“What do you want for Christmas?”, or since my birthday falls a week before the big day, “what would you like for your birthday?” In my childhood days, I had no problem rattling off things that I would like to have for both occasions. In my adulthood however, nearly all of it, my answer has always been simple to me, frustrating to others, time.
I love this quote from John Lennon. Asked what he wanted to be when he grew up, Lennon answered simply, “happy.” When I get asked what gifts I would like for either a holiday or my birthday, I answer “time.” Happiness was important to Lennon. Time is important to me.
I stopped longing for material things at the age of 22, when I was diagnosed with Hodgkin’s Lymphoma. Things no longer mattered to me. All I wanted was simple, more time. All I knew about cancer, was that people died from it. As I reached remission, my feelings never changed. Survivorship became about making a magical “5 year survival mark” as if any time after that did not matter, because it rarely got discussed.
But as my survivorship term increased, now by the decades, there is also a reality, and only reaffirms the only thing I want for these special occasions. Treatments that I went through to put my cancer into remission, over time, have caused, and continue to cause cumulative damage. I have had three heart surgeries, a surgery to repair my carotid artery, and two episodes of aspiration pneumonia that went septic. That makes six, SIX other events in my life, besides my cancer that have put my life at risk.
Since my cancer days, these six events put me in a position, that I was not prepared for, nor thought I had the ability, or the fortune, to survive. The reality, is there will be likely more of these events.
Over my years of survivorship as a peer to peer counselor (I counsel fellow cancer patients and survivors), there have been many survivors whose bodies had gone through so much trauma, their bodies could take no more. They had run out of time. As I write this post, I mourn yet another one of those survivors, a special one to me, as she was one of the first I met, way before Facebook, and on the other side of the country. I will share my tribute with her as her own post, as she deserves. She, like so many others, were also younger than me. Time. I wish she, they, could have had more. There was so much more for them to experience.
So yes, when I get asked, “what do you want for Christmas?” or “what do you want for your birthday?”, I respond, “time, more of it.” If there is one thing I have learned about cancer and its survivorship, I have no control over what happens, and I live each day with the purpose of enjoying it. But as my daughters prepare to enter the next stage of their lives, adulthood, I want to see more. And that means, that I need more time. Everything else will take care of itself.
If there is one thing that drives me bonkers as a health advocate who believes in universal health care for all, it is knowing the benefits of certain welfare decisions in recovery from procedures, especially when involving the heart.
Think about it, you have surgery to your heart. I purposely did not use the word major, because any surgery to the heart is major, and traumatic. Yet, when it comes to the aftercare, a patient will fall into one of two categories, and there really should be only one. Should a patient undergo cardiac rehab after a heart surgery? Does a patient really need cardiac rehab?
It really should not be that hard. The answer to both questions should be “yes.” And yet, many patients get told they do not need cardiac rehab, or will not benefit from cardiac rehab. An almost automatic pass on cardiac rehab will come based on “youthfulness.” Having gone through cardiac rehab three times (yes, I have had three heart surgeries, qualifying for cardiac rehab each time), I can confirm with 100% certainty, I did not fit in with the demographic of other participants, averaging the age of 70 to 75 years old.
I was definitely told “no” following my open heart surgery back in 2008. And it was clearly laid on my youthful age of 42. I did what I do best, and advocated for myself, and was able to participate in cardiac rehab. My other periods of rehab following my other two heart surgeries were approved easily.
Here is why cardiac rehab is so important. First, you need to understand, any procedure to your heart, whether bypass, stent, valve replacement, or even transplant, is TRAUMATIC! While the issue may have been repaired, the heart is still fragile as a patient recovers. A patient should not expect or attempt to just return to normal activities, especially when it comes to working out. But if you are young, chances are pretty good, that will be the only reason you are not referred to cardiac rehab.
In cardiac rehab, the patient is connected to a heart monitor, where a nurse follows your heart and vitals on a screen while you work out on several pieces of equipment over a time period. A trainer, supervises you and creates a beginning work out plan, and over time, and depending on the results on the monitor, increases your efforts to help you restore physical fitness. And a nurse also walks around, at least once during the session, taking your blood pressure to relay back to the nurse behind the monitor screen. At least my last two rounds of cardiac rehab, I have had three people not only making sure that I recovered at a safe and healthy pace, but that my body was accepting the efforts as well. I have personally witnessed a patient being told to stop, because something on the monitor indicated something was wrong with him. And he was taken to the hospital. You do not get this kind of care, if you are left to your own efforts. And if you push too hard too fast, the end result could be tragic.
As far as I am concerned, there is only one reason not to do cardiac rehab. As it is expensive, of course, insurance is definitely helpful to be able to afford it. But then, this is where I believe in universal medical care for all. Everyone should have this critical recovery option available.
After two years, I think I have finally figured out what life for me after the Covid19 pandemic will be like, but more importantly what it is really about. Like all of the other outbreaks that I have had to deal with over my cancer survivorship, it has been the unknown of Covid19 that made it more difficult to deal with and live during the times of Covid19.
