UCAAN Cross Country Trip - Day 5 & 6

Friday May 13th, 2011
Baton Rouge, Louisiana to Tampa Florida
Total miles: 715 miles, 12 hours total

These days seem to be getting shorter and shorter and the distances further and further. I feel some days that we've been driving for weeks and yet it's only been 5 days. Lol. This was the longest of all of our days of driving.

But on the lighter side of things, Sarah and I thoroughly enjoyed the sights and the journey - we crossed over through 4 states in about 2 hours - from Baton Rouge, Louisiana to Alabama to Mississippi to Florida. By the time we arrived in Florida we were beyond famished and it was 9:30pm- we still had much to do - eat and interview June.

Let me give you some information about June, the first person to donate to our first UCAAN event and who is also a HUGE supporter of UCAAN! In September 2009, we had our first ever date auction with celebrities and we were auctioning off dates with single men & women as well as time with celebrities. We were lucky enough to get some big names this year, which included: Kevin Sorbo, Dean Cain, Morgan Brittany, Maurice La Marche & Victoria Jackson. Somehow we got the word out there on ABC7's on the Red Carpet website and they did a small article online about it. Well, June who lives in Tampa saw a piece of that article on her Dean Cain Fan Club site - Zoomway! She was so excited that he had the possible chance of a date with Dean, that she couldn't refuse!

June ended up being our winner - at $1500! Her date would include lunch at Bocaccio's (An Italian restaurant on Westlake Lake in Westlake Village, CA). June, who was beyond excited when she heard the news couldn't believe she was the winner - but was beyond excited!!! Her time with Dean was 7 months later and from what she reported to us today she had the time of her life!! She flew in from Florida, stayed in the Ventura County Area and enjoyed lunch with Dean and a boat ride - as he drove her around in the boat supplied by Bocaccio's restaurant. June says it was a time to remember. And she has continued to support UCAAN by suggesting our cause to receive donations from her Dean Cain Zoomway club, that chooses a charity once a year to donate to for Dean's Birthday. Goooo June!!

Sarah and I had a BLAST with JUNE and enjoyed our time with her in Tampa. Thanks so much June for letting us stay the night!

Saturday May 14th, 2011 - "So We Meet Again!"
Tampa, Florida to Boca Raton, Fl Total Miles: 240

This was a beyond special day for me..... because I was seeing my aunt and uncle (on my father's side) for the first time in 25 years!! Avi is my father's brother, who live in Boca with his wife Rita. I had chills, as Sarah and I drove out to Boca, in addition I was dealing with a slight cold that I got from Arizona. :0( We were enjoying the drive..... until we hit the toll roads and the miles of bugs that flew into our window. When Sarah and I arrived at a gas station, our front window was covered in bugs who had committed suicide. But we weren't the only ones! In the gas station, there were 18 wheelers, SUVs, and compact cars all with the same issue - trying to get the bugs off their grills and their windows. WOW!

When we finally arrived in Boca, I was about ready to cry. I had lost my father when I was 3 to melanoma, and was about to see his brother, who I hadn't seen in too long. I remembered the photos and recalled how much they looked alike. As Sarah and I walked up to the door, we found Aunt Rita (a cute short lady) standing in the hall with Uncle Avi behind her. I embraced them, knowing I should have seen them sooner than this, but knowing that they loved me none-the-less.

The View from Uncle Avi's and Aunt Rita's was phenomenal! The Florida Beach was clear and crystal blue and the sand was white. Beautiful!! (The pictures will come later!) We spent time with them until we all went out to dinner and enjoyed some Cuban food with them and Rita's Nephew Drew & his wife Vicky. The food was amazing - I had never tasted anything so good. We all enjoyed the night and spent time with one another. It didn't hit me till later before I was going to bed - how much my father and Avi looked alike and how much he reminded me of him - my father was a great writer and a world traveler, and intelligent, funny man who didn't live long enough to see what I have made of myself today... I miss him so much. But I know he would be proud of where I am now. Spending time with his brother & Rita, enjoying the world and taking on cancer like I did. Thanks dad for your strength and passion for life that you have given to me!!

I hope to visit Avi & Rita again - maybe once or twice a year, because I feel like I have to make up for lost time & they my father's family!







Tomorrow's Teaser: We drive out to Jacksonville, Florida and meet a survivor named Jim, stay in Jacksonville and then head out the next morning for another long drive - this time out to North Carolina! Stay Tuned for More adventures with Rachel & Sarah!

UCAAN Cross Country Trip - Day 3 & 4

Got UCAAN Fever? Here's our Cross Country Documentary Updates!!
Updates for Wed May 11th & Thurs May 12th 2011

Day 3: El Paso Texas to Austin
Day 4: Austin to Houston, Tx to Baton Rouge, Louisiana!

Day 3: El Paso, Texas to Austin, Tx Total Miles: 529

Day 3 was indeed a long one, with lots of adventures, and long driving..... Sarah and I headed out at 10am in hopes of getting to Austin early enough to meet with fellow survivor Eric in Austin. The drive was long and tiring, mainly because we had huge stretches of nothing but desert and it just became monotonous. But Sarah and I pushed through, taking turns driving and taking pictures on our journey. We did see some wild sand storms, and swirls of sand in the distance that looked like a mini tornado. We eventually made it to Austin, and how confused were we? We had been driving for close to what seemed like 8 hours and had arrived later than we had hoped. We checked into our hotel and moved our stuff into our room. We soon found out that our room smelled and the floor was wet. Lol. So we had to move to another room. By this time it was 9:30pm and we still had yet to meet up with Eric and interview him. (I should probably include that the freeways in Austin were beyond confusing to us, and the streets lacked signs..... I think Sarah and I had had enough..... and by the next morning were ready to leave. Lol.) PS> We had a blast driving through Fredricksburg, New Mexico)

Once Again we pushed through and arranged to pick up Eric - about 7 miles from our hotel and all go somewhere where we could talk. Denny's!! Lol. Now let me give you a little info about Eric. Eric is a fellow young cancer survivor who had Melanoma in his eye when he was 37 and living in Chicago. Eric and I first started talking about 3 years ago on a cancer site called C is for Cupid - a dating site that was for survivors of cancer or others affected by the disease. We talked on the phone for years - hours of conversations and relating to the same situations with cancer and stories about those we had met. At the time I was starting to work on UCAAN and he was working for a non-profit in Chicago. Eventually he moved out to Austin. So this was the first time I was meeting Eric. The anticipation was great, and crush on him. :0) So we met!! He was just as I remembered from the pictures, and his personality was the same old Eric I had been talking to over the years! He gave Sarah and I both a big hug - awwww... nice.

He told us he would only talk for 10 minutes on camera. That ten minutes turned into a full 2 1/2 hours! There we were in Denny's in Austin, miles from our hotel chatting about cancer, experiences, and the aftermath. Although he didn't go through chemo or radiation, he had experienced some things that I had - like the "fog brain" (aka.chemo brain, and the troubles with dating. Eric however was lucky enough to find a great woman in Texas, and I'm so happy for him. I can't wait for you to see our convo in the movie!

Day 4: Austin to Houston, Tx to Baton Rouge, Louisiana!
Total Miles: 575

Onto my favorite day..... Today! Sarah and I had to get up super early after only 3.5 hours of sleep, we were up and out of the hotel by 5:45am and arrived at MD Anderson (Houston, Tx) )a little later than expected 9:20am. I cannot even tell you how impressed I was with MD Anderson Cancer Center - which has been rated the #1 cancer hospital in the country by US News (Health). The facility has 5 buildings total, including a new in patient center that is 9 levels for inpatients! I cannot even begin to tell you how much this hospital has to offer, without giving away too much. Lol.

