Thursday, May 15, 2014

Good News about CTCL and My Mycosis Fungoides



Today we’re going to leave Dayton, Ohio, in the spring of 1967, and spend a posting in Independence, Missouri, in the spring of 2014. The reason? I want to share some good news with you.
         Earlier this spring, I wrote three postings about CTCL. In them I gave my acquaintanceship with it. I also provided information on the form of it I have.  
         Today I’ll briefly summarize.
         In February 2011, I was diagnosed with a type of CTCL—mycosis fungoides. The dermatologist suggested that we deal with the pale pink blotches—Stage #1—on my inner arms and thighs with “light treatments.” In those three earlier postings I explained that I’d gone into remission in January 2012 after going for treatment three times a week for nine months.
         Those postings also explained that the skin cancer had returned in late 2012 and treatments had again made it inactive. Then in February of this year—2014—the CTCL became active again. For the past twelve weeks I’ve gone for light treatments: 3x a week for six weeks and then 2x a week for a second six-week period.
         This past Tuesday I saw the dermatologist, for our six-week assessment, and . . . Good News! . . .all the cancer—on chest, inner arms, inner legs—is now inactive. I don’t even need to use the steroidal cream!
         She explained that the cancer will return but it will most likely stay in Stage 1 as long as we treat it promptly. So if any pale, pink blotch appears, I am to start using the cream again. Twice a day. Two weeks on. One week off.
         If the cream doesn’t begin to turn the blotches darker and still darker—a sign that they are becoming inactive—then I will need to go to the clinic for treatment. Or, if a number of blotches appear on several areas of my body, I would immediately start light treatments.
         I’m just delighted with this news because it means that I can return, “full bore,” to my writing of a novel about Bronze-Age Greece. I will now also have time to send out queries asking agents to represent my work.
         The thing is that although I did light treatments only two or three times a week, they left me so tired that I didn’t get anything done the day of the treatment or the next.
         I now see a splendid expanse of time in front of me and I’m almost giddy with what I can do with it! I’m setting sail. Peace.



Postscript: If you’d like to know more about mycosis fungoides/CTCL and my journey with it, the three postings I’ve done are as follows: March 6, March 27, April 3. 

Both photographs from Wikipedia.

57 comments:

  1. That's wonderful news, Dee! It was also nice to open up your page to those lovely spring flowers. Set a nice tone! I'm back to just writing on my old blog. The new one just didn't feel like "Me".

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    1. Dear Stephanie, thanks for dropping by and also for letting me know that you're back on your "old blog." I'll find you there! Peace.

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  2. Wonderful news Dee. I'll bet you are so relieved. I too have a form of cancer (bladder cancer) that loves to return but can be managed successfully with strict attention. You keep up your end, I'll keep up mine and we will both be fine. . Take good care.

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    1. Dear Arkansas Patti, yes, let's both keep up the part we can play in keeping our ailments from spreading. You, too, take good care. Peace.

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  3. I'm rejoicing with you! That is the grandest of news. Also grand is that you're moving full force into your Bronze Age novel. Both pieces of news are day brighteners!

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    1. Dear Shelly, I've written 62,000 words of a first draft for the novel. But before I can go any further, I need to do some research. So that's what I'll be doing in the next week or so. I'm glad I brightened your day! Your postcard did that for me. Peace.

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  4. I was holding my breath until I read the whole posting. You and your doctors must be managing and working very hard. God Bless you and may you gain strength. Amen.

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    1. Dear Munir, this thing about gaining strength is key. I'm really worn out from the treatments and from some help I've been able to provide to a relative who's frail and ailing. I'd like to take a vacation but that's planned for July so instead, I'm just going to be gracious with myself and not "demand" that I produce a certain amount of writing each day or a certain number of words. Peace.

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  5. I am so happy for you, Dee. Looking forward to "having time" is a wonderful thing.

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    1. Dear Arleen, thank you so much for your good wishes. And yes, having time to pursue my passion for writing is a lovely gift! Peace.

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  6. Awesome news indeed, now you can just write away at your feed

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    1. Dear Pat, I'll probably never have as many books as you've written and published, but I do so hope to get a novel published before letting go of my dream. Peace.

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  7. Great news, Dee.. CONGRATS... Now---get busy and write that book.

    I am still on the mend from my surgery ---and being impatient, I cannot wait to feel like ME again.

    Hugs,
    Betsy

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    1. Dear Betsy, I hope you are taking really good care of yourself. I know what you mean about feeling like yourself. I, too, want to get back to feel energized and ready for life! Peace.

