NOTE:
This blog was first written on Thursday July 10 th after the events occurred. Unfortunately, the computer hookup at the hotel failed and the material that I thought was saved was not. Oh, technology!
This morning we were up with the chickens since we would be boarding our bus to the Capitol at 7. We were there with time to spare as were the rest of our friends. This is an opportunity for us to go mad with teal clothing and so some did.
We were a collective fashion statement as some us wore t-shirts printed with teal ovarian slogans / admonitions, there were hats loaded with awareness pins and one hat covered with crochetted teal flowers. There was also a teal straw western hat, in our midst. Yee-Haw!
Rina and I were conservatively teal in comparison.
The ride was uneventful and we stared at the monumental sights as we were driven to the Rayburn House Office Building for breakfast with Representative Rosa DeLaro, CT, an Ovarian Cancer survivor of 22 years. After our bus was inspected by bomb sniffing dogs, we were cleared to pass and proceed to the entrance.
During breakfast Rep. DeLaro joined us and gave a rousing speech. She was intense and inspirational, so we felt even more informed and inspired to tackle the offices we would visit.
Capitol Hill is always a challenge and this year was no exception. Our appointment with Senator Nelson’s legislative aide was scheduled for 11, and then we were scheduled at Senator Martinez’s office for an 11:30 appointment. Their offices are in Hart Senate Office Building and Russell Senate Office Building respectively. You see the problem. Our breakfast ended at 9 am so we had plenty of time to formulate a new plan.
We decided to visit Rep. Weldon’s office even though the appointment schedulers had not secured us an appointment. Rep. Weldon’s office is conveintly located in the Rayburn House Building where we already were.
We quickly found his office, signed his visitor’s book and went in. There was one young women sitting in the reception area who greeted us. The office was appeared to be very quiet, no behind the scenes hustle bustle, no C-Span on TV. We asked to speak to the Legislative Health Aide and were told that she wasn’t in. She said that Rep. Weldon, “is retiring”, so there’s not much going on.
I don’t know what that was supposed to tell us, but we wondered if she was implying that he was at home practicing (for his retirement) and everyone else was out looking for a job. ? We left our information, took a photo outside the office and left.
We were on our rounds with Carol Dierkson, Communications Manager in the OCAF office, so our FL Senators are of common interest. We made a group decision to throw the clock away and proceeded to our appointments early. We know that it is highly unlikely that we would see a Senator in person, so what the heck, we’ll take a chance.
We hiked over to the Hart Senate Building and found Senator Nelson’s new office. Last year it was still under construction. The center of the building is occupied by 6 or 7 story tall Alexander Calder, steel sculpture; an abstract representation of mountains. It’s so big you wonder if the building had to be constructed around it. This giant sculptor sits center stage and the steel, glass and grey granite, compose the office space which circles around this center.
As we get off the elevator we notice Senator Nelson crossing the hall and going into his secret senator door. We decide not to chase after him and entered conventionally.
The health aide is happy to see us and does not mind that we are an hour or so early. We enjoy presenting our case to him and ask if Sen. Might join us for a photo. The aide checks and we are told he is busy talking with the mayor of Jacksonville. The aide suggests that next year we call them ahead of time for a face-to-face opportunity with the Senator. We will.
It’s getting hotter now outside, so we are glad that we can use the underground passage to walk to the Russell Senate Office Building for our appointment with Senator Martinez.
This building is old school. There are high imposing doors and very high ceilings, wide staircases (pre elevator) marble and granite hallways and each office still has its own large marble fire place. (Pre central heat) It must have been cozy waiting there for one’s Senator on a cold winter morning long ago.
Our actual appointment is uneventful, yada- yada. We know the bills are going nowhere right now, but we show our faces and make sure we remind them that we are also representing lots of people who are very interested in Ovarian Cancer issues.
Carol must see her Representative, so we cross the hill one last time and go the Cannon House Office Bldg., to see Ric (no k) Keller. His health aid is a charming young woman who appears genially interested in knowing more about OC. We have a friendly talk; Carol promises to send her more information regarding symptoms, facts, etc.
She thanks us for arriving early since they are having a very busy day, and in response to our request for a good place to have lunch she suggests, “Bullfeathers”, a favorite watering hole serving the Members of the House
It’s noon a good time to walk the short distance to Bullfeathers for lunch.
During lunch we discuss what we might do for a few hours, since we do not have to be back to the hotel until 4:30. The metro station is up the street so we have access to the entire District. We decide (in the comfort of chairs and coolness of AC) to embark upon a sightseeing walk-about in Georgetown.
