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SJAS

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Posts posted by SJAS

    "Shine A Light" Results

    in ADVOCACY

    Posted

    Thanks all for the encouraging words. If nothing else, it was an outlet for me to get my frustration out at the lack of attention being given to LCAM. I hate to say it, but I did have an idea this a.m. that I am working on. Guess not quite ready to give up yet. More to follow on that.

    Donna: The KFTY Channel 50 interview was aired on Tuesday during the a.m news program (about 8:40 a.m.) and the KSRO 1350 interview was Wed. a.m. about 7:50. KJZY also aired announcements about it. There were 2 ads in the Press Democrat too, but I know we needed much more publicity. Really disappointed in some of the radio station responses and in the fact that the Press Democrat did not cover it. (Wrote a thank-you letter to the sponsors and volunteers in a letter to the editor and did include a subtle dig to the Press Democrat....Something about thanking the tv station and KSRO for recognizing that the disease which will take 160,000 lives this year is a newsworthy event. Hope it was subtle enough that they will actually print it :twisted: )

    Boy, I would love to have Andrea on board next year. :wink:

    "Shine A Light" Results

    in ADVOCACY

    Posted

    Well, we made it through it. The rain held off and the weather was not too cold. The program actually came together nicely and we received lots of positive comments. We had pins, lightsticks, white carnations for everyone and some truly inspirational speakers.

    1) The good news: We had staffers from U. S. Congresswoman Lynn Woolsey and State Senator Wes Chesbro's offices come, along with the mayor of my town of Sebastopol. I was invited to go to a big UCSF Thoracic Oncology conference in SF the next day, set up a table and talk with some of the top oncololgy docs in the U.S. Also, we met a woman who is an 8 year survivor. She had brain surgery and WBRT and is on Iressa and doing pretty well.

    2) The disappointing news: Only about 75 people came, a good number of them because of Steve. With all the people who have dealt with lung cancer, it is disheartening to think that we would get that kind of turnout. Seems like we talk a great deal about no one in office listening to us and then those in a position to help us come and well.... Makes it hard to prove that people really do believe that lung cancer is an important issue, when we get that kind of political interest and no one shows up. Keep wondering where all the families/friends are.

    Despite my disappointment at the turnout, everyone insists that this should be a yearly event. Even the rep. from Senator Chesbro's office said that next year he expected the entire square to be filled. We'll see....

    It was a huge amount of work, but I don't regret it. It was a good outlet for my anger at none of the big organizations planning anything for LCAM. Perhaps one of the other positive outcomes is that both the Amer. Cancer Soc. and Amer. Lung Assoc. did change their minds and wanted to help. The Amer. Lung Assoc. also set up an informational table. They were instrumental in getting me invited to the UCSF conference.

    I guess it's just hard for me to remember that just because this is the priority in my life, does not mean it's a priority in everyone's life.

    If anyone is ever interested in staging a "Shine A Light" event in your area, I would gladly share all the information which I acquired. The event is solely focused on awareness, education and advocacy because I feel that there are so many other groups focusing on fundraising, I want to go after the federal funding. It certainly did seem to hit a chord with the media. Pretty ironic that I was able to get the media interested and yet missed out with the very crowd that I expected would be clamoring for an outlet for their issue.

    Sorry, I don't mean to whine, it's just that I am so desperate to get this message across. It's been a long 12 days!

    Thank you to Katie & Rick

    in GENERAL

    Posted

    Oh, darn that rain after all your hard work. I am sorry that things didn't work out, but at least you had some good company to spend time with. (Boy, who decided Nov. was a good month for Lung Cancer Awareness??) Our event was lucky enough to avoid the rain. It turned out pretty good, but I was disappointed with attendance. I'll post more in the Activism section.

    I also want to express my appreciation for all you do.

    Congresswoman sending Staffer to Listen

    in GENERAL

    Posted

    Thanks for the encouragement. My energy level needed it :D !

    Kathi - I am so sorry to hear you have been sick and I'm hoping for a quick recovery. I will be printing the program tomorrow, early in the a.m. I would love to put your name in it if you don't mind. (See, I'm thinking positive that you're on the mend.) Really would love to have another survivor story. Sorry so last minute. A few other people are just too shy to speak. I told my co-workers that the next time I say, "I've got an idea!" just shoot me :shock: .

    I was able to convince a friend who is a survivor of testicular cancer to do a short piece on our Bloch Cancer Survivors' Park and it's BEAUTIFUL. I may try to put it on the board. It seems so appropriate because Richard Bloch was a lung cancer survivor.

    A plea from Joyce SJAS - please help this cause--Northern CA

    in ADVOCACY

    Posted

    Thank you all for your encouragement and support. Glad the tv interview is behind me. At least the kids didn't come home from school with bags over their heads, so I guess it could have been worse :roll: Now I just have to get through the live radio interview tomorrow.

    My sister was worried about my hair - sheesh, she should have said something about makeup. Thought of it about five minutes before I had to leave and couldn't find any. I've lived in "laid back" northern CA too long. Ahh, the hazards of having two sons :wink: (Didn't do the hair either!)

