Monday, January 24, 2011

Help Rebecca and her Daughter...please

I met Rebecca through other FB friends. This is her story. She is "living" from cancer. She is an amazing woman.

She lives in New Jersey..not too far from Philadelphia. She needs help. She knows that her daughter, who is now 21, will be left alone in a house that needs lots of work. It was formerly a large chicken coop. Her daughter has been by her side all the way! I've written to The Nate Berkus show...he needs to go help her fix her place up. She especially needs a decent bathtub! Write to whatever show or person you can! Do you know people in New Jersey? Know anyone who needs to donate some money? It cannot be TO she'll lose her only means to pay for her cancer treatment. It could go to her adult daughter though!

If you have any ideas at all...speak up please. She is going through Chemo and Radiation now..and she had to beg for that treatment...they were going to give up on her! She has no idea I am doing this...and she might not like it. We'll see.

Read on, from a post at her blog..Cape Coop and scroll down.

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.

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.

So, Rebecca and her daughter will see all posts. I will ask Rebecca or Elissa if I can pass on their phone number, etc. can always link this blog post and I can share the info. Thanks again..for any and all input/suggestions. Know anyone who works at a home improvement store??? :)


TaraDharma said...

you have a loving heart, dear M. I went to her blog and wowie, her determination to stay on this earth is immense. Not sure I could deal with the pain....

I'm thinking that it's too bad that Oprah has not landed on her door-step with all the resources she needs. Enough Australia trips and pink diamonds, help this gal out!

Mel said...

You can write to Oprah..the info is on the newest post. it. :) It would be a great story...and so deserved.