Lung Cancer Alliance of Florida, Inc.

I had been working with Lung Cancer Alliance in Washington DC. Unfortunately, my contact there has been very unresponsive with regard to helping me organize a Chapter of LCA here in Florida. I have been calling and writing for months now. She is a young girl who says she will call ...and then doesn't. She sets appointment times and doesn't call. She says she will be sending me material....and doesn't follow thru. Her last message was LCA doesn't have the resources to start something in Florida this year.

I finally said, screw it....and am striking out on my own. Maybe by forming Lung Cancer Alliance of Florida, Inc (the name I chose and now own the rights to) I will get their attention that I am not on their schedule.

Interestingly, LCA is organized -- according to their website -- as a 501(c) 3, which is a charity where donations are tax deductible. But my understanding is that a 501 (c) 3 is prohibited from lobbying or political activity. I will have to look into it, but my understanding is that you can only be a tax deductible non-profit if you refrain from political activities. Clearly LCA does not, but maybe they get around it somehow by how they frame their mission....

I have confirmed our first meeting for Feb 6th. Here is the initial agenda:

Lung Cancer Alliance of Florida, Inc
Organizational Meeting February 6th

Mission Statement
To raise public awareness of lung cancer and to educate the general public about lung cancer;
To promote, both at the state and federal level, funding of lung cancer research, including treatment, early detection and screening ; To provide encouragement and support to lung cancer patients and their caregivers in Florida

Organization

Board of Directors (5 people)

Officers

Proposed Officers:
Thomas Cappiello – president
Vice President -- Jen Wadsworth
Secretary -- Mary Grace Lorah
Treasurer -- Geof Lorah

Committees:
Public Policy / Strategic Planning Committee
Finance Committee
Events and Promotion Committee
Media and Publicity Committee

Goals:
Raise $50,000 for educational activities
Add 150 members to the LCA-Fl member list
Conduct a "Report Card" survey on the State related to funding lung cancer
Introduce a bill that ties increased tobacco tax to funding lung cancer screening and detection
Introduced legislation to make November "Lung Cancer Awareness" Month in Florida
Organize the State into advocate districts; Create relationship with Moffitt
Create online site for patient and caregiver support
Create a Lung Cancer Alliance of Florida hotline for patient support
Develop a "speakers bureau" to talk with groups about lung cancer
Develop "position papers" on screening protocols, research
Advocate insurance reimbursement for CT scan
Advocate lung cancer patients involvement with clinical trials

Yoko as Citizen Philosopher

I went to Tampa this morning to get Yoko to her final interview with the INS. She had to get up to Tampa by 8:30 AM, which meant we needed to leave at 6:50 AM, which meant we had to be up before 6 AM. We got there on time and everything went well. She passed her interview with a recomendation that her application be accepted. The only thing left now is the swearing-in ceremony, which will happen next month.

We had Bill Flynn, an immigration attorney with Fowler and White, helping us with the process and attend the interview with her. Having an attorney there turns out to have been unnessary, but we took the precaution in case of some unforseen trouble. As her husband, I could not attend the interview and we've dealt enough with the INS to know that they can be difficult.

Yoko was nervous about this interview for months now. She has been studying over the last few months as if she were sitting for the bar exam. She had her civics lessons in hand every free moment and has now discovered that she is actually finding civics and politics interesting. I hope that she will continue to study and deepen her interests.

On January 7th Yoko was awarded a Paul Harris Fellow for her community service work with the Peace River Rotary. It is an honor that Rotary Clubs around the world bestow on people in the community to honor community service. Our club awarded the Paul Harris Fellow to Yoko by making a $1000 contribution in Yoko's name to the Rotary Foundation. She received a metal, pin and certificate to evidence her award. She wore the pin for the first time today, hoping it would garner some merit with the INS and, in effect, say " See? I am a good citizen before I have even become a citizen!" Isn't she cute?

