Revised Cancer Treatment Plan: Numb My Pain, Not My Brain & Send Me Home!

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Help Esophageal Cancer (EC) combatant Diann Pearson (DP) beat Esophagus Cancer!Help Diann Pearson (DP) beat Esophageal Cancer (EC) by pledging a monthly donation towards her medical and living expenses while undergoing chemotherapy, radiation treatment and surgery. Sponsorships are also available for you or your family, club, group, business, organization, church, charity or cause.

Esophageal cancer awareness periwinkle ribbon

Around 9:00am Monday 05/18 a nurse in the Jackson Memorial Hospital (JMH) South Wing 4th Floor Medical Intensive Care Unit (MICU) we’ll call “Janice” began the process of transferring esophageal cancer (EC) patient Diann Pearson (DP) to “the floor” – meaning JMH West Wing 7th Floor Room 733D – where she was to wait for her planned bronchoscopy. The transfer process was agonizing to watch, as the overweight and over-the-hill Janice was IMO too slow both mentally and physically to be serving as an ICU nurse:

  • She couldn’t handle an IV insertion into Diann’s fragile veins, so we had to wait for “Moses” (no kidding) to do that;
  • It took her several tries to find and correctly dial the right number for the West Wing 7th Floor Nurses Station to report the transfer;
  • It took her several minutes more to enter the called nurse’s name correctly and close out the transfer on her rolling computer – during which she fumbled and dropped her mouse several times; and
  • She would have transferred Diann without her life-maintaining enteral feeding pump if I had not stepped in the crowded Bed 11 space and blocked the transfer long enough for a supervisor to come over and confirm that the pump was supposed to go with the patient.

Revised Cancer Treatment Plan: Numb My Pain, Not My Brain & Send Me Home!I would not have mentioned any of this had Janice not made one more mistake: Just before Transport rolled Diann away – sometime between 10 and 11 am – Janice apparently decided to give Diann ALL of her medications ALL at once. By around 11:30am, that potent cocktail containing Benadryl, Codeine and Dilaudid had Diann sleeping motionless, with her mouth opened round like a fish, and by all appearances comatose for about two hours. When Diann woke up, she seemed confused and was having a hard time forming and finishing sentences. I figured she was just groggy – like coming out of anesthesia – but as time went on her “mentation” (how doctors like to say “thinking”) was not improving…

By 6:00pm it was clear that Diann’s bronchoscopy was not going to happen that day – and that no doctor was going to come by and tell us why. I headed for home, but expressed concern about Diann’s mental state to her nurse before leaving. Then around 8:00pm I called Diann to check on her. She answered her phone, but everything she said was gibberish. Suspecting now that she might have been overmedicated, I asked her what her room number was, and she said she didn’t know… I asked her what her address was, and she said she couldn’t remember… I asked her what her phone number was, and her response was nonsensical mumbling. Somehow then we got her nurse on the line, and before she hung up on me I told her to stop all of Diann’s pain medications until we could speak with a doctor.

I returned to JMH West Wing 7 just after 6:00am Tuesday 05/19, stopping at the nurses station to repeat my request to speak with a doctor about Diann’s meds and “mentation” before rejoining Diann in her room. I again asked Diann to tell me her address and phone number, and it hurt me to see the frustration in her eyes when she could not articulate the answers. It hurt me even more to know that at my insistence she was not receiving any pain medication for fear they would fry (or had already fried) her brain.

Another thing Diann was not receiving was proper nutrition and hydration: In anticipation of a Monday bronchoscopy that never happened, some unseen doctors had her “NPO” – short for the Latin nil per os (nothing by mouth, which apparently halts enteral feeding as well) – from midnight Sunday to late Monday afternoon. In anticipation of a Tuesday bronchoscopy that also never happened, they again had her “NPO” from midnight Monday to Tuesday afternoon. And even when they did allow us to feed her through the peg in her stomach (duodenum, actually), “they” were insisting we cut her water intake to half the rate we used successfully at home.

So… We spent all day Tuesday 05/20 trying to speak with our unknown “primary” doctor du jour about Diann’s fried mind, trying to find out when her bronchoscopy was actually going to happen, and trying to convince a petite young Latina nurse named Ada (who barely understood my Texas twang) to leave the feeding pump settings alone because we used the same pump at home and knew what the settings should be. We ultimately engendered sufficient discordance to necessitate the intercession of Nurse Manager Sandra Goffe – and we’re glad we did.

