I cringe when I hear the word. I especially cringe when I’m asked, always in a high-pitched, much too enthusiastic tone,
“So are you in remission now?”
I know and understand why people ask. I also know that by asking in a gleeful way, it’s because they hope the answer will be a resounding “Yes!”
Personally, the question only forces me to immediately assess, right there on-the-spot how I’m going to answer every single person who asks. Do they want the truth? Are they simply asking because it’s what society has dictated we do when we see a young adult, who doesn’t look “sick”? Also, do I really want to go into the ugly details of it all? How much time do I/we have?
Some potential answers to the remission question include:
Yes! I am cancer free for just about 5 years now!”
Yes! I am cancer free for just about 5 years now… However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred in less than a year. So technically the last tumor was removed in 2015. Since then I’ve had: 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy.”
Yes! I am cancer free for just about 5 years now! However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred less than a year later. So technically the last tumor was removed in 2015. Since then I’ve: Had 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy…I cannot say I will ever truly be “cancer free” because the cancer combined with the treatment changed almost every single aspect of my life. I will never be the same after cancer. Not only do I have a multitude of scars to prove it, but I will never again be free to do the things I loved like swim in the ocean, scuba dive, hike, or even run, which frankly I never loved but having the ability to catch that subway just about to pull away or make it to the bus stop just in time to grab that last bus – nope, can’t do it.
So, while it’s confirmed there are no cancerous cells in my body, do I feel like I am “in remission”? Absolutely not!
I can’t even begin to list all the ways cancer remains with me, but ya name it, and cancer has affected it.
For example, just the most mundane, everyday things:
Getting up in the morning – for me requires immediately putting on sneakers with my AFO, or leg brace, for balance and stability to get out of bed and walk around. Not just that, due to the issues with my left hand, it takes at least 3 tries to even get my sneakers tied. (I tried elastic laces and they would not support my AFO properly)
Getting dressed in the morning – for me, it’s a chore! I have to pull a Macgyver move to get my bra on properly. I constantly put clothes on backwards. Anything with a zipper is a true challenge.
Already what would’ve taken a fully-able-bodied person to do in 5-10 minutes has taken me at least 20.
Looking in the mirror– I must mention that every time I look in a mirror, I’m reminded of cancer. I have a slight eye droop that isn’t even noticeable to others. I see it though! About 1/3 of my scalp is a graft from my stomach so I’m completely bald there.
During the last few surgeries: 1. A piece of skull was removed, so my skull has a noticeable divot. 2. The shunt that was implanted during my last surgery creates a noticeable bump towards the front of my head. Thank god I still have lots of hair and fantastic hair pieces!
Then, because I’m so thin, I can actually see the shunt catheter, which runs from my brain down near my heart and into my abdominal area. I have a massive scar from the skin graft running down my entire abdomen. Plus, now I’ve got two new scars from the laparoscopic surgery to insert that catheter into my stomach. Yay!Oh and my bellybutton is about 6 inches from where it should be.
Of course, all of this is hidden away underneath my clothes, but I have to look at it all EVERY SINGLE DAY and frankly, I hate it. I cannot embrace these scars, like so many survivors do. To me, they’re just constantly reminding me of the trauma.
Showering – I have to use a shower chair and utilize grab bars to get in and out of the bath or shower. I can’t get my left arm up high enough to use my left hand to wash my hair. So I have to use just one hand to scrub in the shampoo and conditioner. It’s also difficult to use that left hand to squeeze the bottles, apply shower gel, etc.
For whatever reason, hot water and steam make me extremely light-headed and dehydrated. So I always need a glass of water nearby, the door must be open to let the steam out and I can typically only shower at night because it makes me extremely tired and/or weak. Again, due to the problems with my left hand, I can never get the towel wrapped around me. So, I have to towel-off in the bathroom and put on a robe or my pjs.
This whole process takes at least 30 minutes, while an able-bodied person could be done in 5-10 minutes.
Now, those few examples are just a taste, a sprinkling of what cancer has done to me physically, mentally and emotionally.
I love that other survivors can embrace the remission word, and I recognize the power that comes with the ability to say, “I’m in remission.” That’s just not the case for me.
Further, I wish I could say, “Cancer doesn’t define me!” like so many other survivors. However, for me cancer is and will always be present despite the fact that my physical body is “cancer free”.
Cancer is and will always be a part of me. It is a crucial piece of who I am today and who I will be in the future.
Plus, cancer will forever lurk in the darkest corners of my mind. Unless there’s some magical potion we discover one day, I will forever have to acknowledge/be aware that a tumor could indeed return at any time. It’s not something I dwell on, but shall I say, “it’s the nature of the beast.” Cancer can and does come back. I’ve already experienced a recurrence. So, I’m literally living proof of this awful truth.
The quote pictured at the top of this Post from ANITA MOORJANI on remission speaks to how I’ve internalized cancer in my life. Although I’ll never be able to say, “I’m done with cancer” I have indeed turned it into my “mission”. Hence, why I began writing this Blog, am working towards publishing articles on my experience, and ultimately a book.
Cancer also led me to finally find my passion working with various nonprofits to raise awareness about cancer in general, but mostly awareness about brain cancer; to serve as a patient advocate with the National Brain Tumor Society; and, to constantly fundraise for more research, treatment options and Dear Lord please, ultimately a cure!
Yes, it took two bouts of brain cancer to find it, but I found my passion-my mission! While every single day is a new challenge, every single day is also an opportunity to work on myself.
So, I believe I’ve found a new perspective on “remission”. It’s my mission.
To Learn more about ANITA MOORJANI, go to her website at https://anitamoorjani.com/. She has a fascinating story. In short, after four years of battling cancer, she went into a coma. Her husband was told:
“There’s nothing we can do for your wife, Mr. Moorjani. Her organs have already shut down. Her tumors have grown to the size of lemons throughout her lymphatic system, from the base of her skull to below her abdomen. Her brain is filled with fluid, as are her lungs. And as you can see, her skin has developed lesions that are weeping with toxins. She won’t even make it through the night,” the doctor told my husband, Danny.
Anita, describes what occurred in the following hours, days and weeks. She had a Near Death Experience (NDE) and details how she chose to return to her body to spread her message-her mission! Obviously, she came out of the coma and left the hospital 5 weeks later with no evidence of cancer anywhere in her body!
To Learn more about the National Brain Tumor Society go to their website: www.braintumor.org
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
As I stated in the prior Sections of this series, when I originally thought of this Post, I had a very basic outline in this lil ol’ brain of mine. Yet, as I began putting “paper to pen” shall we say, I never realized how many of my ideas tied-in together in such detail. So, what was intended to be a single Post became two and then three. Part Three then became a series all touching on different aspects of the Black Lives Matter Movement.
I’m not going to delve as deep in this Section because it doesn’t require too much analysis. What is transpiring is just ALL wrong. Here, I wanted to round out this discussion starting with the looting and rioting that is not a part of this Movement. Although I’m sure if you’re a Fox News enthusiast, it’s all you’ve seen. (I am who I am, and Fox News is blocked on my television. Sorry. Not Sorry). I believe it’s crucial to point out the Black Lives Matter Movement’s key principles though because they are completely antithetic to this vandalism.
