I MAY HAVE UNDERGONE 7 BRAIN SURGERIES AND STILL COGNITIVELY ALRIGHT FOR THE MOST PART, BUT I CANNOT COMPREHEND THE WORLD WE ARE LIVING IN RIGHT NOW
If anyone reading this has been following my Series, “WHAT CENTURY IS THIS?” you know I’ve delved deep into some major societal issues, well beyond just cancer. I’ve tied many of them into cancer, as this has always been a blog dedicated to my cancer experience, until recently.
As a writer, I could not ignore what was going on around me and across America. I don’t even think I can called it the “United States” any longer because we are so incredibly divided. It just keeps getting worse too, day by day.
Again, if you’ve been following this Series, you know my initial inspiration was my favorite novel 1984 by George Orwell. From there, the ideas came flooding in as more news reports showed demonstrators blocking entire avenues, bridges and roadways in support of the Black Lives Matter Movement. In contrasting images, I watched extreme measures used by police officers to suppress those protestors’ First Amendment rights. Further, there were images of white supremacists armed with massive firearms and ammunition rounds “standing guard” to intentionally intimidate the marchers. They were protected by police, while peaceful marchers were tear-gased, pepper sprayed, shoved to the ground, manhandled, beaten with batons, and shot at with alleged “less harmful” rounds from beanbag guns. Some protestors were severely harmed by those alleged “less harmful” firearms, shot in the head or face. This was all occurring in the midst of a deadly, ferocious pandemic.
Thus, I felt an obligation to close out this Series discussing our Healthcare Workers.
In Part 4.01 I addressed the “pandemic of lunacy” sweeping across the country protesting lockdown orders, which were intended to quell the spread of the COVID pandemic. I highlighted just some of our Healthcare Heroes, who stood tall blocking traffic and created their own peaceful counter-protest. They knew what was occurring inside hospitals, working 15-hour shifts trying to save virus patients’ lives, all without the proper safety equipment to keep themselves safe. All of this despite how ill-equipped the actual hospitals were to care for the volume of patients. Thus, they knew firsthand how many lives simply could not be saved.
Beyond that I went into the detailed numbers of new cases spreading across the country, despite what we went through here in the NYC Metro area back in March and April. States like Florida, Texas and Georgia, as well as their hospital systems had plenty of time to prepare. Government officials should have protected its citizens from the scourge of this virus. Instead, they insisted the virus was some liberal hoax. Now the number of new cases in those States per day are surpassing the numbers we saw in New York months ago!
I also discussed the mental toll this tragedy has had, and the affect it will continue to have, on our Healthcare Heroes. This hits very close to home, as I’ve spent the last 6 years in and out of NYC hospitals. I have some of the greatest doctors in the country. I have been cared for by the most kindhearted loving nurses, therapists, and essential hospital workers. They worked the frontlines. They witnessed the carnage up close and personal.
So, I’ll admit – if someone EVER has the nerve to tell me this is all a hoax to my face – they might just get caned! (Kinda joking, but kinda not)
I have a cane, an Irish temper and I’m not afraid to use either on such disgusting ignorance.
Is violence the answer? No, of course not. However, when my Healthcare Heroes‘ lives are at stake, you better believe I will step-up to defend them in any way, shape or form possible. I may be tiny, but I am fierce!
PHOTOS FROM MY LAST HOSPITAL STINT AT NYU RUSK INPATIENT REHABILITATION FOLLOWING MY 7TH BRAIN SURGERY – ROOM WITH A VIEW!
Our Healthcare Heroes Working Through A Pandemic – The “Unseen” Heroes
In continuing to think about our Healthcare Heroes last night, I was reminded by a Tweet from a doctor to acknowledge the “unseen heroes”. I’ve mentioned them throughout my Posts, but those who are fortunate enough to have never been hospitalized may not understand just how many of these heroes work behind the scenes. Since I’ve lost count on how many times I’ve been hospitalized over the last 6 years, I can detail many of these workers’ roles.