We were totally out of our minds as we laughed in the face of the hot burning sun san, deluded ourselves into imagining that the hot hard pavement was as soft as fluffy marshmallows. We embarked upon the most amazing circular, meandering, (haven’t we been here before??) investigative exploration, of a small but mighty section of Georgetown.
We were in the midst of the Georgetown University Campus and looked (longingly) into the windows of the medical center. We admired a street of charming old row-houses (at least twice) and saw - even studied their front yard plantings.
After a long hot hour or so, we felt like we really lived there…but hey? Who was hiding our house?
We decided that we had seen enough, studied the same streets as many times as necessary and the thought of a shower and a cool dark room was making us giddy - or was it the sun?
Back to the Hotel and a rest before we had present our results to the Capitol Hill Shout Back!
The shout back was interesting as many folks shared their wonderful experiences. Some actually saw their Rep or Senator and their shared information will be useful for us as we are determined to plan better next year.
Tonight we will attend a Partner Member function at 7:30.
What a day! What a conference!
Connie, the Blogger, Rina the Navigator and Carol , Ouch! My feet hurt!
Saturday, July 12, 2008
Wednesday, July 9, 2008
Day three
WHAT A DAY!!!
We lept from bed, grabbed a cup of coffee and somehow were on time for a 7:30 talk by Annie Appleseed on, guess what? Health, diet, natural products and herbal remedies. Annie is from Del Rey Beach, almost a neighbor.
Then the sessions began in earnest. Many good speakers. A 3 person panel which gave us new insite into the effect of the internet on many aspects of modern health care in the US. Did you know that Google is our nations leading source for medical information.
We also were told that there is a movement toward keeping medical records as accessible on line electronic files. This system will provide physcians or medical facilities instant access all over the country, the patient may acess their file - correct mistakes and see what the doctor has written on them. This is on the drawing board for now and the obvious privacy rights and accessibility discussions are being considered.
The Health Care System is definately ripe for a change, in danger of overloading and the scope of care must be expanded. We are glad to note that good people are looking at the problems and are preparing for a positive change. Of course this will be an issue in the up coming Presidental eletion. We must stay informed, investigate the candidates positions on health care.
Awards ceremony followed and we were happy to see 2 special people recognized. One research Physician, responsible for CA125 and a Survivor Nurse, who has made countless contributions to awareness and legislative actions which have resulted in OVCA funding. Both recipientants made touching acceptance speeches. We were proud of them and happy for them.
We broke up into Action Groups, defined geographically, to define 2 objectives for the coming year and we were also to provide the means of accomplishing them. It was exceptionally stimulating and we could have used a half a day to explore more ideas and possibilities. Sharing with other Partner members needed a lot more time.
We re-convened and all of the groups contributed their ideas to a build a framework to collectively construct an OCNA action plan and a focus for the coming year. We were pleased with the results and the opportunity to work together.
If all this was not enough we still had one more big meeting to accomplish - our training session for Capitol Hill tomorrow. We have appointments with Nelson and Martinez, we were not scheduled to see Weldon. We were told that his office was unable to see us. (?)
Now it's 8 PM and we are hungry women looking forward to dinner.
Capitol Hill bus leaves at 7 in the morning so it will be another ambitious day tomorrow.
Wish us luck!
Connie and Rina
We lept from bed, grabbed a cup of coffee and somehow were on time for a 7:30 talk by Annie Appleseed on, guess what? Health, diet, natural products and herbal remedies. Annie is from Del Rey Beach, almost a neighbor.
Then the sessions began in earnest. Many good speakers. A 3 person panel which gave us new insite into the effect of the internet on many aspects of modern health care in the US. Did you know that Google is our nations leading source for medical information.
We also were told that there is a movement toward keeping medical records as accessible on line electronic files. This system will provide physcians or medical facilities instant access all over the country, the patient may acess their file - correct mistakes and see what the doctor has written on them. This is on the drawing board for now and the obvious privacy rights and accessibility discussions are being considered.
The Health Care System is definately ripe for a change, in danger of overloading and the scope of care must be expanded. We are glad to note that good people are looking at the problems and are preparing for a positive change. Of course this will be an issue in the up coming Presidental eletion. We must stay informed, investigate the candidates positions on health care.
Awards ceremony followed and we were happy to see 2 special people recognized. One research Physician, responsible for CA125 and a Survivor Nurse, who has made countless contributions to awareness and legislative actions which have resulted in OVCA funding. Both recipientants made touching acceptance speeches. We were proud of them and happy for them.
We broke up into Action Groups, defined geographically, to define 2 objectives for the coming year and we were also to provide the means of accomplishing them. It was exceptionally stimulating and we could have used a half a day to explore more ideas and possibilities. Sharing with other Partner members needed a lot more time.
