Cancer Bridges Dot Org

2 Mar

Hello All,

Well, I decided to spend 10 more dollars that I don’t have 🙂 (today was a very expensive “cancer” day, more on that later . . . maybe). The extra 10 was spent on a domain name that I am thinking of using in the future for the nonprofit that I intend to establish. I am thinking of the name Cancer Bridges – it would be: cancerbridges.org

What do you think of the name? Here is why the name appeals to me:

I have found firsthand that while there are many organizations raising money for a cure to cancer, there seems to be little available to the current cancer patient in the way of financial support. Don’t get me wrong, there are some really great organizations that provide financial assistance to cancer patients. But, these are very limited in what they pay and for how long. In many cases, the applications are exhaustive and, as I found out, funding was either not available (even though I qualified) or I was no longer eligible because I was no longer going through chemotherapy or radiation. I worked full time during chemotherapy. I also tapped into savings (naturally) and for most organizations, until you exhaust your resources, you are not eligible (I understand this). But, in my case, that meant that what qualified as the “treatment/eligibility period” was over – but, I was not able to yet return to work.

As a single person, I have my own unique challenges as well. But, it is is no walk in the park for anyone. And, while I have excellent health insurance, the costs of treatment (despite excellent coverage, are very high). Tack that on top of a period of time in your life when you are not working because you can’t and well, you see the picture.

I have learned so much this past year. I have learned how truly wonderful human beings can be. I have been inspired by so many and encouraged by so many. I have had mentors and formed great new friendships that will surely be lifelong and I am grateful beyond belief for all of that and for my incredible parents. I have also had to to be my own “cancer soldier” (in so many ways, way beyond what I would ever have imagined). And, in the future, I want to be a cancer soldier for others. When I am ready and able.

Breast cancer patients have a particularly challenging situation because your physical down time can go way beyond what is considered part of “treatment” (your treatment period being about the only time their is any financial aid available to a cancer patient – I mean it, American Cancer Society, Susan G. Komen, Beckstrand Foundation, Breast Cancer Solutions and many others – all fantastic organizations. But, all either limit their funding to the period of time you are receiving chemotherapy, cancer removing surgery or radiation or – they simply do not really have much funding available to be able to bridge the gap). Breast cancer patients who undergo mastectomies most often undergo reconstructive surgeries after “treatment”. This means additional down time and recovery and for some – complications. The point being, it just doesn’t wrap up the moment you are done with chemotherapy or radiation.

And, this is true for many cancer patients. It takes time to recover from chemotherapy and it can take a great deal of time to recover from radiation. With chemotherapy – it is all over the map – some people tolerate it better than others – some chemotherapy “cocktails” are more difficult than others to tolerate. And, cancer patients come in all ages, sizes, levels of health and have needs that go way beyond the “treatment” period. With radiation, recovery times are also all over the map – weeks, months – again, it all depends upon the dose a cancer patient receives, the area (how large) that is treated etc.

So, it just doesn’t end right when you finish your last day of treatment. I am still going through treatment. I have finished chemotherapy and radiation, but still have Herceptin treatments to complete. Then, assuming all goes well, I will be done with the cancer treatment phase. Still, for some reason, Herceptin doesn’t seem to be on the list of cancer treatments that give you eligibility for monetary aid (despite the fact that it knocks you out for a time afterwards and also takes a toll on your immune system). But, some women tolerate better than others and so perhaps that is why it is not on the list.

The other problem that I see (and have experienced firsthand) is simply that I did not find out about these organizations in time – there was no portal, no one providing information about the different resources out there. So, by the time I found out about these organizations (that provide aid for a limited period of time – in the beginning – it was too late. Plus, I probably would not have qualified at that time as I had money then. So there is a void out there and it is my intention to fill it, fix it.

Hence my idea of creating a “cancer bridge”. Two fold – 1) raise money for patients undergoing cancer treatment – and in particular, provide assistance during that void time and 2) create a portal – sort of a one stop center for finding resources.

I don’t understand it (although maybe I do), but, it seems to me that some of the organizations out there – all with the same goal of helping cancer patients in need – are competing with each other. At least, that is the feeling I had as one would never mention or inform me of another organization (even when their organization could not help me).

As a business owner, I know my market and I know all of the players in it. I can not imagine that cancer non-profits are some how unaware of other non-profits that are out there, ready and able to assist. But, for some reason, some of these non-profits seem to want to keep you with them – even if they can not help you – rather than send you to alternative resources. This is not true of every non-profit, but it certainly seems to be true of some – at least that is what I experienced. And maybe it should be your oncologist who simply provides you a list of the resources out there and the time frames for eligibility and what each resource can provide to you. Certainly, a law could be passed requiring this – it is already required that certain pamphlets be provided (these are created by the state) to breast cancer patients about their rights etc.

