More waiting...

Getting out of bed was difficult today... I just don't want to face what lies before me...

It is the week for appointments... Being a female of a certain age, it seems that I am in and out of the Doctors for one reason or another... A lot... Earlier this week, it was to see the breast surgeon, who is asking for an MRI before he goes in for a biopsy.

(He says that he does not want to drive blind and would rather have a map as to where he should biopsy, rather than run the high risk of getting a false negative.)

And since he found a secondary area that concerns him... Well... Let's just say that I really like this Doctor and appreciate that he does not prefer the quick cut and see method... I'd rather really know what we are facing...

We are now waiting, again, to see if I am going to get the tests approved through the program that I am on... Otherwise, it is about $3,000 out of my pocket for the test and biopsies...

(What was that saying about getting water from a stone? Yup, if I have to, I will make that saying untrue... Somehow...)

Day Two of Elbow Rubbing...

It has been a long time coming... What I have been up to... But there is just no spare time when one is trying to save the world... Or at least young women with breast cancer... Or at least myself...

But at least I am going places... And fast... With possible funding for my Foundation through grants... (Who knew that was possible... Okay it makes sense, but there has not been enough time to really just sit down and THINK here. It has all been about getting information and taking action...) And the offer of being recommended for intensive training for lobbying and pushing for legislative changes... (And that is some thing that I want to do so badly. To have the chance to do positive and proactive things on a larger scale and to make waves, not just ripples... Now THAT is exciting... But let's not get me all fired up about that... I could just go on and on... But I think that is what "they" refer to as PASSION...) Things are moving forward. (And I am very excited about all of the things that are going on... All of the incredible people that I have been meeting...)

Day two of the trip to the State Capitol went even better than Day one... (How IS that possible?) I took so many notes... (And with the help of the best interpreter I have ever seen, a little go-juice- okay... so it was THREE cups of coffee, and a great table-mate also taking copious notes, I think I actually got every word. Did I mention that there were handouts and power point presentations? Information rules!)

We participated in a Discussion Board that was filmed... As well as many of the top specialists in the breast cancer areas speaking, answering questions, and passing along the latest information.

The key note speaker brought tears to my eyes more than once. What an inspiring woman!

And just like that, it was over as quickly as it had started...

But I go back soon to continue to make waves... Make changes... Make awareness... Make a difference... Make something... (Perhaps the something is more than a few Senators and Assemblymen go off running in the other direction because they are tired of my petitioning face...)

So there you have it... So much more to get done before I get to bask in the sun on the black sand beaches watching the lava flow in the near distance while I sip on a mai tai...

Ohhh yeah... Don't forget the umbrella baby...

Rubbing Elbows...

Day one of rubbing elbows with officials, aides, and other activists went wonderfully!

I met some really incredible people... An inspirational pair of young women from the Young Survivors Coalition, courageous leaders willing to share their wisdom, officials that really WANT to make a difference, officials that don't and a 13 year old girl from San Diego who, along with her young sisters started a foundation called "You Go Girl". (You should check it out... She is going to be among tomorrows leaders...)

I am heading back for a one on one with an Assemblyman to follow up on the legislature that we are trying to get passed. (And I cannot even BEGIN to tell you how very, very excited I am over that prospect...)

So... All in all, Day One went so much better than I had hoped... And to think that I was having Eleventh Hour Reservations... I am so glad that I came.

I have a day of training and symposium ahead of me... (I love learning, s this is actually going to be FUN! Just watch out... I ask LOTS of questions...)

So much to share with everyone about the great things I have learned, the information that I have been given, the discoveries that I have made... But later... Promise!

Well... I am off to be the poster child (eh... young woman... um... un-insured/ under-insured woman) that we are actually representing... (I have told my story so many times that I am beyond tired of telling it. But, I am not alone in this, and changes MUST be made... So tell and re-tell I do... (Thank goodness that I don't embarrass easily...)

Wish me luck! (I did kick butt... I did take names... Actually, I really did...)

Turning the Capitol PINK...

