We signed the contract on the venue for the next Rockabilly Prom! Date is set as February 13, 2016! More to come, but until then please enjoy this video from our inaugural event:
This past week was particularly difficult for many people, present company included. I'm blaming it on the full moon in conjunction with Mercury going retrograde. Because if I don't blame it on something then I was just coming apart at the seams and we can't have that!
The good thing is the meltdown was relatively short lived. Once I allowed myself to let out my pent up frustrations, concerns and doubts things started to change immediately. I got a private message from someone who wanted to volunteer, I could think more clearly, and I received a lovely message from one of the radiation centers we provide care kits for. You can read it at the end of this post.
Long story short... You DO make a difference. You ARE a vital part of your community. You CAN get everything done if you have reasonable expectations. People DO want to help you. You ARE NOT ALONE! Let out whatever negative energy you have pent up inside. Vent. Cry. Say crazy things but do not make quick decisions. Give the universe some room to fit in some positive goodness and it will come.
There has got to be a way for me to become more consistent with this blogging.
Until then, here's another random update. Our Grease Singalong event was great fun and quite successful. We plan on doing it annually due to the overwhelming positive response. There have been requests for other singalong events but I just don't know which direction to go in yet.
The event that is coming up next is something I'm really excited about! On Saturday June 13 we will be partnering with Anais Bellydance and Fusions for their annual gala. We will be running the silent auction and they are generous enough to donate the proceeds to ROCSTART. The gala show will be great fun with lots of talented performers. Tickets for the show are only $25. You can buy your tickets here or stop by Anais Bellydance and Fusions at 9735 Old St. Augustine Rd. Unit #11, Jacksonville, FL 32257 or at Grease Rags Clothing Company at 40 West Monroe Street, Jacksonville, FL 32202. Also, if you are interested in taking any bellydance workshops during the River City Raqs event, please visit their website for workshop schedule and pricing.
WHAT: GREASE Sing-A-Long!!!
WHEN: April 18, 9PM
WHERE: Sun-Ray Cinema, 1028 Park St., Jacksonville, FL. 904-359-0049
TICKETS: $15 Buy Now
I mean, let's just get real here. We all love the movie "Grease". We all sing to it at home. We all love each other. We all love Sun-Ray Cinema. We ALL sound better singing in a group. So let's just do it!!! Tickets are $15 and a large portion is for the benefit of ROCSTART. Help a local charity and have a great time! If you had a great time at Rockabilly Prom, or if you missed it, please don't miss the GREASE Sing-A-Long!!!
All of my life I have been obsessed with my teeth. I was one of the weird ones who loved going to the dentist. I even paid for an extra cleaning every year beyond what the insurance covered. You can imagine the horror when I was told that radiation could have serious negative effects on my teeth. (To be exact, "Your teeth may start deteriorating or falling out within 2 years.") Not only does the radiation damage the enamel on the teeth but it also destroyed some of my saliva glands. Saliva is a key player in preventing tooth decay.
I haven't had any teeth fall out yet but there is definitely significant damage. I've had 2 fillings and also had the edges of my lower front teeth filled because they were chipping away and were becoming razor sharp. Now I need the top front teeth fixed for the same reason, plus I require a crown and 2 more fillings. I try to stay up on my dental care and for the first time in my life I actually get nervous when I go to the dentist. If anything happens that requires a tooth to be pulled then I may require several Hyperbaric Oxygen Chamber (HOC) treatments before I can have any extractions. The HOC treatments would help to insure there is enough blood flow to the jawbone to prevent necrosis. If the bone dies, well then you're in a world of sh*t because who wants to have their jawbone cut out? Not me! Ok, I'm being a little dramatic but it does happen quite often with oral or head and neck cancer patients.
In the spirit of taking care of my teefs, I'm committing to this 30 Day Oil Pulling Challenge. To learn about the benefits of oil pulling and how to do it, please check out this article.
I remain hopeful that cancer will not be the death of me. I am 2 1/2 years cancer free. I wish I could be one of the people who never worry about it again once the doctor says the scan is clear. I just don't operate that way no matter how hard I try. The least little thing, such as an odd looking spot on my tongue, sends me into a tailspin. The downward spiral of "What will I do if it's back?" I don't wish this vicious cycle on even my worst enemies. There is no one person I despise badly enough to put them through this.
Even though the anxiety and fear drives me (and yes it's almost like a fuel), I remain hopeful that cancer will not kill me. Then I learn of projects such as this upcoming film by Ken Burns. It will show what the cancer patients of the past endured, where we are now in the fight, and where the future might take us. This film echoes my feeling of where we are scientifically. I feel that we are poised, right now, to find cures for certain types of cancer. If not cures, then at least better ways of detecting and treating to ensure better survival rates. I'm excited about the science of things. I wish I would've been one of the ultra intelligent people who make things happen. The ones who really figure things out. But I'm not and that's ok. At least I'm still here to spread the word about this wonderful film. A film of reflection and hope. Please keep a lookout for it in Spring 2015.
A friend just shared this article from Rolling Stone magazine. So disappointed to hear that oral cancer has affected another person. Anyone who knows me, knows I grew up in the 80's as quite the metalhead. Yes, I wore black nail polish. I had the tightest black and yellow zebra striped pants you ever laid eyes on. The black leather studded belts and wristbands were plentiful. I had an ongoing debate with my guy pal about who was better, Motley Crue or Iron Maiden. He was on Team Eddie (the mascot for Iron Maiden). I was on Team Hairspray and Lipstick (hey, nobody wore it better than Tommy Lee back in the day.
