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!!
Monday, May 9, 2011
Tuesday, April 26, 2011
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.
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.
Saturday, April 16, 2011
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!
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!
Monday, April 11, 2011
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*
*********************************
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!
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*
*********************************
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?
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?
Monday, April 4, 2011
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)
* 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)
Sunday, March 27, 2011
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!
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!
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