Now Yoko wants to write a book and teach Americans about how to be happy.... She thinks we, as a people, are not happy and don't know how to be happy. She clearly sees some of the issues of our society. She wants to teach us how strong morals and ethics (not "God" per se) can lead to a happy life. This is her next project. I hope she will follow through. She has a lot to teach us.

The Meaning of Life -- Cancer as a Wake-up Call

I read this posting on the LCA website today and this woman captured what I feel as well....that there is more to living life than a daily routine and earning a dollar. I wanted to share this with my girls....here is a woman who has learned a great life lesson.

***

Hello Daily Survivor!

I LOVE your LCA name...we are all afterall survivors, tackling our lives "one day at a time"...and I, for one, intend to add many more days to the 19,375 I have already lived! :)

My treatment was like yours was in 2004...the chemo/radiation sandwich. Since then (03-08) I have also had a craniotomy for a suspected "growing" brain tumor. At time of surgery, the pathologist determined the met was d.e.a.d; it was only necrotic tissue. No tumor. the originaal brain met was killed by one-shot dose of radiation. So, like you, I am Stage IV in diagnosis.

Since my treatment ended last year in March, I have been NED and I am on no medication at all...except my strict self-imposed "food", exercise and supplement regime...and of course, most importantly, my total trust in GOD. There have been so many blessings in my life since my journey with cancer started...no doubt there were many, many more in my 19,000+ days on earth so far, but shamefully I never took the time to acknowledge them or even notice them at all - I was too busy "living" to see that I really wasn't living at all.

Mine was the typical life...up at the crack of dawn, stumble to the coffee pot, dash in my "low fat" creamer (the only 'healthy' portion of my diet in those days), hop in the shower to go through the daily ritual of hair/make-up/wardrobe...emerging over an hour later, grabbing another coffee, out the door, (no time for breakfast) running late as usual (so I am already stressed), as I fight traffic to work (even more stress), stomach grumbling til lunch time (fast food, wolfed down), dealing all day with other peoples problems as usual (stress,stress...and who needs fresh air in the daytime anyway?), fight traffic all the way home in the dark (umhmmm...stress), what to do about dinner that will please everybody? Wait. Do I need to run to the grocery store?? (I should be used to this stress by now, right?) Okay, home. Finally.

Time to start Job#2 - or #3 today. Cook (usually that means canned, boxed or even better yet, microwaved food...did somebody say "nutrients"?), clean, more "issues" to deal with...oh yeah, time for television, off to bed eventually...6 days a week, over and over... Is this living? Is this what God intended for our lives? I think not. I was miserable but was too busy going through the motions to notice. Cancer was my wake-up call. Boy was it ever.I can honestly say that having radically changed my life, cancer in some ways was the BEST thing to ever happen to me.

For the first time in my life, I am able to enjoy my (grown) children, I have completely fallen in love with my husband (and he with me) because we have spent so much REAL time with each other, learning things we never knew about each other before...strengths, weaknesses - conversation has real meaning now, it's not just a bunch of jabbering...my mornings are now spent preparing and eating my organic, fresh foods as I thank and praise God for all the blessings on my table and in my refrigerator. I am able to take my looong walks under God's blue skies, breathing deep the fresh air, feeling the winds in my face (instead of sitting in a cubicle under flourescent lighting all day with a ringing phone reminding me of my "responsibilities" to the dollar).

Would I trade my current medical diagnosis in for the "old" pre-cancer God-less life? Nope. Am I happy? Yes. Ecstatically, probably for the first time in my life. I found God after my original diagnosis, out of desperation because "life" as I knew it fell completely apart and I was spinning. I felt lost and so completely horrified. In the darkness of my fears, I reached out a blind hand and God was there and took it. Yes, even my search for God has been up and down, but He never let go of me, He never let go of my hand; I just couldn't always find it in the dark because my eyes were closed.

If I had a choice I would like to now have another 19,375 days of my new way of life...more time to love the people so important to me, more ways to show them how much they mean to me and how wonderful they are, more time to bring praise to Christ, more days spent in the fresh air under blue skies...but I'm not going to worry about the remaining number of my days, I am too busy loving the relationships God has blessed me with.