You also cannot address the looting without getting political, and that’s unfortunate because this Blog was never ever intended to be political. Yet, I never thought I’d be seeing what I see in the year 2020 either.
Finally, I have to address the right-wingers, who have taken it upon themselves to “rise up” purposely to intimidate, threaten and assault marchers. Again, this Movement is about equality for all marginalized people and not just a black liberation movement. Understandably, the focus is on people of color. However, this is our generation’s civil rights movement. In 2020, we should not need one, but racism remains alive and well here in ‘Merica. Yet, while young black children are groped and pepper-sprayed, needing milk poured on top of them to get the sting out (see photos in my Part 3.03 Post) while rallying against police brutality and unwarranted deaths, white people storm State Capital Buildings demanding freedom to get haircuts, Yes, haircuts, with little to no repercussions.
Looting and Rioting
An estimated 450 businesses across New York City were vandalized and in some cases looted in late May and early June, according to the City’s Department of Small Business.
The Department is still evaluating the damage and doesn’t yet have an estimate for the total cost. Demonstrations sparked by the police killing of George Floyd in Minneapolis have been largely peaceful, but looting followed early protests in several cities, including New York.
My prior post in this series discussed police brutality in depth, yet even law enforcement believe that the vandalism, looting and destruction of property were caused by people “taking advantage of a situation to steal”. (See above citation for full quote).
Organizers from the Black Lives Movement condemn these actions. They are understandably angered by the destruction. These destructive actions go against the message of the Movement, as well as detract from its true message of justice, equality and peace.
In fact, the Movement’s website has various toolkits and resources on how to avoid and/or deescalate violence. They focus on “healing justice” and condemn destruction or harm.
Therefore, what you see below is NOT what the Black Lives Movement encourages, teaches, or supports.
Apparently, Monday June 1st was the worst day/night for looting in New York City with at least 2,330 stores burglarized.
This coincided with a curfew ordered by the NYC Mayor. The last time New York City was under curfew was in February 1945. Fiorello H. La Guardia was mayor and Franklin D. Roosevelt was president!
I certainly never heard of a curfew in New York City! We’re the City that never sleeps. Well now I know why-because the last one was 75 years ago!
I grew up in the suburbs of the City. NYC in the 80’s and early 90’s wasn’t exactly very safe. I remember distinctly being told as a kid to “never look anyone in the face” while walking around the City. I remember those grimy subway cars covered in spray paint. I was dragged around to every single damn tourist attraction when the Irish came over to the States.
Totally Unrelated Aside: 100% Truth. If you are from Ireland you will understand. Especially in the 80’s, but it still happens these days, if an Irish person knew you lived in the States, and they had ANY connection to you (like 6 degrees of Kevin Bacon connection) you’d no doubt one day get a knock on the door. It could be relatives or total strangers. They would simply be standing on your doorstep expecting you to “put them up”. You never knew how long they’d stay, I mean you never even knew they were coming! Nevertheless you’d welcome them in! Offer them a “cuppa tea” or a beer, and set up some makeshift bed. Since you lived close to New York, well you’d have to take them ‘round as well. So, I’ve gone to the Statue of Liberty, for example, umpteen times! Almost every time I was dragged along to show some Irish relative or total stranger, the Big Apple. Yet, my mother put the fear of God in me convinced that if I looked at a stranger in the eyes, we’d be robbed, stabbed, or I’d be kidnapped. Oh, the 80’s… such innocent times.
These are heavy topics so a little lighthearted storytelling is not a bad thing.
Okay, back to burning and pillaging…
According to NYPD officials, on June 1st the vast majority of the looting took place in downtown SoHo. Police were not stationed in the area and were essentially taken by surprise at the concentrated effort to break into the high-end stores in that neighborhood. For example, a 20-year-old female was arrested carrying $9,000 in handbags from Dior. Another man, 21 years old, was caught with stolen “red strappy women’s Gucci shoes,” yellow Dolce and Gabbana sneakers, GStar sneakers, Beats headphones, multiple single D&G sneakers and two wrenches. The majority of those arrested were in their 20s and some were not even from New York, but came from Virginia and the Carolinas – just to steal and cause chaos!
None of this acceptable. In a City already so badly hurting from this pandemic where people are seriously struggling to stay afloat, small businesses were also vandalized. It’s not right to steal anything, but Chanel will survive. The bodega owner who had all the money in his register taken and his windows smashed – he’s only going to hurt more.
Thankfully, in New York at least, these actions have fizzled out.
Now, I do not condone any of this, but at the same time I’ll admit:
If I were a person of color my rage over what has transpired during peaceful protests would have me wanting to smash some windows. TRUST – I’d definitely be throwing some dishes in my apartment at the very least!
This is Where I Get Political, So Feel Free to Disregard My Points Because Again, This Blog Is Not Meant to be Political, but Please, Please, Please Understand Why Politics Cannot Be Ignored
First, I’d like to begin with a general statement and/or personal belief.
Twitter should not be used by the President of one of the most developed nations in the world to address his/her stance on issues. Dear, God, please let there be a female U.S. President before I die!
If you cannot utter more than 280 characters in a coherent, logical manner in a formal address to the press and people of this country, then maybe you should not be President. If more than half of those 280 characters include 30 “Uh” and “Um” with you consistently repeating yourself (i.e. “We’re doing a great job, a great job, just the best job that’s ever been done ever in the history of the world”), you DEFINITELY should not be President.
NOW, onto this Twitter statement by the actual President of the United States. We all know this is not the first time Trump used “inflammatory language” tending towards inciting violence, though I don’t think he’d know what that phrase means anyway…
I imagine the scenario going something like this:
Trumps reads “inflammatory language”. He turns to some crony in the White House.
Trump: “What? I mean, language means words, right?”
Crony: “Yes, Mr. President.”
Trump: “And inflammatory, that’s like fire, right?
Crony: “Yes, Mr. President.”
Trump: “Can words go on fire?”
Crony: “No, Mr. President.
Trump: “FAKE NEWS! WHO SAID THIS, OBAMA? WELL, WE WILL TELL EVERYONE IT WAS OBAMA. NOW, GET ME STORMY ON THE PHONE.”
Crony: “Yes, Mr. President.”
Crony then tries to put his head into a hot oven, but it won’t fit.
OKAY, NOW SERIOUSLY, onto this Twitter statement: The phrase “when the looting starts, the shooting starts” was originally used in 1967 by Miami Police Chief Walter Headley during hearings about crime in that city, invoking angry reactions from civil rights leaders.
Headley “had a long history of bigotry against the black community,” said professor Clarence Lusane of Howard University. “The NAACP and other black organizations had for years complained about the treatment of the black community by Miami police. At this hearing, in discussing how he would deal with what he called crime and thugs and threats by young black people, he issued this statement that the reason Miami had not had any riots up to that point, was because of the message he had sent out that ‘when the looting starts, the shooting starts,‘ ” Lusane said… During the hearings, Headley further stated, “We don’t mind being accused of police brutality.”
