There are common thoughts in the journey of cancer and survivorship. From diagnosis through treatment, I know that all that I wanted to know was long term survivorship possible, beyond the five years that I constantly kept hearing about? Strangely, once I completed my treatments, combined with achieving the status of remission, my thoughts quickly turned from long term survival, to when does my life get back to what it used to be, “normal.”
While the cancer experience is definitely physically demanding, enough attention does not get paid to the emotional and mental toll that is taken on the patient. Sure, there is fatigue, fear, doubt, stress, paranoia and more that swirl around in the mind of someone going through cancer. One thing that we do not realize happens during the time from diagnosis through treatments, unbeknownst to us, we lose something very important to us. And we do not recognize it until after we are done with treatments, yet it plays a very important role in us moving on in our lives, in our survivorship, control. We go from doing what we want, when we want, to, you have to be here at this time, we are going to do this at this time, and a patient has no control of that. Decisions are no longer made by the patient, but by those providing the care. And it is in our best interest to do as they are recommending if we want to reach remission.
When we lose things, such as our car keys, our wallet, material things, it produces an inconvenient anxiety. When a loved one is “lost” or passes away, we mourn or grieve. The loss of control then, I feel would fall in between those two extremes. Without any thought, once treatments are over, the “keys” are handed back over to us, and we are supposedly back in control. But why does it not feel that way then? If the treatments and the tests are done, when does it start to feel “normal” again?
Control and normal are two different things, yet combined create an interesting dynamic, an experience that must be dealt with, and accepted. Soon, we realize what that loss of control did, and what it took from us, normalcy. And once we realize what we considered “normal”, and that particular “normal” is gone forever, we soon come to terms, this permanent loss, is similar to the loss we experience when someone passes, and must be grieved. We need to give ourselves the chance mourn what we looked at as what was normal in our lives, before the cancer.
Unlike the passing of a loved one, we have a hope or even a second chance with remission at normalcy, but something we in the circle of survivors call “the new normal.” As a cancer survivor, we all get this new normal, and it is exactly that, new and whatever we want to consider as being typical in our lives going forward.
What exactly is normal? What do you consider normal? What makes things or life normal? If normalcy is based on never seeing doctors again once in remission and totally forgetting you had cancer, nope, not going to happen. That normal is gone. Over decades, medicine has finally recognized late developing side effects as a reality, not necessarily for all, but for some, and the problem is no one knows who will develop these late effects. Therefore, ALL cancer survivors should continue following up with their primary care doctors once they are released from their oncologist, with guidelines from the oncologist what issues to keep an eye out to potentially occur, not definitely, but possibly. That is a new “normal” especially if you are not one to have ever seen a doctor regularly (besides the oncologist).
Aside from the medical new “normal,” I have come to realize that each day brings a new “normal.” And because I am someone who has a variety of late developing side effects, the “normal” for that day depends on if any of those effects are gathering attention or not. What I have found, and actually accepted, is that this is okay. Another new “normal” I have been able to achieve, is how I deal with stress, much better.
Perhaps my most important “normal” however, are my daughters. Becoming a Dad, now decades ago (a surreal thing to say as a cancer survivor), has been the most normal part of my life. There are no quotes around the word normal this time, because you can quote me on this, for me, becoming a parent has been the best kind of normal I have gotten to experience. And each day, I look to build on that normal.
The truth is, normal is what you make it. And that is what makes it “new” after a battle with cancer. Because now, you, the individual are the one deciding what is normal.
June 14th, a day that I remember every year, for two reasons. The first reason, on this date, back in 1777, the United States of America had its first design of the flag approved by the Continental Congress. Similar to todays design, it was comprised of red and white stripes, the same number as today, and a field of blue, with thirteen stars, representing the thirteen colonies that made up the United States at the time.
(photo of painting by Percy Morgan – “The Birth Of Old Glory”)
Over the centuries there have been many re-designs of “old glory,” adding additional stars as more states were added to the United States, until we have the flag that is displayed today, thirteen stripes and fifty stars representing the fifty states. I know this, because one of the first reports I ever wrote, as an elementary student, was on “Flag Day.” I got an “A” and remember being so proud of my writing effort.
That year, and every year after that, our house displayed “old glory” on Flag Day, in addition to all of the other holidays that recognized federal holidays. It is likely this class assignment is the reason that I feel so strongly about “old glory.”
A symbol representing all that our country stands for, there are actual guidelines for the display and respect of the American flag. As listed on the American Legion website, the United States Flag Code, Chapter one lists display rules, times and occasions, position, respect, and conduct. Typically the flag is flown only from sunrise to sunset, unless it is illuminated by supplemental lighting. It gets raised quickly, and lowered “ceremoniously.” The flag does not get flow in bad weather unless it is of waterproof material. There are rules as far as any other objects or flags accompanying the red, white, and blue.
