just standing in the shower I think to myself... "Is this really my life?" and it's not even in a melancholy way - it's just that you never, ever imagine that it could happen to you. The reality is, this can happen to anyone. As easy as it is for some to dismiss lung cancer as a smoker's disease - it's truthfully not. The very air you are exposed to on your bike, in your car - anywhere at all, can raise your risk for lung cancer. But you don't stop going outside, you don't hold your breath until you collapse, you must keep living...
But we need to understand lung cancer better, and we need to research ways to find out how to cure it. If it really kills upwards of 160,000 annually - which would basically be as if you wiped out the entire population of Pasadena, California every single year... Isn't it time to take notice? I'm asking all of you - please, please do not wait for a friend or family member to get cancer before you start caring about it. Lung cancer isn't sexy, there's no way to make it more fun or pretty to make it more marketable. I'm jealous that the breast cancer awareness movement has that going for it. Breasts can be sexy. Pink is a darling of a color. Boobies, ta-tas... Call them whatever, just stick it on a mug with a pretty font and people will buy it.
If it will get you to donate money for lung cancer research, I'll make you a t-shirt. I'll even sell it to you for a fair price. I won't profit a dime, I just want the money to go to where it needs to be. I'll make buttons. Whatever it takes.
Ellen DeGeneres, I love your show and I love the compassion you show to your guests. You seem to be such a genuinely kind person, which is why I'm reaching out to you here and on Twitter. I want people to know that lung cancer is very real among people who are young, active, and otherwise perfectly healthy. I want people to know that however you came to have cancer, it doesn't matter. You deserve love. You deserve a cure, and you deserve a life. You have the gift of a large audience who loves you and will listen, I want that podium just for a day - just for 10 minutes, to be able to tell people how important this is to me.
Please, let me share your spotlight.
#Cheer4Cara
Subscribe to:
Posts (Atom)