Headley’s use of the phrase is thought to have contributed to intensified race riots, including one of the most serious ones in Miami in 1980, when a black man, Arthur McDuffie, was beaten into a coma by up to a dozen white Dade County police officers after he ran a red light on his motorcycle. He later died from his injuries.
Segregationist presidential candidate George Wallace also used the phrase during the 1968 campaign.
Though Trump claimed he did not know the origins of the phrase, he admitted he had heard it used before – yeah by racists!
If I went into detail about every ridiculous Tweet sent out by this megalomaniac, I’d never stop writing. However, the point is very simple:
WHEN YOU HAVE A PRESIDENT THAT DOES NOT CONDEMN, BUT INSTEAD APPROVES OF, UTILIZES (REMEMBER THAT WHOLE BIBLE PHOTO-OP) AND RALLIES BEHIND VIOLENCE USED AGAINST PROTESTORS OR ANYONE FOR THAT MATTER, YOU CREATE A SOCIETY WHERE VIOLENCE IS PERCEIVED TO BE ACCEPTABLE.
THIS LEADS TO MY FINAL POINT.
The Right-Wing Has Come Out In Full Force to Purposely Intimidate, Threaten and Assault Peaceful Black Lives Matter Protestors, Yet They Staged Protests Across the Country Over Their “Right” to a Haircut With Essentially No Police Repercussion
Let’s start with this beauty…
Kathy Bennett, sporting a camo Trump “Make America Great Again” cap, waved a Confederate flag at a Black Lives Matter protest in Branson, Missouri, while she praised the KKK and vowed to teach hate to her grandchildren. As she graciously stated, “I’m teaching them to fuckin’ hate all of you people”. No surprise, she spoke from the bed of a pick-up truck, waved the flag, raised her fist and said, “KKK belief!”
Beyond being simply atrocious is “KKK belief” even proper English, or a real thing? Obviously, the KKK exists, they have “beliefs” but I’m not sure this moron has any idea what she’s talking about.
These are mostly fully-armed men attending, or preparing for Black Lives Matter Movement rallies across the country. Why do they need guns? Why are some in balaclavas? Why do they look like they’re going to war, in full camo fatigues? Uh, you’re not “blending in”. We can see you.
If ya want to go to war, join the armed forces, guys!
Do you see any police surrounding them? Shooting them with “beanbag rounds”? Spraying them in the face with pepper spray? The answer is flat-out: No.
Do you know about “Operation Haircut”? Yes, Operation, as in the military sense of the word, and Haircut! While hundreds of people were dying daily in the NYC Metro Area from the Corona virus, these idiots staged massive protests so they could get haircuts…
Oh, and I guess they were also protesting their “Constitutional right” to play golf. I studied quite a lot of constitutional law, both in undergrad and law school. I don’t recall a single case where it was an absolute right to golf or get a haircut. Yet, what does the Constitution mean these days anyway?
Now, you see police officers in these photos. Are they armed, in riot gear, aiming guns at anyone? The answer is flat-out: No.
These protests were not just held in city streets. They actually swarmed State Capital buildings, like in Michigan, ARMED NONETHELESS! (pictured below)
Let’s be honest… the guy on the left looks like he hasn’t had a haircut or even a shower in quite a while. Not to mention, he’s practically bald. By the way, his name is Brian Cash, and he described his experience at the protest as “awesome”. Naturally.
The guy on the right looks insane, but he isn’t exactly bordering on the Chewbacca look.
So, it’s very clear that protesting “while white” is very, very different to protesting “while black.” If you cannot see the difference then you may need to have your eyes, and probably head, examined.
Yet, an old, sort-of white/orange man sits in the White House tweeting away hate speech towards Black Lives Matter protestors, while armed white men scream and push police all in the name of the new “haircut rights movement”.
Tell me: Who looks more peaceful? Who would you feel safer standing with?
The group fighting for equal rights, for people of color to be seen as human beings, for equal justice?
The guys looking like they’re about to shoot up a State Capital Building, screaming in the face of police, armed – locked and loaded?
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
Get comfortable. Grab a glass of wine. Settle down before reading because this is gonna be a long one! It’a also not the most uplifting post, for sure.
1984 is my favorite book of all time. Even as a young teen, I read several George Orwell books. My father encouraged it. He told me they would help me understand the world, and society as a whole. My father is extremely intellectual, so while most girls my age were reading Nancy Drew books, I read Animal Farm and 1984. I was so obsessed with 1984 that I recall writing a book report on it, and buying the movie on VHS. Yes, I am a child of the 80’s and we watched movies on a VCR.
There’s some racy scenes in the novel and movie, beyond it being an incredibly sophisticated, dark and cynical view of what Orwell imagined the world would or could become. However, I was never censored from those things as a child. It’s very likely why I was always a rather cynical person even when I was young.
If you’ve never read 1984, I cannot decide if this is the greatest time, or worst possible time to delve in. I guess it depends on your anxiety level at this stage. If you have read it, you can breeze through the synopsis. However, it is critical to my point.
1984 is considered a “dystopian” novel. Hence, it will not make you feel all warm and fuzzy inside. Quite the opposite. It was written and published after WWII, while Orwell was dying from TB, living on a remote island after his first wife had died unexpectedly. So, obviously this was not the work of a happy man, but truly one of a tortured soul.
Again, if you’ve never read the novel it’s very hard to sum up in a brief paragraph. However, I’ll stick to the key points and how it relates to our current state of affairs as I see them.
First, the story is set in a world dominated by war, perpetual government surveillance that is both open and secretive (Big Brother is watching), propoganda and a totalitarian state. There are Thought Police that terrorize and persecute any individual/independent thinking, termed “thoughtcrime”. Thus, there is absolutely no freedom of speech or expression. As well, even perceived thoughts against the leader, Big Brother, and the government is strictly forbidden. Yet, the people are not even sure Big Brother actually exists. Although a face touted to be Big Brother is literally everywhere. His image is on posters, projected on screens at work and even inside each person’s home.
I’m going to make it a point to re-read the novel during what seems to be such an overtly insane time in history.
OUR CURRENT STATE OF AFFAIRS
These days, I constantly find myself asking:
What century is this?
Are we actually living out the clear warnings of what could happen if we become like sheep, and permit the rise of a true “Orwellian society”?
I won’t get too openly political in this blog. It’s not the place. However, there are indisputable facts that will likely NEVER be forgotten when we look back at this time in history.
LOOKING AT THE NUMBERS:
Now, the following may seem a bit tedious, but again, it’s KEY to my point and trust me, I will get there.
We are living through the worst pandemic the U.S. has ever seen.
We do not even know the exact death toll, but as of May 1, 2020 the estimated number stands at 135,000; In the area where I live, the number stands at over 30,000 in New York and over 10,000 in New Jersey
As of May 1, 2020 the estimated number of cases across the country stands at 1.8 million
We are now learning of cases spreading at alarming rates throughout Latin America, Africa, the Middle East and again in Asia at an estimated 100,000 per day
U.S. unemployment claims have now surpassed 40 million (this number doesn’t even account for those unentitled to unemployment benefits, i.e. undocumented workers; people who have recently started working, like recent graduates; and, people who have been fired for cause, whether that cause was valid or not)
Those are ALL staggering, frightening numbers! Yet, it’s difficult to grasp the true state of affairs just by reading numbers.
