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!
Sunday, March 27, 2011
Saturday, March 26, 2011
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 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)
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)
Thursday, March 3, 2011
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!
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!
Monday, January 31, 2011
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
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
Monday, January 17, 2011
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
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
11-27-10 Why Spreading Joy is Important 2 UCAAN & I
I don't remember every bit of my holiday experience back in 2006, when I was initially diagnosed with end stage leukemia..... but I do remember little pieces of it. I was at the City of Hope for a month, and most of the time I was in a drug induced coma or relearning how to do the simple things - walking, reading, writing, eating, etc. I know that I was put into the drug induced coma quickly after I was admitted into the City of Hope, and I know that when I woke up - people said I was crazy - coming off of the morphine. But it's the stuff after that I remember the most. I remember not being strong enough to get myself up out of bed without help, I remember passing out if I sat in a chair too long, and I remember the days when I first started learning to walk again. Those were tough times, but my perseverance was strong!
I also remember how I slept all day most days and how hard it was for me to read my holiday cards that came in from friends and loved ones. I always appreciated the cards that I received, but was always discouraged because I couldn't read them well enough to know what they said. Often I had to have a nurse read them to me. :) Which was nice. While I was in the hospital I remember meeting fellow survivors, who were far from home and only heard from their families in emails or calls every once in awhile. And some survivors didn't have family to call them or send them anything......
This is where the importance of spreading Joy is important not only to me by also for UCAAN. Part of what I do with UCAAN is give gifts to survivors of cancer - CDs to the radiation oncology department at The City of Hope, Star of Hope necklaces & Hope bracelets are given to social workers who get them to patients. I am all about spreading that extra dit of joy, inspiration and love to these fellow survivors!
This is where you come in! For those of you who live near me, UCAAN come down to our Gift Wrap 4 a Cause location and choose to decorate a holiday card or two that will be in turn sent to cancer survivors at The City of Hope & UCLA Medical Center this holiday season 2010. I know that if I was in the hospital now, I would appreciate it if I received a card from a stranger who understood cancer, and who was there for me. So come on by- The Janss Marketplace - right next to Radio Shack & Aaron Brothers - Store #173-D. :)
Please help me help others by spreading the joy and the hope!!!
I also remember how I slept all day most days and how hard it was for me to read my holiday cards that came in from friends and loved ones. I always appreciated the cards that I received, but was always discouraged because I couldn't read them well enough to know what they said. Often I had to have a nurse read them to me. :) Which was nice. While I was in the hospital I remember meeting fellow survivors, who were far from home and only heard from their families in emails or calls every once in awhile. And some survivors didn't have family to call them or send them anything......
This is where the importance of spreading Joy is important not only to me by also for UCAAN. Part of what I do with UCAAN is give gifts to survivors of cancer - CDs to the radiation oncology department at The City of Hope, Star of Hope necklaces & Hope bracelets are given to social workers who get them to patients. I am all about spreading that extra dit of joy, inspiration and love to these fellow survivors!
This is where you come in! For those of you who live near me, UCAAN come down to our Gift Wrap 4 a Cause location and choose to decorate a holiday card or two that will be in turn sent to cancer survivors at The City of Hope & UCLA Medical Center this holiday season 2010. I know that if I was in the hospital now, I would appreciate it if I received a card from a stranger who understood cancer, and who was there for me. So come on by- The Janss Marketplace - right next to Radio Shack & Aaron Brothers - Store #173-D. :)
Please help me help others by spreading the joy and the hope!!!
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