We met with Julie P and got a great tour of the hospital including the skyline walkway they have that goes from the out patient center to the hospital - a full 3/4 of a mile one way, that offers golf carts driven by staff that take patients down and back! There were a few things that we noticed that were somewhat similar to the CTCA, but there were a lot of huge differences. The way that MD Anderson outpatient building is set up is very organized - like their breast cancer floor, encompasses every single doctor and specialist that you would need to see for your BC treatments all on one floor (instead of having to walk all over the hospital for different appointments).

We met 2 cancer survivors who were helped at MD Anderson and were now volunteers at MD! Two great women with positive attitudes and great stories of hope. 00132

After MD Anderson, we headed out towards Baton Rouge, Louisiana - a almost 5 hour drive. The drive itself was exceptional and the sights were beyond phenomenal! Gorgeous Lush land, lots of forests and swampy areas. This included an amazing bridge (Breaux Bridge) that stretched across the swamp/water for 27.6 miles, and crossing over the Mississippi! Pictures Included!! We finally arrived in Baton Rouge, and enjoyed a late lunch at the Waffle House....... So this is short and I figure I have written enough for tonight. Plus I'm sleepy and Sarah is sleeping already!
The best part of the drive: Breaux Bridge - 2 bridges - each going a different way!!

Note: I forgot to mention something about MD Anderson. Julie, our awesome tour guide told us that when Katrina hit, they welcomed 487 cancer patients, they were unable to get their medical records, they helped the people - no questions asked, no requiring any insurance of payment. When we hear stories like this, we can see what a TRULY amazing hospital this is!!

UCAAN appreciates your continued support! A special thank you goes out to all of you that contribute to our cause. Thank you! We hope that this documentary will help us not only spread the hope to others, but also to raise awareness about what UCAAN can do for you!!


Tomorrow's Teaser:
We venture out to Tampa, Florida (10 hours!!) to meet a woman who supported UCAAN in the beginning and we're meeting her for the first time!!

UCAAN Cross Country Trip - Day 2

Hey Everyone!

What a day! Day 2 was a lot of fun and I have a lot to tell you, so hopefully you enjoy all of the writing and the pictures! Feel free to send these entries to your friends as well if you think they'd want to read about this trip!

When we woke up in the morning after a good sleep, we got ready to visit the Cancer Treatment Centers of America in Goodyear Arizona. I had always heard about the CTCA on the TV and always wondered what it was like. Today I found out and was beyond impressed. It's hard to tell you exactly how amazing the hospital was without writing out an entire few pages of details. But I can tell you this: It's like a resort for cancer survivors. It doesn't look like or feel like a cancer hospital, which is only a small reason why It's awesome! There are more reasons, and I'll explain with some bullet points, since this email is going to be long as it is.


CTCA Treats survivors 18+ with Stage 3 & 4 (advanced stage) cancers
Each patient/survivor is assigned a "Care Team", which is generally 5 people- an oncologist, a spiritual advisor, a mind & body therapist, a nutritionist & a naturopathic doctor. All of these people work as your care team & help you through all of your treatments!!
Flights to and from the CTCA are included for qualified patients
The are 100% digital! This means that when you are picked up at the airport by them, you get the paperwork in the car on a small tablet, this way you can fill it out on the way to the hospital!!! Saves time!
They do grocery store trips and activities with the patients
They have a restaurant on the grounds for the patients & their families that offers 90% Organic food and an experienced chef that cooks all types of food!! (Delicious & beyond affordable!)
They offer a lot of other treatment help like chiropractic, acupuncture, and more!
They offer a manicure & pedicure to survivors while they are getting treatments
They go above and beyond to make sure that every patient feels at home and is comfortable.

We were unable to video tape the interview with Beth, the survivor that we spoke with, but we were able to get the tour on tape, which you will see later. Beth's story is exceptional, and she shared with us how she was diagnosed and was at a treatment center that wasn't giving her all of her options. Her father told her about CTCA and within 2 days of calling them, she was admitted. She was very appreciative and excited about speaking with us. Her story to come soon!

Betsy, who gave us a great tour of the facility, bought us lunch and organic smoothies!! After our adventure at CTCA, we were on the road again, heading out to El Paso, Texas - a 6 hour drive. The drive itself was fun and of course Sarah and I found ourselves laughing the majority of the drive. We saw some extremely colorful checkered buildings near Phoenix, and had an interesting encounter with a cop, who was driving behind me for a few minutes- turned on his lights and as I pulled to the right he rushed past me. I can't even begin to tell you how fast my heart was beating (Sarah's too), and that I couldn't believe that he didn't just go around me. Lol. Classic.

I can tell you that Arizona seemed to go on forever and for the longest time we thought that we were in New Mexico already...but we had another 75 miles to go. As soon as we crossed into New Mexico, we noticed the time change- we had gained an hour and and it went from being 3:45pm to 4:45pm! We did stop in a small town to get some gas and as we drove back to the freeway, we noticed a deserted town that looked destroyed, and many run down buildings with businesses closed. It was Lordsburg, New Mexico. One hotel stuck out to us, as it reminded Sarah of the Bates Motel on the Universal Studios tram!

By the time we reached El Paso, we were beyond excited to finally be here. We spent some time just hanging out and ended the night by going out to karaoke for a bit. I had looked up a karaoke bar that was in El Paso, prior to us arriving and was beyond excited about being able to go out and sing with Sarah! We each sang a few songs and returned to our hotel.

I can tell you that today has been a busy day and we have another full day ahead of us tomorrow. Some things have changed with the trip so far, but we are working through them and finding a way to still get what we need to get done - DONE! We had 2 cancellations from hospitals, and some small route changes. We won't be able to go to Fort Worth tomorrow, and instead will be heading out to Austin, Texas to meet my online friend Eric and have his share his story. Till tomorrow...... This is the end of Day 2 and finally I am off to sleep!

PS. Day 1 I made 20 "Share the Hope" Bracelets and today I made 10. So far we have only given away 2, but there will be more!!!

Till tomorrow.... signing out!

UCAAN Cross Country Trip - Day 1

Hello Everyone!

Today - what an awesome first day! It all started at 9am,
when Sarah (my assistant extraordinaire & best friend) arrived
at my house to get me in her fabulous red Kia Soul. Our first stop
was San Diego, California to meet a father and his daughter, who
were both affected by cancer in different ways.

Doc, who had prostate cancer, shared his story with us and told me
"I'm not a survivor." As we talked, I told him what my definition of a
survivor was "From the moment you are diagnosed with cancer, you
are a survivor, whether you're going through treatment or have been
free of cancer for years. Every day you kick the cancer, you are surviving!
It doesn't matter if you've been through chemo or radiation or neither, you
still are a survivor!" Doc, smiled at me as I told him this.

Also with Doc, was his daughter Kryse, who was affected by cancer in another
way - she had lost her husband to pancreatic cancer in January. She shared
her heart wrenching story, but also her strong, positive attitude and her
passion to help others she met battling the disease.

How did UCAAN help these two fabulous people & UCAAN supporters?
My step-dad, met Doc at an event and told him about UCAAN and how we
help others affected by cancer. Doc in turn contacted me on Facebook to
find out more. We hit it off and have been speaking for several months.
I helped him by providing information to Kryse when she was going through
her husband's treatments and his passing - sometimes by providing small
things to people can make a big difference, which is what we try to do!

I gave a few gifts to Doc & Kryse today..... Gifts of Hope that many have
received from me in the past and will continue to receive. I made a "Hang in
there Hope Monkey" for Doc- it was cute and had some awesome muscles! I also
made Kryse a "Share the Hope" Bracelet and a "In Memory of" Plaque with her husband's name on it and a special message on the back. Just seeing how excited they were to receive these small gifts of hope, was awesome!