People have been living under quarantine restrictions for months now. Personally, besides the hospital and going to necessary doctors’ appointments, I’ve left my apartment maybe 3 times simply to go grocery shopping. People are in masks and wearing surgical gloves. We are told to stand 6-feet apart from others in public. New York’s formerly bustling streets are ghost towns… or were until several days ago. I’ll get to that.
HOWEVER COULD THIS ALL HAVE BEEN AVOIDED, OR AT LEAST CURTAILED?
The World Health Organization (“WHO”) announced as of January 23, 2020:
“new epidemiological information” from Chinese authorities revealed an increase in the number of cases, of suspected cases, of affected provinces, and the proportion of deaths in currently reported cases of the novel Corona virus (now, let’s be honest – the Chinese government is not exactly known for its open dialogue and expression… Ahem, 1984‘s entire premise)
It was informed about the spread of the virus now in Japan, Republic of Korea, and Thailand, and that one new possible case had been identified in Singapore (clearly the virus was quickly spreading)
“Human-to-human transmission” was occurring
Of confirmed cases, 25% were reported to be severe
It gave China very explicit directives on various measures to attempt to contain the spread of the virus
However, ALL OTHER COUNTRIES were warned that cases could appear anywhere
So, on January 23, 2020, the WHO concluded:
Thus, all countries should be prepared for containment, including active surveillance, early detection, isolation and case management, contact tracing and prevention of onward spread of 2019-nCoV infection, and to share full data with WHO
New York City reported its first confirmed case of the virus on March 1, 2020. However, not a single restriction had been put into place at that point, more than a month after the “WHO’s” warnings. Further, not even one single testing site was available.
Just 5 days later, on March 6, 202035 cases were reportedly linked to just one man in Westchester County, a suburb of NYC where many live, but work in the City. Only then did officials begin to discuss quarantines, BUT only if a person believed they were in contact with that man or knew they had been in contact with someone who tested positive.
Finally, on March 7, 2020 Governor Cuomo declared a state of emergency for New Yorkwith 89 confirmed cases throughout the State. Following suit, New Jersey Governor Murphy declared a state of emergency with 11 cases. Yet still, no testing sites were available. Instead, people were flooding into hospitals in droves.
By March 10, 2020Governor Cuomo deployed the National Guard to a Health Department command post in Westchester County, setting up a satellite testing facility and naming a one-mile, two-week containment area but just in one town, New Rochelle, where there was a clear cluster of cases linked to that one man from that County.
2 days later, on March 12, 2020 NYC Mayor de Blasio declared a state of emergency for the City, stating they projected there would be at least 1,000 cases by the following week. Yet STILL, no testing sites were available.
Then, one day later on Friday the 13th (figures), several specialized schools in New York announced they would close temporarily, and New Jersey Governor Murphy announced that positive cases in the state reached 50. He also said it was inevitable that all NJ schools would close for the remainder of the year, but did not close them.
March 14, 2020marked the announcement by Governor Cuomoof the 1st two virus-related deaths in NY. Yet, in both cases officials were keen to point out these people had severe underlying conditions.
March 16, 2020 was a significant turning point in the NYC Metro area.
By that time there were over 1,000 known positive cases in the tri-state area
Due to the lack of response by the federal government, all 3 Governors of NY, NJ and Connecticut announced a tri-state effort to curtail the virus spread and ordered:
gyms and casinos would close March 16 at 8 p.m. until further notice;
bars and restaurants would close for sit-down service and would only be open for take-out delivery starting at 8 p.m. until further notice; and
gatherings of more than 50 people were banned until further notice
New Jersey schools would close March 18th for “at least two weeks”. Also, all non-essential retail, recreational & entertainment businesses were to close on the 16th after 8 p.m.
FINALLY, Governor Cuomo planned to open drive-thru testing sites in Long Island, Staten Island and Rockland County. NYC Mayor de Blasio ordered 5 drive-thru testing sites in the City (yet, the vast majority of NYC residents either don’t drive or own cars…)
The NYC St. Patrick’s Day Parade was cancelled for the 1st time since 1762. Also on March 17th, Mayor de Blasiowarned of a possible “shelter-in-place” order. By then, there were at least 900 confirmed, known cases in NYC alone. At that point 7 NBA players were also known to have the virus.
March 18th was a bleak day for New York. Governor Cuomo announced more than 1,000 new cases had been confirmed overnight! In NYC alone, cases had now risen to over 1,870! The Governor ordered that all businesses were required to have at least 50% of their employees work from home, excluding essential workers.
By just the next day, with significant testing now being conducted in New York, the States’ cases totaled at least 5,638 and 3,954 of those were in NYC. New Jersey confirmed another 300+ cases overnight!So, by March 19th, the tri-state had at least 6,538 known cases, 48 deaths that included 4 people in one NJ family!
Then by the following day, New York State confirmed 8,300 cases with at least 5,600 in NYC.
On March 21st, NYC saw 3,000 additional cases with Governor Cuomo attributing that to an increase in testing.
If that wasn’t shocking enough, NY State added 5,000more positive cases the next day, and NYC now had at least 10,764known cases with at least 1,800 people hospitalized and at least 450 in ICU. Further, by this point NYPD, FDNY, NYC’s subway and transit workers, prisoners and corrections officers in the City’s notorious Riker’s Island jail, and of course health care workers were all reporting significant numbers of cases.
Also on March 22nd, the President finally announced federal action to assist, New York, Washington and California (the 3 hardest hit states) and that the National Guard would be sent to NY, as well as 1,000 medical beds
***NOW WE GET TO THE 2-MONTH MARK, AFTER THE “WHO” HAD MADE ITS ANNOUNCEMENT, WARNING OF THE VIRUS’POTENTIAL TO SPREAD AND HOW COUNTRIES SHOULD PREPARE***
– By March 23, 2020 –
Governor Cuomo mandated all New York hospitals to increase their capacity by at least 50 percent, although they should aim for 100 percent!
5,707 new cases had been reported, bringing the State’s total to 20,857, with the majority of the cases (12,305) in NYC. However, later that day the City added hundreds more cases, bringing the total to 13,119 — with the death toll in the five boroughs hitting triple-digits after climbing to 125 by the end of the day.
NJ announced 935 new cases, bringing that State’s total to 2,844 and 27 deaths.
Connecticut’s cases rose from 327 to 415. Two more people died in the state, bringing their total to 10.
The rest, they say is history… and not one the history books should ever look upon favorably, but rather with disgrace.
If this all doesn’t INFURIATE you, considering how many lives could have been saved, considering how early, simple precautions could have eliminated so much pain, considering the toll on our healthcare workers & essential workers, well then I have no words for you.
HOW THIS ALL RELATES TO ME, AS A BRAIN CANCER SURVIVOR, AND TO ALL THOSE WITH UNDERLYING CONDITIONS
How this applies to my personal life is startling when I look back. It almost leaves me speechless, but clearly I’ve got A LOT to say on the matter.