So, that is my goal – start up an organization that creates a portal for all of the wonderful, already in existence non-profits (with their time frames and eligibility requirements) and also find a way to bridge the gap between the treatment period where it is clear a person can not work and the period of time where, for example a breast cancer patient is unable to work because of reconstruction surgeries, or another cancer patient is simply not recovering from radiation treatment soon enough to go back to work (yet assistance may not be available to him or her).

Time to go to bed, have an early appointment tomorrow. So it is time for some shut eye. By the way, today was incredibly busy and eventful. Some good and some a bit rough. I don’t want to write about that now, I am looking ahead and looking forward. 🙂

Please continue to keep me in your prayers and don’t be afraid to say hi here, leave me a comment. I always appreciate it.

Much love to you all,

L.

6 Responses to “Cancer Bridges Dot Org”

  1. Jennifer March 3, 2010 at 12:01 AM #

    I think it’s a brilliant and important idea. The name is perfect. 🙂

  2. cancerfree2b March 3, 2010 at 11:08 AM #

    Hi Jen,

    It was so great to get to visit with you when you last came down. Can’t wait for the next visit 🙂 Thank you for your input on the name. It makes sense to me, but I am not sure. I did a preliminary search and there does not seem to be any competing dot orgs or businesses with that name. I will have to do some more research though just to be safe. I did find something called cancerbridge.org – but, it is limited to assisting people in a small geographic area – and it is only a pointer to their actual website of a different name. Still, I will have to make sure I can use the name. I don’t think it will be a problem. So I bought both the .org and .com, just to keep the name.

    I hope you are doing well and hope to see you again soon!

    Love,
    L.

  3. Sandy March 3, 2010 at 11:53 AM #

    Ditto on what Jennifer said. Plus, “Cancer Bridges” can also mean a bridge from cancer to health.

    Love,
    Sandy

  4. cancerfree2b March 3, 2010 at 1:52 PM #

    Thank you Sandy!
    I liked that aspect of it too – from cancer to health. I originally was thinking of cancer bridge – but the plural is better I think because it will reflect the fact that there are many organizations out there to help patients – and the site I envision will be a place for cancer patients and their families to find out about those places/organizations.
    I hope you are doing great. I look forward to seeing you sometime soon.
    Love,
    L.

  5. Sally March 4, 2010 at 3:22 PM #

    Hi, dear L,
    I don’t know if you’re using your name on this ,so I’ll call you L. I very much like the name and the idea for the non-profit. Why don’t the doctors pass on crucial info at such a critical time as upcoming chemo or surgery or radiation? Oh, well–Sorry that you had to learn the hard way how needed it is. Not only will you be offering a needed service to others, but your dedication to this work can hopefully be healing to you too. Glad your surgery is delayed a week. I am so glad you’re able to do more and have some fun. Please know our prayers and thoughts are with you, L.
    Love, Aunt Sally

    • cancerfree2b March 5, 2010 at 12:01 AM #

      Dear Aunt Sally,

      Thank you, as always, for your love, support and your prayers. I am using my name here. I have been able to make this blog not available to search engines (that was the reason for the change in address from my former blog to this one). There is an option with wordpress to keep your blog off of the search engines. That way you can let anyone you want to know about your blog, but unless a person has the actual address, they can not find it by searching for it. It is too bad that I have to do this, but, I had a competitor last year who found my blog and started sending potential clients to my blog – not good. Oh well. The old blog is shut down and now this one is not find-able unless someone were able to guess the address, and that is pretty unlikely.

      So feel free to use my name 🙂

      I spent the day today on the phone calling one organization after the other (starting with Susan G. Komen – who claims to underwrite a local organization here in Orange County that provides financial assistance to breast cancer patients). Come to find out, Susan G. Komen cut their funding this past year and so there is nothing there – yet they still tell you to go to this organization for help. It is just a circular, run around kind of thing. Each place keeps me referring me to another place and so on and so on.

      Not good. Anyway, it is something I intend to fix. But, first i have to create my own cancer bridge of sorts. I am working on that and not giving up.

      I am glad about the one week delay as well. Although, I am not quite yet settled on doing it then either. I have some concerns about the procedure and want to get a second opinion. I just hope I can fit it in between now and the surgery date.

      Thank you again for your comment and especially for you love, support and prayers.

      Much, much love,
      Lisa

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