This next set of rules, deals with respect for the flag. It never gets flown upside down except as a signal of distress. Nothing touches the underneath the flag like the ground, water, etc.. The flag must fly “aloft and free” not flat or horizontally (going to be a problem for pro football games when they do the national anthem). Are you ready for this one? NEVER… I say NEVER should the flag be worn as apparel (tough news for all those who wear the flag soaking up their swamp asses as if a maxipad – this is a real peeve of mine). The flag should also, never be altered, this means like adding a color to a stripe, or changing the colors of the flag to make it “team colors” for a pro ball team.
And finally, when a flag must be properly disposed of, there are rules. When the flag is tattered or torn, it is time. In the case of this photo, I took the picture, the flag’s edges were not only shredded, but the flag has been sucking exhaust from the truck. This is wrong, so wrong. Yes, I feel strongly about the flag, and it probably began when I learned it way back in school.
June 14th took on a different meaning, and again,a day that I cannot forget ever, now not just because of Flag Day, but one of the hardest days of my life. My role model, my inspiration, my grandmother passed away due to complications from ovarian cancer (she was previously a survivor of breast cancer).
Each year on this day, twenty-seven years now, I remember her. My inspiration in cancer survivorship, I sometimes struggle that by some miracle I am still here, not just the twenty-seven years since she passed, but thirty-five years of remission. For whatever reason, whatever the stars have planned, I will likely see my sixtieth birthday later this year, something I definitely did not think possible back at the age of twenty-two when I was diagnosed.
It is ironic, one of the most celebrated times of the year, a rite of passage if you will, whose roots were created by labor unions, those labor unions are often objected to by many, but not strong enough to turn back a last weekend of Summer down at the beach or a family picnic. Yes, Labor Day is the unofficial end of Summer for many, even going as far as to dictate fashion, “no more wearing white until the next mixed holiday, Memorial Day”, where we honor our fallen war heroes, and many just go to the beach to begin Summer. The bottom line thought, Labor Day is a recognition of the work force and the labor unions going all the way back to the late 1800’s.
Whether you are pro-union or anit-union depends if you are a member of a union, an owner of a business, a benefactor of the benefits you have negotiated in a guaranteed contract, a bitter and jealous employee with no union representation, and of course the stereotypes that accompany all the arguments for and against. I have been on both sides, seeing unions as disruptive and some times, the end of a business, and joining my first union at the age of 35, being guaranteed health insurance as just one of the benefits I was entitled to after being denied health insurance for the previous ten years, because I had cancer. Being part of a collective bargaining unit, I had to be accepted for health insurance. Being in a union and having that benefit, would save my life less than eight years later. Officially, I am a third generation member, the union I belonged to until retirement, the United Steel Workers Union. My mother and grandmother were members of the Electrical Workers Union. And I had an uncle who was a member of the United Auto Workers Union. And I have many friends in the AFT, the American Federation Of Teachers Union.
If I am being transparent, early on, and I do mean early on, as in my childhood, subliminally aware of my family members belonging to a union (my grandmother was actually an officer and my mother was a shop steward), I really gave union chatter no mind. I know that if I heard anything about unions, it was mainly the inconvenience that was about to impact our household financially, as a strike approaced. And then to influence me any further against unions, was a stereotype, supported by Hollywood with varous films. The first movie I ever saw involving the concept of unions, was F.I.S.T. starring Sylvester Stallone (if I’m not mistaken it was released after Rocky, which was the only reason I wanted to see the movie). But the union was presented as a bunch of thugs which is not something I can support. Hoffa with Jack Nicholson was another movie showing the negative side of unions. Then Norma Rae with the “Flying Nun” Sally Field came out, showing an empathetic ear to workers needing to have better working conditions. And more currently, North Country with Charlize Theron, based on a lawsuit for sexual harrassment in 1984.
Other than being an employee in my first union, I found myself in an unusual position of being a candidate for our local school board. This unplanned detour in my life came about, as my daughter was preparing to begin school, which was about to be interrupted by a teacher strike. And like many uninformed citizens, I was outraged by the inconvenience that was going to come my way, and like many of those citizens, do nothing about it except bitch. That is, until the school board candidates that were running for re-election did something I felt had crossed a line, taking out a full page color ad, publishing the salaries of every teacher in the district, a bargaining method against the teachers union, but blasting information meant to infuriate the community. And for many it did just that. But for me, having been through one contract negotiation with my current employer, I saw something that was not right. The board candidates were trying to negotiate in public instead of in good faith with representatives from both sides. Long story shortened, I call this a bully tactic which I did not like, and I ran for my first political race.