First, I underwent surgery January 17th. So, I was in ICU when the “WHO” made their recommendations. I doubt I would have even known of the warnings. Nevertheless, I was in a very critical recovery period from my 7th brain surgery.
From ICU, I went straight to acute rehab. I remained hospitalized until February 12th. So, officials knew the virus was out there. Cases of the virus had already been confirmed in Italy (or to be more frank-this wasn’t contained to Asian countries) and the numbers kept rising. At the time I was discharged, Italy was officially under a state of emergency. Yet, no one warned me to stay home, wear a mask or utilize any precautions.
TO BE CLEAR: I do not in any way blame my doctors for this. There were no guidelines in place. There were no tests available, to my knowledge anyway. I frankly don’t where the disconnect occurred, as I imagine hospitals and doctors follow the “WHO”. Yet, without governmental policies or procedures in place, what could have been done?
Moving on, I had been cooped up for nearly a month in the hospital, but came out feeling strong, resilient and ready to just get moving again! However, there were numerous post-op appointments and several appointments I had to make-up that I’d missed while in the hospital.
My first was an MRI and post-op appointment with my neurosurgeon, which was in the Main Hospital Building on February 26th. Now, my hospital is one of NYC’s largest and was frankly, bombarded by virus patients. Yet again, I really was not informed about the potential of the virus hitting us. There was so much rhetoric about how this was a “Chinese virus” and that it was no worse than the common flu. Yet, I was less than a month and a half out of major surgery, and had been living in a totally sterile environment in the hospital. In the streets and in the hospital buildings, NO ONE was wearing masks, practicing social distancing or in quarantine, from what I knew. So, I walked around the hospital and NYC freely.
Then, on March 6th, I landed in the E.R. I fell and hit my head so I was quite concerned about my poor brain. Was something wrong with the shunt? Was I suddenly declining again? Lucky for me, I texted my neurosurgeon and he had his resident take me back very quickly. I got an isolated room, but I noticed things seemed a bit strange in the triage areas. I’ve been to my share of E.R.s and they never look “normal”, but I remember saying to my husband that things looked really off. Now I can’t assume, but we know the virus hit NY well before that first case was announced March 1st. I shudder to think of that day, not just for my health but also my husband’s who being the wonderful man that he is also came to the E.R. Anyway, my CT was clear and I was discharged God knows how many hours later.
On March 9th, I had my outpatient PT and OT evaluations. I was so excited to get back to a regular workout schedule to continue getting stronger. Little did I know, I would not return!
As an aside, in that facility people tend to be immune-compromised. The cancer center is there. Plus, those undergoing PT & OT can be quite disabled because I treat on the brain injury floor.
Two days later, I had multiple appointments in different buildings of the hospital. Again, no one was wearing masks. I certainly wasn’t.
On the day I’d typically be celebrating my Irish heritage (and not by getting drunk and puking all over the streets, like people tend to do on St. Patrick’s Day) I marched instead into the Main Hospital Building on March 17th for an EEG and to see a general surgeon because I had serious digestive issues ever since the shunt surgery in January. At that point, the surgeon was in PPE but neither my husband nor I was instructed to wear a mask. If you look back at my timeline, by that point there were nearly 1,000 confirmed cases of the virus in NYC alone!Plus, to add fuel to the fire, 1,000 cases were then reported overnight!While the announcement had come on the 16th that drive-thru testing sites would be put in place, they weren’t set up the day I strolled into the hospital. So, where were people going if they suspected they had contracted the virus? The E.R. And where were they being treated? The Main Hospital Building!
I also have to admit that I “drank the Kool-Aide”. I believed people who told me this would just be like the flu. That this was America acting hysterical again, like when they warn of snow in winter… yeah, it’s winter and it snows in the Northeast. I made fun of people literally fighting over toilet paper.
I travel constantly so I never worried about Zika, Dengue fever or malaria. I was a scuba diver and wanted to dive with sharks and sting rays, and I did. I never had a fear of flying. I felt safer in a plane than in a car. That was all even before cancer. So, my MO was always, “You can’t live your life in fear”.
Well, I will tell you that after all I’ve learned I should have been scared to hell of this virus!
Where virus patients were kept in NYC. 1.) A navy vessel, the U.S.N.S Comfort, docked at a Manhattan pier March 30th. Originally, it was meant to relieve NYC hospitals overrun by virus patients and accept non-virus patients. After severe scrutiny, it chose to accept virus patients. However, the 1,000-bed hospital ship treated just 182 patients. 2.) A portion of the 68-bed field hospital, created to treat Covid-19 patients from the Mount Sinai hospital system located in Manhattan’s iconic Central Park. 3.) A “surge tent” at NY Presbyterian-Weill Cornell for patients with “mild respiratory illnesses”. 4.) Another iconic NYC space, the Jacob Javits Center was converted into a military-run field hospital
SO WHAT DOES ANY OF THIS HAVE TO DO WITH 1984?
It’s clear at least in my eyes, that vital information was kept from the general public by government officials, regardless of what party they belonged to.
It’s known that four U.S. senators sold off stocks after receiving sensitive briefings in late January about the emerging threat of the coronavirus, sparking concerns that they put safeguarding their private finances before their duty to protect public health.
Senator Richard Burr, a Republican from North Carolina, and Kelly Loeffler, a Republican from Georgia, both completed their sales at a time when the Trump administration and GOP leaders were downplaying the potential damage the virus might cause in the U.S. and before drastic stock-market plunges set off by the pandemic… Two other members of the Intelligence Committee, Senator Dianne Feinstein, a Democrat from California, and Senator James Inhofe, an Oklahoma Republican, also sold stock after the briefings, according to financial records.
Burr is Chairman of the Senate Intelligence Committee and receives frequent briefings about threats facing the country. Loeffler sits on the Health Committee and is married to the chairman of the New York Stock Exchange, Jeffrey Sprecher. Huh, convenient!
Besides selling shares for millions of dollars, we know high-ranking officials in our government:
Were briefed as early as JANUARY of the threat the virus posed
We know of at least these 4 Senators (and I don’t doubt there’s many others) who made significant monetary gains from that information all while us-the people they swore to serve and represent-suffered and died excruciating deaths! While the economy imploded. While millions of hardworking Americans lost jobs. While invaluable doctors and nurses lost their lives by simply trying to save the lives of others. While families struggled quarantined in their homes for months, and still are! While we “the people” were uninformed and frankly misled to believe this virus would not affect us.
Frankly, it disgusts me that our officials were briefed in January yet NOTHING WAS DONE TO PROTECT US.
I very easily could’ve contracted the virus and given my condition at the time, it could’ve been extremely bad. I could have wound up on some Navy ship docked where I could see it from my home. Yet somehow by the Grace of God, I didn’t. My fellow cancer survivors and those undergoing treatment could have just as easily gotten very sick.
Our government made a strategic decision to hide vital information from its people, information that was literally a matter of life and death. Not only that, despite this knowledge they failed to put a single precaution, restriction and/or regulation in place to protect its people. Yes, that generally falls within the purview of the States. That’s not the point though.