After we spent time with them, we were on the road again - with a 5 hour drive ahead of us to Phoenix, Arizona. The drive was fun, as Sarah and I found ourselves singing the whole way, laughing and having a blast. We say a lot of fun sights during the drive, like a small chapel on a big hill of sand, a restaurant shaped like a UFO, some gorgeous mountains & scenery, the handsome fellas at the border patrol with their dogs, the exciting sign for Golden Corral (Where we stopped and ate- amazing how they show commercials in our area for this restaurant but we have none.) and the awesome sign that read "State Prison Surprise" and underneath it "Wild Animal Park" - sooo random!

We did encounter what I would call a crazy intersection, that had cars coming from like 8 directions. I've been at a 5-way stop, but never an 8-way stop - which was completely confusing. Sarah and I can't wait to leave tomorrow and not have to deal with this intersection again!

I've included some pictures of the day for you. Hope you enjoy and You'll heard from me tomorrow, after we visit the Cancer Treatment Centers of America in Goodyear Arizona and head out to El Paso, Texas!

More to come!! This is only Day 1.

This Life - You Must Make it Work

It didn't take me long to realize what was most important to me in life after my whole cancer battle. For most people, it's hard to see past the tornado of things that we focus on and we miss all the important things along the way. I heard a song the other day, and one of the lyrics said "Those things don't last forever." The things they were referring to, were the material things - the cars, fancy flat screen TVs, the million dollar house, the items that would eventually depreciate and would need to be purchased again. The same thing goes for your private jet, your million dollar a year salary and your 200 foot yacht.... these are merely possessions and sometimes big goals for people... but after we go, what are they really worth? Nothing!

So, what makes me write this blog titled "This Life - You Must Make it Work"? Because in my journey through life, I have met many people, heard lots of stories and learned a lot. The truth is, that I have a memory problem and can't remember most of those conversations, but I usually try to write the stories down, or record them with a camcorder, so I can hear them over and over again... I wish I could remember them... But I can't. Why? Due to my radiation that I had to help me beat cancer for the second time, I have scaring on my brain, scaring that is permanent and has caused permanent damage to my brain. This is one of the problems that I have incurred since my last cancer treatments in late 2008. None the less, I somehow find a way to look past these bad side effects that I have incurred, the ones that will be with me forever. I must find a way to make things work.

So how do you apply this point of view to your own life? You need to look past everything else, and I know this may sound funny but you need to decide if what you are doing in life is what makes you happy. It sounds crazy I know! To throw caution to the wind and just do what makes you happiest in life, but this is one of the ways to improve your own personal quality of life. It's like putting on a pair of rose colored sun glasses, everything changes, things look clearer and more colorful! You need to think and decide what you love most in life and how you can turn it into a career, something that you can in turn make enough money to survive from. This isn't a quick decision and you may need to give up some of the extras that you are accustomed to, like the $150 a month special cable package, the $50 a month make up set, your $850 a month Mercedes with all the bells and whistles. When you look at all that stuff... do you really need all that? I guess most people think that since they have the money, why not spend it, well why not spend it doing something amazing, long lasting that will help others and best of all make you feel amazing!

We only have this one life and to waste it on fights, material things, excessive spending, etc is just like wasting your life away. Now this is only an opinion and you don't have to take it to heart if you don't want to. I think a lot about other charities, because people are constantly comparing UCAAN to the other charities, but we are very different. There are other charities that take in huge amounts of money, that have CEOS, including retired ones taking six to seven figure salaries, when the average amount that a CEO should be making for a non profit is between $92,000 and $147,000/year. Who decided that $915,000 was acceptable or event $1,550,000? These amounts are exuberant and they are taking so much away from the survivors that need the money more because they have gone through their savings, or just cannot afford the treatments that they need. It's sad and disgraceful and this is why we need to stand up for those that need the help! This folks, is part of why I left what I was doing and chose the path less traveled. I got into something that I was somewhat scared to get into, and nervous about - starting a non profit organization. I looked at my life after cancer and knew what my purpose was, I was saved to help others, to use the skills and passions that I have to help other people. I cannot do all this alone, because of my damage from treatments, there are things that I cannot accomplish without help. But I don't allow it to withhold me from accomplishing what I need to. The brain scaring, it's bad and has destroyed my confidence in myself, it has taken away my ability to remember and learn new information, but it has also shown me that with the help of others, I can accomplish even the hardest of tasks.

So, for this life folks.... look at what you are currently doing and decide if it's enough to make you happy. I have found that for the most part, I am happier, and although I have some life altering side effects I try not to allow it to hold me back. You shouldn't either. What would you do with your life if you could choose something better and more fulfilling than what you are doing now? What would make you happiest? And what would you need to do to accomplish this? Would you be able to make this work for you?

:)

Do You Know Where the $$ Goes? Charities & Donations

Something has been eating away at me and I feel the need to share what I have learned. I frequent two websites: Guidestar & Charity Navigator, which provide information about the larger charities out there and their financial information. I became interested in this, when I began to wonder if the money was going where it was supposed to (due to my volunteer work with another organization). This is one of the many reasons why I started UCAAN, because I felt that cancer survivors needed much more than what they were getting. These organizations are making so much money, and yet so many survivors are left with no way to get help. I experienced it first hand, when a charity that I depended on for transportation assistance lowered the amounts that they were giving patients every year (It was drastically reduced by 75%), yet their funds that they raised throughout the year had raised. I was confused and shocked..... I knew what I had to do. I had to build a charity whose soul purpose was to help these cancer survivors, to provide them with the resources and financial assistance that they needed! Eventually as we grow, we will be able to do all of this.... and with your help & support we can succeed and continue to grow!

I wanted to share this topic because, as I searched a CEO Compensation Study conducted by Charity Navigator (
http://www.charitynavigator.org/__asset__/studies/2010_CEO_Compensation_Study_Revised_Final.pdf
), which stated that the average pay for a CEO of a non profit is $147,000/year. And as I compared these studies to what CEO's were getting at numerous Cancer Organizations, I was floored. One CEO was getting $548,000 a year, another was $658,000, another was bringing in over $1,025,000. Although these organizations have been around for over 60 years, there's no excuse for them taking in exuberant amounts of money for their pay. As they continue to take more and more of the money, more and more money is being taken away from these survivors. The money that they need the most is being diminished, while the CEO's are taking in more and more money, with their board of directors close behind them. The organizations claim that they are providing services and giving money to these survivors, when in reality they are taking it away!!

Another thing that bothers me is this...... Have you ever donated to an organization via text? I found out that the only charities that they allow to take donations this way are HUGE charities that take in $500,000 or more per year. But what about the smaller organizations? It's more difficult for a smaller organization to not only be credible, but to also raise funds when they are competing against all of the larger organizations!

My best advice for you is to research your organization that you donate to. Look up their most recent annual report, see how much the CEO and their board of directors take in. Look at their bottom line, ask a survivor how much they've been helped by the organization! Ask!! Ask!! Ask!!

I'm about to provide you with very important websites to look into your charities, while I understand that it's easier to write a check to a charity you have helped for years, it's beneficial for you to look into your charity by spending 10 minutes researching where the money goes. Read the reviews, contact others and find out!!

http://www.charitynavigator.org/

http://www2.guidestar.org/

For charities like mine, we are still young and considered a seed or a small organization, but by talking to people we have helped, you can see all that we have done in a short time, all of the people we have inspired and helped in small ways that in turn made a huge impact in their lives. Because we are still small, we don't have annual reports like these bigger organizations, we raise under $8,000 a year, and unless you raise over $25,000 per year, your annual reports and tax forms will not be published on these sites. This is all just F.Y.I. for you!

Details: UCAAN's Cross Country Documentary 2011

It's exciting!! In about 8 hours Sarah and I will be venturing off on the UCAAN Cross Country Documentary Trip! I've got the itinerary together, the maps and directions, most of the hotels booked and the bags packed.