Fully vaccinated, and having followed the mitigation recommendations for the last two years, I know for a fact, I have avoided a direct Covid19 exposure. And at no time, did I have to sacrifice freedom or liberty, nor did I ever live in fear, that ridiculous false trope. But it is after all of this time, I have come to realize that it is not even about the divide between those that deal with reality, and those that do not.
The biggest thing we, as human beings, with supposedly such developed minds, were told, we HAD to wash our hands and we HAD to cover our mouths and noses when we sneeze or cough. We HAD to stay home if we were sick so as not to make anyone else sick. Forget the topic of Covid19 for a second. We had to be told to do these common sense things that we were likely told as children. And why were we being told to do these things, not just because of the unknowns of the current crisis, but because too many of us have forgotten common sense. And because of that, then came the mandates, being forced to do the things mentioned above. But I do not want to get lost in the weeds with a different topic.
We spread germs, that is what we do. Like the photo above, I know my father and my grandfather always carried handkerchiefs, or as I called them, “snot rags,” for obvious reasons. They were gross pieces of cloth, kept in their pockets, when needed for use, and after being used, to be used again, and again. That’s right. They would blow their knows into the hanky, and then stuff it back into their pocket. What does the average person do with a tissue after blowing their nose? Right. They throw it into the trash. But not the snot rag. It just got shoved right back into the denim incubator of his pants.
Not just men are guilty of this, but so are women. In the purses of women, especially older women, are “old” tissues that after getting used, get shoved back inside the purse, perhaps to be used again and again.
As a child, there was a pretty good chance, you would be victimized due to your runny nose, of either reaching into their pocket or purse, and pulling out a “snot rag,” using it on you, and shoving it back into place for the next time.
As an adult, I had one particular experience when flying. I keep pretty much to myself as it is, no desire for small talk with strangers. But one flight, was an elderly woman sitting next to me, who clearly liked to talk. No sooner had she sat down, she turned to me and said, “soooooo… where are you headed? Is it for business or for…” She never finished her question because right at that moment, she let out a good hacking of her lungs, coughing directly at me, her mouth uncovered. Several days later, you guessed it, I came down with whatever that lady had, and eventually others in my family would get it from me. Fortunately over the last several years, I have minimized these experiences.
Here we are, two years dealing with Covid19. We now know how to diagnose it. We have vaccines to prevent and protect us if exposed so that the infection is not severe enough to put us into the hospital or worse, die from Covid19. We have legitimate treatment options for those diagnosed early enough. And then, we still have the mitigation recommendations, the common sense, wash your hands, and cover your mouths and noses.
There are really only a few things that I have not done since the pandemic and subsequent recommendations were made. Go to movies and concerts, and fly to see my mother. Over the pandemic, my daughters have been to visit with me, with the strictest of precautions, and they have remained safe as always, now fully vaccinated themselves.
An experience to my local grocery store however, quickly made me aware, that it may be quite a while, if ever, before I go back to attending concerts, movies, or anything densely populated. I witnessed two events, the second nearly making me vomit. The first was a boy walking with his parents, asking when he would be allowed back to school. The mother had explained to him that he had “three more days” and reminded him of a classmate who had a similar experience. In other words, this child was supposed to be quarantined for ten days, yet was out with his family, and unmasked, potentially spreading Covid19 to anyone within close proximity inside the store. Now for the worse story. If you are eating or drinking, stop.
In front of the pharmacy counter, a woman was standing. She arched her back and quickly reared forward, expelling a loud sneeze. No mask. Her hands were by her side. Clearly, whatever came out of her nose, was now blasted all over the shelves, counter top, and floor in front of her.
Do you see my point? Common sense. We know how to get through Covid19. But while we keep trying to convince each side who is right and who is wrong, taking political or conspiratorial sides, we have actually crossed 800,000 American lives lost, that clearly did not have to die, especially once the vaccines became available.
The Eagles are one of my favorite classic bands to see. And when I saw the advertisements come up for this particular tour, playing the entire Hotel California album, I really thought this would be the moment, I would finally get over my hurdle of avoiding concerts.
Up until this point, I have been content watching video streams of concerts and movies, and really, there was no reason to change this behavior. My food was better, cost less, no traffic, and I was in bed at the most, half hour later. It is not about being squashed shoulder to shoulder in seats to enjoy a concert or movie experience. I would use external speakers to give more volume, and I had the best seat in the house every time.
And then I remembered, the snot rag, the tissue in the purse, the contaminated kid not following quarantine rules, and of course, clean-up in aisle 5 in front of the pharmacy.
I have never been a fan of big crowds even without a pandemic, but am less thrilled with them now. But it is not because of Covid19, or whatever else comes down the road. Rather, the common sense that so many seem to lack. But hey, I don’t want to impose on anyone’s freedom to blow their germs wherever they want. So I take it upon myself. And I do still get to enjoy all the things that I want. Better yet, I stay healthy.
And for those that love that false trope, that is not living in fear, that is living smart.
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American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues