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!

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