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Although they are both located on the Jackson Memorial Hospital (JMH) main campus, the JMH Radiation Oncology and Hematology/Oncology departments are 100 yards and a world apart: The Radiation Oncology facilities have shiny floors, plain but pleasant waiting areas, and restrooms almost as clean as the one at the Quantico Marine Corps Officers Gym – which is the cleanest public restroom I’ve ever seen. In sharp contrast, JMH Hematology/Oncology facilities offer the aesthetic appeal of a musty urban bus terminal and their restrooms are in worse shape than many of the truck-stop toilets I encounter on my cross-country rides. Given that cancer patients are especially susceptible to infection, somebody ought to do something about that…
Anyway… Since my last report Diann Pearson has completed 10 EC outpatient radiation treatments and her second chemotherapy session – which was her first in the JMH Ambulatory Care Center 2nd Floor “Infusion Center”. JMH radiation techs “Miss Holly and Joe” executed her radiation treatments painlessly and with the precision of a Swiss watch. Her second chemo session, on the other hand, was not something you’d want to watch:
We checked into the Infusion Center at 7:30am on Monday (April 6) for her 8:30am appointment. By appointment time, a nurse had checked her vitals and a financial services clerk had chided her for a paperwork glitch that only her primary doctor Frances Aquino and Molina Healthcare can fix, but no chemo was flowing. At 9:00am we reminded the receptionist she had a 10:00am radiation treatment, and we were told to go ahead and go to it because it would be “hours” before her chemo was ready.
When we returned to the Infusion Center two hours later, Diann was scolded again – this time because when they called to tell her the chemo was ready she didn’t answer (because they were calling the wrong number). We were then escorted into the Infusion Room and directed to one of the Infusion Chairs: Imagine a 1960’s beauty salon chair, except with a flat-screen TV on robotic arms instead of a hair dryer, and an I-V pole with chemo cocktails hanging in biohazard-green bags instead of a hairdresser.
JMH chemo nurse Myrlene (sp?) settled us in and applied some numbing cream to deaden the pain of accessing the chemo port on Diann’s chest – a measure of mercy that was omitted the first time. She then gave Diann her “pre-meds” and told us the chemo cocktails would be the same as before. We then warned her that Diann might have a bad reaction – same as before. She told us not to worry, started the chemo flow and then went on break.
Barely a minute passed before – just like before – Diann arched her back and her eyes popped out of her head like a scene from Who Framed Roger Rabbit. This time, though, instead of trying to jump up and escape she looked at me and rasped “I can’t breathe!” There was no nurse in sight so I ran over to the other side of the Rocky Horror Beauty Salon, found one and pleaded for help. She came grudgingly and asked me if the patient needed oxygen. I have no medical training beyond a Boy Scout First Aid merit badge but was confident in replying to the affirmative, so she put an oxygen mask on Diann and turned off the chemo flow.
By the time her assigned nurse returned from break, Diann had recovered her breath and composure. The nurse gave Diann more Benadryl, lowered the flow rate and restarted the chemo. Soon after Diann again had an adverse reaction, so the nurse stopped the chemo and called Diann’s oncologist Amrita Desai. The doctor told the nurse to give Diann a shot of morphine and restart the chemo at a slow rate. She did. The morphine had Diann stoned out of her mind (and bug-eyed for two days), but by around 5:30pm she had completed (and survived) her second chemo. As a doctor friend of mine recently observed:
“We truly live in a prehistoric world of medicine. One day these types of therapies will be relegated to old dusty books on a shelf in the basement of a soon to be torn down decaying building.”
Anyway… By the time we got home Monday night, yet another unexpectedly long day at JMH had forced Diann to forego nutrition and hydration for 11 hours. This explains at least in part why Diann is losing weight again – down from 145 to 137 pounds since my last report. To counter this – beginning with her Thursday (April 9) visit to JMH for a 10am radiation treatment at 10:00am and a 12:00pm followup appointment with Dr. Desai sometime after 2:00pm – we are now taking our enteral feeding pump, feed/flush bags and I-V pole with us on every JMH visit involving more than a radiation treatment.
As more EC patients are lost to malnutrition than to the cancer itself, Diann’s calorie count is an ever-present concern. More pressing at this point, however, is her COUGH. On Thursday I made it clear to the doctors in both radiation and oncology that Diann’s endless weeks of 24/7 coughing is exhausting her spiritually as well as physically, and that even with codeine their cough syrup was not a solution. They apparently huddled, decided the cough might be coming from radiation inflammation or gastric reflux as well as mucous/phlegm ejection, and sent us home with prescriptions for each transmitted to Walgreens.
When we arrived at Walgreens to pick up Diann’s new prescriptions, the pharmacist told us they’d been written improperly (e.g. pills not liquid) and that although he corrected them he couldn’t fill them because (a) he didn’t have one of them and (b) Molina Healthcare has no agreement with Walgreens anyway. We paid out of pocket for what he could fill and asked him to transfer the rest to CVS – which DOES have an agreement with Molina. Blah blah blah by Friday (April 10) the good news is we finally had all the new prescriptions. The bad news is that as of today they’ve had zero impact on her coughing – although they have brought back her diarrhea.
As Dr. Desai said, Diann is in the worst of it now and she just has to hang on. I know she will…