Paul's Heart

My Multipurpose Mask

To look at the picture, and realize that I live in the sunny state of Florida, you could ask yourself what in the world am I doing wearing a ski sleeve?  A perfectly legitimate question as southwestern Florida typically does not see “cold” (by Florida definition, anything below 70 degrees until January and then we wear socks with our flip flops).

In 2020, as I take my daily walks, I normally would be wearing a standard cloth face mask as many people are wearing to protect themselves from Covid19.  But this morning, I woke up to a chilly 48 degrees (it was cold enough without hearing the wind chill was in the 30’s).  My cloth mask was not going to cut it for me this morning.

My green ski sleeve came in handy decades ago on the many mountains I got to ski when I was able to.  Living in the northeast of the US most of my life, it also helped a lot when it came to the frigid temperatures of winter.

But as the close of the first decade of the new century approached, a condition that had been developing over the years, courtesy of side effects from cancer treatments for Hodgkin’s Lymphoma.  It is kind of difficult to describe, as it is more of an onset, more than an “attack.”  The condition feels similar to an asthma attack, yet does not respond to asthma medication.  The duration lasted depending on the weather conditions and it did not matter hot or cold.  Recovery was even determined by the climate, indoor and outdoor.

Caused by damage resulting from radiation therapy and the drug Bleomycin in my chemo cocktail, I have several diagnosed issues with my lungs.  I have something called radiation fibrosis, restrictive lung disease (currently at 76% capacity – my lower left lung lobe is no longer functional or “dead”), and I have several unidentified spots on both lungs, being watched for potential development into lung cancer.

High humidity, cool windy air, and cold temperatures all produce the same effect with my lungs, almost a “hardening” or loss of flexibility, making it difficult to breath, often resulting in me taking rapid short breaths as I struggle for air.  The only thing that helps me resolve this, is getting into a climate controlled environment, either air conditioned (if dealing with heat and humidity), or at least a comfortable low 70’s internal temperature.  Once inside, I must sit, and slow my breathing down, allowing the comfortable internal air to get into my lungs.

How long these episodes would last would depend.  From my house to the car, it was not a problem.  But from the ten minute walk from the parking garage to the building that I worked in, was problematic.  There were other contributing factors as well, such as stress load, if I was starting my day off in a bad way, that would also impact my breathing.  Once inside, it would take anywhere between 30-45 minutes, though there were at least a handful of episodes that lasted over an hour.

Complete pulmonary function testing and imaging only confirmed that I do have limited lung capacity and functionality.  These episodes are not fun, and definitely not convenient, especially when you have a timeline you have to meet.

Having the knowledge that I was likely to face an episode, and that I knew how to deal with one if it occurred, and I could count on it to be resolved, the only thing left to do, was to prevent it.

When it came to dealing with heat and humidity, there was not much I could do to avoid the conditions, other than remaining indoors when conditions were not favorable.  Definitely not convenient, but my employer appreciated the fact that I spent a lot of time, reliably, working overtime hours just so that I did not need to take the long, hot, and humid walk to my car.  At home, in spite of having a cozy inground swimming pool, there was no relief as long as my head was above the water, and I was breathing the hot and humid air in.  There was little I could do, other than just follow my plans to deal with the episodes when they came on.

Cooler weather was a different story.  Though my ski scarf had spent its last many years in storage, I began to use the scarf to filter the cooler air before it got into my lungs.  But the image of me wearing this scarf, when the temperature was only hitting below sixty degrees (with heavy wind), or below fifty degrees or lower without wind, I got my balls busted a lot by my co-workers.

You see, I was known for not dressing appropriately for the cold weather, wearing shorts as late as January, in 20 degree weather.  But it had gotten to the point, with either cool blowing air, or frigid air, I needed to do what I could do, to prevent these episodes from happening.  And it helped.

So, years ago, I moved to one of the hottest and most humid states in the country, an odd move given this lung condition.  There is no ideal climate for me to live in.  But during the hottest summer months, I do spend most of my time indoors, in the air conditioning.  My time spent outdoors if I must, is limited usually from car to building, and almost never during peak heat and humid conditions.

