My Last Drug Reaction

Tempest

Tempest

Journal: February 2002 – Many nights before a treatment day I was vaguely anxious and found it difficult to sleep.  Other times it seemed as if treatment days were the ones to look forward to.  They were the ones on which we were doing something to fight my disease.  But I did not like the sedation, malaise, and lethargy.  I began to feel that treatment days were days that were being subtracted from my life.  And I reasoned that by any measure my days were not abundant.  By now the rash on my arms and legs has disappeared.
On Wednesday of the third week I announced to the clinic nurses that we were going to try something different.  Since I always have a reaction, I have nothing to lose.  We would not give Demerol as a premedication since there was little evidence to suggest that it played a role in preventing rigors.  Demerol was not listed in the CamPath protocol anyway.  We will still keep it in reserve for when I start to react.  We would also track the interval from start of infusion to start of reaction in order to see any change from with and without a Demerol premed.  This is what we call evidence-based nursing – a hot topic now.
The nurses just stared back at me, so I said “What do you think?!”  They replied that that would have to call the doctor.  My doctor was on holiday so they paged the doctor on call.  This doctor hesitated to change the protocol. When a patients declines to take a medicine, we are taught to chart and to report that the patient refused.  This wording strikes me as a bit paternalistic.  So I always chart the patient declined, which, as I see it, they have a right to do anyway.  But lest I be labeled as a non-compliant patient (the worse category of all), I sat down in my recliner though I think that I probably pouted for a while.
On the third Friday Susan, an LPN from my hospital, was my caregiver.  She had worked the twelve-hour night shift, driving to my house directly from the hospital.  She was, I later learned, a bit anxious about her responsibilities as caregiver.  I had composed a two-page instruction sheet on the “Care and Feeding of Dennis on Treatment Days”.  Since caregivers needed to record labs, help me sip water, watch for early signs of a reaction, make sure that I get safely out of the clinic and into the car, and assist me into my house where they might need to cover me, take my temperature, and give me Tylenol and Benadryl, I felt that we should provide some direction.  It was more than just giving me a ride to my doctor’s office and the whole process sometimes took six to seven hours.
I rode with Susan to the clinic. We went through our morning routine.  The Benadryl by now was causing a temporary condition called akathisia, or “restless legs”.  My legs would suddenly jerk upwards. Other times my legs would just not feel comfortable and I constantly changed positions.  Sometimes I needed to stand in front of my recliner, eyes still closed, and walk in place for a minute.  Eventually I grow tired enough to sleep.  I was aware that Susan was sitting next to me, stroking the back of my hand.  I have such good friends.  The infusion and hydration were nearly complete and still no reaction.  I began to become anxious about this, hoping that the chills and shakes would begin, hoping to get it over with, afraid that the reaction would not occur until after we had left the clinic.
Gladly the reaction started shortly though it was milder than previous reactions.  I was given my prn Demerol and Benadryl.  Then they piled me into the wheelchair.  Once in the car I began to shake again though not wildly.  Susan got me home and into my house.  My mother was waiting.  Susan gave me additional Tylenol and Benadryl after covering me with blankets.  She asked if there was anything else that she could do for me.  I thanked her for staying with me through such a long day after such a long night.  I lie there under my blankets with my eyes closed.  As she left, Susan kissed me lightly on the forehead.  I have such good friends.
A new chapter was beginning though I did not know it at the time.  That Friday was the last day that I had an infusion reaction in the clinic.  The difference in how I felt would be dramatic.  As I look back on this illness, I am aware that, on many levels, I am going through stages, different chapters each with their own set of challenges and surprises.  Having cancer is not a static condition.

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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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