“The Light Within” – week 3 discussion

lightwithinLast weekend I had fallen behind in my reading and wasn’t able to post discussion questions. I received feedback that readers preferred the questions. So I will try to do better in the future. I will now post questions for this week’s reading. Questions for next week will follow today’s critique.
~ How did you identify with Deb’s observations about nausea?  What role did “Hope” play in your own treatment and recovery?  In people with cancer that you have known, did attitude seem to mke a difference in how they were coping?  What role did spirituality play during your illness?  What about Deb’s concept of control, especially in how she would deal with her last days?  What did you think of Deb’s hints at eventually taking her own life?

By now we are more familiar with the main characters in this account, their personalities, proclivities, professional lives.  And yet we see, with some satisfaction, that each is still growing.  Deb is constantly adapting to new challenges of her waning, then surging symptoms.  Dr. Lois continues to learn about herself, her relationships, and how she wants to evolve as a healer.

One thing that struck me was Deb’s simple description of the experience of nausea.  Many of us can relate to this.  “Nausea is centered in the tummy, but it changes the way you see and the way you walk, if you are walking at all.” Dr. Lois discovers the importance of hope for her patients.  “Hope makes it possible to undergo the pain of surgery and the side effects of chemotherapy.  Hope makes a believer of both the patient and the doctor, makes them think that this is the rare patient that will survive.”

One of the questions I posted for this week was if any of you have perceived that the attitude of the patient made a difference.  I mean a difference if how effectively one copes with cancer and its treatment.  To talk about differences in outcomes is very slippery slope in which one becomes responsible for one’s outcomes. Most of the time and in most respects the cancer’s outcome is beyond our control.  But Dr. Lois notes, admittedly with scientific evidence, that “the patients who can still laugh out loud seem to fare better than those who lose their joie de vivre.”

Dr. Lois gives an excellent account of the particular horror of ovarian cancer treatment, especially recurrent disease.   “The administration of toxins is now going to be a lifelong process.” The oncologists has an array of “second-choice” drugs in her bag but has no way of determining which, if any, of these is going to be effective slowing the progress of the disease.  This is not treatment for three weeks then off three weeks for a given number of cycles.  This is constant and continual therapy.

Quality of life becomes the constant, moving target in the tension between the costs and benefits of treatment.  This is so much the case that Deb begins to hint at suicide, suggesting that she plans to keep “a stash of drugs squirreled away in the house.” The doctor senses in this at least the fear of tremendous pain and promises that pain will be managed.  In my twenty years of experience, I am happy to say that I think we were nearly always able to control the pain of end-stage patients.  As the doctor points out though “anxiety, fear, and spiritual distress…can produce tremendous physical pain.” Most oncologists recognize this and include anti-anxiety and anti-depressant agents when needed.

There is a discussion about intensity and living for the terminal patient.  “If a woman is dying at forty, she has to cram the rest of her natural life – the life that was taken from her – into the little time that’s left….It doesn’t get much more intense.” Dr. Lois notices that this intensity fosters the growth of a spiritual dimension to relationships, including doctor-patient relationships.  It is this spirituality that is the theme of this unique cancer memoir.

It is another valuable revelation Deb imparts to her doctor when she states that she intends to forgo any life-prolonging measures such as tube feeding.  “I am not going to be medicalized… I want at least some control over my body.” As her kidneys start to fail, Deb consents to having internal tubes or stents placed, an intervention that is only partly successful.  Deb becomes disoriented and confused until a second attempts achieves better results.  This is only illustrative of how difficult specific end-of-life decisions can become.  This also underscores the importance of making advanced directives as I wrote about in the previous post.

Reading Assignment: finish the book, starting with “The Interview” and ending with the two appendices.

Discussion Questions: Deb’s daughter, Abby, rather bravely interviews her mother for a sociology of death paper.  What did you think both about the courage of that process and about some of the observations that Abby makes?  Respond to the quote “I am younger for (Dr. Lois’s) friendship and with her I have plans that involve both desire and good work, the imaginary and the real.” What was your reaction to Deb’s thoughts about the probability of her husband remarrying after her death?  What are some of your reactions to the book’s treatment of Deb’s last days?

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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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“The Light Within” – week 3 discussion — 1 Comment

  1. I am so glad that the book includes photographs. As I was reading I kept looking back at the pictures. It is nice to actually see another layer of the story I was reading. Deb and Lois look like I might’ve imagined them! Anyway, I very much relate to Deb and Lois’ perspective on spirituality. The idea that when we die we transition to become part of, or a different part of, some larger whole. I like that Deb (or was it Lois?) admits she doesn’t really know for sure what God is when her daughter asks. This seems very honest and sane. Spirituality plays a similar role for me. I feel like I am part of God already, when I die, I will still be a part of God. I don’t think that that much will necessarily change, except I will no longer be playing the role of Anastasia and my awareness will no longer be confined to this little body. I am not sure exactly what is next, but I have a feeling that it will be pleasant…a release. In regard to Deb’s thoughts about how she will spend her last days. I like the idea of her playing Mozart music loudly while she is on a hammock outside. That is a very romantic/artsy vision. And Mozart’s music is beautiful. About the “squirrled away” stash of medicines. It turns out that she does not have enough, but I guess in the end, she doesn’t feel the need to end her own life. I can relate to her desire to have some control. Similar thoughts have crossed my mind. If things got bad…would there be a way for me to compassionately help my own life to end. I have actually talked about this with my mother, believe it or not. She was very understading. She assured me, similar to what Dennis wrote in the blog before this one, that hospice is very good about making near-the-end patients comfortable and not in pain. This is reassuring to know.

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