Breathe Deep, Cleveland!

I've been talking off and on about hoping to have some sort of event in Cleveland to raise funds for lung cancer research. After nearly a year of planning, I'm happy to say that our dream has been realized, and that Cleveland will have a 5k Fun Walk/Run to raise awareness and funds for lung cancer research!!

The website is a GO! 

When: June 27th, 2015
Where: Edgewater Park

Event Page
Event Facebook Page
Event Twitter
My Donation Page

I know a lot of people are doing a lot of different fundraising things, but I ask you to send a dollar or two my way. My goal is steep - and if I meet it I'm going to go even higher. Lauren Hill has inspired me to raise as much as I can for lung cancer research. If you don't know of her story, click here. She has raised over one million dollars toward cancer research. If we're being honest, I want to do the same. If you know someone with deep pockets, send them to my donation page!

Honestly, though...I'd be happier if a lot of people donated a little - instead of one or two people donating a lot, but I'll take it all.

MOVING ON!

I had a weird dream last night. I blame pain medication.

I was abducted. I don't know if it was by humans or aliens, but they appeared to be human. They took me to a place that seemed to be some hippy-dippy "New Age" healing center. They gave me radiation therapy with gemstones that were unavailable to anyone else. I was told I could choose one person to give the knowledge to, and enough gemstones to start the process of developing more stones.

I chose my oncologist. When I returned home (I got the feeling I never left Earth but who knows - this was a dream after all) I was scanned and was cancer free. Cool, huh?

Anyway, I did a bad, bad thing yesterday. I didn't take my chemotherapy meds. Intentionally.

Why? I really didn't want to throw up this morning. The nausea medicine I was given to take in place of Zofran at night before Zykadia actually does work, about 75% of the time. The other 25% I'm very sick for 10-45 minutes. I take medicine to help me stop throwing up, and then I fall asleep. I'm not entirely sure, but I think I slept most of the day yesterday.

Yes, I'll take them tonight and again the next night and so on. But honestly, it's starting to affect my job a little bit. If it's working, I will pick this treatment over my schedule - barfing or no barfing.

I'm a little afraid to be weighed again. I feel like I at least get one good meal in a day - with some snacking here and there... But sometimes I don't. Lots of times, it's completely my fault. I have frozen fruit in my freezer. I could make smoothies. My goal is to work on that.

Back in the saddle...Again!

I've been so lucky to have caught several days of good weather in the past couple of weeks! Miami Beach was wonderful (even on the "cold" day) and then we saw family in Columbus last weekend for St. Pat's, and then it was pretty decent back home for a day.

I got to go on a short bike ride yesterday, and that was good. It was the first time I'd been on my bike since last fall. It honestly felt a little weird. In Miami Beach I'd ridden a small step-through bike that seemed a lot lower to the ground. Honestly, my seat was probably too low. Anyway, it was weird - but it was good to ride again - even if the ride got cut short (long story!!).

Am I doing this correctly?

I've got my eye on a recumbent tricycle and I hope to test drive it very soon. Riding yesterday wasn't painful - just...weird. My biggest concern was lifting my leg over the seat and crossbar on the dismount. That's a tricky thing right now, and I was careful not to trip over my own bike or hurt my leg any more than it hurts.

My time on the bike was pretty good. I didn't feel any pain in my hips or legs. I did brake a little hard at my first stop light and that scared me. The seat post is a little high, but it can be fixed.

Meanwhile, I've been having some anxiety recently about my health. I'll have a scan in a little less than a month, but I'm fearful that the medicine I'm on isn't working. Xanax helps to allay this fear, which is good.

Since I got back from Florida I've had a bit of a cough (planes are vessels for disease, I know). I am out of breath after going up stairs while carrying something (could be attributable to a cold). I can take deep breaths, I can speak normally. I'm not wheezing, I'm not coughing up blood. I don't have a fever. Surprisingly, I wasn't particularly out of breath after riding my bike.

That, obviously... Is because bicycles are magical.

When I sit in a funny position, my leg hurts more (again, makes sense). Lots of this stuff is probably obvious, and my rational brain knows this.

Fire = HOT!

