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Before she began having difficulty swallowing 3 months ago, Jackson Memorial Hospital (JMH) esophageal cancer (EC) outpatient Diann Pearson (DP) weighed a long-legged 145 pounds – 3 pounds below the minimum recommended weight for her gender, height and frame, but a healthy weight just the same. As of this morning – after dropping to a low of 127 pounds due to the malnutrition issues associated with a constricted esophagus – Diann once again weighs 145 pounds!
We restored Diann’s weight with a daily regimen of Ensure Plus fed enterally using the Kangaroo ePump provided by her family. How we were able to reach this goal given the events of the last week is a wonder:
Diagnosed with EC on Friday 2/13, Diann has been waiting several weeks for outpatient chemotherapy and radiation treatment to begin on Monday 3/30. As a result of the lengthy delay, by last Sunday her esophagus had been closed completely by the tumor. She could no longer swallow anything without coughing it back up – not even water or her cough syrup. Her coughing became exhaustingly incessant, and fearing the saliva and phlegm that could no longer drain down her esophagus might fill her lungs, we headed back to the JMH Emergency Room around 5:00am on Monday 3/23.
Within 3 hours, Diann was examined by several doctors and the consensus was she should be admitted and have her chemotherapy and radiation treatment accelerated. And after 15 hours waiting for admission with neither nutrition nor hydration, JMH finally provided us with a few bottles of Ensure Plus and a 70cc syringe to feed her with. Then 3 hours later, they moved her to room 625W where we had to wait until the following evening before they finally delivered the enteral feeding pump and formula we demanded. By that time Diann had a temperature of 100.4 degrees – just high enough to delay chemotherapy by at least a day while they performed bloodwork, urine, sputum and other tests to identify the cause of her temperature rise.
That night I went online and cobbled together a minimum water requirements document which I shared with Diann’s doctors and nurses and taped on the wall of her room. It suggests her temperature rise might be attributable to the 2 days of insufficient hydration she’d just experienced and indicate a hole in the JMH treatment protocol for patients requiring enteral hydration. The doctors assured us that was not the case – but their tests turned up no other cause. The charge nurse, on the other hand, required every RN and PCT treating Diann to read the document.
Either way, after 24 hours of proper nutrition and hydration Diann’s temperature returned to normal and the apparently challenging logistics of coordinating the scheduling of chemotherapy by the Hematology Oncology department with radiation by Radiation Oncology department proceeded. On Friday morning we were told that Diann would receive radiation, then chemotherapy, then be discharged to continue outpatient treatment on Monday. The radiation happened but the chemotherapy didn’t, so Diann was transferred to room 1255 in Oncology with her chemotherapy scheduled for 10am Saturday morning plus a second radiation treatment 4pm Saturday afternoon.
If the logistical reliability of its systems was on par with the compassionate care provided by its staff, Jackson Memorial would be the finest hospital in the nation. But… Diann received her 4pm radiation treatment around noon, and her 10am chemotherapy commenced with “pre-medication” around 5pm.
The pre-meds had Diann high as a kite and her babblings had me and her sweet Jamaican nurse in stitches. All laughter ended, however, when the first of two cocktails started flowing through the chemo port in her chest. Diann’s eyes popped out of her head, her back arched and she would have literally jumped out of the bed (tubes and all) if I hadn’t held her down until the nurse came running back in with a small army in scrubs behind her.
They slowed the flow rate and doped her up some more, but the 3 hours that followed was for Diann a nightmare I can best describe as squirming in pain and writhing in agony. After two more attempts to escape, however, she came to grips with the situation and then fought like a tiger to regain her composure. She did, and by 9pm the dope was wearing off and Diann was once again herself and in full control.
About that time, the nurse in charge of the floor came in and told us it was time for all visitors (meaning me) to leave. I politely took exception, but she assured me it was hospital policy. So leave I did – at midnight, with Diann, after she had completed her second and final chemo cocktail without incident.
I cannot tell you how proud I am of Diann, how convinced I now am that DP is going to beat EC, and how grateful we both are to the physicians and staff of Jackson Memorial Hospital for helping her do so.
After three months of esophagus cancer diagnosis, outpatient esophageal cancer treatment finally begins tomorrow!