So, what’s our current state of affairs got to do with Orwell’s bleak vision of the future? Well, everything.
Misinformation, or lack of information
Failure to care for, protect and serve the common man – Only the rich and powerful with allegiance to the current government matter
Totalitarian rule – a system of government that is centralized and dictatorial and requires complete subservience to the state
A society in which any criticism or questioning of the government is immediately silenced by deeming it “fake”
A country where the 2nd Amendment is praised and must be protected at all costs. Yet, the 1st Amendment is absolutely suppressed
SO THIS IS WHERE I WILL END THIS POST. HOWEVER, EXACTLY WHERE I’M LEAVING OFF IS EXACTLY WHERE I WILL BEGIN MY NEXT BECAUSE WHAT IS HAPPENING IN THIS COUNTRY RIGHT NOW IS AS EQUALLY DISGRACEFUL AS EVERYTHING OUTLINED IN THIS POST.
I grew up as many Irish children do. I never worried about being grounded or punishments. (Okay, many Irish kids did get punished, but not my point here).
No. What I got was the “Irish guilt” – the constant feeling of how I was disappointing my parents, not doing what was expected of me and/or a whole assortment of ways in which Irish parents make you feel like you’ve committed felony murder. Many times when I hadn’t actually done anything wrong, mind you.
They say there’s a stereotypical “Jewish mother”. Well, Irish mothers are that times 10! Yes, an Irish mother will love her children with every ounce of her being. Yet, don’t ever cross her, or do anything that she would interpret as crossing her. She will guilt you until you bleed – even if you’re sick.
Given recent circumstances that arose within my family, I was compelled to write this post.
While this issue has come up countless times, this particular situation truly hurt my heart because as the perceived “sick” person – it’s not about me. It never is. It’s ALL about EVERYONE ELSE!
This unfortunate truth relates to family, friends, work, and on and on. However, this particular post is focused on my relationship with my immediate family.
I cannot begin to count how many times my mother has said, “I’m just worried sick over you” or “I can’t sleep I’m so beside myself over you”. Not once is it ever about how I’m feeling. It is ALWAYS about her. As for my father, he will not visit me in the hospital – absolutely refuses. Apparently, “he can’t handle” seeing me in the hospital. He does not call. He occasionally sends a text of a photo of our dog, which my parents take care of when I’m hospitalized. I may get an email or two, if I’m lucky.
Yet, because he is a doctor he constantly has an opinion on the course of action my doctors take, and it’s usually something I do not agree with.
Just one instance that exemplifies this perfectly is when I consulted with a particular neurosurgeon at the hospital where my prior surgeon had retired. He was the Chief of Neurosurgery and a man I loved and respected. We had a fantastic relationship, so trusting my brain to anyone else was terrifying. While this consult was with someone who trained under my former surgeon, to say he paled in comparison is a huge understatement.
This man really only spoke to my husband and father, while he either ignored both my mother and I, or scoffed at our questions. He proposed an extremely invasive procedure. Admittedly, I ultimately did have the procedure but only after a much less invasive procedure failed to remedy the problem, and I had it performed at another hospital. Anyway, I asked very direct, difficult questions that this surgeon did not want to answer. Yet, when my father asked the same questions, he indeed answered them. He constantly diminished my concerns – the number one concern being that he proposed inserting a shunt into my brain that would drain fluid into my abdomen. Yet, when I questioned him on the fact that we were uncertain if there were cancerous cells in my brain and he was now proposing to drain this brain fluid into my abdomen, I was told, “You don’t need to be concerned with that. It’s unlikely”.
Well, sorry but “unlikely” is not good enough! What if there was cancer in my brain? What then? Oops, we made a mistake! Nope. Just. Nope. Not. Good. Enough.
I say all this to say that my father lit into ME after the consult stating “how obnoxious” I was to the doctor – as if I was to blame for his arrogance, male-chauvinist attitude and total ineptitude! I may not have gone to medical school, but I did earn a law degree, passed 2 bar exams and knew I was asking the proper questions for my own protection. I’m no idiot, especially when it comes to my health. Yet, my father chose to try and make me feel guilty, for some unknown reason, despite how openly disrespected I was by a stranger. He chose to berate me about pushing a doctor on serious issues related to MY health!
My father and this surgeon totally played into one another’s “God complex”. That ish does NOT fly with me though. Especially the male dominant BS. Not to mention, this man had us wait over 3 hours to even get back into the exam room and literally ran out the door with not even so much as a goodbye! The four of us just stood around looking at one another, asking “Is he coming back?” The answer was, No, he did not come back. About 5 minutes later his awful nurse entered the exam room as if nothing had happened. Needless to say, I found another surgeon who is so kind, gracious and much more competent.
Side Note: I did file a complaint with the patient advocate over this doctor’s behavior. He called and apologized, but clearly he did not even recognize how poorly I was treated. How could I trust my brain with someone so unprofessional and unaware of his behavior?
Now my mother has her own unique brand of guilting me because of my sickness. I am reminded pretty much daily that I’ve been sick. The constant barrage of questions: “How are you feeling today?” “Did you have a seizure?” “How is your hand?” “Are you walking okay?” “Any falls?” After 6 straight years of this, it’s gotten pretty old. Despite telling her that I don’t need to be reminded of my condition constantly, all I get in response is, “Well I’m just so concerned about you.” While that may be true, I’m 40 years old, not 4 years old. Also, Irish people LOVE misery. Walk into a local pub back there and there’s 3 topics. The first: Who died. Second: Who is sick, what do they have and a list of 10 other people who had it or have it. Finally: The weather. Always the bloody weather. It’s either “freezin” “roasting” or “lashing rain”. There may be some gossip about this one or that one, but guaranteed it always comes back to those 3 topics. It’s like misery is in our DNA or something.
Not only does my mother’s guilt involve feigning concern but also claiming she’d do anything to help. However, if I actually asked for help, I’d get 300 excuses why she “just couldn’t”. And every 300 of those excuses would ultimately circle back to one thing – work.
What it all boils down to is simple: my entire life, all my parents did was work. I often wondered why they even had a child because in their list of priorities it would be: 1.) Work; 2.) Each other; and, 3.) Me.
Do my parents love me? 100%. Have I ever wanted for anything material? Never. Did they do the best they could? Yes, but the caveat was always and forever will be, as long as it doesn’t conflict with work or requiring that they leave the 2-mile radius of their clinic/home. Yes indeed, their practice is in the home I spent the better half of my childhood in.
My parents are the epitome of the immigrant mentality that “America is the land of opportunity”. Yet, in order to build a successful practice, they’ve worked their fingers to the bone and still have not retired despite being in their 70’s. They do not believe in vacation or days off. And sick days? Forget it. So in a nutshell, this was the environment I was raised in.
Of course, when I was diagnosed with brain cancer over 6 years ago their work did not slow down. In fact, I was guilted into the notion that now, they’d have to work even harder to supposedly support me. I have a husband with a job. I don’t live beyond my means. I get disability. Has their financial support helped? Definitely, but as I mentioned, it comes at the price of constantly feeling guilty that because I got sick, they still have to work.
