Paul's Heart

Someone Moved My Cheese

It is ironic, that this morning, I wanted to write a post about dealing with change, and the first thing I noticed when I logged onto my blog, I was being forced to finally move to the new format of WordPress. Just as other things that have progressed or changed over the years, I am definitely not happy with this one. There was no reason to fix what was not broken.

This reminds me of a a co-worker I once had, a very sweet woman, who, during a time of major change within the company that we worked for, saw many of us having a very difficult time accepting the many changes that the company was enacting. This went beyond getting Grandma to use a microwave or setting a DVR. These were major changes to our work routines, our work quality, and eventually, a reduction in manpower.

Nonetheless, she brought in this book, “Who Moved My Cheese?” by Dr. Spenser Johnson. When applying the book to real life, the “cheese” is what we want, and the “maze” that the mice go through, is life for us, no matter what we are dealing with, and what you need to do to be successful getting to that “cheese.” A simple read, but a profound example of life.

This thinking actually applies to many aspects of my life. In many cases, I am able to roll with most changes, some, not so easily. And there may be one or two that I am willing to fight to the death over. But one that has been the most difficult for me to adjust to, and every now and then, I am reminded of what I must accept.

The late effects of my cancer treatments have wreaked havoc on my ability to enjoy things in life I once did. Unable to tolerate extreme cold, a low endurance, and pulmonary issues leave me unable to do one of the things I enjoyed doing most, skiing. Upper body muscle issues no longer leave me able to play a variety of sports that I once used to, softball, bowling, and even enjoying nature, whitewater rafting. The list goes on.

Having two young children, one now an adult, another soon approaching that age, I learned to substitute my desires to enjoy those things I once did, with enjoyment of watching them, participate in fun adventures.

As my daughters have gotten older now, the challenges of entertaining them, occasionally find me wanting to push my limits, for just one more opportunity to do something with my daughters, not because I think I can, but because I want to. But the fact is, I cannot.

And that is how I deal with these sometimes overwhelming feelings. Being older now, my daughters are very aware of my health issues. They have witnessed my “breathing” attacks, have been told about my history, and are very well aware of others like me, who have children also. They also know, the time they get with me, is special and not a guarantee with my health.

The Covid19 pandemic has definitely made things even more challenging for me when it comes to providing entertainment for my daughters. I do all I can to protect them and prevent them from contracting it while with me, but they also understand my vulnerabilities.

So, when I find something for them to do, out doors, meeting the recommended criteria for safety (distancing, masks, and hygiene), I remember what it was like for me a long time ago, being able to enjoy that activity, and I want to do it with them now.

But I cannot. And I was reminded of that, as my daughters returned to shore. They found out the science of water current, that it was much easier going downstream for half of the journey, but a lot harder coming back, and their arms and shoulders let them know that lesson. This would have been a disaster for me, risking tearing both of my rotator cuffs, doing just this simple and easy paddling. As much as I wanted to make this trip with them, all I could do is watch.

I am reaching the end of their childhood. And as I go through this maze, and the cheese continues to be moved, I realize when I get to the end of the maze, it is going to be the memories of the enjoyment I had, watching my daughters share, laugh, and enjoy their childhood with each other.

Evidently There Can Be More Than One

One television series I enjoyed watching through syndication was “Highlander.”  The premise was a world with “immortals” who could not die, unless their head was chopped off by another “immortal.”  When one “immortal” took another’s head off, he inherited his powers, until, as the television narration went, “there can be only one.”

Fortunately in the world of cancer survivorship, there is more than one.  And there are more than one in any number of issues related to survivorship.  And just like the main character, likely “the one”, who came from the past, Gavin MacLeod had to deal with things in modern times.

I find myself in a similar predicament.  Don’t worry, I have no intention of chopping off anyone’s head.  But up until recently, I felt as if I had been the only one concerned with, and dealing with this issue.  It turns out there are others.

I am talking about the Covid19 vaccines.

First, I want to be clear, I am not an anti-vaxxer by any means.  As long as the vaccine has been thoroughly researched through its rigorous studies, and deemed effective and safe, I am all for them.  You will not hear anything conspiracy related out of me.