Oh yes...no more boxed, canned, microwaved foods...no foods with pesticides, no artificial anything...just 99% Raw, wholesome foods that God provided us with on His earth. Clean fish and beans for protein, tons of phytonutrient rich plant foods, no artificial shampoos, detergents, etc...and I feel FANTASTIC! God, family, God, diet, God, excercise, God = happiness = HEALTH.

God bless you Daily Survivor! You keep fighting the good fight, continue to lean unto Christ and enjoy your days in the sun, fishing pole in hand!

God bless us all ~Ellen

Making a Small Splash

When I started blogging, I really did not think I was going to live more than a year. I was in a hurry to write and leave some kind of written statement about my life. As my treatment has progressed and as a result of having a robust response, I have had less of a need to write. Ergo, I have become less and less diligent about writing every day.

My column in the Charlotte Sun, which is based on entries in this blog, is being noticed. I had a lady write to me today Her message read as follows:

Hi Tom,

Let me start by saying you are the first section of the paper I read every Sunday morning since you started writing your column. Like you, I have stage IIIA Lung Cancer. For the same reasons you started out with, I have chosen not to share my condition with others because I don't want to lose their business and right now I am
very able to do my job. No one would know I have cancer.

Besides thanking you for sharing your experience with others, I'd like to ask you who your caring Dr. Steve is and where you went for your radiation treatment. I am currently being treated up at Moffitt, and I am scheduled for a PET scan on 2/3 because it appears that my cancer may have traveled to several enlarged lymph nodes. Radiation will be my next course of treatment, and I don't want to travel to Tampa for it. I'd really appreciated you giving me your impressions of your treatment here (I live in Punta Gorda). I have a friend who works as a nurse at Florida Cancer Center and she told me she has seen patients who have had radiation with some serious burn issues.

Thank you again for sharing. I look forward to your response.

Mary

Nearly every week someone is calling me or contacting me with regard to the column. A lady from Louisiana called me recently as she is being sent my column each week from a relative in Punta Gorda. She read that I was collecting Miro's artwork and had one to offer me. The week before that I spoke with a woman who was very distraught over the fact that her 35 year old son (never smoked) has been diagnosed with Stage IV Small Cell Lung Cancer. We spoke by phone for over an hour.

I have been invited to speak to support groups, Rotary Clubs, and other local organizations. In late November Jeff Collins invited me to join him on the radio to speak about lung cancer and the need for research dollars. Last Wednesday I went before our State Legislative Committee (two State Senators and three representatives) to suggest that, if Florida is going to increase the tobacco tax, that some of those dollars be used for research into the screening and early detection.

Finally, Scott Lunin contacted me to say that he would like me to help Florida Cancer Specialists campaign for lung cancer awareness. Of course I said yes...although at this point I am not sure about what exactly is going to be involved.

I always have a lot going on, but if I am going to continue my Sun Column, I need to keep adding to the blog, so you can expect to see more entries. Its nice to see something coming from the effort I am making. I am hoping we can make an even bigger splash and get something done on the lung cancer reseach side.

Prayer to St Jude

I wanted to put this in the blog. I read the Lung Cancer Alliance website every day and I am almost always brought to tears. There are so many people suffering with lung cancer and they go through so much before their demise. Someone posted this prayer to St Jude. I hope I never need it....but just in case:

Most holy apostle, St. Jude, faithful servant and friend of Jesus, the
church honors and invokes you universally, as the patron of hopeless cases, of
things almost despaired of. Pray for me, I am so helpless and alone. Make use I
implore you, of that particular privilege given to you, to bring visible and
speedy help where help is almost despaired of. Come to my assistance in this
great need that I may receive the consolation and help of heaven in all my
necessities, tribulations and sufferings particularly (here make your request)
and that I may praise God with you and all the elect forever. I promise O
blessed St. Jude to be ever mindful of this great favor.