Cancer Bridge

24 Feb

So here is what I have been thinking a lot about lately – putting what I have learned this past year to good use. It has been a tough year to say the least. But, something I have never talked about here are the costs of cancer – that is the financial costs. I have certainly covered the emotional ones over the course of this year 🙂 There are many organizations that are racing for a cure. And, I am so grateful to these organizations. Susan G. Komen is certainly one of the most known, but there are many other organizations that are out there raising money for a cure for cancer. However, what I have found is there are few that are out there raising any substantial funds to help present breast cancer patients – or cancer patients in general. There are resources for some aid. But, these are limited financially and in time and scope. For example, most monies for breast cancer patients (in fact, all that I know of) are limited to the time during which the patient is going through chemotherapy, mastectomy and radiation. Once you have completed those treatments you are ineligible for any aid.

From my own personal experience, well, that is really tough. I worked full time during chemotherapy because I felt I needed to to just not be focused on the cancer. And, because I don’t do well just sitting around. Yet, I could have instead, not worked and there were organizations at the ready to provide financial assistance to have made that an option. I knew this. But, what I did not know is that when I was physically unable to work, that these same organizations would not consider me eligible (even though my oncologist said I was too anemic, too weak from radiation etc to work) because I was no longer going through the aggressive part of the cancer treatment.

The unique problem with this for breast cancer patients (the fact that funding is not available to you unless you are currently going through chemo, surgery for a mastectomy, or radiation) is that 1) it can take months to recover from radiation as typically the area radiated is pretty large and 2) if you have a mastectomy then you are likely going to have reconstruction. Reconstruction can in some cases be done in one surgery and in other cases (in particular, those women, like myself, who have undergone radiation) two or more surgeries. These surgeries can take a month to two months each to recover from and you never know if there might be some complication that draws out that recovery time. The point is, that this period of time is not considered “cancer treatment” and therefore is not a period of time (even though you are definitely not able to work) that these organizations consider you eligible for aid.

So, while I still have to fight my own battle, I am definitely planning on doing something to bridge this gap.

First of all, there is just not enough done for women (and men) who are currently going through cancer. I am all for that race for a cure and I am, like I said, grateful for the many non-profits that raise money for cancer research. But, there is really a hole here – there are so few financial resources for cancer patients. And, those that are available are mostly very short term. As a single woman, living alone on one income, it is particularly challenging to bridge that gap. And, add to that my choice to run my own business – well, it doesn’t get run if I am not running. You get my drift.

I am so fortunate to have excellent health insurance and I am even more fortunate to have my parents to assist me. But, the costs are so incredibly high. And, there are so many other things to deal with – navigating your insurance to get the care you need and want and deserve, finding the right information, getting the resources you need while they are available to you etc.

So, while I know I can’t go out and do it today – as I have to be my own cancer soldier right now – I want to form a non-profit that will address these issues.

Don’t get me wrong, I have been given a lot of great information from the American Cancer Society. And there are organizations out there to help. But, there is just this big hole out there where there is nothing available to you after a certain point. And, by that point, most cancer patients have exhausted their resources and simply making co-payments can often be too much, let alone keeping up your insurance premiums. So, I was thinking of something that would bridge the gap between that period of time where there is really good help from some really good organizations and the time that they cut off eligibility (which is long before a cancer patient is back on their feet physically – especially breast cancer patients who face reconstructive surgeries that can keep you out of the work force for months).

So, I hope to be a cancer soldier for others – once I am physically up to it. For now, I am setting aside things, making notes and just creating a file for the things that I would want to be able to provide. I want to also create a portal for all of the organizations that are out there to help. I found out about many of these too late. There just isn’t anyone out there really guiding you and your focus is and has to be on just getting well, getting through the treatment.

Anyway, I just feel that I have learned so much this past year and that I need to put that knowledge to use. Otherwise, it is just another woman who gets diagnosed who is starting over at square one. Does that make sense? I guess what I mean to say is that while I have every intention of surviving and moving past this cancer, it would feel wrong not to impart what I have learned in this past year to newly diagnosed women. I don’t mean to sound all high and mighty, or arrogant. I just feel that I had to learn so much the hard way and that there needs to be so much more out there for cancer patients. Those of us battling the disease today want more than anything for their to be a cure. But, my cure, like anyone’s is dependent upon satisfying the financial realities of cancer treatment. And, these costs are so very high.

Anyway, the point is I want to do something to bridge the gap and I also want to simply connect all of these already in existence non-profits that do help cancer patients so that a newly diagnosed cancer patient can know what his or her options are early on so as not to miss out and to be able to make decisions based upon what is available to them (like I said, create a portal where a newly diagnosed cancer patient could go to find out what resources are available). I found out about most way too late to take advantage of these.

And, I hate to say it, but there is a definite presumption that as a breast cancer patient you are married and have a husband to take care of you. I have never been called Mrs. more times in my life than this past year. It is really odd. And, quite frankly more women than not – who I meet in treatment – do have husbands. But, still, that does not mean that there isn’t a financial crisis brought on by the treatment – both in the costs and the time away from work.

Well, I won’t be filing the paperwork to create a non-profit tomorrow. I still have to do my own battle. But, I am going to do something as soon as I am physically capable of doing it.

4 Responses to “Cancer Bridge”

  1. David February 24, 2010 at 9:26 AM #

    Hello Lisa,

    This will be so awesome. All that you’ve learned will translate into so much good for others that have to struggle with the financial burdens brought on during and after treatments and surgeries.

    The stresses created by these burdens are such a factor in the healing process, slowing down progress in ones recovery. It is so great that you’ve documented so many issues that can be resolved with the insight that you have and of course, the willingness and determination you have to help “fix” the matter.

    I am so proud of you and happy that you’re feeling better. It will be a challenge and a process to get the “system” to do the right thing but with persistence and patience, it can and will be done. After all, who would ignore doing what is truly “right”?

    Love & God Bless,

    David

  2. Sandy February 24, 2010 at 12:22 PM #

    This is a great idea! Count me in to contribute some volunteer hours if you want help sorting information, etc. You are such a wonderful person for wanting to do this.

    Love,
    Sandy

  3. cancerfree2b February 24, 2010 at 7:31 PM #

    David, Thank you. I just feel like everything I have been through just keeps happening to someone else every day – the next woman, then the next woman (and men too) and there is this “process” that each cancer patient must go through and quite frankly it seems like each individual is on their own, having to reinvent the wheel every time. The learning curve is steep and it just doesn’t seem to get passed on. At least for me, I know it wasn’t.

    I did connect with some cancer patients who were ahead of me in the process, and they were wonderful to me. But, when it comes down to it, if you are sick you can only do so much for someone else and so while they were ahead of me in their own battles, they could not (nor was it their responsibility) to walk me through things.

    One of the things I found most frustrating – and still do – is to find out about resources that I could have had if I had only known. You would think that treatment facilities would do a better job at disseminating information – but, you know where I was at – so that kind of speaks for itself. Ugh!

    Anyway, thank you for you very kind words!

    God Bless and Love to you too,

    L.

  4. cancerfree2b February 24, 2010 at 7:35 PM #

    Sandy, thank you, that would be wonderful! I should say, that WILL be wonderful. It is probably a next year thing or end of this year thing – given what is still in front of me. But, I definitely want to do it.

    I don’t know about being a wonderful person for wanting to do this – – I think it stems more from being a frustrated person 🙂

    But, thank you very much for the compliment 🙂

    Love,
    L.

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