A New Normal

Site Updates: I published my first two reviews on the Review page.  I cover The Last Lecture, our first Book Club selection in addition to the movie Wit starring Emma Thompson and directed by Mike Nichols.  Tish and I watched it last night and were awed.  It is a powerful movie, perhaps the best movie about cancer ever made.  And its portrayal of nursing is realistic and compelling.

Hoping to make it a more useful resource, I also revised the Book List page by adding short descriptions as well as Amazon links in case you wish to buy a copy.  As always I welcome suggestions from readers.  At least three of the books are from authors who communicated directly with this blog.

Speaking of authors communicating with the blog, Evan Handler, author of this month’s Book Club selection, Time on Fire, sent me the following unsolicited comment on his book.  “Thank you for choosing “Time on Fire” as one of your reading options. I’m extremely gratified that the book continues to inform, sometimes to baffle, and hopefully to help those trying to understand the mindset of an extended survival ordeal. I hope you find the experience worthwhile. As a side note, it’s always amusing to me when readers/reviewers speculate (as Dennis has above, and many have before) that aspects of the story have been exaggerated for comedic or dramatic effect. My very clear memory of my months writing the story is of a continual process of toning the story down, of diluting the intensity of the experience. As much as it pained me to render a gentler portrait than the reality I experienced, my repeated thought at the time was, ‘People would never be willing to read a book that tells it like it really is.’ I suspect there was (and might still be) some truth to my suspicion.
In any case, many thanks again for keeping the book alive.”

IMG_0745Journal: March 2002 – This is a middle period.  It is difficult to understand.   I feel much better physically and emotionally, but perhaps not dramatically so.  Treatment days are much easier to tolerate, and yet I feel spacey and unproductive the rest of the day.  I rarely feel frankly sick but neither do I feel well.  I chill easily, tire easily, and become short of breath.  My hands seem to be cold often.  I still dread bedtime much of the time.  There is nothing to distract me, I am too tired to do anything, I am more aware that I still have leukemia.  Even though I do not obsess on my condition, even though I do not think that I am clinically depressed, I still feel restless and uncertain.  I frequently find it hard to sleep.  I sit in the recliner in the bedroom for hours.  Many times I do not want to take a sleeping pill.  I feel that I take too many medicines. Even when I fall asleep more easily, even when I dream those sweet dreams, the moment I awake my thoughts return to some aspect of my illness.  Indeed my life has lightened and brightened over the past few weeks.  But I carry that dark heaviness with me still.  It is always somewhere there in the background or on the periphery.
I need to learn to deal with this sense of uncertainty.  Will I achieve remission?
What then?  Is stem cell transplant as answer?  How much will that process affect the quality of my life?  Will I make it to the UICC Congress in Oslo this summer?  I am responsible for the Nursing Programme.  Will I return to work?  I may well learn to deal with this better after my transplant consultation.  But, oh, I know that the uncertainly will continue on in some measure.  I will never know with any certainty when or if this disease of mine might rear its terrifying head.  But right now I am able to see beyond seven months at least.  Right now I am looking out towards fifty-four months.  In the studies that I have read that is the longest that a person, a person involved in studies, has survived this disease, even with CamPath.  And right now, from where I stand, fifty-four months seems a long time.  How quickly we humans adapt to circumstance!  To wish for more seems almost greedy.  One some days that fifty-four months seems time enough. Time enough to dream some more, to make a few dreams come true.  Time enough to labor some more, to make a difference in this world.  Time enough to infuse my life with substance and richness.

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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