I’ll take a typical day for me in a hospital:
- Social Workers, Chaplains & Recreational Therapists – All of these workers are essential to a patient’s well-being while in the hospital. Some patients do not know or take advantage of the services they provide, but for many patients they are crucial. Just taking my experience for example:
- There was one social worker who unfortunately left the NYC area to return to his home state. He did more for my husband and I in the matter of 3 years than some doctors I’ve met. If there was ever a patient advocate, it was him. Losing him was devastating.
- Personally, I have not interacted much with chaplains, but I know how much guidance and comfort they can provide patients and their families.
- As for recreational therapists, they are a God-send for me in the hospital! At MSKCC, there is an entire recreational floor in the main hospital with games, art, crafts, music, etc. At NYU Rusk, there is an art therapist, who I worked with almost everyday during my stay. When volunteers are permitted back, I will be volunteering with her. They also have a horticulturist, so patients choose from an array of plants. Once you choose your plant, you then pot it, which aides in coordination skills. Then, you have a beautiful plant or plants to display in your room. Once you’re released you can take your plant home. Amazingly, some of mine are still alive! It’s an incredible way to break-up the monotony of being in the hospital for so long. You also get to interact with other patients, which I always enjoyed.
THERE WAS A RUNNING JOKE AMONGST THE STAFF THAT MY ROOM LOOKED LIKE ITS OWN HORTICULTURAL CENTER (DON’T MIND THE GIANT BALLOON THAT IS SUPPOSED TO BE 40, BUT LOOKS MORE LIKE PO)
- Catering Services – 3 times a day these workers bring you your meals, take your meal orders and in my experience, always greet you with a smile. Again, I’m fortunate enough to have treated in NYC’s best hospitals so maybe I’ve just been lucky. Nevertheless, these workers interact with patients multiple times a day. I see them sometimes more than I see my doctors. Thus, if you’re in the hospital for a week or 2, you really get to know them.
- I turned 40 while in Rusk Rehabilitation this year. I don’t have a photo unfortunately, but a huge group from the catering staff brought me an unbelievable dessert and gathered around to sing me “Happy Birthday“. <3
- Being there for 2.5 weeks, some of the catering staff would secretly “take a quick break” and sit on the edge of my bed to just chat. They’re always on their feet, so I enjoyed the time we’d spend chit-chatting, allowing them a few minutes to just relax.
- I’ve been admitted to the EEG-monitoring unit at NYU several times. I desperately need coffee in the morning, and during my first admission my morning coffee was cold. I asked the wonderful young, man who worked as our floor’s catering service staff member to PLEASE note I needed hot coffee. Well, during my 2nd admission, wouldn’t you know it was the same great guy who took my breakfast order and remembered me immediately because I had to again explicitly ask for HOT COFFEE. He said, “I knew you looked familiar!” I always got hot coffee because he always took care of me. He also loved talking to my husband about sports. The littlest things in the hospital can mean everything.
- Cleaning Services – Similar to the catering staff, you see the cleaning staff at least once if not multiple times a day. They too are hard-working people, on their feet all day. Yet, I’ve never encountered one who was unpleasant or complained. Instead, one man in particular sang every day when he cleaned my room at Rusk. He always told me I was in his prayers. Another member of the cleaning staff at Rusk was always cheering me on as I transitioned from a wheelchair, to walking with an aide, to finally walking independently. They are proud to mop the floors and help keep your room sanitized. You can’t say that about many people earning 6 figure-salaries in corporate jobs.
- Transport Services – In the hospitals I’ve been admitted in, patients are constantly being transported to and from various scans. Transport workers are always on-the-move, from one floor to the next, coordinating bringing patients to their scans and then back to their rooms. It can be especially challenging when people are in severe pain, when it hurts to simply move an inch. It’s also difficult when a person is heavier (I’m 100 lbs. so I’m no problem). Again, the longer your stay, the more often you see the same transport staff. Transport always seem to know EVERYONE around the hospital!
- Included in this are the staff who operate the specialized patient elevators. At Rusk, my friend Big James, was that man! When you’re inpatient for physical therapy, occupational therapy, speech, vision, etc., you ride that elevator sometimes 8 times a day. So, Big Jim was my guy! We even had the same birthday. He greeted me every time with a huge smile, a fist pump or high-five. He never ever complained. Instead, he was always rooting on every patient, encouraging them. He is a true hero.