Sandra came across as the “lead, follow or get out of the way” type – which I can easily respect as either friend or foe. She couldn’t teleport our teledoctor immediately, but she did at least give us her name – Ali Garcia MD – and a promise to convey to that physician our urgent need to right what was wrong with Diann. She then brought in pulmonary fellow Lesley Farquharson MD, who explained that Diann’s bronchoscopy had been delayed due to concerns about her heart, but assured us that if nothing changed it would happen Wednesday morning. And when I feigned the possibility of guarding Diann’s feeding pump with a shotgun if the nurses didn’t stop trying to cut off her water, she laughed and assured me that no one was changing anything until we first spoke with Dr. Garcia.

Nurse Manager Sandra knew I was bluffing about the shotgun (I hope), but apparently one of the many staffers at JMH for whom English is a second language overheard me and missed the cue: Shortly thereafter, we were told we’d be getting a new nurse because poor Ada was afraid to enter Diann’s room again. And soon after that, JMH Guest Services concierge Anthony Diaz rushed in and eloquently expressed the hospital’s concern about my “altercation with one of the nurses.” Wow. Too bad the JMH staff can’t deliver medical care as expeditiously as they can spread idle gossip…

Later that day, Dr. Garcia finally showed up. She recognized that Diann was overmedicated and consequently incoherent, and confirmed that Diann would not be given any more narcotics until her case had been reviewed by pain management specialists. She also said she’d bring in a dietician to consult with us on the feeding pump settings, at which point I handed her the business card of JMH dietician Maria Vallasciani. There ended our first consultation with Dr. Garcia. I subsequently had one-on-one exchanges with Maria and Diann’s new male nurse Wendy – and the feeding pump settings stayed as they were until midnight. Then for a third time, a malnourished Diann was “NPO” for a bronchoscopy the next morning.

Around 9:00am Wednesday 05/21, Diann’s bronchoscopy was at long last performed. It was our last hope to try and isolate the cause of Diann’s renewed and incessant cough, so I was crestfallen when a senior doctor coming out of the lab where the bronchoscopy was performed told me they didn’t see anything other than scar tissue where the stented fistula was. I was contemplating next steps when my cellphone rang with Nurse Manager Sandra inviting me to join her in the 7th Floor conference room for a meeting about Diann’s care. I assumed it was another staged intervention about enteral feeding. I’d been prepared for that, but hearing the results of the bronchoscopy had taken all the wind out of my sails. Fortunately Dr. Farquharson sat in the meeting long enough to explain where we were, and it was clear to all that debating feed/flush settings at this point had about the same priority as re-arranging deck chairs on the Titanic. I then looked them all in the eye one-by-one as I told them Diann’s cancer treatment at Jackson Memorial Hospital had done her more harm than good – that she’d been given just enough radiation to open a fistula, and just enough chemo to lose half her hair – and that the least they could do now was alleviate her pain without turning her into a vegetable.

The Blind Men & The Elephant | Corporatized MedicineLike the one before, this intervention was now over before it began. As I stood up to leave, Nurse Manager Sandra promised to schedule a meeting with a totally different agenda for the following day. Nevertheless, I felt compelled to share with all concerned a poem entitled The Blind Men and the Elephant, which cleverly conveys this patient advocate’s take on corporatized medicine.

Wednesday afternoon some anesthesiologists came by to examine an improving but still confused Diann, and hear my view of what happened to her on Monday. They reviewed her medical records and agreed that most likely MICU nurse Janice had given her too many medications at once, and suggested they cautiously begin treating her for pain again with some of the medications we used at home. We agreed, and for the first time in two days Diann’s coughing and back pain was sufficiently alleviated to allow her some much-needed rest.

Sometime after 10:00am Thursday 05/21, Diann got out of bed and walked with assistance to join me in the West Wing 7 conference room for a meeting with palliative care specialist Cyrus Meshkin MD, case worker Coralis Pena, Nurse Manager Sandra Goffe and others. At this meeting JMH conceded it could neither completely cure Diann’s cancer nor completely eliminate her cough, so what remained was to identify a mix of medications that could ease her pain without frying her brain. The treatment focus would now shift to palliation, with Dr. Meshkin taking the lead. The objective would be to send Diann home as soon as possible with as much quality of life as possible, and Coralis Pena’s contribution would be to contact approved hospice care providers – in case we should choose to take that route – and invite them to contact us.

Contact us they did. First Vitas Healthcare, then Catholic Hospice, then Gentiva Hospice, then Miami Jewish Health Systems' Seasons Hospice. The reps for the first three were well groomed, sharply dressed and happy to provide us with email addresses, business cards and polished marketing brochures. The rep from Seasons Hospice, on the other hand, looked like she’d slept in her clothes and lost her comb. She offered neither email address nor business card, and her literature consisted of a pictureless document containing pages and pages of bland text and intimidating forms. If her goal was to tell Diann she wasn’t welcome at Seasons Hospice, she had her mission accomplished long before she closed her 60-second presentation by offering convenient funeral arrangements. Jesus F**king Christ!

I went home Thursday night, had some wine, wept and went online to try to find some way, any way, to save Diann from what is looking more and more inevitable. I found this:

Esophageal Transplant Frees Man from Feeding Tube, Restores Normalcy

Angered that a similar solution had not been presented for Diann, I emailed some EC specialists and asked why. Here is how one esophageal cancer expert replied:

“This was not really a transplant but use of another organ [small intestine] to replace the esophagus. The more common surgery is to remove the diseased esophagus and move the stomach up into the chest. When a fistula is present between the esophagus and part of the lung, this or any esophagus surgery can be extremely difficult/impossible and associated with a high complication rate or even death.”

Pray for Diann,

BDaddy

Esophagus Cancer, Incessant Cough & Alleged Arrhythmia

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Help Esophageal Cancer (EC) combatant Diann Pearson (DP) beat Esophagus Cancer!Help Diann Pearson (DP) beat Esophageal Cancer (EC) by pledging a monthly donation towards her medical and living expenses while undergoing chemotherapy, radiation treatment and surgery. Sponsorships are also available for you or your family, club, group, business, organization, church, charity or cause.

Esophageal cancer awareness periwinkle ribbon

The esophageal stent placed on Wednesday 04/22 was doing a fine job of blocking esophagus cancer warrior Diann Pearson’s bronchoesophageal fistula, mitigating her coughing fits and allowing her to swallow liquids until Thursday 05/07. From then on, swallowing became increasingly difficult and slowly but surely her dreaded 24/7 cough began to return. By Mothers Day Sunday morning 05/10, we were convinced we had a serious problem and messaged her doctors at Jackson Memorial Hospital (JMH) accordingly:

**********

I am writing to inform you that the esophageal stent you implanted in Diann Pearson is not working. By “not working” I mean specifically:

1. She can no longer swallow anything – Ensure, juice, tea, water, anything – without gagging.

2. Though not nearly as frequent or severe as before – yet – her persistent cough is returning.

We plan to come to the Jackson Memorial Hospital Pharmacy on Monday morning to try one more time to pick up a prescription for nebulizer solution written two weeks ago. While we are there, we would like for you or your designate to at least examine Diann. If that can be arranged WITHOUT another 12- to 25-hour stay in the frigid JMH ER without nutrition or hydration, we would greatly appreciate it.

**********

Our plan was to take our beach scooter to JMH at 9:00am the next morning, but after yet another sleepless night around 3:00am Diann starting vomiting profusely. It was probably just from the chemo, but the simultaneous gagging and coughing was more than she could bear. So we packed a bag, grabbed a bucket, called a cab and headed once more to the ER…

When we arrived at the JMH Emergency Room around 6:00am Monday 05/11, it was almost devoid of patients. Despite that, it took me a few minutes to get the attention of someone behind the glass, and several minutes more to convince them that the sole woman in the waiting room slumped over, coughing and vomiting into a bucket was seriously ill. Finally they opened the door and escorted us to a triage gurney. There we waited, and waited, and waited for a nurses’ huddle 15 feet away to break. I thought someone would come attend to Diann as soon as the shift-change summit concluded, but I thought wrong…

I was just about to get loud when I saw a woman walk in with Director of Emergency…something stitched on her heavily-starched white lab coat. I got in her face and asked point blank when we would at least be given the opportunity to tell someone what was wrong with Diann. Without responding she marched over and said something to a triage nurse seated and staring at a computer screen, who then immediately jumped up and whisked over to us. I explained to the nurse that Diann had stage IV esophageal cancer, that she had a stent in her esophagus blocking a bronchoesophageal fistula, and that we feared the stent had slipped or was leaking. She took a quick look into our bucket of phlegm and vomit, then without asking questions rolled us straightaway into ER-C.

In our previous ER visits triage went swiftly and diagnosis took forever, but this time it was the other way around: Within minutes, the doctor in charge (Scott?) spoke with us and ordered an X-ray. An hour or so later he ordered a CT scan, which among other things identified “a small disruption of the left lateral wall of the esophagus … worrisome for perforation.” That led to the scheduling of an endoscopy for later that afternoon.

From our pre-op exchanges with gastroenterologists Erin Perlini, Fernando Calmet and Afonso Ribeiro, we were led to believe that the goal of the endoscopy would be to find out why Diann’s ability to swallow was gone and her cough had returned – and if possible, fix the problem. After the late afternoon procedure, however, no GI doctors were available to tell us anything – and all a seasoned recovery nurse named Pat could say was the endoscopy report indicated that Dr. Deshpande et al made no mistakes in placing the stent, and that Diann’s problems must be rooted in “reflux” or elsewhere. Whether that means an unstated objective of the endoscopy was CYA is hard to say.

