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This is a new treatment which deserves further study.
http://www.skincaretreated.com/photodermatology-photoimmunology-and-photomedicine/the-use-of-synchrotron-infrared-microspectroscopy-in-the-assessment-of-cutaneous-t-cell-lymphoma-vs-pityriasis-lichenoides-chronica.html
http://www.nature.com/jid/journal/v130/n4/full/jid2009306a.html
Tuesday, March 16, 2010
Friday, March 5, 2010
The First Thing...
After reviewing the first entry on more than one occasion and reneging on my commitment to continue with this project, I decided I needed to change the title of this journal.
"The Itchy Truth" is so much better than the first thing I came up with and I think it conveys what we all experience, wish to avoid, but in the end have to face. Truth in this case is painful, but when you have CTCL it itches like hell! And it hurts, too.
I'm excited to announce that I have made a commitment today to walk (or rather stroll) in a 5K Lymphomathon in my city to help raise funds for Lymphoma research. I am very excited about it and hope to get a few team members to help me. I posted a a sign up sheet near the time clock at work today and it seemed to make some people nervous. That seems to me to be a good place to start a discussion about what happens when you receive the diagnosis of an incurable, potentially fatal disease.
It has taken me two years to even begin to think about "cancer". Lymphoma is a blood-borne cancer which has very scary connotations. On the positive side side, vampires avoid me so I have been able to put away the talismans, and cook with garlic rather than hang it around my house. I tend to be stubborn and so when I was told I have non-Hodgkins Lymphoma I really clung to that and still do on some level. It sounds so much safer than "cancer". But I'm slowly coming to the realization that I must look this beast in the eyes. I see now that this is a common response to the diagnosis that everyone experiences.
When I learned in February 2007 that the most recent biopsy of a tumor on my right cheek revealed Cutaneous T-Cell Lymphoma (CTCL) and that I needed to get to M.D. Anderson Cancer Center (MDA) ASAP I went into a tunnel which has been very long and dark. I am fortunate to work in a retail business establishment where I feel comfortable with my co-workers and where we share a common mission. Additionally, the department where I work is truly exceptional and staffed with a wonderful group of people. Our customers are delightful, for the most part. Of course, we have the occasional PITA, but that's everywhere. I spent an entire year working in an environment selling luxury goods and very high end merchandise to people while wearing a bandage on nearly the entire side of my face. I pretended it wasn't there and carried on business as usual. Eventually a customer would ask me what happened. Initially, I could tell some of them were thinking I'd had some plastic surgery and was even asked directly on more than one occasion whether I'd "just had a little work done". Out of the many people who either worked up the courage to ask what had happened or who could not resist their own curiosity--- only two of them were hurtful and insensitive. I found this truly comforting. Even the hurtful and insensitive comments I understood were coming from a place of discomfort for the inquisitor and so I was able to disregard their effect on me, in public at least. It made me very uncomfortable to be asked about my appearance and I decided right way when the questions began coming to answer truthfully and to remain as distant from my own fears as possible while responding. I could have been vague or perhaps even a little flippant. I could have been incensed or insulted. I could have responded with indignity or discomfort. I made a conscious decision to calmly and graciously acknowledge each question or observation coming from persons with whom my connections were entirely professional. That was/is at times difficult. In my department, with my closest associates, I've always been on the receiving end of the greatest concern and understanding. And, of course "out in the rest of the store" every one has been respectful and thoughtful. However, I could sense today that perhaps my direct invitation to join me in the Lymphomathon has resurrected the feeling of discomfort my condition created for those people who care about me and all other persons afflicted with mysterious, scary, incurable diseases. My ramblings here are an effort to help guide us all through the difficult task of confronting and coping with illness.
Peace and blessings,
Until next time.
"The Itchy Truth" is so much better than the first thing I came up with and I think it conveys what we all experience, wish to avoid, but in the end have to face. Truth in this case is painful, but when you have CTCL it itches like hell! And it hurts, too.
I'm excited to announce that I have made a commitment today to walk (or rather stroll) in a 5K Lymphomathon in my city to help raise funds for Lymphoma research. I am very excited about it and hope to get a few team members to help me. I posted a a sign up sheet near the time clock at work today and it seemed to make some people nervous. That seems to me to be a good place to start a discussion about what happens when you receive the diagnosis of an incurable, potentially fatal disease.
It has taken me two years to even begin to think about "cancer". Lymphoma is a blood-borne cancer which has very scary connotations. On the positive side side, vampires avoid me so I have been able to put away the talismans, and cook with garlic rather than hang it around my house. I tend to be stubborn and so when I was told I have non-Hodgkins Lymphoma I really clung to that and still do on some level. It sounds so much safer than "cancer". But I'm slowly coming to the realization that I must look this beast in the eyes. I see now that this is a common response to the diagnosis that everyone experiences.
When I learned in February 2007 that the most recent biopsy of a tumor on my right cheek revealed Cutaneous T-Cell Lymphoma (CTCL) and that I needed to get to M.D. Anderson Cancer Center (MDA) ASAP I went into a tunnel which has been very long and dark. I am fortunate to work in a retail business establishment where I feel comfortable with my co-workers and where we share a common mission. Additionally, the department where I work is truly exceptional and staffed with a wonderful group of people. Our customers are delightful, for the most part. Of course, we have the occasional PITA, but that's everywhere. I spent an entire year working in an environment selling luxury goods and very high end merchandise to people while wearing a bandage on nearly the entire side of my face. I pretended it wasn't there and carried on business as usual. Eventually a customer would ask me what happened. Initially, I could tell some of them were thinking I'd had some plastic surgery and was even asked directly on more than one occasion whether I'd "just had a little work done". Out of the many people who either worked up the courage to ask what had happened or who could not resist their own curiosity--- only two of them were hurtful and insensitive. I found this truly comforting. Even the hurtful and insensitive comments I understood were coming from a place of discomfort for the inquisitor and so I was able to disregard their effect on me, in public at least. It made me very uncomfortable to be asked about my appearance and I decided right way when the questions began coming to answer truthfully and to remain as distant from my own fears as possible while responding. I could have been vague or perhaps even a little flippant. I could have been incensed or insulted. I could have responded with indignity or discomfort. I made a conscious decision to calmly and graciously acknowledge each question or observation coming from persons with whom my connections were entirely professional. That was/is at times difficult. In my department, with my closest associates, I've always been on the receiving end of the greatest concern and understanding. And, of course "out in the rest of the store" every one has been respectful and thoughtful. However, I could sense today that perhaps my direct invitation to join me in the Lymphomathon has resurrected the feeling of discomfort my condition created for those people who care about me and all other persons afflicted with mysterious, scary, incurable diseases. My ramblings here are an effort to help guide us all through the difficult task of confronting and coping with illness.
Peace and blessings,
Until next time.
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