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Somewhere around noon on Sunday 05/24, our Jackson Memorial Hospital (JMH) doctor du jour Ali Garcia MD ambled into West Wing Room 733D and told esophagus cancer warrior Diann Pearson and I that, barring any concerns of ours, she was prepared to discharge Diann that afternoon. I told her my concern was whether the mix of medications Diann was sent home with would control her pain without numbing her brain. The doctor’s response was a what-do-you-want-me-to-say look – which meant that once again we were caught between a rock and a hard place and JMH had neither will nor way to help us.
An hour or so passed before nurse Julie shuffled in and announced that Dr. Garcia had entered Diann’s discharge instructions and prescriptions into the system. I told her we wanted all of her prescribed medications brought to us before leaving, and the nurse replied that on a Sunday that might be hard to do. I reminded her that page 5 of the JMH Patient Discharge Information pamphlet specifically states – without any Sunday exception – “If you would like your medications to be delivered to your bedside before you leave the hospital, please let your nurse know.” Nurse Julie then half-heartedly assured us she’d do what she could.
Thirty minutes later, a Nigerian-looking young man with the name Ademola Akinkunmi stitched on his starched white lab coat quick-stepped in and stood-to with military precision. Head shaved and polished, shoulders squared, chest out and hands behind his back, he introduced himself as the hospital administrator dispatched to deal with the “issues” delaying Diann’s discharge. I told him I had no idea what he was talking about, and he said he understood we were refusing to leave without Diann’s prescribed medications. I told him her narcotics were difficult if not impossible to get outside of the hospital pharmacy, and that once we got her home we weren’t making a trip back to get what we were entitled to leave with in the first place. Like nurse Julie, Mr. Akinkunmi suggested that might be a problem since the JMH pharmacy was closing at 4:00pm. I assured him that was his problem to solve, and not ours…
Just before 4:00pm, Akinkunmi and another starched-coat administrator rushed in – one clutching a bag full of enteral feed/flush sets and the other cradling a paper sack containing all of Diann’s prescriptions. Minutes later we were packed, out the door and out of Jackson Memorial Hospital for what may be the last time.
Monday 05/25 was “Memorial Day” – an American holiday originated in 1868 as a “Decoration Day” for the graves of fallen Union soldiers by the Grand Army of the Republic, a Civil War veterans fraternity that was dissolved when its last surviving member Albert Woolson died in 1956 at the age of 109. Over the ensuing century and a half, this observance has been expanded to honor all who’ve given their last full measure of devotion in any of the endless succession of wars orchestrated to assure that (a) the United States remains perpetually in debt to the banksters refilling its coffers at interest, while (b) an ever-increasing share of its borrowed treasure is misappropriated to a greedy corporatocracy in general and the military-industrial complex in particular, by (c) corrupt politicians who are their puppets.
I digress, but not very far… From the Civil War forward, when doctors and medics had nothing else to offer suffering wounded soldiers they gave them morphine. Now here we are 150 years later, and what does JMH give to suffering cancer warrior Diann Pearson now that they have nothing else to offer? Morphine. So much for the advances of modern healthcare and corporatized medicine.
My Memorial Day was spent pondering what to do now given that (a) Diann had trusted me to help her, (b) I had trusted Jackson Memorial Hospital to help us, and (c) all JMH did was take the inevitable and make it unbearable. Palliative specialist Cyrus Meshkin MD had suggested medical marijuana and our friend Gailynn Davis was pushing me to pursue cannabis oil treatments, so I logged onto DuckDuckGo to get the straight scoop about both. Instead, I ended up getting lost in a quagmire of mixed messages about the legality and effectiveness of either. After a long day of inconclusive interaction, I vented my frustration in this email to Dr. Meshkin:
Hi Dr. Meshkin,
… I am weary of doctors giving us false hopes. I am weary of doctors running us down rabbit trails. I am weary of throwing spitballs at battleships. I am weary of pissing in the wind. And I have no time, energy or patience left for playing cat and mouse:
1. If you know of the specific type of medical marijuana we need and a specific source where I can get it, tell me. If you don’t, say you don’t.
2. If you know of the specific type of cannabis oil we need and a specific source where we can get it, tell me. If you don’t, say you don’t.
I went to bed Monday night regretting I’d sent that. I regretted more, however, that with four months of aggressive advocacy I may have prevented JMH from actually killing the woman moaning beside me but I had failed to cure her cancer, end her debilitating cough, or even find a way to ease her pain without numbing her brain.
In the predawn hours of Tuesday morning 05/26, I gave up trying to ignore Diann’s pain-inspired “Om” chant and sleep. Instead I got up, made coffee and got on the computer. It was then that I truly regretted my last email to Dr. Meshkin because, taken with the others I’d sent the previous day about Wonder Weed and CBD/THC, it was enough to have my ISP suspend all my business and personal email services and freeze all my web accounts under suspicion of “phishing” and drug-related illegal activities. I spent the entire day rerouting email forwards and contact forms before finally, after offering to let them see Diann’s medical records and a little social media shaming, I convinced them to restore our accounts.
Wednesday morning 05/27 began much the same as Tuesday, but thankfully without any Big Brother intercessions. Just before 10:00am, we beach-scootered over to a meeting with one of our two remaining hospice service candidates to take a look at the facility where Diann would reside if it was no longer feasible to care for her at home. It would’ve been nice if the rooms were as luxurious as the lobby, but otherwise we’ve stayed in far worse places. Understandably, Diann did not like going there any more than I liked taking her. But as she conceded, “It is what it is.”
Not wanting to leave any stone unturned in our search for a ray of hope, Thursday morning 05/28 I composed and sent the following Hail Mary to 66 cancer clinical trials contacts scattered across the country:
Re: Stage IV Squamous Esophageal Cancer Victim Diann Pearson (Female, DOB NN/NN/NNNN, 5’11” 140lbs)
On 9 February 2015, Diann Pearson was admitted to Jackson Memorial Hospital (Miami FL) for the first time with difficulty swallowing and an esophagram showing her esophagus was constricted by a tumor. On Friday the 13th February 2015, she was told by medical oncology fellow Amrita Desai MD and radiation oncologist Rafael Yechieli MD that her diagnosis was stage IV squamous esophageal cancer.
On 24 May 2015, Diann Pearson was discharged from Jackson Memorial Hospital with the same malignant tumor she went in with – plus an enteral feeding tube in her duodenum because she still can’t swallow anything, a chemo port in her chest through which she received just enough Paclitaxel and Carboplatin to leave her half bald and always nauseated, and a 4-inch stent in her esophagus intended to (a) block a fistula caused by radiation and (b) relieve her of an incessant debilitating cough that returned 10 days after it was placed.
Her chemotherapy and radiation treatments suspended indefinitely, Diann Pearson is now at home receiving palliative care under the guidance of Cyrus Meshkin MD consisting of narcotics for her pain and cough (codeine, methadone and morphine), amiodarone for her heart, and sundry prescriptions for nausea. And unless you have something better to offer than an opiated odyssey into oblivion, that will be the final chapter of her story.
Can you (or someone you know) help stage IV squamous esophageal cancer victim Diann Pearson?
If there’s any possibility, please let us know by email reply, fax to 877-NNN-NNNN, or call to 305-NNN-NNNN.
For more information logon to helpDPbeatEC.org.
Hail Mary and Thanks :-)
What few replies we received were sympathetic, but none of them offered any actionable next steps. So from a curative standpoint, in Diann’s case we’ve reached the end of the road.
Pray for Diann,