- Scan Technicians – once transport drops off a patient for a diagnostic scan, the technicians take over. Again, if you’re in the hospital for several weeks, you’re likely going to meet the same techs over and over.
- The Vampires – you could be wondering, “Huh?” The Vampires are the phlebotomists who wake you up at about 5:00 a.m. to stick you for blood draws 3 times a week, depending on your condition. There is nothing like being woken up only to be stuck with a needle on the regular, praying that they: 1.) Get your vein on the first try, and 2.) You don’t wind up gushing blood all over your bed because they missed your vein (speaking from experience on that one)
- Security – every hospital I’ve been admitted to has a significant amount of security guards. So, while they serve no medical purpose (as far as I know anyway), they are essential to the hospitals.
- Administrative Staff – since I treat in such large institutions, the amount of admin staff must be enormous. While I know many have worked remotely, many still report to work inside the hospitals. In some cases, I know of admin staff who never worked a day in the hospital because their offices were in a separate building, yet they were forced to switch roles and work inside their respective hospital at the height of this pandemic.
THERE COULD BE SOME VITAL STAFF I’M MISSING HERE, BUT THIS IS JUST TO GIVE YOU AN IDEA OF THE AMOUNT OF PEOPLE BEYOND THE DOCTORS, NURSES, NURSES’ AIDES (PCTs) AND REHABILITATION THERAPISTS WHO ARE OUR “UNSEEN” HEALTHCARE HEROES
Healthcare Heroes Working Through A Pandemic & The Black Lives Matter Movement
HEALTHCARE HEROES OUTSIDE OF NYU LANGONE AND THE CLEVELAND CLINIC KNEELING IN VIGIL FOR GEORGE FLOYD
I AM PROUD TO BE A PART OF THE NYU FAMILY
Several months ago, Healthcare Workers across the country kneeled in vigil for 8 minutes and 46 seconds (the length of time George Floyd spent on the ground while police kneeled on his neck, crushing his airway resulting in his death). The above photos are just a few of the images from these vigils.
Admittedly, I was at first torn by the idea of massive protests – I whole-heartedly believe in the ideals of this Movement. Yet, the protests are happening during this lethal pandemic. I’d be a hypocrite if I didn’t at least address my concerns. You can see above all our Healthcare Heroes are in masks and the vast majority socially distancing.
However, you can’t exactly socially-distance in these crowds, and clearly some protestors are not wearing masks.
So, I’ve sat with this internal conflict for weeks and I guess months now, really. Was this the proper time for these protests? Should they have been halted given how deadly this virus is, which is spread in the air by being in close proximity to someone with the virus? Were the protests putting our healthcare workers at even more risk?
Further, we know that lower income, minorities have been hit by the virus much worse. Even California’s Department of Public Health states:
The differences in health outcomes related to COVID-19 are most stark in COVID-19 deaths. We have nearly complete data on race and ethnicity for COVID-19 deaths, and we are seeing the following trends. Overall, for adults 18 and older, Latinos, African Americans and Native Hawaiians and Pacific Islanders are dying at disproportionately higher levels. The proportion of COVID-19 deaths in African Americans is more than one-and-a-half times their population representation across all adult age categories.https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Immunization/ncov2019.aspx (Emphasis Added)
That’s a massive, haunting disparity. Of course, all ethnic groups are protesting together. However, when the rate of death in African-Americans is so much higher, it leaves me deeply concerned.
Then, of course, one of the principles of the Black Lives Matter Movement is recognizing and trying to change the disparities in the healthcare system that disproportionately affect the Black community.
If this pandemic was not present, this would not even be a question. Of course I recognize marches, protests, rallies, speeches, events, etc. are needed! Reform is needed, within the police force, the government and society! White supremacy should have died along with Hitler. Nonetheless, it’s alive and well and seems to be growing like a fungus.