Tomorrow is going to come very early for me. I leave in the dark to head up to the State Capitol. I am joining forces with Susan G. Komen for the Cure and their Community Challenge. We are spending two days lobbying and in lectures, training seminars, and press conferences.

I am very excited! I am on my way to making changes in yet another forum. (And it is my hope that I will be able to take what I learn, and the contacts that I make and be able to forward awareness for younger women affected by Breast Cancer...)

If you have the next two days off, and want to join us, it would be great to see you there!

I am including some of the information below.

Wish me luck! I am off!!!!!!! (Yea!!!!!!)




Komen Community Challenge:

"This is the war on breast cancer. We’re bringing it to Capitol Hill, and then we’re heading clear across the country. Susan G. Komen for the Cure is taking its special brand of pink ribbon activism on the road in a powerful grassroots effort to “Close the Gap” in access to quality health care, research and information. Over the next 25 years, five million Americans could be diagnosed with breast cancer – and because there are gaps in our system, this diagnosis will be deadlier for some than for others. That's wrong."

"So as we mark our 25th year, the Komen Community Challenge is hitting 25 cities, reaching tens of thousands of people at town hall meetings, roundtables, lobby days, and summits. We’re rallying to make breast cancer a national priority, to help “Close the Gap” in funding that keeps thousands of women from receiving life-saving breast cancer care. In order to do this, we extend the Challenge to draw 25 million new people into the fold. We must - because in the next 25 years, 25 million people worldwide could be diagnosed with breast cancer."

"Come One. Come All. We are the face and voice of the global movement. As local activists and global citizens we will mobilize millions to put an end to this dreaded disease – forever."

Sacramento, California

"The California Komen Community Challenge is coming to Sacramento, California on Thursday, January 17, 2008 – Help us turn the State Capitol PINK!"

"This January 17 and 18 is the first Statewide California Komen Community Challenge. We hope that you will join us and Californians from every corner of the Golden State at the exciting events we are planning!"

"In the lead-up to the February 5, 2008 presidential primary election, the whole country will be paying close attention to what California has to say. Join us as we restore the sense of urgency to the breast cancer movement on January 17 and 18 and help put breast cancer in the national spotlight so that we can end breast cancer forever!" Here are the details:

"Close the Gap!" Rally and Lobby Day

What: The California Komen Community Challenge - "Close the Gap!" Rally and Lobby Day

When: Thursday, January 17

* 10:30 a.m. - Press Conference at the State Capitol
* Noon - 1:00pm - Legislative Training Lunch at Sheraton Hotel
* 1:30pm - 4:00pm—Legislative Office calls
* 5:30pm - Rally & Lighting the Capitol Pink / West Steps of State Capitol (join us and get a free Komen T-shirt!)
* 6:00pm - Concert at Crest Theater in Downtown Sacramento

Where: Sacramento, California

California State Capitol ~ 1303 10th St, Sacramento, CA 95814
Sheraton Hotel ~ 1230 J Street, Sacramento, CA 95814
Crest Theater ~ 1013 K Street, Sacramento, CA 95814

Who: You and all your colleagues, friends, family along with breast cancer survivors, co-survivors and advocates!

How: It’s easy! RSVP today!

Community Educational Symposium

What: The California Komen Community Challenge - Community Educational Symposium

When: Friday, January 18

* 8:00am - Breakfast
* 9:00am - Symposium

Where: Sacramento, California / Sheraton Hotel ~ 1230 J Street, Sacramento, CA 95814

Who: Breast cancer survivors, co-survivors, advocates, stakeholders and community leaders.

How: It’s easy! Email info@komenchallengeCA.com to RSVP today!

"Susan G. Komen for the Cure is re-energizing and amplifying a call to action for the breast cancer movement. Pink ribbon activism will take hold of California’s State Capitol in January 2008. We need ALL breast cancer advocates to help us make lots of noise in Sacramento as we challenge decision makers to "close the gap" in policy and funding that keeps too many women from receiving lifesaving breast cancer care.Help us turn the State Capitol PINK!"