    Donna, it would be great if you in-laws could come. Tell them to be sure to catch up with me as I fly around in a panic!

    Congresswoman sending Staffer to Listen

    in GENERAL

    Posted

    Thanks for all your encouragement and kind words. Well, I made it through it and guess it went fair. I stumbled on LCSC and the web site - can you believe it? Few other gaffes too, but I was able to correct myself. Won't be giving up my day job anytime soon :lol: Have a live radio interview tomorrow a.m. and hope I can get it right this time!

    Sorry you can't make it Fay. I was hoping to get to meet you. One of these days, it will work out. Hope all goes well with your procedure.

    Congresswoman sending Staffer to Listen

    in GENERAL

    Posted

    This has been an incredible day. Congresswoman Lynn Woolsey called and is sending a staffer to "Shine A Light" on Lung Cancer. She will give us a brief update about DC and the LISTEN to take back our issues to Washington. The doctor who lost his wife to l.c. last week has agreed to speak - talk about courage, I am totally in awe of him. I have also been invited to attend a huge lung cancer conference for doctors at UCSF. I am so overwhelmed - I really wish there was someone else involved in this, someone who knows what they're doing. Guess all I can do is try my best. Just praying that enough people show up to make a statement that Washington can't ignore us anymore.

    This is taking a bit of a toll on Steve. Too much cancer talk. In some ways I feel bad for starting it. But I am so desperate to get funding for research - it's really between a rock and a hard place. Sorry for the babbling. Still hoping some of you can come.

    LCAM Event Needs Your Help!!

    in GENERAL

    Posted

    Great idea Fay. Good thing some people's brains still work - mine definitely is flashing "TILT" at this point :shock:

    Old Courthouse Square is on Mendocino Ave. between 3rd and 4th Sts. It is basically two blocks east of Hwy 101. Exit 101 North at the Downtown Santa Rosa exit and turn right at the light (3rd St.). Go two blocks and the Square will be on your left side, but it is easier to go straight thru the light and there is a city parking garage on the left.

    It would be fabulous to get to meet you Fay if you can make it. Anyone else up for it? Really hoping to put some real faces on the statistics. Steve just saw the button that says "Cancer Sucks - I am Not a Statistic" and is going to order one. Too bad it won't be here in time for the event.

    If you can't come, the rest of you are going to have to say a few prayers for no wind/rain - and even more that I can hold it together :)

    LCAM Event Needs Your Help!!

    in GENERAL

    Posted

    Kathi, Natalie and Wendy,

    I just have to tell you that you have totally made my day. I have been up since about 5:00 a.m. doing p.r. work for this thing and it can get a bit discouraging. I am finding a lot more families who have lost loved ones than survivors. We really need some balance. Kathi - if you could come I would be so eternally grateful, especially if you could say a few words about your dad's experience and how well he is doing. The Gail P. Ramos Lung Cancer Foundation sounds like a great lead and I will try to contact them tomorrow. I have a musical group lined up and am still working on a couple of other things.

    I am located 50 miles north of S.F., about 10 miles inland from Bodega Bay. (It's pretty up here - worth the trip :) )

    I will be interviewed on KFTY, channel 50 on Tues. about 8:30. I just hope I can make some sense and get people to start thinking about this. Unfortunately, I work 10 a.m. - 10 p.m. on Monday and I haven't had much sleep for days, so I just hope I don't scare people away from the event.

    Natalie - I am so sorry about your mother-in-law. My MIL is a breast cancer survivor also and my sister-in-law recently finished chemo/radiation for it too. You just start to feel surrounded by cancer sometimes.

    Wendy - thanks for the kind words and I just wish there were others around here, because I'm not sure I'm the person to do this...oh well. We just have to do it.

    Just got home from snack bar duty after a soccer game. They lost and are out of the district finals (sshhhh - hurray! one more thing off the "to do" list :twisted: )

    LCAM Event in No. CA Needs You

    in GENERAL

    Posted

    Hi All,

    I am hoping that maybe I can catch up with some of you who only go to this section. We are having an LCAM event and I really need more voices to get our message across. I will be interviewed on a local t.v. station Tues. a.m., so we are getting some publicity. (I'm praying I don't blow it - this is definitely not my thing, but no one else to do it.) Here's the basics:

    "Shine A Light" on Lung Cancer

    Nov. 12 6:00-8:00 p.m.

    Music and speakers

    Old Courthouse Square

    Santa Rosa, CA

    If you want to read more about the event, Ginny posted my longer description in the Activism section. You can also pm me and I will get back to you ASAP.

    Sure hope you can help show the public that l.c. affects a whole lot of people. Really would LOVE more speakers - please, please,please....

    LCAM Event in No. CA Needs You

    in SCLC GROUP

    Posted

    Hi All,

    I am hoping that maybe I can catch up with some of you who only go to this section. We are having an LCAM event and I really need more voices to get our message across. I will be interviewed on a local t.v. station Tues. a.m., so we are getting some publicity. (I'm praying I don't blow it - this is definitely not my thing, but no one else to do it.) Here's the basics:

    "Shine A Light" on Lung Cancer

    Nov. 12 6:00-8:00 p.m.