Yes, all lives matter, but right now “all lives” are not being systematically threatened. Black lives are, so the focus must be on the Black Lives Matter Movement. (And as I’ve discussed in prior Posts, the Movement is also supportive of ALL marginalized people)
While going over and over about these competing concerns in my head, I turned to the “All Mighty Google“. My Eureka moment came up on the first hit – An article from CNN: “They spent months helping Covid-19 patients breathe. Now health care workers are kneeling for George Floyd” https://www.cnn.com/2020/06/05/us/george-floyd-hospital-protest-trnd/index.html
Last month, healthcare workers in hospitals around the country held rallies and marches in solidarity with the Black Lives Matter protests. On Thursday, June 4th, healthcare workers in both Miami and New York took a knee for 9 minutes in honor of George Floyd.
One nurse at Jackson Memorial Hospital in Miami held a sign that said, “Take it from a registered nurse, when someone can’t breathe help them!”
George Floyd could have been me. Being a doctor, being a hospital worker, that might not have protected me from the same fate that happened to George Floyd…I’m here as black man, I’m here as a frontline provider. I’m here with pain. I’m here with hurt, I’m here with anger. But when I look out at this crowd, I know I’m not here alone.Dr. Tobenna Ubu, a resident physician at Jackson Memorial Hospital
In New York City that day, healthcare workers at several hospitals also held rallies to declare that racism and police brutality are public health emergencies. They also marched with Black Lives Matter protesters earlier in the week.
“We are acknowledging that racism is a public health issue, and together health care workers will come outside of these hospitals to join with our patients. So this is a message of solidarity… Over the course of our history, racism has shown that it is truly the root cause of mortality and morbidity in the United States. It is truly the public health emergency that has taken more lives than any epidemic.Dr. Kamini Doobay, a resident physician in emergency medicine at Bellevue Hospital and the founder of The NYC Coalition to Dismantle Racism in the Health System, who helped organize Thursday’s rallies.
Then on June 5th, workers in Boston held similar vigils. Notably, the vigil was held on what should have been Breonna Taylor’s 27th birthday.
The following day, healthcare workers took their protests to the streets of Washington, D.C. Their signs say it all.
Across the pond, in the U.K. protestors stood along the road leading to the Parliament Building in London to stand-up against racial inequality.
Healthcare workers in New York also attended protests that day. Again, the protest signs speak for themselves, but notably, one worker’s sign REALLY hits you:
“When I’m in my uniform I’m a Hero. Why do I become a criminal when it’s off?”
Members of the 1199SEIU, the nation’s largest healthcare workers’ union, held a walkout at Brookdale Hospital Medical Center in Brooklyn and at NY Presbyterian in Manhattan in protest and knelt for 8 minutes and 46 seconds of silence on June 11th.
That same day, in California a “White Coats for Black Matters” protest honored all people of color who were killed while in police custody and in tribute to George Floyd.
Healthcare Heroes & The Black Lives Matter Movement – “Don’t Shut Down Protests Using The Virus As An Excuse“
At the very least, I know I’m not totally crazy (maybe a tad, but anyway…) because a group of healthcare and medical professionals were concerned about the impact of protests and the virus. However, their concerns were that protests could be shut down!
Thus, more than 1,200 of these professionals signed an “open letter” that “prioritized opposition to racism as vital to the public health, including the epidemic response.” See https://www.cnn.com/2020/06/05/health/health-care-open-letter-protests-coronavirus-trnd/index.html
Many of the signatories work at the University of Washington’s Division of Allergy and Infectious Diseases.
The full context of the letter is below. In summary, this letter provides guidance for both protestors and law enforcement, such as wearing masks, advocating to not hold people who are arrested in close proximity and opposing the use of tear gas for health reasons. Notably, the letter states that as public health advocates, they do NOT condemn the protests as a risk for COVID-19 transmission. Rather, they support the protests as vital to the national public health and to the threatened health specifically of Black people in the United States.