For those of you that want the details, please email me at: ucaanorg@yahoo.com to be added to our email blast list. Every day I will be emailing out an email with details about our day and photos! You'll have to wait to see the videos when we return and put it all together!!

The Cities:

San Diego, CA
Goodyear, Arizona
Phoenix, Arizona
El Paso, Texas
Fort Worth, TX
Austin, Tx
Houston, Tx
Baton Rouge, Louisiana
Tampa, Florida
Boca Raton, Fl
Jacksonville, Fl
Durham, North Carolina
Manassas, Virginia
Red Bank, New Jersey
Manhattan, New York
Boston, Massachusetts
Cleveland (Brook Park), Ohio
Chicago, Illinois
Elm Creek, Nebraska
Arvada, Colorado
Orem, Utah
Salt Lake City, Utah
San Francisco, California
HOME!!

Excited!
And I am finally off to bed! More details to come!!

UCAAN's Ultimate Cross Country Documentary 2011

UCAAN is embarking on a 2-3 week cross country experience and visiting some of the top cancer hospitals in the country! The trip will allow UCAAN to get their information out to these top cancer hospitals & to interview some survivors across the country that they have already helped, as well as getting more interviews with other survivors in the cities that they visit. The journey starts on Monday May 9th, 2011 as UCAAN drives from Thousand Oaks, CA to San Diego, CA - their first stop on their trip, followed by stops in Arizona, Texas, Arkansas, Florida, North Carolina, Pennsylvania, New York, Massachusetts, Illinois, Colorado, Utah & Northern California.

UCAAN also hopes to get connected with these top hospitals in hopes that they can share information about UCAAN to their patients, and UCAAN can provide information about these top hospitals to others affected by cancer! UCAAN hopes to make this an inspirational documentary that's not only about what UCAAN does to help others with cancer & their families, but also a story of Hope, Strength & Inspiration. A story about how the little things that we do for others can make a BIG impact in their lives.

The videos collected over the journey will be compiled into a movie, that UCAAN hopes to showcase at a local theater later this year!!

Here's the map of our route!


To receive updates at each stop of UCAAN's Journey, please email UCAANOrg@yahoo.com and put in your subject line - UCAAN Documentary.

Funding for You!

I thought that due to present situations completely out of my control that I needed to write an article about this topic. In the past, I have helped others set up their own fundraisers for numerous things - mainly families of cancer survivors.

The last family that I helped with this was my new friend Miriam, and the night that I came to help her was the first time I met her. We met through a mutual friend. Miriam's husband Farhad was battling Glioblastoma Stage IV, which is extremely aggressive. What they needed money for was for their eldest daughter, who was preparing to go away to college. She needed to raise enough money to get housing at the UC school up north. in addition to paying for a caregiver for her husband, because her daughters were unable to care for him while she worked full-time.

So, I helped them start out by writing an email to her friends & family. Keep in mind that you have to be as specific as possible. People need to know how bad your situation is, even if you're not up to talk about it. You're going to have to pour out everything that's going on to these people and understand at the same time that they'll want to help you by passing it onto their friends. You cannot focus about what people will think, you just need to ask for their HELP!

After you've written an email, set up a Paypal account, and hook it up to your bank account, this way people can donate and the money can be moved from your Paypal Account into your own bank account. Keep in mind that if you do use Paypal, they will take a specific ac=mount out of each donation you get. (Usually about 3% plus a .30 charge per transaction.) The best website that I can tell you about that will help you wonders with setting up a paypal account is:
http://www.ehow.com/how_2150092_use-paypal-account-accept-donations.html

Make sure before you send out your email, that you include your Paypal email address in your email, so your friends can donate after they read your email. If you can include a link, even better! This is the cheapest way to accept donations.

But there's another option, where you can still use Paypal, but can get donations from others who don't know you. They do deduct 5% from each donation, so it's really up to you as far as if you'd like to use them, but there are some benefits!
www.gofundme.com provides you with your own website for your donation page! This way you can go ahead and create a page and talk about your cause - whether it's raising money for treatments, transportation assistance or college tuition, this site allows you to get the word out, not only to your friends but to others! You are able to even share it to your facebook friends, tweet it or send emails right from the site. Another fun bit of information about this site is that it shows how much has been donated and what your goal is. And it gives you the option to allow people who donate to add a comment! :0) This is a GREAT way to fund-raise if you don't mind the fees.

There's nothing wrong with asking for help, and the truth is that many people think it's the worst thing possible. I understand that you don't want to make yourself sound weak or vulnerable and you want to sound strong like you can face the world head on with no problems. But sometimes, you need a little something. So my best advice is to take off your invisible cape, grab your computer or a pen and paper and write away! Write from your heart, let it all out and let those who love and care for you know what help you need. Besides the worst they can say is no, and at least you know you've tried. :0) Good Luck!

4/09/11 - Celebrating the Life of Edward

Today I went to a beautiful memorial - probably the most beautiful one I have been to in my entire life. We celebrated the life of a young man named Edward that I met late last year at our UCAAN Ultimate Experience Event in October.

It was really a bit of a coincidence that I met him. I had been going to a great networking group for a few months and met a woman named Mary Victoria, who I became friends with and who in turn referred many cancer survivors my way so I could help them any way I could. She eventually introduced me to her husband's side of the family and told me about Edward, who had been fighting Glioblastoma for several years. He was going through so much as a result of his treatments & the side effects that he had from the disease. As I spoke to Edward's mom, I told her a little about UCAAN and my story. She in turn told me about Edward and his situation. It's always hard for me to hear cancer stories, especially when it's someone so close in age to me. At the time he was 32. So, I invited them to attend the UCAAN Ultimate Experience event at the Canyon Club and told them that I had survivor tickets for them.


*This is a picture of Edward & his family with my friend Miriam who also lost her husband to cancer.*

I wish that I had more time to get to know and talk to Edward that night, but I could see the joy and the smile on his face that told me he was having a great night. As time passed, I was unable to talk to the family on a regular basis and in January 2011, the Glioblastoma had returned with a vengeance. Edward was back to doing treatments again and his situation was worsening. When I heard from Mary about his condition, I made him a plaque with his favorite character on it - Spongebob!


*This is the Plaque Made Just for Edward, and was given to him for his 33rd birthday on 3/27/11.*


*This is the reverse side of the plaque*

On 3/31/11 Edward passed away with friends and family by his side. They say he was smiling. They also say that he loved the plaque, which is awesome that I was able to give him something before his passing to let him know I was there for him too. So, on Saturday April 9th, 2011 I went to the memorial/celebration of Edward's life. The service was gorgeous, and it really hit me hard - the entire experience. I was having a lot of flashbacks about my own cancer experience and dreams that I had while I was in my drug induced coma- all of this brought me to tears.

After the memorial, I went to the reception, which was at Mary Victoria's home to celebrate Edward's life with his family & friends. The day ended up being exceptional as I listened to the amazing stories about Edward, how he was philosophical, what an exceptional writer he was, how he had so much passion and helped others, and how he never allowed material things and money to be priority one in his life. He was an amazing young man and we lost him far too soon. The friends and family of Edward filled the house with laughter and so much love. I wished that I had more chances to get to know him, but I know that he left a lasting impact in the lives of others he touched. Before I left that day, I gave gifts to the family members I knew: Mary V, Stella (Edward's mom) & Lina (Edward's Grandma). The gifts were handmade by me - all unique candle holders with Edward's name on them. I know that they appreciated them and I am do glad that I was able to meet Edward, his family & friends, celebrate his life with those that loved him most and hear stories of what a wonderful man he was.




*Lina, Mary & Stella chose their candle holders*

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Sending Love up there to you Edward, we all miss you but you will never be forgotten, even by people who just met you - like me! Tell my dad I say hi!