"For more information about the California Komen Community Challenge, email info@komenchallengeCA.com or call 888-247-5319."

Okay... Here we go again...

Here we go again with the run around. It's not as if this is not serious or anything... I mean, breast cancer doesn't kill or anything, right?

Yeah...

Notice the dripping sarcasm... Feel the hostility and anger and frustration pouring out of me at this very moment... Makes you want to scream too doesn't it? Want to do something about it? Me too.

After having to go to another state to get a Mammogram and Ultrasound for the lump in my right breast, I am still getting the California run around. And it has been five weeks of waiting. If I had not called and insisted on speaking to someone, let alone the person who was supposed to be calling me back (Annie Fischer, who still has not returned my call or sent out the information that she promised me five weeks ago.) who knows how much longer I would have been waiting.

Let me back up here a little for you. (If you are new to what is going on, you might be experiencing a case of hovering question marks above your head right now...)

Last March (as in March of 2007) I went in and had a had dozen lumps in both breasts discovered in a breast exam. There was one (really large) lump in my right breast that concerned the Doctor greatly. I was placed on a high vitamin E, B and iron therapy and was told to sit tight and see if there were any changes for six months. So I did. I went back and the Doctor did not like what she found. She ordered a Mammogram and and Ultrasound to make sure that this lump was not cancer. (I have a huge family history of breast cancer and have been monitored since I was 17 when the first fibrous lump was found near my lymph nodes.)

I made calls. Many, many calls. And no one would see me. I was told I was too young. I was told that I was not eligible for any program that I contacted. I was sitting there with a lump that was 2.5cm x 5cm and there was no one that would do a Mammogram or an Ultrasound, no matter if I had financial assistance or not.

Fast forward to November of last year (November 2007). I was now in Northern California starting the whole process all over again. (Having exhausted Southern California options what else could I do?) I was lucky for a supportive significant other that I was staying with. (You have no idea how many nights I vented to my poor sweetheart over another waisted day of dead ends...) I was also lucky that my sweetheart's Mother worked in a hospital in Oregon. I got a call from her letting me know that there was a cancellation in two days time, and could I manage to fly out to Portland to get the tests run?

What do you think?

I begged family for funds, booked a flight, reserved a car and called the California doctors. And that was when I hit another road block. I was calling the Doctors to get my referrals transfered (as in faxed, e-mailed, or mailed) up to the hospital in Oregon. And they would not. I went down to the office in person and requested copies for myself, in writing, and lucked out. Lucked out that is until I read what the paperwork said. Mammogram only. (At this moment, let me point out that I am only 34. I turned 34 in November of 2007. This made me too young for any of the existing programs, Medicare, as well as too young for sagging breasts with little density. What blesses me with large, perky breasts also curses me when it comes to tests like Mammograms... The test is all but useless. What I really needed was the Ultrasound.) While being seen by the referring doctor I was assured that I would be getting BOTH tests. But the paperwork said otherwise.

I contacted the Doctor in Southern California again and asked that the pertaining medical records be sent to the hospital in Oregon, again. I had requested copies in person when I was there at the end of the summer, but after waiting half a day (no exaggeration) I had to leave without getting any closer to being allowed to look at my chart, let alone receive copies of what I needed. This time, I was assured that the request for Mammogram and Ultrasound would be re-issued (Since they said that they did not have a copy of the first request kept in my file...) and sent to the hospital in Oregon.

I hopped on the plane and made it to the hospital. I checked in, wore my identification bracelet with nervous relief that this would soon be over, one way or another, and waited.

I waited because the Southern California doctor had not sent up the referral as promised. I called and was told that they would. The hospital called. In fact, FOUR different people from the hospital called. We were told that the fax had been sent. Then we were told that there were problems with the fax machine, and that we would get the fax as soon as possible. Then after several hours of constant calling, I was told that they had finally located my file. (Makes me wonder how they could have sent the information as they had said if they could not locate my file...) But in the end, the hospital received a copy of the first referral. (The one that I was told I could not have a copy of originally.)

I had the tests performed and the results right away. The Mammogram showed nothing, which was expected. Even with the new digital technology, my breasts are too young and dense. The Ultrasound showed the lump plain as day. (Which we knew that it would since anyone could feel it due it's large size.) What the Ultrasound showed was that the lump was NOT a cyst. It was indeed fibrous. The Radiologist thought that the likelihood of cancer was slim, but only a biopsy can confirm cancer.

On the drive to the airport I received a call from Annie Fisher, the case mamnger for the program I was (supposed to be) in. She assured me that I had had an appointment to have the tests performed the following Friday, (though I had not been contacted to be aware of this information, the last I had heard was that it could be months...) and that she would forward the test results to the breast surgeon in Northern California. (She had already received the results from the Oregon hospital.) She assured me that I would be placed on a list for a biopsy so that they could rule out cancer and close my file. That I would be getting a letter in the mail that would have the breast surgeon's number on it for me to call and schedule an appointment for the biopsy to be performed in January of 2008. Sounded good enough for me, the holidays were upon us and who does a biopsy over Chrismas?

I returned to California.

I waited.
And waited.
And waited.
And five weeks went by.

Still nothing. No letter. No call. No information. So I called Annie Fisher back. She was not available. I left a detailed message and my number with the receptionist.

Around 11:30 yesterday I got a call from Susie. She said that I had in-eligible all over my file because I had Medicare. (They do not cover any of this until I am over 40, I am 34. That makes me eligible.) Then she said that I had access to the "Every Woman Counts" program. (I an too young for their program being under the age of 35.) She said that the hold up was that I had self pay on my records. (I'll pay, or have the program cover it, either way, I need a biopsy.) She said that they would not see a self-pay, that they had to be assured of receiving payment. (Of course, this is about money... I said I'll pay...) No good.

We went round and around. I stood my ground. She wanted to know why I went to Oregon to have the tests done. I explained that after dealing with this since March, I really did not want to die from breast cancer. You can see how it went from there. (Perhaps she does not think that breast cancer is deadly? Or that a lump the size of an apricot pit is nothing to worry about? Perhaps she should stick to one story, rather than telling me one thing and then changing it to another. I mean, if I was marked as ineligible, then how was it that I was supposedly scheduled for a Mammogram?)

Anyway...

I am still waiting for something. Like a place that will perform the biopsy. And I will tackle that. If for no other reason than I am tired of my Mother being unable to sleep at night, forget that I want a clean bill of health so that I can start a family...

So here is what I have to say for today:

--Make sure you are your own health care advocate. Keep records of everything. Who you spoke to, when and what was said. Keep all numbers, addresses, and e-mails. Do not throw away letters or the envelopes. (You may need the postmark on the front of the envelope.) Keep confirmation of e-mails and faxes sent and received.

--Do not let anyone tell you that you are too young or too old or the wrong sex for something. It happens. 250,000 women UNDER the age of 40 have breast cancer right now. Really it happens. 11,000 women are expected to be diagnosed with breast cancer this year. It happens.

--The longer you wait, the worse it gets. The worse for the cancer, (If that is what it is, but you won't know until you get screened, tested and biopsied.) the worse for your mental health, (Stress is a bad thing and it builds up quickly. Trust me.) the worse for your loved ones. (If you think that this effects only you, think again. They will worry. They will fret. They will feel angry and helpless.)

--Do something positive when you can. (I don't mean give a million dollars to charities. That is, unless you happen to have a spare million dollars laying around somewhere, then by all means donate it...) But you can write a congressman, senator, assemblyman, city council member, presidential candidate, or even "the GOVENATOR". You can vote. You can march, (Sacramento on January 17 and 18) walk, or rally. You can post a link in your blogs to this site, you can blog about it yourself. But no matter what you choose to do, know that it will make a difference in the end.

--Never give in. Never give up. Never stop believing in yourself. Never give up hope.

Okay, Enough for now. Thanks for the venting. I'll keep you posted. And I'll post up the facts (as in "Just the facts Mamm, just the facts") later.