(picture courtesy of Sportster)
There often is disagreement in whether unions are good or bad. There are laws in place to guarantee the right to form a union. Famously, one attempt that got a lot of attention, and one could argue was needed, was for professional wrestling. Though it is considered sports entertainment, its risks and skills are no differently than other professional athletes. Yet, when pro-wrestler and former Minnesota governor Jesse Ventura secretly tried to organize a union, it was Hulk Hogan who went to WWE owner Vince McMahon and blew the whistle. Think about it. All Ventura wanted was better pay, and better health protections. But there is something that comes along with being in a union, its members are treated as equals. So, with the majority of other wrestlers making four or five figures, compared to one or two making seven or more figures, Hogan wanted no part of that, wanting his prestige. Forget the money issue, negotiated health care especially in a career that sees many of its participants crippled or dead by their 50’s or even earlier, their current status is left on themselves to provide their own care, if they can afford it.
In 1991, soon after completing my treatments for Hodgkin’s Lymphoma, I left my employer for a better opportunity (more money). Unfortunately, I gave up my insurance coverage by doing so, my new employer unable to cover me because of my “pre-existing” condition of cancer. But I was healthy again, so I was not worried about health insurance for the time being, and saw the new career opportunity to big of a chance to pass up. And then in 1997, and even bigger opportunity came up in a completely different direction than I could ever have anticipated, working for a major pharmacutical company. There would be one catch. Starting out entry level, yes, I was going to make double what I had been making, but I was going to be given health and life insurance, NO QUESTIONS ASKED! These benefits are given collectively, to all of its members. I could not be turned down even after all I went through.
There were things I would learn to like and dislike in being in a union. The hardest thing for people to understand, is that all its members are on an equal footing from pay to benefits, to opportunities for new positions as well as protections of job security, called senority. Senority actually led to opportunities for different positions in the company that could give individuals like me, with high on-the-job-learning-skills, the ability to apply for even better positions which of course with higher labor grades.
But the most important thing I gained from being in a union occurred in 2008, which I have written extensively about on this blog. My heart went kablooey due to damage from treatments for my pre-existing condition of cancer. Being in the union, had me covered with the health insurance I needed to save my life. From that day on, I needed that insurance as I found myself having to deal with multiple issues all related to that time back in 1988. Being in the union, at least I knew my health insurance was not going to let me die. So yes, I am pro-union.
My experience with the insurance end of benefits, as wel as rights of the American With Disabilities Act and the Family Medical Leave Act made me popular among my co-workers when needing support against company management when attempts were made to punish employees for health reasons. And because it was soon discovered that I understood the contract as easily as I understood health benefits, I was elected one of several shop stewards to represent my co-workers in my department.
There are people who feel very strongly against unions, they have their reasons whether they be misinformed or flat out selfish. Perhaps unions would not be needed if employees were paid livable wages, given health protections, heck, treated like human beings. A simple concept really, but I believe it, a happy employee is a dedicated employee, which can only translate to benefits for the company. I believe it is a false trope that unionizing causes prices to go up. Take any company that squashed unionizing who still raise prices of their goods, minimize manpower, and still come away with CEO’s making 350% more than their employees while making billions in profits. Look in some retail and fast food installing kiosks to do what a human once did all with the cries of a CEO saying this is what happens when you pay a worker more, laying off other workers and STILL raising prices of its goods, still making the same salary for the CEO and profits.
Labor Day may be the last hurrah for the Summer down at the shore, but to those who have represented and fought, for those in unions and not, this is what you can be thankful for the labor movement according to the Department of Labor:
The Fair Labor Standards Act, this is for wages and OVERTIME. It covers age restrictions under 16 years of age, and 18 for jobs deemed too dangerous. It limits hours for students during school days. And yes, it also covers laws in regard to immigration and nationality.
The Occupational Safety And Health Act (which is enforced by OSHA) which enforces workplace safety and health.
Worker’s Compensation, there are so many written acts covered under this, requiring employers to protect employees with an insurance for workplace related injuries.
Employee retirement benefits and laws for pensions and COBRA for health insurance and HIPPA for privacy rights
The Labor-Management Reporting And Disclosure Act
Employee protections such as the act of “whistleblowing”
Uniformed Services Employment And Reemployment Act which guarantees a worker to return to the job they left behind to serve their country
Employee Polygraph Protection Act, yes, evidently we need that
Garnishment of Wages protections
Family Medical Leave Act
Veterans’ Preference
Government Contracts, Grants, and Financial Aid
Migrant and seasonal aggricultural worker protections
The Federal Mine Safety And Health Act of 1977
Construction and transportation
Plant closings, layoffs, and postings
As you can see, there is a lot to be celebrating today, and to be thankful for those who came before us to fight for these protections, and to keep them. As for unions, they may not seem perfect, and they may not seem fair, but the benefits that come from them, far outweigh the way workers could end up being treated without them.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 