With Covid19 however, the world has been faced with a crisis and challenge that it had not seen in over a hundred years.  A virus with no vaccine and no cure.

Without getting lost in the weeds of what goes into medical research, we all know that it takes a long time to fully approve a vaccine.  In fact, technically, the three vaccines that are currently out right now, are not approved by the FDA, only approved for “emergency use authorization,” an important distinction.  What this meant, was that enough studies had been done, on “normal” or “healthy” people with no other co-morbidities (health issues).

Here is the thing.  For a vaccine to get into the “years later” part of research, that means that scientists have a fairly good idea that a vaccine has a good chance.  And they continue on with the research, either building on that success, or finding out, that once you get into the less-healthy population, may not be a good thing.  But this part takes years.

But we are in a race, without any intervention, the world is talking mass casualties.  So here we are, vaccinating as many as we can, with an “emergency use authorization,” while scientists continue studying the vaccines on other different cohorts (categories) of patients with various conditions.

Besides the elderly, the other critical population to get inoculated, are those with pre existing issues or a compromised immune system.  This grouping of people, of which I am included, are major targets of this vaccine.  And many are putting their faith into getting the vaccine.  A hope for some peace of mind, that they will be safe from Covid19.

Except, not me.  My doctors are actually split on whether I should get the vaccine.  They all have their opinions pro and con.  Which of course leaves me to make the decision myself.  Had their opinions all been unanimous, that would have solved the dilemma.

There are two factors that have led me to the decision, that I am going to “delay” getting the vaccine.  Again, I am saying “delay”, not “not get it,” a big difference.  I am relying on my own abilities to take all preventative measures I can, to protect me from exposures and risks, while I wait.  While I wait for these two factors to be addressed.

The first factor, is science.  There is zero data, that the vaccine protects those of us with either a compromised immune system or certain other pre existing health factors.  And currently, only one organization is trying to address this situation so that we can at least have something anectdotal, and that is the Leukemia & Lymphoma Society, gathering information from as many of the millions of Hodgkin’s Lymphoma and blood cancer patients and survivors that they can collect, in regard to contracting the virus, the vaccine, and the effects of the vaccine.  A start, but right now there is nothing.

Also involving science, something unknown about those of us with compromised immune systems, it is unknown, if the vaccine would have any negative impact on the immune system that we currently have, such as driving down what little we have, making us more exposed to other common illnesses and infections, or our ability to fight them.

And of course, what about late developing side effects?  There is no way to know what they are, because this vaccine has never been used or studied before.  And we are less than five months into vaccinations.  Being a long term cancer survivor, exposed to levels of radiation and toxicities of chemotherapies now deemed obsolete and dangerous, have left me, and many others educating science on late effects.  It is too late after the fact.

Perhaps I could possibly overlook the late side effect issue, if the other issues pertaining to immunity were as overwhelming in data as the vaccine for the “normal” and “healthy” people.

The other factor, and this is the very weak reference to “Highlander,” it seems I am not the only one with this particular situation.  My body does not make antibodies when vaccinated without boosters, sometimes multiple boosters.  I know this, because I had titers drawn (a blood test) following each vaccine, often leading to additional boosters.

Well, with the Covid19 vaccines, no matter which one, there is zero protocol for someone like me, to be checked for antibodies following the vaccine.  Additionally, if it were deemed the vaccines were not enough, and I needed boosters, there is no protocol for administering additional boosters.  There is no data if additional boosters would be safe to administer.  And finally, there is the guess, how would I know if the vaccine worked without a titer test?  Do I just go through life assuming that the vaccine did what it was supposed to, and risk actually contracting the virus, and possibly succumbing from its effects?  Some of my fellow survivors have not had any side effects from the vaccines?  Does this mean that the vaccines did not work for them, or were they just lucky?

Up until recently, I thought I was alone in my thoughts.  I recently received an email from a fellow survivor with exactly the similar situation I just described with antibodies, and their decision to delay vaccines also.

Nearly all of my fellow survivors understand how serious this crisis is, and especially for us with long term health issues.  And we all want to be able to get back to some semblance of a life we once used to enjoy without concern of getting Covid19.  But the good thing about our group of survivors, we respect each others individual decision whether to get vaccinated or not, or if they wish to discuss their reason.