Interestingly, and making a very valid point, Dr. Abby Hussein, an infectious disease fellow at the University of Washington noted that for black Americans this was truly a “life or death matter” and that protestors weren’t taking actions lightly. She further stated:
While everyone is concerned about the risk of Covid, there are risks with just being black in this country that almost outweigh that sometimes. And the sad part is the group that is protesting for their rights are the same people who are already disproportionately affected by the disease…It’s something they’re doing because if they don’t fight for this now, they may never be able to fight for it in the future, because while Covid is right now, and we don’t know how long it’s going to last, white supremacy and oppression has been a long way longer, and we can guarantee that it’s going to continue if people don’t do anything about it now.Dr. Abby Hussein, infectious disease fellow at the University of Washington (Emphasis added)
– Those are some seriously powerful words –
THE FULL LETTER
Open letter advocating for an anti-racist public health response to demonstrations against systemic injustice occurring during the COVID-19 pandemic
On April 30, heavily armed and predominantly white protesters entered the State Capitol building in Lansing, Michigan, protesting stay-home orders and calls for widespread public masking to prevent the spread of COVID-19. Infectious disease physicians and public health officials publicly condemned these actions and privately mourned the widening rift between leaders in science and a subset of the communities that they serve. As of May 30, we are witnessing continuing demonstrations in response to ongoing, pervasive, and lethal institutional racism set off by the killings of George Floyd and Breonna Taylor, among many other Black lives taken by police. A public health response to these demonstrations is also warranted, but this message must be wholly different from the response to white protesters resisting stay-home orders. Infectious disease and public health narratives adjacent to demonstrations against racism must be consciously anti-racist, and infectious disease experts must be clear and consistent in prioritizing an anti-racist message.
White supremacy is a lethal public health issue that predates and contributes to COVID-19. Black people are twice as likely to be killed by police compared to white people, but the effects of racism are far more pervasive. Black people suffer from dramatic health disparities in life expectancy, maternal and infant mortality, chronic medical conditions, and outcomes from acute illnesses like myocardial infarction and sepsis. Biological determinants are insufficient to explain these disparities. They result from long-standing systems of oppression and bias which have subjected people of color to discrimination in the healthcare setting, decreased access to medical care and healthy food, unsafe working conditions, mass incarceration, exposure to pollution and noise, and the toxic effects of stress. Black people are also more likely to develop COVID-19. Black people with COVID-19 are diagnosed later in the disease course and have a higher rate of hospitalization, mechanical ventilation, and death. COVID-19 among Black patients is yet another lethal manifestation of white supremacy. In addressing demonstrations against white supremacy, our first statement must be one of unwavering support for those who would dismantle, uproot, or reform racist institutions.
Staying at home, social distancing, and public masking are effective at minimizing the spread of COVID-19. To the extent possible, we support the application of these public health best practices during demonstrations that call attention to the pervasive lethal force of white supremacy. However, as public health advocates, we do not condemn these gatherings as risky for COVID-19 transmission. We support them as vital to the national public health and to the threatened health specifically of Black people in the United States. We can show that support by facilitating safest protesting practices without detracting from demonstrators’ ability to gather and demand change. This should not be confused with a permissive stance on all gatherings, particularly protests against stay-home orders. Those actions not only oppose public health interventions, but are also rooted in white nationalism and run contrary to respect for Black lives.
Protests against systemic racism, which fosters the disproportionate burden of COVID-19 on Black communities and also perpetuates police violence, must be supported. Therefore, we propose the following guidance to support public health:
- Support local and state governments in upholding the right to protest and allow protesters to gather.
- Do not disband protests under the guise of maintaining public health for COVID-19 restrictions.
- Advocate that protesters not be arrested or held in confined spaces, including jails or police vans, which are some of the highest-risk areas for COVID-19 transmission.
- Oppose any use of tear gas, smoke, or other respiratory irritants, which could increase risk for COVID- 19 by making the respiratory tract more susceptible to infection, exacerbating existing inflammation, and inducing coughing.
- Demand that law enforcement officials also respect infection prevention recommendations by maintaining distance from protesters and wearing masks.
- Reject messaging that face coverings are motivated by concealment and instead celebrate face coverings as protective of the public’s health in the context of COVID-19.
- Prepare for an increased number of infections in the days following a protest. Provide increased access to testing and care for people in the affected communities, especially when they or their family members put themselves at risk by attending protests.