We re-convened and all of the groups contributed their ideas to a build a framework to collectively construct an OCNA action plan and a focus for the coming year. We were pleased with the results and the opportunity to work together.
If all this was not enough we still had one more big meeting to accomplish - our training session for Capitol Hill tomorrow. We have appointments with Nelson and Martinez, we were not scheduled to see Weldon. We were told that his office was unable to see us. (?)
Now it's 8 PM and we are hungry women looking forward to dinner.
Capitol Hill bus leaves at 7 in the morning so it will be another ambitious day tomorrow.
Wish us luck!
Connie and Rina
Tuesday, July 8, 2008
Day 2
Well, We are out of the Hotel's Business Center and on OCAF'S computer in Carol Dirkson's room. I don't have to type within a time limit and the panic that I shared with Lucy Ricardo
in the candy factory is a thing of the past. Thanks OCAF!
I am navigating a computer w/no mouse...how much of a learning curve must a chemo brain assimilate in a week? AND after a busy day of non-stop activity. A lesser woman would be less, no doubt.
Rina and I were ensconced in informative meetings and non-stop speakers, some better than others but since the BETTER were so much better that we did not mind.
We cannot capture the subject matter in a blog, but the good news is that OCAF will make the material available on their website, soon.
The most important speaker today was in our opinion Dr. Armstrong, who gave an in-depth update of, Treatment for Recurrent Ovarian Cancer. Her message was hopeful and profound. The steady "tweaking" of the use of traditional therapy, the introduction of new drugs and new discoveries regarding treatment protocol illustrates the importance and the gift of life that clinical trials continue to provide. She answered many questions and made us all feel confident that the work she and her colleagues are involved in will continue to provide hope and extend life.
We also heard from no less than 3 speakers that we must become our own "Best Friends" and begin to earnestly advocate for our share of tax dollars for OC research and education. Our senators and representatives must be kept on task by us to provide adequate OC research and educational funding. Obviously, if we heard this 3 times today, we got the message that this is an important focus of this year's conference.
This evening we attended and participated in the Remembrance Ceremony. It was planned that we would hold lighted candles which symbolized the women have who have lighted our path, but the wind would not allow this to be. So our candles were held without a flame as we recalled the women who inspired us, those we love and our friends and loved ones who have lost their fight. Still, a moving moment which no wind could interrupt.
Connie was among 5 others who read at the ceremony and their prose and poems were shared. Most moving was the writing shared by a young woman who lost her Mother in February. She summoned the strength to read the words she wrote shortly after she lost her mother. She told me that until this day she had never said the words she wrote aloud.
I am tired - tired of erasing and making mistakes, mostly.
Talk again tomorrow!
Connie and Rina
in the candy factory is a thing of the past. Thanks OCAF!
I am navigating a computer w/no mouse...how much of a learning curve must a chemo brain assimilate in a week? AND after a busy day of non-stop activity. A lesser woman would be less, no doubt.
Rina and I were ensconced in informative meetings and non-stop speakers, some better than others but since the BETTER were so much better that we did not mind.
We cannot capture the subject matter in a blog, but the good news is that OCAF will make the material available on their website, soon.
The most important speaker today was in our opinion Dr. Armstrong, who gave an in-depth update of, Treatment for Recurrent Ovarian Cancer. Her message was hopeful and profound. The steady "tweaking" of the use of traditional therapy, the introduction of new drugs and new discoveries regarding treatment protocol illustrates the importance and the gift of life that clinical trials continue to provide. She answered many questions and made us all feel confident that the work she and her colleagues are involved in will continue to provide hope and extend life.
We also heard from no less than 3 speakers that we must become our own "Best Friends" and begin to earnestly advocate for our share of tax dollars for OC research and education. Our senators and representatives must be kept on task by us to provide adequate OC research and educational funding. Obviously, if we heard this 3 times today, we got the message that this is an important focus of this year's conference.
This evening we attended and participated in the Remembrance Ceremony. It was planned that we would hold lighted candles which symbolized the women have who have lighted our path, but the wind would not allow this to be. So our candles were held without a flame as we recalled the women who inspired us, those we love and our friends and loved ones who have lost their fight. Still, a moving moment which no wind could interrupt.
Connie was among 5 others who read at the ceremony and their prose and poems were shared. Most moving was the writing shared by a young woman who lost her Mother in February. She summoned the strength to read the words she wrote shortly after she lost her mother. She told me that until this day she had never said the words she wrote aloud.
I am tired - tired of erasing and making mistakes, mostly.