Anyway… As with her previous endoscopy, during and immediately after the procedure Diann’s EKG picked up some irregularity in her heartbeat (arrhythmia). And as before, we told the concerned nurse that for Diann it was regular to have an irregular heartbeat. Nevertheless, she followed protocol and reported the arrhythmia to some unknown teledoctor du jour, who in turn followed protocol and ordered Diann be sent to “Telemetry” where her heartbeat could be monitored continuously. Fearing that the focus of treatment might shift away from her cough more so than some arrythmia that might not even be a problem, we refused and demanded they simply return us to South Wing 614B and let Diann get some rest. The compassionate nurse Pat understood our priorities, and made that happen.

Tuesday morning 05/12 came and went with Diann’s coughing and body pains unabated – and no word from any doctor about next steps. Midafternoon we finally received our first visit from yet another rotating JMH hospitalist empowered to make life-or-death decisions about the care of patients they know only from online medical records that are often incorrect, always incomplete, and easily misconstrued. This time we drew Guillermo Samper MD, who immediately parroted the position that “reflux” was the problem and began describing his gastritis treatment regimen. I interrupted to point out they tried to sell us on “reflux” before, and a barium swallow proved that instead the problem was a fistula. After a brief acrimonious exchange, he agreed to order another barium swallow/esophagram. I then brought to his attention Diann had received no enteral feeding for almost 36 hours, and he said she’d have to wait for nutrition until after the barium swallow.

Tuesday evening then Wednesday morning 05/13 came and went with no one showing up from Transport to take Diann for her esophagram. When GI doctor Fernando Calmet came to visit I asked about the delay, and he told me Diann’s WBC (white blood cell count) was too low to perform the procedure. I replied that starving her for almost 3 days was not likely to raise her WBC. He acted surprised and ordered her enteral feeding resume immediately. Turns out her feeding tube is inserted in her duodenum – not her actual stomach – so enteral feeding would have no impact on her barium swallow test. That means that Diann had needlessly gone without nutrition for over 44 hours, simply due to the limitations of doctoring from a distance…

Around 4:00am Thursday morning 05/14 we were awakened by a tech who came to draw blood to test Diann’s WBC. At 10:00am we were told it was 1.6, and at noon we were told that was high enough to schedule a barium swallow. Finally at 8:30am the next morning, Friday 05/15, the barium swallow we’d been waiting for since Tuesday – with Diann suffering from constant coughing and pain the entire time – was finally performed.

Along with the physicians most familiar with Diann’s case, I was surprised but not relieved to read in the esophagram report Friday afternoon that there was “no contrast seen in the trachea or bronchi.” That meant they still did not know the cause of Diann’s cough. With my urging, Dr. Samper agreed we should get a look from the other side by accelerating the bronchoscopy the gastroenterologists had suggested on Monday. Consequently, pulmonary specialist Lesley Farquharson MD came by for an introductory consultation in that regard late Friday evening. The next morning she returned with her superior Elio Donna MD, who approved the scheduling of the bronchoscopy for Monday morning 05/18.

I’d like to end this update here. I’d like to, but I can’t…

Every day this week, some JMH doctor expressed concern about Diann’s alleged* arrhythmia and recommended she be transferred to “Telemetry” where her heartbeat could be electronically monitored continuously. And every day this week, we refused for one reason: We did not want the focus of her treatment shifted away from curing her cough. On Saturday 05/16, however, we decided that perhaps discretion was the better part of valor and gave in to their demands.

“Telemetry” at JMH was not the hi-tech healthcare haven I had envisioned: Its West Wing 5th Floor location is dark and uninviting, and in her assigned room 521 my shoes stuck to the floor, the musty “sleeper” chair needed cleaning, the nightstand was in pieces and the crystal of the wall clock was shattered. Think Twilight Zone… Adjectives like depressing, disturbing and disgusting would all be fitting.

Esophagus Cancer, Incessant Cough & Alleged ArrhythmiaFortunately (for lack of a better word) Diann’s sentence in “Telemetry” was brief, as late Saturday evening she was transferred to South Wing 4th Floor MICU for a transfusion to bolster her blood and an amiodarone treatment for her alleged arrhythmia. Hopefully that will unharmfully constrain her natural heart rhythms to a range that keeps her off the radars of distant telemetry-dependent doctors she doesn’t know and who don’t know her. And once this EKG-instigated cardio detour is behind us, Diann would like to offer to all concerned a simple plan for progressing her cancer treatment:

1. FIX MY COUGH.

2. NUMB MY PAIN.

3. SEND ME HOME.

Pray for Diann,

BDaddy

* I say “alleged” because as of this writing I have been provided with no information that suggests the “arrhythmia” is anything other than what an anesthesiologist called the “gallup” in her normal heartbeat.