The Power of Giving Is Amazing

The past 2 days have been good ones, I can't complain and only have great things to say. Yesterday UCAAN was invited to participate in an Involvement Expo put on by the San Fernendo Valley Jaycees, which connected non-profits with volunteers, donors & community leaders. (The San Fernando Valley Jaycees is an energetic, innovative and effective organization comprising current and emerging leaders between the ages of 21 and 40 who are dedicated to impacting the future through networking, leadership development and community service.) The event was a GREAT opportunity for UCAAN to get recognized out in the San Fernando Valley. My mom and I worked our table and had a great day.

The best part of the day was meeting people. We had a lot of visitors to the UCAAN booth, all people interested in finding out more about the cause. :0)

I ended up giving away 12 "Share the Hope" Bracelets and 3 "Hang in There Hope" creatures (2 monkeys & 1 lizard). The stories I hear from people who were affected by cancer in some way, were heartfelt & hopeful. The least I could do was spread the HOPE to these awesome people. I hope that I made an impact in the lives of these amazing people which included a sweet little old woman who came and asked if she could volunteer because she's a breast cancer survivor. Way to go Mary! Welcome to the Volunteer Team!



My day today was exceptional. This story gave my friend chills when I told it to her. Ok.... Enough with the anticipation right? So, my best buddy and assistant and I stopped at my bank in Oxnard today, when we stopped a young man approached me and asked if I wanted my windows cleaned for a donation. I apologized because I didn't have any cash on me, but as I reached into my pocket for my wallet, I found a dollar. I approached the young man (in his late 30's) and I handed him the dollar and said "All I have to help you is this dollar. You don't have to wash my windows, I just want you to have this just because." He smiled and thanked me "God bless you" he said and insisted that he wanted to clean my windows anyway. I went to grab something out of my bag prior to walking up to the ATM and found a dollar coin- the ones they don't make anymore and I held it in my hand. After I handled my business at the ATM, I approached the young man again and handed him the dollar coin - "I found this and wanted you to have it." I told him. He and I ended up talking. I told him how I wished that I could have helped him more, and for some reason I told him that I had had cancer and because of it I was unable to do more. That statement turned it into a full conversation. He said "I'm so sorry that you have cancer, you're soo young." I told him I hadn't had it in years, and he smiled and said "Thank God." I agreed. He then said "I have a good friend who is going through chemo right now, it's very hard for her." I knew what I had to do. I got out a stack of UCAAN cards and a little organza bag with a "Share the Hope" bracelet and card in it. I went to him and said "I may not have money to give, but I do have this. I run a very small non-profit organization that helps people with cancer. So here are my cards, and here's a gift for your friend who is battling cancer." I continued to explain to him the purpose of the "Share the Hope" bracelet and how it was meant to be passed on. I could see the joy and tears in his eyes. I don't think that he ever thought that I would do something like this, something so selfless. He thanked me profusely and told me how much his friend would love the gift and my information. I told him it was what I did, "This is how I try to help people with cancer. Tell her to call me anytime." Before getting in my car, he smiled at me again, took a look at my card and told me "Hi Rachel, I'm Daniel. Thank you. God bless you! She is going to love this." I smiled back and told him to keep his head up, and to have a great day.

WOW! What an impact! :0) This is why I do what I do with UCAAN. I hope that I do hear from his friend and hope that I can help her in some way. Remember folks, we only have this one life - Why not make the best of it while we're here?

Choosing Priority One

One of the biggest things that I have noticed over these past few years with my experience with cancer, is the lack of knowledge other people have not only about our diseases, but also about the debilitating side effects and lifetime changes. Money is the biggest concern for people with cancer and their families. Because I am a huge advocate for not only myself but other cancer survivors, I have a strong belief in not only educating others about what we experience but also making sure that survivors get the information, resources and help that they need. The biggest unavailable assistance that most survivors and their families need is MONEY! I cannot begin to even tell you how many costs are involved for cancer survivors and their families. It's more than treatments, prescriptions, and other special procedures.
* It's the lack of money to pay for transportation to and from doctor's appointments and the fact that so many non-profits are reducing the amount of money that goes to survivors for this is scary and leaves survivors & their families unsure of how they can make it. It's the lack of volunteers available to drive patients to and from treatments, especially when distance is more than what they consider acceptable.

* It's the lack of assistance when it comes to housing. How is a survivor of cancer supposed to attain housing after a diagnosis? Especially if they don't have family or friends to live with that can help them care for themselves. Without a support system, how are they supposed to cope? Emotionally, Physically and Mentally? The truth is, there is NO assistance for housing for these survivors, and even when there is (like section 8) there are extremely long waiting lists that are up to 10 years long. What are you supposed to do in the meantime?

* Survivors not only need to eat healthy, but they also need to live healthy. What this means is it's extremely important for these survivors to eat healthy, organic food that don't have chemicals. This means that "Cheap" food like boxed pastas, raviolis, boxed rice with spices, microwavable & frozen meals aren't the best choices. While they fact that they are cheaper than an organic chicken, these survivors tend to choose these very unhealthy options because they don't have the money to get the healthier options. What I have learned from my own experience is if it wasn't for my mom buying the organic meats (which you eat smaller portions of because it doesn't have chemicals & hormones in it, and you get full faster) & vegetables, I wouldn't be as healthy as I am. In addition, she buys the supplements and vitamins that help me stay on a healthy track. The fact is, most survivors may not have this help from a friend or family member and will be unable to afford this food, even if it is necessary to survivor & get healthy. I have many survivors that wish they could afford to eat healthier and can't. As well as survivors who don't have enough money to pay for meals for their family for the holidays. This is so unfortunate and such a HUGE need, that is not being filled like it should.

- The truth is, that the list of needs for cancer survivors & their families goes on, and I can't get through all of it, but wanted to give you some of the basics. What I try to do, is explain to others what problems survivors and their families experience due to this HUGE threatening disease.

But the fact remains that while these needs are not completely offered or offered at all, people who haven't experienced cancer have no idea what we go through and why we are unable to afford their specialty services. Ok what am I talking about right? I have recently met a lot of people with businesses that aid people with health & wellness. The common reaction that I get from them is that if a cancer survivor NEEDS something they will find any means possible to pay for it. But the truth is that while these people may think that a patient's/survivor's Priority One should be their product or service, they need to understand that the Survivor/patient more than likely has other issues that are more important. I'll give you some examples.

1) I met a Naturopathic doctor who offered treatments of high dose vitamin D, that could be used with traditional Western Medicine. The treatments alone that he offered cost $5,000! When I expressed my concern and told him that most cancer survivors wouldn't be able to afford the cost of his treatment, he said "It's for their health and they will find any means necessary to pay for it." I can't even begin to tell you how disgusted I was with this doctor, and it didn't matter what I said to him, he just wouldn't listen. He insisted that people would pay for it.

2) I met someone who ran a health and wellness business who told me that because it was important for survivors to care for their health, that their products were important for cancer survivors to take. Their products included vitamins, nutritional supplements & replacements, and chemical free products for the home. It didn't matter what they told me to try and convince me that it should be Priority One for a survivor of cancer. The products alone that I would need for a month would cost me $511! This includes everything from vitamins/supplements, shampoo. conditioner, tooth paste, house cleaning products, laundry detergent, nutritional shakes & meal replacement bars, and to boost my confidence, some lip gloss. That's a lot of money for products for one month! How is a cancer survivor supposed to afford this and their treatment costs, transportation costs, living expenses, food and other bills?

