If there is one thing I have been constant about on “Paul’s Heart”, it is sharing opportunities and stories of inspiration when it comes to cancer survivorship as I hear about them. There has never been a shortage whether it be recognizing milestones such as 30, 40, or 50 years of remission, or overcoming concerns about future events in life, such as having a family as a cancer survivor. But in all my years of survivorship, 34 years in remission, 35 years of survivorship since I was diagnosed, the following story from start to finish is one I had not only thought I would ever see in my lifetime, but for sure, not expect to see a comeback as strong.
I first wrote about Jessica, a fellow long term Hodgkin’s Lymphoma survivor, just over five years ago (Jessica, The Mermaid That Beat Cancer 4 Times – July 10, 2019 post). In November of last year, she suffered a “fatal” heart attack, surviving the event due to the quick thinking of her clients during their training session, and multiple rescusitations by medical staff. Her only chance of life, and with quality, was going to be a heart transplant, an effort so rare among my fellow Hodgkin’s survivors. Jessica would become the first Hodgkin’s survivor I personally knew, to be given a new heart (there were a handful of other long term cancer survivors who had successfully undergone heart transplants). On December 8th, I wrote A Miracle For Jessica followed by a post on December 10th called Jessica – Marching To A New “Beat”, with the heart transplant having been completed on December 9th.
Well, as is often the case of other survivors I have written about here, I have another update on Jessica.
(photo courtesy of Jetwaterfitness)
This picture is of Jessica, is just eight months with her new heart. Barely nine months ago, she suffered that heart attack, and here she was participating in a very special activity.
(photo courtesy of Jetwaterfitness)
It is called “Dash To Paris.” It is a special athletic tour combining running, swimming, and bicycling from Milan, Italy, to Paris, France, just in time for the opening ceromonies of the Para Olympics. The mission of the Dash To Paris, is to demonstrate support for those that want to be involved in athletics regardless of their physical limits or opportunities.
No participant could have met that description as appropriately and currently as Jessica. Despite a history of four battles with cancer, and later in her life, dealing with late developing side effects from the treatments used to save her life each time, Jessica was committed to physical fitness. She even worked as a physical therapist and personal trainer, which likely not only played a major factor in surviving this last health emergency, her recovery, but enabling her to train for this event. Jessica’s goal was to join the Dash To Parish for the last mile, and finish the Dash.
Joining Jessica was another fellow long term Hodgkin’s survivor, and Jessica’s sister, both who were by Jessica’s side following the heart attack. In fact, her sister was by her side during the last mile.
(photo courtesy of Jetwaterfitness)
There is so much to be inspired by Jessica’s effort and determination. Jessica is more than aware how different the outcome of her story could have been. Most of her fellow survivors are all too aware of how difficult and unforgiving our health issues from our cancer treatments can be. Many of us have seen doctors break in spirit, unable to help one of our survivors any further. But Jessica’s story is not only a special one, it is clearly one that is going to keep adding chapters.
Congratulations Jessica on not only this achievement, but your continued improving health. I am sure that can speak for the majority of your fellow survivors, we are all so proud of you!
I make no apologies for being a proponent for “Medicare For All” or universal health care. I do not believe that health care is only for the privileged and instead, is a right for every American. And I believe that during the Covid19 pandemic, our country proved that universal health care could work as it became necessary to deal with the worst health crisis in over one hundred years.
Bring up the fact that the United States is one of the only industrialized countries, and wealthiest that does not provide universal health care, and antagonists are quick to point out countries such as Canada and England and their most common complaint, wait times to see a doctor, and blaming universal health care for that. Well, please allow me to introduce myself.
I have had just three primary care doctors in my six decades, the current doctor, forty years now. I will admit, the incorporation of the hospital network has made it challenging to “seeing only her,” but to this date, I have prevailed. When I have needed to see her, I have gotten to see her, with relatively littley delay.
Of course, seeing my primary care doctor used to be fairly easy and routine, even during my days of being treated for Hodgkin’s Lymphoma back in 1988. But since my body developed late side effects from the treatments used to put me into this long term remission that I have enjoyed, I now have to see doctors other than my family doctor. In fact, I see at least seven different specialists to cover the more than a dozen diagnosis that I live with. I have done my part to make sure that they are all within the same “network,” making communication between all of my doctors as easy as possible. This is important especially when trying to make my appointments which has become like trying to assemble a jigsaw puzzle trying to work out all the appointments as well as the multitude of tests that need to be done for each appointment.