But my irrational brain thinks of course, that this is the pulmonocalypse and I'm deathly ill. In my defense, that's happened before. I will never not be afraid of things getting worse, or coming back, or spreading... No matter what happens. I could be disease free and would have a conniption if I ever felt short of breath. The fear will never go away.

I did get a new medicine to manage nausea that seems to work pretty well, most of the time. What usually ends up happening is that I'll wake up nauseated and then will be sick for an hour or so - during which time I take another medication (anti-emetic) which works but makes me sleepy. Cue me falling asleep on the bed with a constant stream of King of the Hill going on in the background. I can sleep through half a season, sometimes. Later on in the day I might feel human if I eat something. Steak usually does the trick, honestly. I have been known to eat a steak with nothing else - just to get the protein and calories. Also, steak rules.

One thing about Bristol Myers Squibb...They sure know how to cook a steak.

Tonight I'll attempt to eat some corned beef - it sounds good so that's definitely a start! With yesterday's dinner I was pickier than my Brother-in-Law... I got a sandwich at Melt and picked off most of the green stuff, took the shrimp off of the bread and just ate the shrimp. I may have eaten a few pieces of the bread, but it wasn't much of it. I feel like I'm getting enough to eat, I think... Not sure if that's my brain telling me I don't want food because I'm satiated - or my brain falsely telling me I don't want or need any more.

The Breathe Deep Cleveland 5k walk/run will have a website up later this week. I believe it might be live now, but don't want to tell you to sign up for anything yet in case it might still be buggy (my contact at LUNGevity hasn't announced that the page is up, so I'll wait to post about it).

Today I'm giving you homework. It's time to make an upbeat playlist for those gloomy days. In comments, please leave your favorite upbeat song. You can also Tweet me if you'd rather do that, or leave your suggestion in my Facebook comments. Help me out! (Note to Dr. P: Tubthumping is not allowed on the list.)

Move over, Movember.

I'm not going to grow a beard for "No Shave November". I don't think I could if I tried, really. Steroids gave me peach fuzz, that's it.

For those that don't know, The Movember Foundation is the leading global organization committed to changing the face of men’s health.

The Movember community has raised $559 million to date and funded over 800 programs in 21 countries. This work is saving and improving the lives of men affected by prostate cancer, testicular cancer and mental health problems.

That being said...

November may be a lot of things to a lot of people, but to me it's Lung Cancer Awareness Month. You can't masculinize or feminize lung cancer - though 1 in 13 men will get it at some point in their life, and 1 in 16 women will get lung cancer in their lifetime.

In 2014 alone, there have been about 224,210 new cases of lung cancer (both small cell and non-small cell), and about 159,260 have died from lung cancer this year. (source: cancer.org)


While the risk is higher for smokers, lung cancer is NOT a smoker's disease and shouldn't be dismissed as such. Just because you may engage in an activity that is a risk factor for lung cancer doesn't mean you will ever get it, however those who lead a perfectly healthy life are also at risk.

If you breathe, you can get lung cancer. 

That's why asking a person "Did you smoke?" is probably the most insensitive thing you could ask a lung cancer patient. The only person that should ask that question is their oncologist. Even if an individual smoked, you have no way of knowing that it's what caused their lung cancer.

...Even if it did, would you say a smoker with lung cancer is any less deserving of care or treatment than someone who never smoked?

We need to focus less on the stigmas of lung cancer, and focus more on understanding the disease so that scientists and doctors can find a cure. Funding research is the key to unlocking the secrets of cancer.

The government doesn't seem all that concerned with funding lung cancer research, though it kills more people than breast, colorectal and pancreatic cancers combined. (Source: LUNGevity)


Most of us pick our battles. I don't have a choice but to fight.

It's up to all of us to put lung cancer in the spotlight - it's already on a pedestal:

Source: Lung.org

Visit resources like LUNGevity, the American Lung Association and the American Cancer Society for ways you can help fund research. You can also visit the websites of local cancer centers for volunteer opportunities and ways to donate funds directly to the centers. 

There are often bike rides, 5k races/walks and other events that take place throughout the year nationwide, check to see if there's a lung cancer event near you. 

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.

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!