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.

A Week's Worth of Happenings

Hello All,

My company arrived last Friday, celebrated my birthday with me, and flew home yesterday. So today is devoted to doing the laundry and getting everything back to normal. You all know how that is.  

  

     

         Also, I’m responding—by phone and e-mail—to all the birthday greetings I received. Then there’s the catching up with six day’s worth of e-mails and the postal mail that came—junk, bills, catalogs—during that time. I’m sure you all know how that is also.

         Here’s another piece of news that many of you—maybe all of you—will appreciate and understand because you, too, have received good news at a doctor’s office. Last Thursday I saw the dermatologist who prescribed the light treatments for my CTCL and is monitoring their effectiveness. She carefully examined my arms, legs, and chest on which, six weeks ago, were displayed many large pink blotches.

         “Everything on your left leg is in remission,” she announced. Then she looked at my chest. “Same thing here.” Only a single blotch on my left arm, a swath on my right arm, and quite a bit of my right leg—from the knee to the ankle—remain stubborn. But all were changing color, which is a sign they are going into remission.

         She agreed that two days a week instead of three were sufficient and concluded, “Dee, if your skin continues to respond this way, I think you’ll be able to stop coming after the next six weeks.”

         Hurrah and Hallelujah!

         Another piece of news today concerns your comments for last week’s posting. I haven’t had time to respond to them, but I will return to responding with this posting and from here on out. I enjoy responding to your comments, which always make me consider new aspects about what I’ve written.

A panoramic view of the Delphi valley in mainland Greece.

         Also, I wanted you all to know that I’ve decided to work this year on a novel that takes place in Bronze Age Greece around 1300 BCE. Last year I wrote 62,000 words of a first draft that is not yet completed. I’m hoping that the first book of this proposed trilogy will be about 70,000 words after it goes through several more drafts and a final polishing. I hope to have the manuscript in good shape by the end of the year. But I will listen to my body. Go with the flow. Live day by day. So nothing here is written in stone.

         Finally, I’m wondering if you have any preferences for what part of my life you’d like to know more about. As I summarized last week,

1.    “Of the years between birth and entering the convent after college graduation, I’ve reconnoitered only my childhood up to sixth grade at St. Mary’s Grade School in Independence, Missouri.”

2.    “I’ve shared with you the convent novitiate years as well as my first two years on mission in Omaha, Nebraska, after making first vows. But there are other stories yet to tell about teaching in Seneca, Baileyville, Atchison, and Kansas City, Kansas.”

3.    “Back in 2012, I spent several months posting about getting involved in social justice issues when I was in my thirties. That leaves four decades yet to explore of my life as a single woman who established a career after leaving the convent and then retired to write and enjoy friendship.”

I’d appreciate your commenting and letting me know any preference you might have among these three time periods.

I want to end by thanking all of you for your good wishes last week when I posted about the CTCL appointment. On my birthday I found myself deeply thankful for your continuing and continual support. Peace.

All photographs from Wikipedia.

Today's CTCL Appointment

This morning, I’ve sat in my red-upholstered chair here in front of the computer and thought and thought and thought some more about what aspect of my life to write about today. This on-line memoir offers three possibilities: growing-up, convent, and post-convent.                  

         Of the years between birth and entering the convent after college graduation, I’ve reconnoitered only my childhood up to sixth grade at St. Mary’s Grade School in Independence, Missouri.

         I’ve shared with you the convent novitiate years as well as my first two years on mission in Omaha, Nebraska, after making first vows. But there are other stories yet to tell about teaching in Seneca, Baileyville, Atchison, and Kansas City, Kansas.

         Back in 2012, I spent several months posting about getting involved in social justice issues when I was in my thirties. That leaves four decades yet to explore of my life as a single woman who established a career after leaving the convent and then retired to write and enjoy friendship.

         And yet, I find myself simply thoughtless today—lacking any stories to tell. So I will simply reflect on this day here in Independence where the sky is overcast and the day chilly. It’s gray, threatening drizzle.

         Back on Thursday March 6, I posted about the CTCL—cutaneous T-cell lymphoma—that has cropped up again. I have an appointment today with the dermatologist who diagnosed CTCL and who prescribed the light treatments I’ve been doing for the past five and a half weeks. Yesterday I went to the clinic for my sixteenth treatment. Today the dermatologist will assess how my skin is responding to treatment and where I am in the remission cycle.

         When the cancer goes into remission, the skin color changes. For me, it goes from pale pink to a blushing pink then to a dull gray and finally to a darker gray that is a sign of remission. I can already see that several of the blotches are beginning to change color. So that is an excellent sign.

         Because my skin has twice burnt with these recent treatments, I am up to only two and a half minutes a session. Back in 2011, when I went for treatment three times a week for nine months, I kept burning and so never got up to more than four minutes a session. So these sessions are never long. However, I find myself tired afterward. Recently I asked the nurse if other patients got tired, and she replied, “No one’s ever said so.”

         So perhaps this tiredness is of spirit. Or it’s because I do an errand or two after the treatment. Or it truly is that I’m aging and I just don’t have the resilience and energy I used to have. Whatever the cause, I’ve decided that going three times a week is too arduous for me.

         So I’m going to reduce the treatments to twice a week. I suspect the dermatologist will simply remind me that fewer sessions a week mean more weeks of treatment than in the past. But right now I’d prefer to enjoy each week, despite having to go for a longer period of time.

         Also today I’m going to cancel my appointments for tomorrow (Friday), next Monday, and next Wednesday because two friends are coming to visit for several days, starting tomorrow.

         I’m looking forward to taking time off and being with friends. Winter here refuses to admit Spring. I’m hoping that my friends and I will experience together the arrival of its balmy days. Peace. 

       

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.