Talk again tomorrow!
Connie and Rina
Monday, July 7, 2008
First Day in DC
Hi, Second time to write this. Regis' computer is in sick bay so we are in the hotel business center. Forgive typos please!
We checked in, registered and have visited the exhibit hall. Not all up and running yet, but enough to keep us busy.
We were thrilled to see a great representation of OC awareness information that was being published directly by a grant from Johanna's Law funding. Good news and great to see that happening!
They will also be preparing Public Service Announcements soon. We were thrilled to hear that there is and will be more information made available to the public on a national basis.
We suggested that they add to the symptom literature, "Prior to having any surgery see a gynecologic oncologist" They were happy to write down our advice and thanked us.
We purchased a video of a documentary featuring 3 OC Survivors and how they responded to their diagnosis and their life after and during treatment. It is 30 min. long and will be a good program for our Support Group.
Tonight we will review the program choices for tomorrow and make our choices.
See you then, Connie and Rina.
We checked in, registered and have visited the exhibit hall. Not all up and running yet, but enough to keep us busy.
We were thrilled to see a great representation of OC awareness information that was being published directly by a grant from Johanna's Law funding. Good news and great to see that happening!
They will also be preparing Public Service Announcements soon. We were thrilled to hear that there is and will be more information made available to the public on a national basis.
We suggested that they add to the symptom literature, "Prior to having any surgery see a gynecologic oncologist" They were happy to write down our advice and thanked us.
We purchased a video of a documentary featuring 3 OC Survivors and how they responded to their diagnosis and their life after and during treatment. It is 30 min. long and will be a good program for our Support Group.
Tonight we will review the program choices for tomorrow and make our choices.
See you then, Connie and Rina.
Sunday, July 6, 2008
Getting ready for the big day.
Making the last minute preparations for my trip to DC. I have been waiting for this moment for a very long time and the time is finally here. I am so excited and can not wait to see what OCNA has planned for us this year. Last year they did a terrific job, the speakers were fantastic, how often do you get to meet people like Dr. Bast? (best known for developing the OC125 monocional antibody that led to the production of the "CA125"). The trip to Capitol Hill was quite an experience and this year I believe we get to have breakfast there before we meet the VIPs. I will miss you Sophie and Jim, I wish you made the trip with us . I will try to keep you informed the best I can.
Talk to you soon.
Rina
OC 3C survivor since 1998!
Talk to you soon.
Rina
OC 3C survivor since 1998!
Wednesday, July 2, 2008
BIG NEWS IN DC!
The 11th Annual Ovarian Cancer National Alliance Conference will be held from July 8th through July 11th in Washington DC. This year, Connie Van Asdale and Rina Harrington will be representing OCAF/Space Coast and they will be trying something new to allow the folks at home an opportunity to see/hear what is going on.
Each evening, Rina and Connie will be blogging right here about their day at the conference, sharing the activities and ideas they learned and detailing their overall participation in different areas of the conference. There will be a lot of information to share. In addition to reading their blog, you can comment on the entries they write simply by clicking the "Comments" link at the bottom of the post (directions on how to do this are at the end of this post). Feel free to share your opinions, thoughts, and questions with Rina and Connie (and each other!). For those who are unable to attend the conference, this is a great way to participate.
I realize that many might be new to the blog world so I welcome your questions! Please don't hesitate to contact me at laura@tealribboncfl.com
Thanks and Enjoy!
-Laura
Steps to leave a Comment:
1) Click the "Comments" link below the post
You will be taken to a new page
2) Please type your comment in the dialog box shown
3)"Choose an Identity"- select the "Name/Url choice" and enter your name
4) Click "Publish Your Comment"
5) You are done! Your comment should appear on the site momentarily.
Each evening, Rina and Connie will be blogging right here about their day at the conference, sharing the activities and ideas they learned and detailing their overall participation in different areas of the conference. There will be a lot of information to share. In addition to reading their blog, you can comment on the entries they write simply by clicking the "Comments" link at the bottom of the post (directions on how to do this are at the end of this post). Feel free to share your opinions, thoughts, and questions with Rina and Connie (and each other!). For those who are unable to attend the conference, this is a great way to participate.
I realize that many might be new to the blog world so I welcome your questions! Please don't hesitate to contact me at laura@tealribboncfl.com
Thanks and Enjoy!
-Laura
Steps to leave a Comment:
1) Click the "Comments" link below the post
You will be taken to a new page
2) Please type your comment in the dialog box shown
3)"Choose an Identity"- select the "Name/Url choice" and enter your name
4) Click "Publish Your Comment"
5) You are done! Your comment should appear on the site momentarily.
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