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  8. That is very good news indeed. I know very little about this type of cancer, but it is wonderful to learn it can be managed with strict attention. Thank you for sharing your journey here in your blog. I am sure it's not only me who finds it very interesting. :-)

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    1. Dear DJan, I'm glad you've found these CTCL postings interesting because I've felt a little self-centered in writing them. I hope they didn't appear "whiney." Peace.

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  9. This is unknown to me! Having a treatment and then getting positive news: worthy of happiness and joy.

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    1. Dear Susan, CTCL stands for "cutaneous T-Cell lymphoma" and there are quite a number of types. Mycosis fungoides is only one type. And yes, I am feeling happy and joyous. Peace.

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  10. I am very impressed by the information of this blog.Dermatologists in hauz khas

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    1. Dear John, I'm glad you found the blog postings on CTCL helpful. Peace.

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  11. Good to hear. Always something in life to try to hinder moving forward, but good that you're not letting things hold you back.

    Lee
    A Few Words
    An A to Z Co-host blog

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    1. Dear Arleen, I'm trying to stay focused on the writing as it's really my heart wish to get a novel published. I'm sending out query letters for two gift books and one novel and now I'm working on a second novel. I also have the first draft done of a third novel. There's lots to do before I cease to write. Peace.

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  12. Awesome! I can't wait to hear about the writing exploits! So glad you're getting to start again.

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    1. Dear Kari, yes, I'll be writing more about my my drafts and queries. It truly is wonderful to get to start again. I so hope that you pursue getting your blog essays published. I think you could be another Anna Quindlen. Peace.

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  13. All caught up again. I am doing less writing and even less blog visiting at the moment, but I’m all up to date with you again.

    I am very glad that the skin cancer has gone away for now and is leaving you to get down to your work. I also hope there will be tie to catch up on work and life after the convent and the further adventures of Dee in the big wide world.

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    1. DEar Friko, I will be writing more about the post-convent days. I just hope that my stories aren't downers! Peace.

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  14. PS: how do you carry on motivating yourself to write? I have hit a long hiatus and can’t seem to get back into writing. My excuse is that I am tremendously busy with other stuff, but that’s not really the reason. I could find time to write if I felt motivated enough.

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    1. Dear Friko, I'll get in touch with you about motivation. Peace.

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    1. Dear Jo-Anne, thank you so much. Peace.

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  16. Oh, I am so glad you got good news and can feel like your time is your own again! Congrats, Dee!! :):)

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    1. Dear Rita, that's it--I feel as if time is my own again. Peace.

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  17. Good news Dee. Looking forward to a few excerpts from Bronze Age Greece.

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    1. Dear Annie, there will be some excerpts as I continue to write. I'm at a point now where I need to do some more research on drought and famine and malnutrition and burial customs during the Bronze Age and priestesses. Peace.

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  18. Such wonderful news, Dee. I'm so happy for this reprieve, and that you're going to get to do what you heart wants. Also happy that there will be a book, by you, for all of us to read. Sending you love and light.

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    1. Dear Deb, it's so good to have a comment from you. I'm wondering if this means that school is over back in your Washington school district. I truly appreciate that you have so little time to visit blogs, much less leave comments.

      I hope, Deb, that I can find an agent to represent my writing. If that were to happen, I'd hope then for several books published. Right now I have the manuscripts for two gift books ready as well as a novel on first-century Palestine. Wish me luck and thank you for the love and light. My mind needs enlightening as I write. Peace.

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  19. A positive note to start my day here, Dee, with a pro-active plan for you as you shift gears and move forward with your book. Yea! I am hoping all continues going well for you and hope you know that your gracious postings about your Mycocsis/CTCL are not only informative, but, encouraging to others dealing with skin cancers - and that includes me! Thank you, Dee.

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    1. Dear Penny, I didn't know that you too were dealing with skin cancer. I"m sorry to learn that and I'm so hoping that yours can be dealt with as simply as mine. I so hope you are not talking about melanoma. I'll see you surrounded by healing white light from now on. Peace.

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    2. Dee, mine has been easy to handle; some basal cell ten years ago with a little cut and paste on my nose, and pre-squamous last year, which chemo cream has thus far held at bay. No melanoma, for which I am grateful, and consider myself pretty lucky so far. Thank you, Dee. Now, you keep taking care of yourself, dear friend from afar, and enjoy this time of good news.

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    3. Dear Penny, I'm finding that I need to take some time off and rest. Today I've napped and read a fine non-fiction book by Philbrick on Bunker Hill and what led up to that battle. Peace.