On top of all this, add my husband’s Irish family and you’d swear I only got sick to spite all of them! It drives his sisters insane that he loves me so much. One is in the midst of a divorce and the other… I could write a book on the dysfunction of that marriage! While my husband will always be a Mommy’s boy, I know deep down they all blame me for being sick and not giving him a child because well, that’s all women are supposed to do. Forget a career or anything except push out some kids. Since I was diagnosed just a year and a half into our marriage, I am once again the guilty party for failing at my “womanly duties.” It’s safe to say his sisters and I equally despise one another, but then again – my sickness is ALL about everyone else, right?
At this point, I’m done with managing everyone else’s emotions, feelings, etc. about MY health! I am no longer going to speak to anyone who I do not trust with my emotions. I will remain silent because as the quote below states: I am tired of fighting. So very, very tired.
Today was Mother’s Day in the States. Obviously, with a pandemic in full blast people celebrated a bit differently. Some families are together, so maybe mom got breakfast in bed or a nice lunch set out for her. Many families are separated though, so they turned to Skype, Zoom or an old-fashioned phone call.
Presents or flowers were likely shipped. Perhaps some gifts, like mine for my mother, dwell “in the cloud” of the “due to the coronavirus your item may be shipped at a later date than normal and we will continue to keep you updated” category. Maybe others were home-made, well because we’re all home!
I am not a mother, and an only child. All my family besides my parents is back in Ireland, so no aunts or cousins around. Beyond my amazing friends, the only other woman directly in my day-to-day life is my mom.
My mother is incredible and literally the hardest working person I’ve ever met, and she’s 70+. We did the old school conversation over the phone today. It was hard not seeing her, but it doesn’t bother either of us much. I’d say though she’s a bit high-strung, (sorry, Mom) we’re quite alike. Neither of us become pit-bull, Fighting Irishwomen until you /the situationoffends us or our ideals. Otherwise, we’re both intelligent, rational people. I think so anyway.
I won’t get into much detail, but I don’t have a fantastic relationship with my in-laws. We’re all opinionated, stubborn, pit-bulls. Don’t get us angry. It’s ugly. You’d think being so similar we’d get along. Nah. No. Nope. As the line in the movie My Cousin Vinny goes, we don’t “blend”.
Not having a child is an underlying issue. By not giving my husband and their family a child, I’m really of no worth. “Being a mother” is the only thing they do. As a couple with no children then, my husband and I naturally matter less to his family. The fruitless, barren ones! His entire immediate family also all live within 5/10 minutes from each other. We live a nice 40 minutes away. Thank god! Nevertheless, they’ll constantly be together and my husband never gets a call to come by.
The reason, in my opinion is simple: ME. I’ve achieved in blackballing my poor husband from his family because his sisters switch-hit on who hates me that particular day. First, they don’t want to be around the “sick person” or “expose” their children to a sickie like me. Add on the fact I don’t have a child, and it’s safe to say it’s been less than an ideal situation.
Well today, on Mother’s Day (and the irony does not escape me) after a huge argument amongst my husband and his family, I was screamed at by an insane SIL to, “DIE!” Yes, I was told to leave my husband, leave their family alone and “DIE!” I wasn’t even involved in the argument! Yet, who does the blame fall on? ME. The fruitless, barren one worth less than, hmmmm, dirt.
It’s hard. No, it takes every single bone in my body not to stoop to that level and just go after her and all his family, who would want nothing more than to see us apart. As an aside I joke, although I’m not really joking, that they’ve probably got a line of women ready for him hoping I do in fact die. Every surgery I go in for, they’ve likely got the rosary beads out, because after all they’re such devout Catholics, praying this time I finally go.
My husband is so much more important than their evil, petty attempts to drive us away from each other. However, if I was in fact to succumb to this horrid disease one day, there would definitely be an all-out, no holds barred extravaganza!
So, here’s to all us fruitless barren women out there! Let us enjoy sleeping in, doing what we want when we want, vacations when we choose, oh and quiet! Lots and lots of quiet. And to any single women reading this: Find a man with ONLY brothers!
Since my diagnosis in 2014, I’ve had some type of brain surgery…every… single… year with the exception of 2018. So, in 2019 just to make up for it, I guess, I had to get 2 “surgery notches” under my belt!
I’m now one week out from my 6th brain surgery. It was something termed a “Burrhole Craniotomy”. In real-people speak, I basically had a GPS-guided needle inserted into my skull to drain fluid from a lesion/cyst that sat in my brain for years caused by the insane amount of radiation I received between 2014 (initial diagnosis) and 2015 (recurrence). When I met with my neurosurgeon’s N.P. before he came in to discuss our options, I basically ticked-off every box for issues related to fluid in my brain. Yes, including being “ticked off” at everyone and everything. Yet, she asked politely, “Are you feeling more irritable?”. My husband had a good laugh at that one. We both answered with an emphatic “YES!”
Prior to the surgery, I became extremely angry and depressed. I never really had those feelings for such an extensive period without them being caused by some horrid med… ahem, Keppra, Dexamethasone. Nope. This time it was all me. Facing a 6th brain surgery, admittedly, gives me some leeway to feel so utterly miserable. I am only human after all.
I know full-well going to that “dark place” isn’t just damaging to my mental health, it makes me physically weak. I need to go into surgery healthy in all aspects-physically, mentally, emotionally, spiritually, etc. Yet, I couldn’t pull myself out of the darkness.
The one thing I was 100% confident in was my neurosurgeon. If I ever turn this into a book, I will absolutely name him. However, for now we will remain anonymous. I know for sure he truly lives and breathes by the Hippocratic Oath, most especially
the duty to “do the least harm”; and,
“there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.“
Fortunately, I’ve made wonderful connections within the brain cancer community since my diagnosis. I have no doubt some of those connections are why I’m still here. They’ve led me into the exam rooms of some of the most impressive physicians in this country. My neurosurgeon is one of those people.
So, despite all my neurological issues, including losing total use of my left hand, falling on the daily, constantly losing my memory or at least feeling such brain fog I literally forgot the year, I knew my doc would get me through this. And he did.
Without getting into too much detail, I had consulted with another surgeon first. Wait, I actually wrote a whole post about that experience. Oh well… “blame brain cancer brain”Totally off topic – Can we stop saying, “oops! Must be Mommy brain!”? No, like I’m literally missing a part of my brain that was infected with cancer – twice. Then, it got lots and lots of radiation beamed into it. We just forget shit! Mommies, don’t hate me, please.)
So, that other surgeon had proposed a much more invasive surgery. I was incredibly uncomfortable with his plan. I was very open that I was going for another consult at another hospital. The hospitals in NYC seem to compete with one another like spoiled school girls. I’m not too too concerned with that B.S. I’m trusting my brain with whoever is going to stick by that whole “least harm” idea.
My surgeon utilized the least invasive means possible, I only spent one night in the hospital. My left hand is working again. I’m walking better. The brain fog is still around, but I’ve been on Percocet the last few days. I’m not quite so “irritable “. My husband is very happy about that! I’ve got another surgery notch under my belt. Thankfully, I’m finding myself again too.