So today, as I tried to wrap up my scheduling for next month, I had two providers to schedule, as well as re-schedule two appointments that were being changed on their end. “The first available is in March,” went the first phone call. “The earliest appointment she has available is April,” went the second call. OF 2025?!?!?! But we do not have universal health care. These delays only happen with countries that have health coverage for all, right? So we are no different than other countries now with not providing more efficient health care in a timely fashion. Yet because our health care is for profit, between the insurance companies and the hospitals and medical facilities, we pay the most for health care than all of the other countries who have universal health care.
Brazil offers universal healthcare to everyone. It is actually written into their constitution as a right. In 1912, Norway, known to be one of the healthiest countries in the world, was one of the first countries to have universal healthcare. The United States? Crickets chirping.
Make no mistake, I do believe that the United States has some of the best medicine and skills, just as many other countries. But at one time, health care used to be affordable. Of course, I did not realize it because I was only six years old when the Health Maintenance Organization Act of 1973 was signed into law by President Richard “Tricky Dick” Nixon. The concept of the act, was to encourage alternatives to tradtional medical care and costs through companies called Health Maintenance Organizations (HMO’s). What these organizations did, was put “pen-pushers”, not the doctors who saw the patients, in charge of the health care. HMO’s would determine what tests and medicines would be covered, and if you needed something more expensive or necessary, the patient would have to waste valuable time applying for pre authorizations and likely appeals. If dealing with cancer or some other serious health crisis, this often meant the difference between life and death. HMO’s also restricted who you could see for your health care, which meant if the only doctor in the world who knew how to handle your health situation was not a participant with the HMO, you could not see that doctor and had to settle for the pot luck of anyone else. With the development of these HMO’s, profits became the driving force behind them, behind the insurance industry, and of course hospitals and medical facilities. Of course, many doctors were against this interference with patient care.
And the fact is this, a simple tax amounting to probably around $2,000.00 per person per year to cover universal healthcare, is much less than the $10-20,000.00 per year in personal insurance paid out. Look at that again, $2k or $20k, for the same access to health care. But there are two boogey men here, insurance companies, and those who do not want government in charge of their health care. Again, this is not the government telling you what to do with your health, these people just do not want the financial connection with the government and are willing to spend up to $18,000 more per year to make sure that does not happen. And if that means eventually that they end up without any coverage at all, at least the government did not help them. This is called “cutting your nose off to spite your face.”
There is a reason I am fired up today about this. One of the issues I deal with as a long term cancer survivor, is an increased risk of colon cancer, as well as esophageal cancer. And the precursor to a diagnosis, is the discovery of polyps, which need to be removed before they turn cancerous. Sounds like a good idea, right? Two of the surveillance appointments that I undergo are colonoscopies and endoscopies due to the treatments I received (radiation and the chemotherapy drug Procarbizine). The frequency of these tests is determined by the results. Typically, not everyone even without a history of cancer would like ever need an endoscopy, but colonoscopies are often recommended every ten years after a certain age. But with my history, and the results of my scopes, polyps every time, both of my scopes are ordered more frequently. Again, the goal is to remove polyps before they have a chance to turn cancerous. This is a good thing.
I have had these scopes done many times, usually every two to three years, and ordered by my lead doctor in my survivorship care. But something changed two years ago, as the prescription for the scopes was ordered, I was denied the procedures at the facility that I had it done at previously, ordered by the same doctor, as I was not a patient in the Gastrointenstinal Office. Though it did not seem to matter in the past, I thought, okay, I should have a GI doc anyway, made the appointment, which took three months, but then she said “not yet” to the scopes, regardless of what my other doctor wanted. So here I am, two years later than the order of the tests, still not completed, I went to make the next appointment to see her, and would expect to have the scopes scheduled as well, but then was informed, “not available until April.” OF 2025!!!!! And then, that is not even to have the scopes done yet which will put me to three years passed due at that point, so I can only imagine how many polyps I will have, but rather, will any be cancerous. And this is a legitimate concern. In recent weeks, several of my survivors have received news of either cancer, tumors, or other issues related to their scopes. In my long term survivorship world, many of my fellow survivors have had to deal with colon or esophageal cancers. So my anxiety right now is real.