Nonetheless, I do acknowledge that musically Iron Maiden was a superior band. The songwriting and the sheer technical ability was nearly unparalleled at the time. Bruce Dickinson had a vocal range and a scream that was nearly as iconic as Rob Halford from Judas Priest. My thoughts are with Bruce at this time. I know the stress of dealing with cancer. I've even thought about what would happen if my speech had been affected. Praying that he is spared from any after effects that will hinder him from performing in the future. However, I also know that cancer changes your needs and desires and a strong person such as Bruce will certainly roll with the punches. Here's a little video, just because I want to:
I always have great aspirations. In my mind I imagine how easy it is to blog every day. It doesn't have to be an extensive entry. Just something informational or something to say hi. No big deal. Yet here I am, more than one month since my last entry.
In my defense (not that I think you expect an explanation), I have been uber busy organizing the Rockabilly Prom. Initially it was quite a struggle. I heard a lot of "I've never heard of that" and "We don't donate until you hit the third year". It's kind of like trying to get your first job but nobody will hire you with no experience. Fortunately people started to realize that I do have the appropriate experience. The financial industry background gives me the business sense, being a small business owner gives me people skills, anyone who knows me can tell you I know how to throw a heck of a good party, and I am all too familiar with the needs of oral cancer patients.
So things finally started to come together easily and I'm very excited for what lies ahead. We are just a little over 4 weeks away from Rockabilly Prom. I've been chastised for calling it the "1st Annual" because there can't be a first annual anything. I can tell you this for certain. Living through a Stage IV cancer diagnosis has made me really not too concerned about being the grammar police. That bit of energy I would take pointing out someones error (several times per day) is far better used to get through the day without being wiped out. I realize now that, in some ways, having cancer made me a better person. Don't get me wrong... I would much prefer to never have to think about cancer a day in my life and still be the hardcore corporate meanie I was before. Or would I? It's an answer that becomes less definitive as time goes by. And I'm thankful to still be here, watching the time pass, getting older and certainly growing wiser.
It's no secret that smoking is a major risk factor for oral cancer. We are pretty clear on smoking being bad all the way around. What completely befuddles me is this whole hookah trend going on right now. People who won't dare touch a cigarette will partake of hookah at local lounges or at house parties like there is nothing to it. I always thought it must be extremely unhealthy since you use charcoal as the heat source. Well, in an article published in "Cancer Epidemiology, Biomarkers & Prevention", a journal of the American Association for Cancer Research we now find strong evidence that smoking hookah drastically raises the benzene levels in the smokers body and in the people who intake secondhand smoke.
You might be asking "What is the benzene stuff you speak of and why is it important?" To be quite frank, I'm no scientist and I don't really know what the heck it is. I do know it's found in cigarette smoke, and apparently hookah smoke. The CDC knows all about benzene though. They say "Benzene works by causing cells not to work correctly. For example, it can cause bone marrow not to produce enough red blood cells, which can lead to anemia. Also, it can damage the immune system by changing blood levels of antibodies and causing the loss of white blood cells." You can read more fun facts about benzene here. More interesting information from the World Health Organization (WHO) tells us that hookah smoke" is a source of benzene exposure and is, therefore, a risk factor for leukemia."
Hookah tobacco smoking is not only linked to increased risks for leukemia, but also for lung and oral cancers, coronary heart disease and pulmonary disease.
Not cool. Not glamorous.
During my visit to the Ackerman Cancer Center last week, I became aware that certain insurance companies won't cover the liquid meal replacements that many oral cancer patients have to use in their feeding tube.
The tube is put in place for many reasons. Usually due to burns in the throat from radiation, to allow healing after major surgery, or for many other difficulties with eating and drinking due to treatment for oral cancer. I had my tube for several months. I was lucky it was that brief. Some oral cancer patients are on a tube permanently after treatment, never able to swallow again.
Naturally, when I heard that an insurance company might possibly turn down this request, I was appalled. This is not cans of deliciousness that are refreshing and tasty. This is not something extra to "give you wings". It's life n a can. Even more so for the infirm, elderly or income challenged who can't buy a $600 blender and lots of fresh whole foods every day. As a matter of fact, if you took these formulas by mouth I bet it's disgusting. The formula I used smelled like a can of salty meat. And no, I never even touched a drop to my tongue. No way. No sirree, Bob. In spite of it seeming very unappetizing, I was grateful for it. It saved my life.
When I finally had my tube put in I was consuming about 100 calories per day and taking 3-5 sips of water. You quite literally cannot live on that. When I arrived home from the hospital there was a case of my "food" waiting for me. It never even occurred to me that insurance wouldn't cover it. Yet here I am, in just one weeks time, pondering a conversation and reading an article about an insurance company refusing to pay for this necessity. You can read the article here if you like.
Some would say "Well, her family would need to feed her anyway. Why should insurance pay?" Here's the thing... Many families don't spend $500 a month on groceries and now this is what it will cost to feed just one person. What if they can't afford the extra $500? Then what does this 25 year old girl in California do? Hopefully her doctor has some sort of patient assistance fund. Hopefully there is an organization in her area that can help. Hopefully we will soon be able to help the next person in our area who runs up against this dreadful issue.