    Music and speakers

    Old Courthouse Square

    Santa Rosa, CA

    If you want to read more about the event, Ginny posted my longer description in the Activism section. You can also pm me and I will get back to you ASAP.

    Sure hope you can help show the public that l.c. affects a whole lot of people. Really would LOVE more speakers - please, please,please....

    Need you at LCAM rally in No. CA

    in NSCLC GROUP

    Posted

    Hi All,

    I am hoping that maybe I can catch up with some of you who only go to this section. We are having an LCAM event and I really need more voices to get our message across. I will be interviewed on a local t.v. station Tues. a.m., so we are getting some publicity. (I'm praying I don't blow it - this is definitely not my thing, but no one else to do it.) Here's the basics:

    "Shine A Light" on Lung Cancer

    Nov. 12 6:00-8:00 p.m.

    Music and speakers

    Old Courthouse Square

    Santa Rosa, CA

    If you want to read more about the event, Ginny posted my longer description in the Activism section. You can also pm me and I will get back to you ASAP.

    Sure hope you can help show the public that l.c. affects a whole lot of people. Really would LOVE more speakers - please, please,please....

    A plea from Joyce SJAS - please help this cause--Northern CA

    in ADVOCACY

    Posted

    Thank you Ginny and Elaine!

    Quick update: KFTY Channel 50 has asked me to come on their a.m. show on Tuesday. Guess the plan is to interview me for 5 min., break for commercial, then return for another 5 min. This will no doubt be some of the longest 15 min. of my life :shock: I am not a public person, to say the least.

    So where are all you Californians? I need you up here!

    David W. Arnold

    in GENERAL

    Posted

    Dear Karen and Paddy and family,

    I am so very sorry to hear this news. I have felt such a bond with David and Paddy because of so many similarities. There are no words - just my deepest condolences. Prayers for you all.

    Joyce

    LCAM Event Needs Your Help!!

    in GENERAL

    Posted

    Dear Community,

    I have been off the Board for a couple of weeks and I am typing this on the dash, so forgive me for not keeping up with you. This is what's happening:

    At the end of Oct., I called around trying to find out what events I could volunteer for LCAM. There was NOTHING! Not one! Well, that's not ok with me :evil: This is what's happening:

    "Shine A Light" on Lung Cancer

    Old Courthouse Square

    Santa Rosa, California

    Nov. 12th - Friday

    6:00 - 8:00 p.m.

    Bring flashlights/lightsticks and help us bring

    lung cancer out of the dark ages

    This rally desperately needs your help. We have some interest from the local media but we need to make it impossible for them to ignore. We have a city permit (got it yesterday!) and ALCASE is the organization lending its name and some materials. (ACS and ALA could not help in any way on "such short notice" - no materials, speaker, nothing! Of course, I did tell them that it was such short notice because they hadn't planned anything.)

    What I need from you: H E L P !! :shock:

    Can any of you make it or do you have family/friends in the area who could come? Santa Rosa is 50 miles north of S.F. I desperately need more speakers. One speaker I had really hoped to get is a local doctor whose wife was dx'd last year. Sadly, she died on Monday. You know how hard it is to link up with l.c. patients (find any l.c. support groups lately :( )I am running out to work this a.m., but I will be checking the computer late this afternoon.

    Everyone says that this is impossible - but I don't believe it! With passion and caring anything is possible. Let's show 'em!

    p.s. if anyone wants to take a moment and put this in the other sections, I'd appreciate it. I am literally out the door....

    Just started treatments, any advice

    in INTRODUCE YOURSELF!

    Posted

    Welcome Joni,

    My husband had a similar start, except for the Gemzar. You'll find lots of people with similarities to your husband around here.

    One hint which I hope is helpful is about the protein drinks. My husband was losing lots of weight with his first chemo and if your husband has mouth sores, my guess is that he will have a hard time keeping weight on also. Try to find nutritionally balanced drinks which your husband can tolerate. Like our onc. told us about the protein drinks - that's part of the low carb craze that everyone is using to LOSE weight. Also, look for a cancer cookbook that has helpful suggestions for dealing with all the eating problems which can arise during treatment. PM me if you want to know the name of the one I have.

    Best wishes for a gentler but ultimately successful treatment.

    Family and Angels

    in CAREGIVER RESOURCE CENTER

    Posted

    Paddy,

    If love can perform miracles (and we know that it certainly can!) then David's got a miracle on the way with that incredible expression of love from so many people. Hopefully, it will come with the Iressa.

    One concern, Paddy. You said David is using Vicodin for pain control. I am trying hard to remember (but it's pretty foggy up there), but I seem to recall that Steve was sent home from the hospital with Vicodin and Percocet. Our incredible home nurse was the one to call the doctor and bring to his attention that my husband had liver mets and reduced function and should instead be on morphine which does not damage the liver further. I may be confusing some of the meds, but you might want to check it out to be sure.

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