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  20. Woo-hoo! This is wonderful news, Dee! This is why we value good health so much: it gives us choices. I'm very glad you have so many choices again and are passionate about which to engage. Blessings!

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    1. Dear Lisa, what a surprise to come to my blog and to see a comment from you. Thanks so much. And you have put your finger on why good health is so important. It does, as you say, "give us choices." I spoke with your father today and he was so happy for me when I gave him the news about the CTCL and it now being inactive. Life is good. Peace.

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  21. That is some wonderful news, Dee. I love the thought of your giddiness!

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    1. Dear Inger, yes, I am giddy. Sort of like the wasps who get drunk on the fallen pears and crabapples in the fall! Peace.

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  22. This is fabulous news, Dee! I am so delighted for you on all fronts. So very happy to hear that you are doing so well and that the treatments aren't necessary, and of course, that you have been able to retrieve the time previously lost. This is wonderful. And good luck to you as you send queries to agents. I know the level of research you must have done to work on a book about this expansive time period, and I look forward to reading your final project. You are such a dedicated and gifted writer. ox

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    1. Dear Debra, I do so hope that one day this Bronze-Age Greece novel will be published. I've searched for an agent for twenty years now without any luck. I'm hoping that this time someone will see some value in what I've written. They need, of course, to see some commercial value and that's the thing--I'm not sure I write about what most readers are interested in. Please visualize me getting published! Peace.

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  23. It is amazing how you are able to take care of someone else while putting your own dreams on hold.
    I went back and read the other three postings. I now remember reading the last one. Your postings are very educational. People can now be on the look out for patches on their skin. I may have skipped reading some postings and this is because I have not been on the blogger that much.
    Take care of yourself. Hugs!

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    1. Dear Munir, I do hope that these postings may help others. I first noticed the blotches back in the '90s. When I pointed them out to my primary physician he thought they were eczema. As the years passed, they traveled up both arms. By they got to my thighs, I was living in Missouri and on Medicare, so I decided to skip my new primary physician and go right to a dermatologist. He said that he needed to do a biopsy. It came back as CTCL. He told me that frequently mycosis fungoides is misdiagnosed as eczema. I'm so grateful that he knew to do the biopsy. He actually had me do two and sent them to two different labs just so we could be certain. It was then that I started my first light treatments in April 2011--after his February diagnosis. Peace.

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  24. Wonderful! So glad you got the good report. Best wishes as you resume your writing.

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    1. Dear Bill, yes, a wonderful report. I'm still encouraging you to think of doing a book, working from your blog postitngs. Peace.

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  25. I've come late to this wonderful news, Dee, but I'm so glad to hear it. Enjoy your expanse of time and I wish you prolonged freedom from any recurrence of your disease to allow you wo work on your beloved novel.

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    1. Dear Perpetua, thank you for the good wishes. Right now the actual novel writing is in stall. I realized that I needed to do considerable more research on Bronze-Age/Aegean culture. I need to know more about burial customs, religion and rites, priestesses, and weaponry. So I'm reading. Reading. Reading. And taking notes. Peace.

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  26. Hi,

    I am a 37 years old man with MF diagnosis.I have to tell you that my life changed completly in the moment when I was told this diagnosis.
    After a few days of crying I started to find out the brighter side of the facts.Reading articles, opinion of persons who has similar disease an so on.I want to ask you about your condition and which was the first treatment you got at the begining!?
    Sory for my poor english.I wish you all the best!!

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  27. Hello, I'm sorry to learn that you have MF. I looked that up on Google and discovered that it's a disease of the red blood cells that affects the bone marrow. That sounds so serious to me.

    The skin cancer I have is much less serious so long as I treat it. My first treatment was a steroidal cream that I put on the skin blotches twice a day for two weeks and then took a week off and then did that again.

    I did that for two months and then began to have the light treatments that finally made the cancer inactive. The light treatments are simply what they say. I step into a upright cylinder with a door that opens so that I can step inside. The parts of my body that display the skin blotches are uncovered.

    The inner wall of the cylinder is covered with 6' long tubular light bulbs. There were about 40 of these in the treatment cylinder that I stepped into.

    Then the nurse turns on the lights for a number of second or minutes and the light is ultraviolet and can make the skin cancer become inactive after a number of treatments.

    I wonder what kind of treatment you have for your disease? Peace.

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  28. How wonderful that remission is back. I know the struggle of staying in remission. Good luck with your Greece work.

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