We need universal health care. We need to be able to see whoever we need. We need to be able to go wherever we need. We need to be able to get whatever tests and treatments we need. It should not bankrupt us. Health coverage should not be a privilege. Healthcare should be a right, just as it is in nearly every other industrialized country. Using the arguement of wait times no longer holds water, because right now, corporate medicine in the US is doing just that. Enough is enough.
No, I am not talking about the horror movie. But I am referring to a different major emotion. Yesterday was a day that I had repeated so many times prior, though this time had a much bigger impact on me, the end of Summer visit with my daughter(s) (my older daughter had returned previously).
In the first half of their lives, we had never been apart from each other except for one time, and it was a “biggie,” my emergency heart surgery. Unfortunately, later on, divorce would create what my body’s health betrayal could not do, separate us. In the end, I would become a “non-custodial” parent which meant that my daughters would spend the majority percentage of time with their mother, which is not to be confused with “legal custody” which referred to everything else in regard to my daughters, which was “shared” equally at 50-50. I crafted my own custody arrangement following the disappointing attempt by my attorney. On paper, it was a cooperative agreement, with the intent to avoid conflict especially around holidays, all the while allowing me to have quality time with my daughters.
Because of technology, the absence between us and our visits, I was able to talk to and see them whenever I was able to get through to them, which was suffice in between our actual visits with each other. I can tell you, as an adult child of divorce, I wish my father would have had that option available to him. Technology would have helped him to get around the issues he had with my mother. But that is another story.
So all that was left to enjoy, were the visits, which could be long weekends, or extended visits during holiday or Summer breaks. With each of their visits, it was often like we were never apart. The routines of making meals, doing laundry, taking them places, and just having fun, were no different than when they were younger and when we all lived with each other. But, when it was time for them to go back home, upon me returning home, alone, is when it hit me.
(photo courtesy of statecollege.com)
Silence. Total and complete silence. No one to cook anything for. The televisions was not on. No one was asking me for anything. There was no one to see or look at. It was quiet. It was empty. Then it hit me, I was dealing with something I had not heard since my psychology classes in high school and college, “empty nest.” The analogy does not get any simpler than that, baby birds hatch, grow, and then fly away from the nest, leaving it empty. While my “birds” were not flying away forever after each of the custody visits, the feeling was the same.
Yesterday’s emotions felt differently however. I know they did. Sure, my “baby birds” would return to the nest for other visits, but now, as they enter their sophomore and junior years of college, I can see things are different, much different. And I could not be happier for them, because this is the moment that I wanted for them, to take the things that they learned from me, and forge their own paths, create their own futures, make their own lives. With their early years of college life finished, they now have experienced the one of the final things they needed to do, feel their independence, learning to not only make their own decisions, but take into consideration the rewards and the consequences of those decisions. Both have taken major opportunities already, bold decisions that I never imagined so soon, proving to me and to those that know my daughters, that my daughters have bright futures ahead of them.
But knowing how strong and independent my daughters are, did not make my return back to the house, alone, any easier. It was quiet. Dark. No activity. The television was not on. No one was in the kitchen enjoying a snack. The laundry basket was not filled. Empty, the “nest” was empty. However now, it felt like the empty birds nest. My daughters schedules this year, and from here on out, are labor intensive, socially demanding, and then, still to be taken into consideration, time off to still be split between their mother and I. They will also want to spend time with their friends, and possibly, no, likely, significant others of their own.
I think what makes it especially harder for me now, and anyone who knows me knows this about me, my daughters are my world. As I faced that heart surgery back in 2008, the fear I might never see them again, combined with my complicated health as a long term cancer survivor, and a tense ten-year custody arrangement which is now ended, I find it anti-climactic that all the motivation and goals are behind me, leaving me to focus solely on the health issues that may lay ahead of me. I need to fight this feeling, because there is still so much that I want to experience with my daughters, their college graduations, weddings if they choose, and their children if they are so blessed.
(photo courtesy of Wild Things Food)
Living in Florida, I see nature and the circle of living every day. In the back yard, I have seen three baby deer over the last four years. I get to watch everyone grow, hanging around their parents, and then one day, they are on their own. And then the next generation begins. I guess that is where I am at right now. My daughters are into the next phase of their life, and will do great things, for which I am so happy and hopeful for. I do not know if the offspring of wildlife run into their parents anymore once they leave, but I know, as a human, I am definitely planning on it. Our visits will be shorter in duration, and who knows if the time will be enough to fit everything in. I do know, it will never be enough, ever again.
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