There are more stories I could tell you, but I am sure you get the gist of what I am talking about. So Priority One for a survivor of cancer is their health. And they may need to consult many medical professionals before they decide what to do next as their plan of attack on their disease. For me, it was the Western Medicine (conventional treatment) and that was my only option. And while I am cancer free now, and have been for 3 years... I still have yet to reach my complete remission date which will be on April 30th, 2013. At that time, my cancer is less likely to return, until then.... I'm not completely safe. I am trying to do all I can, but the fact still remains that the side effects I have from the treatments are causing more problems than I can financially afford. All of which bring me to the decision that I am at now, how do I choose my Priority One? How does anyone? My options are:

a) Get 3 dental implants to replace the molars that were extracted because they were damaged and deteriorating as a result of my extreme treatments. As well as getting my other teeth repaired. each dental implant costs $2,000 to $3,000 each at a dental school, not including sedation, which is $330. And the remaining dental work would cost another $8,000 to $10,000.

b) Get a total of 78 chiropractic treatments over the next 8 months for my herniated discs & degenerative disc disease which is severe in my low back as a result of treatments. The cost for this is $5581.

Both of these are extremely important, but cost is an issue in both. How is one supposed to choose between the two? Especially when money is such an issue?

The key is to look into all of your options, if you are able to, try and have a fundraiser for yourself to raise the money for a particular treatment. Otherwise, check and see if you are able to find any doctor that is willing to work with you. I know that I can admit that my credit sucks as result of all the medical issues I have had and have been unable to pay for. And while I am unable to pay them, I am forced to look ahead instead of at the past and try and find a way to deal with the current issues. We can only do as much as we can. Take it one moment at a time and stay positive.

The biggest thing to keep in mind is this: "You should be thankful that you are ALIVE!" Not everyone beats this disease and while that is a sad fact of this disease, the fact remains that YOU are here now and MUST take care of yourself NOW and for the future. You can only do what you can do. :0)

Why Survivors & Their Families Need Advocates Like UCAAN!!!

Being a two time cancer survivor, I can speak from my experience about what I have been through, what I have learned, what side effects I have had and how I have come to deal with them. I'm the guinea pig, and can accept that I may need to try things in order to find a way to really help more and more survivors. Now when I talk about being a guinea pig, I'm talking about.... several instances. Survivors and their families need ADVOCATES! They need someone in their court, that can help them more than the average social worker, and really provide them with a clear idea of what they are up against.

No one knows more about how a spinal tap feels, a bone marrow biopsy, 8 hours straight of chemo, weeks of radiation, surgeries to remove tumors, mastectomies, and more - than a survivor of cancer. I remember when I was about to get my first bone marrow biopsy in 2006. I asked my nurse practitioner, who was going to do the procedure on me how it would feel. Her response was "You'll only feel a little pressure." I can tell you that the procedure was far more than a 'little pressure', and the fact was that she had never had to go through one - so she had no idea how it felt! (I know that other people have had these processes and would agree with me as well) I know that when my mom witnessed a Nurse Practitioner administer a bone marrow biopsy on me while i was sedated that she told me "I can't imagine anyone being conscious for that procedure!" I looked at her, smiled and responded "Trust me mom, I know!"

There are so many examples that I can tell you about, and I don't even know where to begin. But with you as the reader, i have the responsibility to provide you with as much information as possible because I feel that not enough of this information is out there and not enough people know what we as survivors go through. Especially if their lives haven't been impacted by cancer in one way or another. I'm going to tell you about some of the biggest issues that survivors have, and how I am taking a stand for not only those still fighting, those who are in remission, their families, and also for those we have lost. I hope that this opens your eyes and makes you realize why this organization is not only extremely important to me, but also why I do what I do and why we need all of your support!

Money, Insurance & Stability- I recently met an insurance guy who told me that I would have to wait till I was cancer free for 10 years before I could get health insurance through a company that wasn't through the roof. I'm going to be looking into this to see if this is completely accurate, but in the meantime let's assume it is. So, when I was diagnosed, I had no health insurance and because of the severity of my situation, the hospital provided me with emergency medi-cal, and my mom started filing paperwork for me for that as well as for Social Security. The process to file these forms are beyond consuming, and the wait to get notice may take even longer. I've met people who waited 6 months to a year before they received their SSI benefits. And if you are unable to get insurance, how are you expected to get the help you need? Stability is important as well as consistency.

* Let's say you're diagnosed with cancer and don't have family to live with. Who will help you care for yourself after treatments? Who will help you when you're throwing up uncontrollably as a result of treatments? Who will help you with shopping? Cooking food? Who will drive you to and from appointments every day? And if you're unable to work, and are waiting to get your benefits- how will you survive? Where will you live?

- The truth is, there's no real solution for this. There are NO options for housing assistance for survivors of cancer and there are very few options for transportation- especially daily. Your best bet is to contact Access or Dial-A-Ride, through the city to see how you can apply for disabled assistance and transportation. And insurance isn't any easier to get.

Side Effects of Treatments - In my situation when I was diagnosed in 2006, I wasn't given any options as far as fertility were concerned because I was so sick and treatments had to be started right away. This topic will be longer, because there are sooo many problems that stem from cancer treatments.

* Let's say that you've had total body radiation, or radiation to your head and neck. The doctors only tell you about some of the side effects from these treatments. And you notice after time that your teeth start breaking or chipping. You notice that maybe you've gained or lost a lot of weight, or your sexual drive and desire is gone. The same goes for excessive chemotherapy treatments. How do you get your body back on track? How do you deal with the future of problems and side effects?

- There's very little help out there for survivors when it comes to this stuff. Honestly, it took me a long time before I was able to get my teeth worked on. In my case, I am on Medi-cal & Medi-care (Medi-care as well because I had been on Social Security for 2 years, and after 2 years of being disabled, you are given Medi-care.) and a lot of care after the treatments are not covered. I have 2 herniated discs in my back, which cause numbing in my back as well as severe pain in my back & neck. The truth here is that my insurance would pay for the extremely expensive radiation & chemotherapy treatments but they will only pay for 2 weeks of physical therapy per year to help me repair my back from the treatments - nothing more! So how do you resolve the situation?

- Need dental work and only have Medi-cal and Medi-care? They don't cover dental anymore if you're over 21. They will only cover emergency extractions and x-rays at a main dental center that takes Medi-Medi (but most places don't anymore). And in order to go to these centers, you MUST have a referral that lists which teeth need to be extracted. For me, I had to go to 2 different dentists prior to getting a referral for USC School of Dentistry. The cost for two dentists with x-rays would have been over $200. But if you don't have the money, how would you pay for this? And if you have a unique situation like me, I needed sedation. General Anesthesia at USC Dentistry school is $330, and full sedation is $550. WOW! And if you needed implants for the teeth taken out - that's $2,000-$3,000 per tooth!

- Infertility and lack of desire are common side effects of treatments as well. How would you deal with this? If your treatments made you infertile and you were unable to save eggs or sperm prior to your treatments. Your only real option is Adoption. But if you've had cancer and are single you can't be considered. Hmmmm. Amazing how all this works right? And adoption in the US costs how much? $40,000-$70,000? How are you supposed to afford this after everything you've already been through?

- The scariest part of all is what I am currently going through. I have been disabled for 4 years and have been on Supplemental Security Income & have had Medi-Medi over that time. Because I am disabled I was able to apply for disabled housing through my community it's called Many Mansions. I waited 2 years before I was called to get a place. But I didn't make enough to live on my own, and had my mother as a roommate. Over the past 2 months I have filled out an abundance of forms for Social Security as my re-determination, and for Many Mansions as well. I've been approved again for my housing, but was stressed when I received the letter from Social Security saying that I would be loosing my benefits. So, as of March 2011 they are canceling my benefits and I will only be getting 2 more months of benefits. What does this mean for me? That I loose my monthly income, my insurance benefits and as soon as I report it to my apartment manager- possibly my housing. :0( How does one deal with this? One thing's for sure... I'm going to Appeal their decision and hopefully be saved! Like I said in the beginning of this blog, I am the guinea pig- trying to help others by having to find a way through tough situations.

