Monday, November 1, 2010

Here we are, 'we' and our shadows! 
Someday, sooner than for most children, my daughter's shadow will be alone.

I have stage IV Cutaneous T-Cell Lymphoma.
Well, you didn't think that I've been a slow blogger because I don't like YOU, did you? 
Only pain keeps me from sharing about our Cape Coop, I promise.

In celebration of their 40th anniversaryWalker + Associates, a large and successful advertising and public relations firm, is giving 45 hours of their expertise to a worthy nonprofit organization. The way we vote for a nonprofit is by  a nomination- the nonprofit with the most nominations receives the assistance. The nominations close on the 10th of November, 2010.

Here is an article about the firm, and why they are doing this.
Please, take a moment and go to the nomination form and vote for the Cutaneous Lymphoma Foundation with me.

Cutaneous Lymphomas are rare (the ratio is 1:400,000), incredibly painful and incurable diseases. They are considered the most painful of the cancers, for they cause enduring pain by damaging the skin and causing most tumors to form on the skin. Most patients are misdiagnosed for years, only to be diagnosed properly if they become Stage IV and are covered in painful tumors, yes, all over their bodies.

As I shared with you earlier, I have stage IV Cutaneous T-Cell Lymphoma. I suffer every moment.

I rarely can sit at the computer- my tumors make sitting difficult. I rarely go out, it is a great chore to bandage most of my tumors and to then put clothing on over the tumors, and moving is painful. I must 'sleep' most of the time, because as I am trying to sleep my tumors are bleeding and rubbing against the bedclothes, waking me up with pain, over and over again.

I can't work and I sometimes feel useless in this cancer battling body. 

Today it is believed that these lymphomas are most often caused by chemical exposure- somehow damage is caused to the DNA that sends instructions for manufacture of whatever cells are affected- in my case, the t-cells. My DNA is damaged and it gives the bone marrow instructions to manufacture cancerous, that is, immature, t-cells. Someday we will be able to repair DNA damage, but not today.

If you were exposed to Agent Orange during armed service and contract one of these lymphomas- you immediately get full veterans' disability benefits.

Some medications for psoriasis and arthritis can cause these cancers.

If you are a civilian you just run through your insurance and savings, most of the time ending up broke and uninsured if you are lucky enough to live for more than 18 months. I am that lucky.

another try at another chemotherapy

The only treatments we have for this at my stage are chemotherapy and radiation, they can't even give someone at my stage a remission, and rarely 'work' much, if at all. For me, nothing has 'worked', as yet. I've tried over a dozen chemotherapy drugs and combinations, and I've had both total skin electron beam radiation AND spot radiation. Although nothing has worked so far on my case, I maintain hope for some comfort and I continue to try to receive treatment. 

Some patients at my stage have a bone marrow transplant. It isn't a cure, but it does sometimes give the patient a little more time, sometimes as much as 18 months, before the patient succumbs, finally, to either infection or host versus graft disease. I'm not ready to have a due date, so this option isn't one I am willing to take, for now.

Making a cure happen is possible, but it takes money, as does research into how to help patients live a fuller life while suffering the debilitating effects of this family of cancers. This is a particularly horrible cancer- victims of this cancer suffer far more unmanageable pain than most other cancers. This prize will give the CL Foundation a much needed bit of guidance in how to get the message out, so that people will be diagnosed earlier, when the cancer is very manageable, and so that research can be funded, to cure this family of cancers.

Please help, if you can, all it takes is a few minutes on the website. It may not seem like much, 45 hours of professional help, but, it IS. It is badly needed help to bring awareness to this rare family of cancers, so that more people are diagnosed earlier instead of later. Let the suffering end. Thank you.