But during the Fall and Winter months, unlike back in Pennsylvania, I have reduced the frequency of the colder attacks nearly 85%.  The most extreme temperatures I normally have to deal with, end up briefly in the fifties at most two weeks, at which I pull out the ski scarf.  It does come in handy for sure whenever I have to travel north during the colder months.

Yes, it looks odd, wearing a ski scarf in southwest Florida, but it serves its purpose, not for how it was intended.  Warmer temperatures will come back in another day or so, and then it will be back to the cloth mask again to protect me from exposure to Covid19, another unintended use for those masks.  Just like my ski scarf, it serves its purpose.

Grieving Like It’s Groundhog Day

Nope.  It still hurts this morning.

Yesterday, I discovered that another fellow long term Hodgkin’s survivor passed away.  She is not the first.  I know she will not be the last.  It happens several times a year, too many in fact.

Like others that I have personally known, I will write a special tribute for her.  But I do not want to tarnish the honor of her memory with the feelings that I have this morning.  I am not sure why I am feeling like I do this morning.  Like in the movie “Groundhog Day,” I have seen this day many times.  And no matter how many times you relive the day, the outcome does not change.  The friend is still gone, and you are still left feeling, why?

No, this morning my feelings are more complicated.

My friend did not pass away recently.  And that is a new category of frustration for me, why that happened.  It was the beginning of 2020, actually do not need to do any more of an intro as the number of the year tells where this is going to go, and nothing out of the unusual, I was having a conversation with this fellow survivor, as I have many others.

While there are a multitude of issues my fellow long term survivors deal with, many of the same, are experienced by a lot of us.  And this particular conversation that I was having, was something that I had personally experienced.  One of our common issues was multiple bouts of pneumonia, complicated by our lung issues from treatments for our cancer.  It was not the “standard” pneumonia, but one called “aspiration” (I will do a post on this in the near future, I promise, I was going to get to it eventually).

I shared my experiences and possible suggestions for her to inquire with her doctors to help assess her condition better, and possibly mitigate the recurrences of these pneumonias.  It was a normal exchange like with my other survivors.

There was supposed to be a “gathering” of us long term survivors later in the year, and we were both looking forward to meeting each other officially, along with the other 98 attendees, all of us long term survivors of Hodgkin’s Lymphoma.

Then, a month later, Covid hit.  And nearly everyone, long term survivor or not, got distracted.  We got distracted with the virus, the politics around the virus, the impact of the virus on our personal lives.  Sure, we kept on going with our day to day, but things fell by the wayside.

March 17th, 2020, the last date I recall before officially deciding, needed to make Covid preparations given my vulnerabilities.  March 15th, my friend was still making posts on Facebook.  But there was nothing after that.  She passed away on the 17th.

We both belonged to various social pages for our long term survivor issues.  But her absence had gone unnoticed.  Besides Covid occupying our minds, it was not unusual for many members to not be as involved on our chats, when we were not dealing with a pressing issue.

But if one of us was dealing with a current crisis, you can bet, myself and others would be giving a stern lecture, the importance of a survivor’s mentality, to know that a fellow survivor is doing well following an illness or procedure and to take whatever steps necessary to make that happen.  Many have been on that receiving end from me.

As long term cancer survivors, we know our frailties and vulnerabilities.  We know the extra precautions that need to be taken.  We have faith in our doctors to get the job done.  Unfortunately, it is the recovery and follow-up care/concern that lacks, when opportunity has the chance to go wrong.  And I have said goodbye to too many at this stage.

I am frustrated with myself, that during the Covid crisis, I have obviously not been paying the usual attention to my world of survivorship.  Things got lost.  I have no idea what happened with my friend and fellow survivor.  By all accounts, it looks like it was sudden whatever it was.

But she was five years younger than me.  Like me, she had two young children that she cared for.  And like me, she loved life, in spite of the various health issues we had in common, she found a way to deal with them.  That hits home with me.

And now she is gone.