- There's one organization that I know of that offers grants and financial assistance to survivors for a variety of things including dental care and nursing services. But once you've received aid from them, you can never apply for any other financial aid from them again! As far as my social worker, ACS friend and resource associate has told me- there’s not a lot out there. Not enough… to help us!

These are only a few situations... the list really goes on as far as problems that we as survivors go through. And this also applies to the families of survivors/or families who have lost loved ones to this disease. There's not a lot of financial assistance out there for them either! So, how would UCAAN like to help with all these situations? I'll tell you!

UCAAN believes that these survivors deserve the help, and this includes their families as well! And this is more than a dream to me, but a BIG GOAL! This is why YOUR SUPPORT is NEEDED!

* We'd like to offer financial assistance to survivors for everything from paying for half of or getting dental services donated, dental exams and care donated. Did you know that if you want to protect your teeth from the damage that radiation & chemotherapy cause, you do have an option (and I wish someone would have told me this years ago)! Fluoride Trays can be used daily, and even when you get radiation to help prevent excessive damage to your teeth. We'd like to get some of these fluoride trays donated. We'd like to offer full year Gym memberships & discounted memberships. Housing options & housing assistance, eventually we'd like to have a UCAAN Housing facility as temporary housing for survivors- a lot like a group home. Organic market gift cards, healthy cooking classes & education. Assistance or options for insurance for cancer survivors. Vitamins and supplements donations. Holiday food donations.

Physical Therapy financial assistance. Assistance for families who have lost someone to cancer or who need help caring for them- Nursing services, transportation, house cleaning......The list goes on!

Support UCAAN Today! Donate: www.ucaan.org
Volunteers Needed!!! Artistic & Creative Types Needed!
Attend one of our events! Keep your eyes open for our September Date Auction with Celebrities!!
UCAAN also purchase our "Hope" Jewelry---> 100% goes to the Cause!!!
Donate Money so we can award more and more survivors with "Share the Hope" Jewelry, "In Support of' and "In Memory of" Plaques, Music CDs, handmade greeting cards and MORE!

Dental Continues

So, two weeks ago I finally was able to get my dental work done- well the 3 extractions that were considered "Emergency Extractions". I can honestly admit, that the procedure was easy, but it was after that I was upset by the surgery. I was partially excited because I wouldn't be in pain anymore, but the fact remained that I was missing two of my front molars and I was beyond self conscious about it. It took me over a week and about 10 friends and family members to tell me that it wasn't noticeable for me to get over it. That first week was difficult and most of the time I hesitated when I felt like smiling, or would cover my mouth so I wouldn't expose the gaps that I felt were obvious.

The gaps where my teeth once were are slowly healing now. I have a dry socket where the biggest extraction was, and I'm dealing with the pain. But now I'm noticing that it's harder to eat things, with these front molars missing..... Like steak, carrots, apples, etc. It's going to take some getting used to. And I hope eventually that I am able to get implants where these teeth used to be. But if and when I do... I'll have to pay for it because they are considered cosmetic- do you like how that works? The tr5eatments that are meant to save out lives, cause these HORRIBLE side effects and damage to our teeth and our bodies. Yet our insurance won't pay to help your body recuperate from these treatments and this damage! This is interesting to me, because when a woman has breast cancer and has her breasts removed, she is able to get reconstructive surgery (Implants), but the same doesn't apply to dental? Hmmm.

Things to think about. What's covered by your insurance? Make sure to check out your coverage! ;0)

The Hourglass is Running.......Life Changes

I knew that this would happen eventually and had even attempted to semi-prepare myself for this. But let me tell you..... when it hits you like a ton of bricks, and you feel like you've been side swiped- you haven't a clue how you need to move forward.

When I started UCAAN in 2009, the main mission was to get cancer survivors to become fully self supporting and off of social security. But the fact was that I hadn't even accomplished that myself due to all of my side effects of my treatments. But here I am trying to help other survivors accomplish the goal that I have yet to. Hmmm. I'm not quite sure how to feel about this. Until I received a determination from Social Security in the mail today. In short the letter said that as of March 2011, I was no longer considered disabled and was in remission from cancer. What does this mean for me? They are taking away my Social Security, which is my only means of income, and I will receive my last payment May 2011. But that's not all. There's a HUGE possibility that I will loose my Medical insurance as well. ::Breathe:: I've been crying about all this. I knew it would eventually come to this, but I was hoping not yet. I'm not ready for it. But when does it work out any way other than like this.

So I have 2 months to find a job that I would be able to get health insurance from. With a pre-existing condition.... And then a thought came to mind.... can they really consider me not-disabled if I haven't reached my 5 year cancer free mark? I'm not sure. But that WILL be one of the questions I bring up to Soc. Sec when I appeal their decision. Now, news about getting cancer is scary, trust me I know. But so is finding out that your money and insurance is being pulled out from under you. Especially when they haven't investigated everything that needs to be reviewed. Like the Neurological studies that a Neuro-therapist did with me in 2009 that proved that I have learning disabilities as a result of my treatments.

So here I am again. I've become a guinea pig for other survivors. Providing the guidance, and help that many of us are clueless and unsure of how to deal with these types of situations. I feel stressed and have been crying since I read the determination letter. What's even better is the fact that the instructions on how to file an appeal are soooo bland and hard to understand unless you have your head on straight when you read it. I have no idea what will happen next with this case, but I have to keep positive and understand that maybe this is the best thing for me. So that I could provide this help and knowledge to other cancer survivors.

I'm scared, because I have so much riding on this outcome. My insurance, my income, my housing, my future, UCAAN's future.

So I ask.... God is this part of your plan? Do you want me to go through this experience so that I can live up to my mission for UCAAN and help other survivors get through this. If this is the case, give me a hand. :0)

A Light at The End of The Tunnel....... Dental.

Well folks, there is a light at the end of this tunnel. And it took more time than expected to get some helpful information. We (UCAAN) wanted to use my experience as a guinea pig, to see how difficult it would be for a survivor to get this information, and what was needed to get to this point. Let me just say, that it shouldn't be this difficult for a cancer survivor to find these resources! We (UCAAN) were thrown in so many directions and dead ends before we found out anything helpful.



My case is unique- because I have had cancer and have so many side effects, many dentists wouldn't do IV Sedation on me, because they feared that they would have to intubate me and would be unable to. For me, I need to be sedated for dental work due to high anxiety and stress levels that being awake causes me. Now, the search alone for a dentist that no only offers general anesthesia, but takes Medi-Cal is almost impossible to find. I contacted the local hospitals for information- with no luck, the Ventura County/Santa Barbara County Dental Associations, the Medi-Cal website, local sedation dentists, etc. Some of them had information that was out-dated about places that did dental work still for emergency situations and take Medi-Cal. But they all proved to be incorrect. So, when will things like this be easier for us to get to? Does every cancer survivor with a situation similar to mine have to deal with all the red tape, and endless calling before they get a piece of good news? NO! We at UCAAN are working hard to get this information to you!



So, the journey to USC was a long and complicating one, but 2 hours after we left Thousand Oaks, we were able to find the USC Norris Dental Science Center. In order to see the oral surgery department, you MUST have a referral from a dentist with their recommendations of which teeth need work or need to be extracted. You MUST get a consultation from USC prior to any surgery. So you know, the Consult cost s $55-85, and the hours on their website are not correct. The USC Oral Surgery Office is open from 9am-11:30am (lunch from 11:30am to 12:30pm) & 12:30pm-3pm. Their contact number is (213) 740-1583 And they do accept Denti-Cal. If you call them to schedule a consult, they may be booked many months in advance, and the best advice I can give you is what the young woman on the phone told me. She suggested I come down one day at 8:30am and wait all day in the case that they get a cancellation. This is what we did today and it worked in our favor. We got there at 9:45am, and were done at 12:30pm! YAY!!! Now, to wait for them to schedule me for my extraction surgery under GA (General Anesthesia- which is known as conscious sedation- where you are not intubated for the surgery) this is the most common way, and in my opinion better than nitrous oxide (laughing gas). The GA will not be covered by Medi-Cal, and you will need to know the cost in advance: $330 for the sedation (GA), stronger sedation with an anesthesiologist is much more and is $550. These are costs that you should be well aware of. Amazing how the chemotherapy and radiation save our lives, but in the long run they cause more problems, many of which are not covered by our insurance - interesting!!!



