Thursday, March 6, 2014

CTCL Encourages Going with the Flow


Two weeks ago I posted my plan for all that I would do this year. In last week’s posting, I admitted throwing in the towel on that plan, deciding “to go with the flow” of my life, and letting go of trying to control life’s dailiness.


         I gave two reasons for going with the flow: Meniere’s Disease and Cutaneous T-Cell Lymphoma (CTCL). Last week I wrote about the first; this week I want to explain and explore the ramifications of the second.
         About fifteen years ago, I discovered a pink patch on my arm. A second patch appeared before I saw Dr. Hamilton, my family physician, for my yearly checkup. Noticing it, he said it was psoriasis and prescribed a cream. When it failed to change the patches, I simply forgot about the whole thing.         
         Until Meniere’s arrived in 2006, I seldom paid attention to my body and didn’t even know how to listen to it or what to listen for. And so I mostly ignored what others might call symptoms—aches, pains, patches, rashes, and so on.
         Years passed and in 2011, the patches began to spread—from my arms to my thighs to my lower legs. By now, Meniere’s had made me aware that my body could tell me things. So I made an appointment with a dermatologist. She did two biopsies that indicated I had stage one CTCL.
         She explained that stage three attacked all the inner organs and was fatal. To avoid that, she prescribed a corticosteroid cream and ultraviolent light therapy (phototherapy).


         Beginning in April 2011, I did light therapy for three times a week for nine months. By January 2012, the CTCL was in remission. It stayed in remission nine months. I did more light therapy and it went back into remission and stayed away until January 2014.
         When it reappeared I made an appointment at the clinic. In mid-February the doctor confirmed that the cancer was back and that I needed to begin the phototherapy again.
         So now I am once again using the steroidal cream and having light treatments. Thus far, I have had seven sessions. This will continue until March 27 when I’ll see the doctor again so as to determine if the phototherapy and the cream are working.
         There is a risk that the ultraviolent light will cause other skin cancers, so doing the therapy for nine-months back in 2011 was iffy. This time, we’re hoping that the cancer goes more quickly into remission.
         The wonderful upside of this is that the doctor has told me that no one she’s treated for stage one has ever gone to stage three. So the fact that I’m undergoing treatment is crucial. Also with CTCL, I will most likely keep going in and out of remission for the rest of my life.




         None of this alarms me. If I keep being aware of when pink patches show up and immediately go for treatment, all shall be well.  
         The light treatment is done in an upright cylinder in which there are about forty tall, skinny, vertical, light tubes. I step inside; the nurse turns on the lights; and I stand there nude for a certain amount of time. Right now the time is only one minute and forty-five seconds. I’ll probably work up to three or four minutes, depending on whether my skin burns. That’s already happened once this go-round.
         Taking a shower, slathering sun block on the unaffected skin, driving to the clinic, having the treatment, and driving home takes about two hours. Since I’m out and about I always do an errand or two. So usually on Monday, Wednesday, and Friday CTCL demands three hours of my day.  
         Moreover, because the light treatments tire me out, I always come home and take a long nap. You can see why this and the Meniere’s headaches affect any schedule or routine I might try to devise.
         So now I’m truly getting up each day and doing what my spirit prompts me to do. And—wonder of wonders—I’m feeling content doing that.
         Peace from “Flow Girl.”        
        
Photographs from Wikipedia.

54 comments:

  1. Replies
    1. Dear Fishducky, and to you also. Peace.

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  2. Dear Dee, Not too long ago, when you heard the word cancer, the prognosis was seldom good. However, today it is about "living with cancer". I have three loved ones with different forms of lymphoma and after treatment, are doing well. It is so important to listen to your body and get "odd" things checked out. Finding your disease when it was Stage 1 was a blessing. I hope your treatments are minimal this time and keeping my fingers crossed that remission will come quickly.

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    1. Dear Arleen, yes, that's it--many of us are "living with cancer" and treating it so that all is well. Thanks for keeping those fingers crossed. I sing a little song on my way to the treatments and while in the "tube" I also sing my song about healthy skin. That song helps me keep everything in perspective. Peace.

