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. 

       

Review of "Chasing the Strawberry Moon: Hitchhiking (for girls)

Last July, an Arizona author—Judy A. Grout—contacted me to inquire if I’d work with her as she polished her young adult manuscript entitled Chasing the Strawberry Moon: Hitchhiking (for girls). Judy had gotten my name from a mutual friend in Minnesota.       

                                                                                                                                In our telephone conversation, she explained that a few months before she’d met an agent at a writer’s conference. After they’d discussed the novel’s plot and background, the agent asked to read the manuscript. A few weeks later, she sent Judy a full-page list of suggestions for how to improve the manuscript and make it more publishable. She expressed interest in seeing the manuscript again once Judy had worked on it.                                                                                                             Intrigued by the title of the novel and by Judy’s willingness to  continue polishing a manuscript on which she’d already spent so much time, I agreed to work with her. For a week, I read and made suggestions about plot development, sustaining suspense, creating tension, and showing character instead of just describing or telling about it—all of which were concerns of the agent.                                                                                                                    In September, Judy sent me a new manuscript in which she had incorporated her response to my suggestions. For two weeks we worked to polish that second manuscript, which had improved greatly. We both thought that she now had a manuscript that worked. She planned to do more with dialogue and format, but essentially she had written an entertaining and arresting young adult novel.                                                                                                                                    Judy Grout is a mature writer. By that I mean that she was faithful to her story and accepted only those suggestions of mine that worked for her and for the characters and plot she envisioned. Insecure writers slavishly accept all suggestions made by their critique readers; arrogant writers accept nothing. Judy’s attitude made working with her pleasurable.                                                                                                                          Now her young adult novel has been published. Here’s just a brief summary of its plot, which is sure to keep you reading to the end of this hitchhiking romp.  

                                                                                                                      Forced to flee Baywater, Minnesota, to avoid an arranged marriage to the local sheriff’s son, Patsy Schwartz hits the open road with her best friend, Virginia Burg. It’s 1939. Both the Great Depression and the Dust Bowl are affecting everyone’s life in the United States and war is sweeping across Europe.                                                                                                             Before she settles for marriage to someone who might be part of that war, Patsy wants some adventure . . . hopefully in Hollywood where she’s determined to become a star.     

                                                                                                                            The two girls trek across North Dakota, Montana, and Idaho, toward a café run by Virgie’s relatives in Washington. There they hope to rest from their adventures before heading south to California and the stardom that awaits them.                                                                                                            On their journey, Patsy and Virgie encounter a cast of characters whose foibles and antics will both delight and dismay you. As the two young women thumb their way across the country, they ride with truckers; work for ranchers; meet Communists, preachers, and artists for the WPA; encounter women motorcyclists; and get treated to a meal by the Civilian Conservation Corpsmen.         

                                                                                                                           And always, nipping at their heels, are the sheriff’s son and the Chicago hoods who have plans for Baywater, Minnesota, and that son.                                                                                                       While this novel will be of great interest to young women, I found it equally interesting as well as humorous  because the story helped me imagine my mom and her own dreams and adventures when she was young. The novel does, I think, accurately portray youth when we believe that all is possible.                                                                                                If you’d like to learn more about the plot and the background that led to Judy writing a fictionalized account of a true story, please go to the book’s page on Amazon. Or visit Judy’s writer's page, which features a short video of many of the scenes that Patsy and Virgie saw on their hitchhiking adventure.                                                                                                                     

P S: I apologize for the haphazard formatting of this posting. For some unknown reason, I just cannot get everything to line up as it normally does. 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.