And unless your dental x-rays that you bring to them are panoramic x-rays, there's no sense in bringing them- because they will have you get your x-ray with them. With a very new-age super cool x-ray machine that circles your head and takes an awesome PANORAMIC VIEW of your teeth for them. Keep in mind this is a dental school and the students that work there are awesome! :) And their professors/main dentists are very thorough.



Since I am on coumadin (Warfarin- Blood Thinner) for my DVT (Deep Vein Thrombosis) I had last March 2010, I have to be off Coumadin for 5 days, and get my INR (International Normalized Ratio) tested the day prior to my dental surgery. I am hoping to have this dental work done and have these teeth extracted next Wednesday. Will keep you posted. And I hope that this information has helped you!

:)

The USC School of Dentistry website for Oral & Maxillofacial Surgery is: http://dentistry.usc.edu/oms.aspx



Dental Issues are no Fun, even after all we have been through.... right? But UCAAN is here to investigate and find the places where UCAAN find help!! YAY!

It was far too soon - Yet I will Continue the Legacy!

As I sit here in my house looking at the pile of papers from the ACS - the commitment papers to participate in Relay for Life this year. i shake my head in disbelief. Why did I choose to take on yet another commitment? Yet another thing on top of everything that I am already doing.

I look back to moments before at the Relay for Life Kick off and my new Friends Emma & Jeff. And as I sit there with no expectations other than learning about the cause that my own father loved so much and my mom worked after he passed on. They asked "Who will be the first team to sign up for Relay in Westlake?" I can't even begin to explain it, but I jumped out of my chair with excitement. Unsure of what I had to face ahead of me ad unsure of what had lifted me out of my seat - knowing in the back of my head that I still had so much to do for my own organization's survival.

So now, I am back home.... crying. I have no idea why I took this on, when I have so much already. And then the voice of my mother is above me "Your father loved the ACS, he volunteered for them for 5 years- two of those years he was battling his own cancer." Somewhere in the depth of my heart and my memories I knew that this step had to be taken, not only for myself and other survivors, but in memory of my father, who loved me as long as he could. U+If it was up to him, he never would have left my side, and I know this it true. So for you Dad, I have started TEAM UCAAN, because I want anyone and everyone who is affected by cancer to know that They CAN - UCAAN Make a difference by participating in these replay events!

So in memory of you Dad, I take this HUGE STEP, something bigger than what I am doing with UCAAB, something that YOU believed in, something that you supported, and something mom supported when you were gone. I Love and miss you dad. I wrote this small poem for you:

Memories, only picture pieces I can see
Memories, I learn and stories I hear
from those who told them to me
If only I had the real chance to know you
To see how much of me was in you
You loved me from what everyone else
could see, and I felt the same
You worked for the ACS NY, even before the disease
struck your life
But you didn't let it stop your fight
The options were null, you took it into
your own control - vitamins were the only way
You worked for ACS NY for 2 years until
the disease secummed your life.
You were strong and held on for 2 years
It was far too soon for you to go
Only January 26th of 83'
My daddy, I didn't even know you
It was too soon for you to go
When it all happened , mom was working for NYU Medical
center
and decided to do what you loved
She took your job at ACS
I don't remember your face, or your voice.
The only memories I have now are the stories & Pictures
But I know how much you loved me by smile on your
face as you looked at me in those pictures.
Here I am Remembering you
What else can I do
But remember you

And take your passion of working with ACS
and make it a part of my life.
Daddy I miss you and all I can do is
Remember You,
the way that you will always remember me.
You're missed. This one's for you Dad.

TEAM UCAAN
will be participating in the Relay for Life event for ACS in Westlake Village on Sat & Sun Aug 6th & 7th, 2010 at Oaks Christian High School
To Be a part of TEAM UCAAN, Contact Rachel Shur 805-479-1032 or UCAANorg@yahoo.com

12-06-10 UCAAN Help!

*Cancer - affects all of us in one way or another, a friend, family member, a neighbor, a child, even ourselves.... This year, it's been expected that there will be over 1.5 million new cases, and a 1/3 of them will pass away. These statistics are startling, but we must see it as a growing epidemic.



Being diagnosed with cancer is beyond scary and when dealing with so much already it's hard to know what priorities to set into play. Focusing on appointment after appointment and numerous tests can be discouraging. But we need to realize that there is more help for us out there. There are people who have been heir too and can provide others with their strength, hope, inspiration & knowledge.



People like Rachel Shur, who is a 2-time young cancer survivor. Shur was diagnosed in December 2006 with end stage Leukemia and was given a 10% chance of survival. Shur is coming up on her 4 year anniversary December 11th, when the doctors initially diagnosed her. Despite all of the trials & tribulations she had to overcome over the past 4 years, she has surpassed the doctor's original expectations. She has even started her own non-profit organization called United Cancer Advocacy Action Network (UCAAN) and she's been helping fellow survivors for over a year. By not only providing them with the resources and information that they need but also by donating small handmade gifts of hope to survivors, which include handmade plaques, bracelets and pendants that Shur makes herself. Her favorite gift to give away is the "Share the Hope" bracelet because she says "It's a way to give to those survivors who need it, and if they ever meet a fellow survivor or caregiver that needs it more - they are meant to share it by giving it away to them."



"People are very familiar with the Pink Ribbon." Shur says "We see it everywhere all throughout the year, everyone knows that the pink ribbon stands for breast cancer. But do you know what the other colors of the other cancers are?" Shur asks. The truth is that most people don't, unless they knew someone who was diagnosed with another type of cancer. "I was diagnosed with Leukemia and my cancer color is orange." Shur replies. When Shur first was designing her logo for UCAAN she had a great idea and used purple ribbons for the "A's". "What does purple stand for?" Shur asked me. I didn't even know what to say, and she quickly answered it for me. "Purple is the universal color of all cancers! My organization helps people with All Types of Cancer!"



UCAAN continues to help survivors of cancer and plans on having more and more events in the near future where survivors can get involved. "I wanted to build a strong organization of volunteers & survivors who really want to make a difference in the lives of other survivors. I really want survivors to feel like they are apart of something and UCAAN is where they need to be!" Shur says. As we approach the holiday season, we must keep in mind that there are many people out there that need to know about UCAAN and all it has to offer them & all it plans to offer in the future. UCAAN is sponsoring the "Gift Wrap 4 a Cause" fun-raiser at The Janss Marketplace starting Wednesday December 15th thru Friday December 24th. Gifts will be wrapped by volunteers and they will be accepting donations. But that's not all UCAAN is doing:



* They have a L'il Elves Workshop where kids can decorate holiday cards that will be sent to cancer survivors in the hospital at UCLA Medical Center & The City of Hope.
* They have a gift basket giveaway, where every $20 donation gets you entered into the drawing.
* Hope jewelry will be available for sale there, and customizable pieces are available as well! 100% of proceeds from these sales go to UCAAN.
* Tax Deductible receipts are available upon request.



UCAAN hopes to spread the cheer to as many people as possible. Shur adds "If you're a survivor of cancer, we'd love for you to come visit us. If you tell me your cancer story, I'll have a special gift for you!" This sounds like a lot of fun, a great cause and if you want to participate or volunteer, please contact Rachel Shur directly at: 805-479-1032 or ucaanorg@yahoo.com