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  3. Here's hoping the light therapy will put you right back into remission. In our neck of the woods, people go to light therapy to treat their depression because the weather is so gloomy and grey for months on end. I wonder if the light therapy has any effect on your mood as well as your skin...

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    1. Dear Kari, I'm not aware that the light therapy affects my moods. It may, but as I said, I not always totally in touch with my body and my moods. I'll start noticing that now that you've mentioned it. I do notice the tiredness though. Peace.

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  4. Thank God for stage one and remissions. I'm glad you're going with the flow. I have always tended to be rigid about routines and schedules. I am in remission from rigid now that I don't have an angry man looking over my shoulder all the time. Willy Dunne Wooters is so relaxed. It helps me a lot.

    Love,
    Janie

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    1. Dear Janie, I've always been a person who made schedules. I've never ever, ever, ever stuck to one for any given day but they help me feel that I can accomplish things and that all is possible. Peace.

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  5. Sounds like a "Beam me up, Scotty," contraption, sans garments. It sounds like a comfortable routine for the new year. You are easy with it, and it will go easy for you.

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    1. Dear Joanne, I so enjoy your image of the "Beam me up, Scotty" contraption. I've never thought of that upon entering the cylinder and standing there but now I'll think of that each time!!!! Thanks so much for adding this pleasure to the treatments. Peace.

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  6. Bless your heart, Dee. I had never heard of either of these diseases/health problems. So sorry that you have had to suffer so much with both. But--the good news is that there are so many things which can be done to keep people alive these days, even from that dreaded cancer. May God be with you --and I hope you feel much better soon.

    You are correct on not trying to do too much especially when you are dealing with your health problems. You will have many more opportunities to do the things you want to do. Right now--it's just one day at a time. Take care of YOU First.

    Hugs and Prayers,
    Betsy

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    1. Dear Betsy, yes, the good thing is, as Arleen says in her comment toward the top of these comments, that we now "live with cancer."
      Such a difference from years ago. And yes, I am taking good care of me. Exquisite care actually!!!! Peace.

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  7. Yay for Flow Girl. Nap well, and continue to take care. Hugs.

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    1. Dear EC, if the Olympics had a contest for napping and sleeping, I'd be a real contender--maybe even a gold-medal winner. Peace.

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  8. O Dee, I am so sorry that you have yet another problem to contend with.
    But I am also glad that you don’t let it break your spirit.
    Going with the flow is the very best way to handle life at all times, provided ‘flow’ doesn’t mean you drift. But you’d never do that.

    My very best wishes for a speedy and long-lasting patch of remission.

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    1. Dear Friko, yes, that drifting part is what concerns me. I have been both flowing and drifting since the new year began but slowly I am returning to getting something more done each day than simply napping and going to therapy. When I drift, I do no writing. Yesterday I wrote for three hours and my spirit soared. So whenever I do feel the urge to write, I hope that I'll "drift" to the computer and find words. To search for and find the words that show readers a person or place or thing or feeling or event is a joy. Peace.

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  9. You sound like you have the right attitude to cope with these illnesses and see them as a nuisance to be sorted. Wishing you good health.

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    1. Dear Annie, thank you for the good wishes. I am feeling very healthy right now. "Fine and dandy, like sugar candy" as my mom used to say. Peace.

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  10. Replies
    1. Dear Juli, thank you so much for the hugs. Living alone, I don't get many hugs and so appreciate those that come my way. Peace.

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  11. good that you know what to do and attack it as soon as it comes, and hopefully will forever keep it at bay

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    1. Dear Pat, learning to be aware makes such a difference when we want to keep things "at bay." The wonder of life is that the longer I live the more I discover about others and myself and the abundance of goodness all around me. So I find myself being grateful for so much and one of the things I'm most grateful for is that I've found doctors and therapies that help me. Peace.

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  12. You seem to have a good physician to help you through this, Dee. And I'm so glad you are going with the flow rather than trying to push the river. :-)

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    1. Dear DJan, I'm blessed in Amber, the dermatologist. Thank you for the image you gave me: going with the flow rather than standing in the stream and trying to push back the river. That image speaks to me and I'll hold onto it. Peace.

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  13. I love your attitude. Keeping a positive attitude is the best assist any medicine can get. I will keep you on my prayer list. (I am having to head out of town again in the next day or two to get things squared away with my father in law's arrangements, but I do hope we can talk early next week)

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    1. Dear Shelly, thank you for keeping me on your prayer list. The Oneness that connects all of us blesses all of us also. Peace.

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  14. A positive attitude and due diligence is so necessary when dealing with some cancers. I have one of those also (bladder) that can be nicely controlled as long as you stay on top of it. So glad you have such a great doctor and that you are committed to staying on course. Hoping you get the all clear soon. Take good care sweet lady.

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    1. Dear Arkansas Patti, so we are in this together--you with bladder, me with skin. Let's keep hoping for one another that we will live long and happy lives with our illness and learn something good from them. Peace.

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  15. Amen to that, Flow Girl. I have to learn how to be better at this myself. Seriously though, all the best with these two diseases that keep getting you down while you are learning from them. Life is interesting, isn't it?

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    1. Dear Inger, you do such a fine job of living with your diabetes that you are a model to me. And yes, life is endlessly fascinating. Today I'm staying in bed--still in my floor-length, burgundy robe--simply being at peace. What a wonderful like I have. So much for which to be grateful--your friendship is surely one of the gifts of the past few years that I am thankful for. Peace.

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  16. Dear Flow Girl,
    Sorry to hear about the CTCL, along with the Meniere's, but, glad to hear that you are proactive in both recognition and treatment. I know how fatigue can play into treatment. Good for you for listening to your body and resting when you need to.
    Last winter, I needed a series of treatment with a chemo creme for a precancerous condition on my face. If it is all I ever have to endure, I will consider myself lucky, but, I did feel fatigue and it give me a certain, shall I say, glow. I say all this not for sympathy, Dee, just to let you know that I think I understand and I admire your positive attitude.
    Rest well. Penny

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    1. Me, again, Dee. I hope you don't mind that I've written a little post about "One Cat's Life ... ".I hope it sends some new visitors your way and leads them to your inspirational books about Dulcy.

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    2. Dear Penny, thank you so much for reading Dulcy's first book and then for writing such a lovely review on your blog. I'm relieved to learn that your precancerous condition must be better. At least I hope so. The fatigue is really a factor isn't it in trying to remain positive. If I don't nap and get the rest I need I find that I become a grouch thinker. Please take care of yourself. Peace.

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  17. I'm so glad you are being treated and that it seems unlikely to progress. I'm sorry that you have to go through this - I'm sure it is tiring. I guess such things do make us adjust our outlook on life and living. Going with the flow has such a beautiful and easy sound to it, yet for some reason it is not something that comes easily to most! But when we do, when we can, things do fall into their rightful place so much easier than when we are trying to do the placing. I'm continuously amazed by how much more there is to learn. Love and Peace Melissa

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    1. Dear Melissa, like you, I'm amazed at how much there is to learn about love and peace and relationship and the embracing of life. It seems to me that in the past few years, you've done a lot of adjusting to new things: having books published and marketing them, touring the East Coast and some of Canada with your husband in the RV you've now sold, finding a new place to live, finding somewhere to teach and practice your yoga, and so many other things. That is, I believe, what keeps you young at heart. Peace.

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  18. Dee
    I am truly sorry that you have this inconvenience in your life. I'm finding body parts don't last as long as we would like them to. It's not that i'm afraid of dying (which I surely will) but I just don't want to be a burden
    to my children. This must be the cancer you were telling me about.. I admit to knowing nothing about it but I will do some reading on it.

    That is a lot of driving for you too and I imagine that zaps a lot of your energy. I wish you so very much strength for seeing this through again.
    Love and peace

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    1. Dear Manzanita, thank you for your concern and your wishes for me. I'm taking such good care of myself: resting when I'm tired and going down into the deep center of myself where peace and well-being dwell. Both you and I know that as we age our bodies need more rest. They've been such good friends to us all these years and now they are asking for our care. And so I'm listening and trying to do the best by this body. Peace.

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  19. Yay, Flow Girl!! One must deal with whatever comes your way in life the very best and most positive way possible. You are, obviously, doing that and being kind to yourself. Hurray!

    My dad has a recurring skin cancer that has to be cut off...for years...decades! He's lost count of how many hunks they have scraped off his head, arms, and torso. The doctor said it was probably caused from his years in the Navy when he was in Asia running around on the ship without a shirt but in long pants (as they all did) because he hasn't had any skin cancer from the waist down. He's 93 and counting--so hang in there, my friend! :)

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    1. Dear Rita, if there is anyone who has shown me what going with the flow is--it's you! Thank you. Peace.

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  20. Just came across your blog today and it sounds like you have a lot on your plate... but I think your attitude of "going with the flow" is a good one. I think that replacing fear with love, and concentrating on the joys of life... as well as listening to your body is the smart way to go.

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    1. Dear Rian, thanks so much for stopping by. I truly have learned in the past eight years how to listen better to my body. It's asking me to care for it after all these years that it's given me it's best. Peace.

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  21. "going with the flow" is something similar to what I tell everyone "take one day at a time"

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    1. Dear Haddock, yes, your version and mine say the same thing. But I do like thinking of one day at a time, because that seems to me to be more Buddhist. More living in the moment. So thank you so much for giving that sentence to me. Peace.

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  22. It is good that you are seeing your dermatologist regularly and taking good care of your health – with regular follow-ups you will be able to contain these health problems. My husband had bladder cancer in late 2012 and went to follow-up visits regularly and several weeks ago they found another tiny cancerous tumor which will be taken care off this week in hospital – I know he will be OK too. People may wish for the good old days, but I am pleased that medicine has made so much progress. Take care and enjoy spring.

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    1. Dear Vagabonde, I'm sorry to learn about your husband's new tumor and I so hope that the hospital stay will be absolutely successful--now and in the long run. Like you, I'm so happy that there are treatments and medications that can help me live a longer life.

      Yesterday was a delightful spring day and I walked and walked. But today the cats and I woke to a dusting of snow and a wind chill that invaded my bones! So no walking outside today. I have hopes for tomorrow's weather. Peace.

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  23. This is a new form of skin cancer to me, Dee, and I'm sorry you have it to cope with as well as the Meniere's. However, we are so fortunate to live in our time, when medicine can do such wonderful things to contain and often cure malignant disease like this. As someone who has had breast cancer twice, I give thanks very often for the skill of modern medicine.

    Wishing you every success from your current treatment. Keep going with the flow....

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    1. Dear Perpetua, like you, I am grateaful for modern medicine and also for my health, which, except for Meniere's and CTCL, is so good. The cancer doesn't alarm me because the treatments work so well to put it in remission. I so hope that your breast cancer is in remission and stays that way. Your fortitude amazes me. Peace.

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    2. I had a mastectomy the second time, Dee, so with luck all traces of the cancer were removed. I'm certainly very well at the moment.

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    3. Dear Perpetua, I'm so glad to learn this. Today is chilly here. That wet cold that enters the bones. But I have such a feeling of well-being today. I hope you, too, are feeling refreshed as you've now recovered from your recent health problem and can now practice the clarinet! Peace.

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  24. you are a strong woman. Your courage is inspiring. I am glad that tanning is helping the CTCL

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    1. Dear Mimi, yes, the light treatments really do work. Peace.

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  25. the little word c with so much impact. my dh is the one it chose but he is like you, difficult to think of the word sick. But I tell him .... somedays you are the Statue and some days the Pigeon. Just go with the flow and he is learning to listen and read his body.
    Best wishes and hugs from downunder and may there be lots of statues.")
    btw found you from Molly's blog.

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    1. Dear Aubird, thanks so much for stopping by to read my posting. I bet you enjoy Molly's blog as much as I do. It's taken me many years to learn to go with the flow. But finally, I think, I've got it--as Professor Higgins would say! Peace.

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  26. Dear Dee,

    I'm not sure how I missed this. Prayers that you are back in remission by the time you read this. We certainly can try and control everything, but that's so no within our scope. I just try and enjoy every day and move forward. Sometimes I move to the side and sometimes, a little backwards, but I just try and enjoy the journey. I know I'm blessed to have the opportunity to be on the journey and meet the people I keep meeting. Hugs!

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