- Support the health of protesters by encouraging the following:
- Use of face coverings.
- Distance of at least 6 feet between protesters, where possible.
- Demonstrating consistently alongside close contacts and moving together as a group, rather than extensively intermingling with multiple groups.
- Staying at home when sick, and using other platforms to oppose racism for high-risk individuals, and those unable or uncomfortable to attend in person.
- Encourage allies who may wish to facilitate safe demonstrations through the following:
- Providing masks, hand-washing stations, or hand sanitizer to demonstrators.
- Providing eye protection, such as face shields or goggles, for protection against COVID-19 and chemical irritants used to disperse crowds.
- Bringing wrapped, single-serving food or beverages to sustain people protesting.
- Providing chalk markings or other designations to encourage appropriate distancing between protesters.
- Supplying ropes, which can be knotted at 6-foot intervals, to allow people to march together while maintaining spacing.
- Donating to bail funds for protesters
- Listen, and prioritize the needs of Black people as expressed by Black voices.
These are strategies for harm reduction. It is our sincere hope that all participants will be able to follow these suggestions for safer public demonstrations, assisted by allies where possible and necessary, but we recognize that this may not always be the case. Even so, we continue to support demonstrators who are tackling the paramount public health problem of pervasive racism. We express solidarity and gratitude toward demonstrators who have already taken on enormous personal risk to advocate for their own health, the health of their communities, and the public health of the United States. We pledge our services as allies who share this goal.
This letter is signed by 1,288 public health professionals, infectious diseases professionals, and community stakeholders.
SO, MY DILEMMA IS NOW SOLVED. I NO LONGER SIT HERE CONCERNED THAT THE PROTESTS COULD POTENTIALLY SPREAD THE VIRUS. THE TRUE VIRUS REALLY IS RACISM & INEQUALITY. IN FACT, THE SEVERE DECLINE IN THE NUMBER OF NEW CASES IN PLACES LIKE NYC FURTHER BACK THIS UP.
I TRUST THE PROFESSIONALS. I BELIEVE SCIENTISTS AND IMPORTANTLY, INFECTIOUS DISEASE EPIDEMIOLOGISTS.
SIDE NOTE: INFECTIOUS DISEASE DOCTORS AND RESEARCHERS SAVED MY LIFE. Back in 2017, I had what was supposed to be a routine revision of the skin graft on my scalp to make it more contoured. Hence, it was supposed to simply involve my plastic surgeon. However, because I’m me, what was supposed to be a simple procedure turned into quite an emergency when my surgeon opened the flap and noticed discoloration in an area of my skull bone. That piece was actually removed during my 5th surgery in 2019 but anyway, back to the point… Neurosurgery and Infectious Disease were called into the O.R. Cultures were taken and neurosurgery instructed that I could be closed back up, I believe with some routine precautions of cleansing the area. Well, as I was only supposed to stay one night in the hospital, I was signing the discharge papers the next morning when an entire Infectious Disease Team swooped in to tell me I was NOT going anywhere! I was advised 3 separate bacteria were found in my skull bone, two of which were highly anti-biotic resistant. Thus, the research team had to study the bacteria at length and decide on a course of action because as I learned later, those bacteria could result in death! Mind you, I had absolutely no symptoms of an infection and it was by pure luck/fate that my plastic surgeon chose that time to do the revision surgery. Since I’m obviously still alive, the course of antibiotics they chose worked. However, not without severe side effects, of course. A story for another day…
IF THERE WAS ANY QUESTION, I ALSO STAND WITH DR. FAUCI
I’ll be summing up this Series in a “Conclusion” Post. God only knows what will happen in-between then and now, but I will conclude this Section by dedicating this In Memory of Rep. John Lewis, who passed from Stage IV pancreatic cancer on June 17, 2020. I could never give his legacy the justice it deserves, so I will simply leave a link from the N.Y. Times here. Rest In Peace, Our “Conscience of the Congress”. You will be so deeply missed. May you always be revered. https://www.nytimes.com/2020/07/17/us/john-lewis-dead.html