There are a ridiculous amount of medical terms you learn as a cancer patient.
There are about 130 different types of brain tumors alone. Never mind having to learn about the areas of the brain the tumor may affect, then what part of the body that area of the brain it controls, and on and on. I practically feel like we, as cancer patients, should be awarded medical degrees!
As an attorney, so much of my job involved research. Since my diagnosis nearly 6 years ago now, I raise issues with my doctors to the reply of, “Oh, that’s a very good point.” I’ve sent my doctors articles about new research, trials and information they admittedly were not aware of prior to me bringing it to their attention.
Yet, after receiving my discharge papers following my sixth surgery, I learned a whole new phrase, “bur hole craniotomy”!
Obviously, prior to the procedure I knew what I was going in for – a needle was going to be inserted into my brain to drain the lesion/cyst in my head that’s constantly filling with fluid, causing swelling and pressure to build up in my brain. That pressure then causes me to lose my balance and fall, causes unbearable fatigue, increases my seizures and makes me a prisoner because I cannot leave my home safely.
On December 5th, I underwent the procedure. Immediately after, I felt great. I regained use of my left hand. I walked around without my wretched cane. However, I experienced and am still battling intense migraines. The recovery was short-lived because the fluid has returned.
It’s pretty surreal being back home after my 7th brain surgery, a full week in ICU and then 2 1/2 weeks in acute, inpatient rehabilitation. It was strangely very bittersweet leaving rehab, where I had a very set schedule, was taken care of so wonderfully and most importantly, able to remove myself from reality. As the fantastic ‘90s movie says, “Reality Bites”.
Room With A View
View from my window at inpatient rehabilitation.
When I was initially told I’d be in acute rehab for more than 2 weeks, I had a pure and utter meltdown. I couldn’t imagine being cooped-up for that long without my husband, my dog, my own bed, any semblance of privacy, and on and on. Ugly tears everywhere! So many, many ugly tears
Yet, now that I’m out and back home, I feel completely overwhelmed. Piles of mail sat on my desk. Things weren’t in their “proper place”. (I’m no neat-freak but I’m very Type A when it comes to where things are placed, kept, etc. I don’t know, blame my parents… 🤔🤷🏻♀️) I had to make countless follow-up appointments. I had to call the apartment management because yet again, some dirtbag threw their cigarette butt onto our terrace. My darling husband fell for one of the easiest scams ever, and the laptop only I use got hacked. I not-so kindly asked him if I could introduce him to a Nigerian Prince.
Then came the real kicker! I received a letter from a debt collection law firm (the lowest of the low on the attorney food chain) threatening to file suit against ME because the home healthcare agency I was forced to use back in 2018 never paid the company THEY contracted with to give me home PT & OT. ***If you are reading this and are a debt collection attorney, I make no apologies. As an attorney myself, I’d rather chase ambulances***
Well, that of course set up a whole chain of phone calls to my insurance, my family attorney and the law firm threatening suit. Then, I proceeded to look back on all my prior correspondence with the home healthcare agency and the company seeking to sue me because they hadn’t been paid. Finally, I wrote a lengthy email to all parties, copying my attorney, having to “make my case” in writing how I was in no way responsible for this money, threatening to sue the firm for harassment, and underscoring that the Court wouldn’t look too favorably upon some firm trying to make a recovering cancer survivor pay almost $5,000 because their client signed a contract with a less-than reputable home healthcare agency.
So, yeah, reality really f***in’ bites! While I imagined coming home would be so joyous and relaxing, it’s been anything but relaxing. Who leaves the hospital after nearly one month and actually wants to go back???
I know things will settle down, and I’m being a bit dramatic. My fellow patients I met during my stay, who will remain hospitalized for some time would probably kick me for wishing I was back there. However, there’s something very distressing about returning home, no longer just one “call bell” away from help. I was so fortunate to have been in such a top-notch facility. There was always someone to talk to, who understood everything I was going through. Whether it was a social worker, a therapist, a nurse or fellow patient-someone was constantly there to support me. They were right there in the trenches with me, and there wasn’t ANYTHING those nurses, aides, or doctors hadn’t seen or heard before. It was a total judgment free zone.
So, now I’m out. I’m back to the real world. Maybe I just need to chill out on my couch with some friends, puff a lil of my medicinal med not permitted in the hospital, go grab snacks at a gas station and start dancing to some cheesy music. (If you’ve seen the movie, you’ll get the reference)
After a week in ICU following my 7th brain surgery, I was sent to inpatient acute rehab. Since they seriously work me here, this won’t be a long, deeply reflective post. I’m definitely “on the go” constantly here.
Nevertheless, I did think it was important to post about my experience thus far.
This is actually my 2nd stint in an acute rehab facility. In fact, back in 2017 when I had to be transferred to an inpatient rehabilitation facility my doctors tried to get me into this particular rehab. Unfortunately, there were no beds available and thus, I wound up in a very good facility. However, it’s nothing like this experience!
I’d say I’m currently in the “creme de la creme” of neurological rehab facilities. It’s pretty rare to have absolutely NO complaints about a healthcare facility these days. Yet, I don’t have a single issue and can only sing the praises of every single staff member. From the doctors to the men who clean the floors, everyone is truly amazing.
I’ve been here for two weeks now, and have another half week ahead of me. Okay. I am getting a bit tired of the same food options, but if that’s my only gripe-that’s pretty darn fantastic!
Before this last surgery, I could barely walk. I was in constant fear of falling, and for good reason. I was basically falling every day. I had no balance. I slept until noon, on good days! My body was so fatigued it took every once of energy to simply get out of bed. Then, I’d merely move to my couch. Let’s just say I blew through countless Netflix movies and series. Around 8:00 p.m. I’d be asking my husband to bring me back into the bedroom. I’d take a quick shower or bath, and I was done.
My day here includes:
•Wake up at 8:00 a.m. & eat breakfast
•Start physical therapy around 10 p.m. and work on balance exercises, walking with and without my cane (Yes!), using the treadmill, walking along the unit, etc.
•Speech/Cognitive therapy immediately afterward
•Lunch at noon
•Then, occupational therapy where I work out my weakened left arm through stretches and a state-of-the-art robot that measures my range of motion. It’s pretty cool, I have to say. We also work on “Activities of Daily Living” (ADLs) like how to step into the shower safely, cooking a meal or doing laundry. Now, I’m doing squats to pick things up and not dropping everything I put in my hand.
•Once my standard therapies are over, I can join a gym class, go to art therapy, and/or horticultural therapy (potting an array of beautiful plants and learning how to care for them).
I can achieve all of this before 4:00 p.m.! Prior to this surgery, I was barely able to function never mind participating in so many amazing activities before the sun goes down.
I’d never imagine eating dinner at 4:45, but it’s the early early bird special here!
By the time I finish dinner, it’s time to shower-up and start getting ready for bed. Who knows? Maybe this night owl just may learn to become an early bird… Realistically though, probably not.
It’s amazing what these dedicated professionals can do for people like me with such extreme neurologic deficits. It’s even more fascinating what they do for people much worse-off than me.