Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2020”

The Best Source For Covid19 Info

I have on several occasions during this pandemic, the fact that I am considered “high risk,” meaning that I have a higher chance of not only contracting the virus, and possibly dying because of it.  Worse, my susceptibility, especially during the incubation period, or “ability to spread” is likely to have more of an impact on those around me.  So yes, I definitely take as many if not all of the precautions necessary so that I do not come down with Covid19.  Many would consider that courteous.  Most would call that smart.

But when it comes to advocating for others, regardless if they are high risk like me, or of average health, there are some who do not describe my efforts as courteous or smart.  They call it “fear mongering.”  The Google definition, similar to every other source, of “fear mongering” is “the action of deliberately arousing public fear or alarm about a particular issue.”  In order to do this, there has to be an agenda.

All of these raise a public concern about a legitimate concern, a fire in the home, a car accident, someone breaking into a home, and a pandemic.  All serve a deliberate purpose, to protect you, not to cause fear, ALL OF THEM.  Having a smoke alarm does not mean your house will catch fire, wearing your seat belt does not mean you will be in a car crash, and using a home security system does not mean your house will get broken into.  Neither does awareness of the number of incidents of cases of Covid19 and their deaths.  All of these things are meant to bring awareness to a very serious concern.  That is not fear mongering.

Now of course, I immediately get called out, making accusations about using certain sources, and being “left leaning,” as to infer a political lean that I do not have.  I am a registered non-party.  I have no lean.  Being a college educated individual, and one of the first things I learned writing term papers even back in high school, you need a variety of resources.  As a rule, I stay away from any that is definitely right or left wing biased.  But when I rely on media information, I take everything in, and then form my opinion.  Just because my though may agree with you, does not mean I agree with your party.  Just because my thought may disagree with your ideals, does not mean I have an agenda.

For the most part, I have something much more reliable than media sources.  Yes, they may give me ideas, but then it is up to me to research.  Before any government official, I will always trust my doctors and scientists.  Several of them, belong to very prestigious  and well-known and reputable medical facilities.  The doctors that I deal with, are the best as far as I am concerned.  And it is not just their skills that earn them that description, but who they are.

An older picture, but this is one of those doctors that I rely on for information.  He is the most knowing of the many health issues I have due to my treatments for Hodgkin’s Lymphoma.  This has been his life for decades.  But now, in the days of Covid19, he is taking on an even more critical role, helping me, and others like me, from having to deal with the virus, or what to do if unfortunately we do contract the virus.

Arranged by Hodgkin’s International, an organization created and run by survivor’s of Hodgkin’s Lymphoma, my doctor participated in a webinar yesterday, at no charge, to speak to, and to answer questions from not just some of us who were patients of his at one time or another, but all participants in the chat.  Let me say this again, he took his own time, to talk to us, and answer questions about how to get through this crisis.

My doctor is a strong believer in the CDC, and carries many other high credentials and ties to major medical organizations and facilities.  Because there were so many of us on this call, he was sent the questions via chat, which actually kept things very organized, and time was not wasted trying to get everyone to be quiet and not talk at once.

You knew right from the beginning, his audience, us, already knew the importance of protecting ourselves not just during this crisis, but with any potential illness.  He mentioned the need, for us to do what we already do as long term survivors, “listen to your body”.  Many survivors already run low grade fevers as it is.  But if we definitely do not feel right, we need to act.  And not just act, we must advocate.

The good doctor knows the many struggles many of us face in getting the average medical personnel to listen to our histories and respond appropriately.  Part of his care, is getting his patients to educate themselves, and then, to advocate for themselves.  Just as importantly, if possible, have someone with you to advocate along with you such as a family member or significant other.

He went on to explain the situations that lead to us being high risk, not that we needed proof, but coming directly from him, it is a validation that we know the truth, we know what we are talking about.  He started out talking about radiation therapy exposure to the chest area (lungs and heart).  Then he mentioned the drug Adriamyacin, some of us refer to it as the “red devil” because of its color and deadly side effects, (heart), another chemotherapy drug called Bleomyacin (lungs), and of course the spleen being removed (immunity).  He also mentioned the importance of blood pressure control.  I do not know about the others on that call, but I check off all five of those boxes (along with being diabetic as noted by the CDC).

And though all participants take his words as being all we need to hear, he mentions that he supports Dr. Fauci of the CDC and the recommendations that have been made.  He believes that the recommendations are not just the best for us, but for everyone.  But he strongly recommended to those of us at high risk, to continue our efforts to remain sheltered as much as possible.

There were other issues that had been discussed from returning to work, especially in an environment that may pose an increased risks, and the need to recognize patients rights under the Americans With Disability Act and Family Medical Leave.

I do not think we really ever got to discuss about potential treatments, and probably for good reason.  There is none yet approved.  His concentration was on prevention and action.  But he did answer one question on unknown, a vaccine.

Perhaps one of the most important thing for those of us who immuno-compromised, are vaccines.  All of the doctors know how resistant I am to getting any, there are times I submit, but not without major heel-skidding being dragged to them.  I am not anti-vax by any means.  But I am selective.  A conversation I once had with the doctor when he asked me why I do not get the flu vaccine (at the time never in eighteen years), he responded how lucky I would feel standing at a slot machine pulling 18 straight winners, and then going for the 19th pull.  What were my odds that I would keep winning?  He did not necessarily change my mind that day, but he has been able to convince me of the vaccines that do have the potential to prevent me from facing certain illnesses, likely to lead to death.

In our long term survivor community, vaccines are recommended, but not all of them.  One of the worst illnesses for many of my fellow survivors to deal with is Shingles.  Yes, there is a vaccine for it, but up until a year or two ago, we could not get that vaccine, because it was made with “live” virus.  That would kill us.  Recently, a new vaccine has been created with “dead” virus, and some have been given the recommendation to get that shot.  Flu vaccines are the same way.  Even when my daughters got their polio vaccines, a “live” vaccine, that actually bought me a time out from diaper duty because the virus would come out in the diaper, and I could not be exposed to that.  Other than that, I assure you, I changed plenty of diapers.

The last vaccine I faced was for “swine flu”.  But Covid19 is a completely different virus.  As of right now, there is no vaccine.  And when the doctor was asked if we should get the vaccine when made available, we got the answer we already knew.  “It depends.  It depends on whether ‘live’ or ‘dead’ media”.

After over an hour, we not only learned, we reinforced, and we also realized who we needed to rely on during this crisis, ourselves, each other, and the ones who know best.  Ourselves, fellow survivors, and the medical field and scientists.

Presidents, Governors, County Commissioners, Mayors, Economists, none of them are going to get us through this crisis, because without dealing with the science of this virus, there is nothing else left to worry about.

So that I am not perceived that I am fear mongering, our numbers are going down.  That means that the efforts and sacrifices that many of us are making, are working.  Imagine if 100% of everyone did so.  But until we actually hit zero in cases, or eradicate the virus, we have to keep on with our efforts.  I will wear my mask to protect you from me, and I will do my best to avoid situations that would prevent you from doing the things you would like to do, just because I am high risk is not your fault.  But is it really that much to ask for you to wear the mask as well?  This could have been so much worse if it were not for the efforts of so many.  It could end even quicker if we all gave a damn.  Not fear mongering, not trying to steal anyone’s freedom or liberty, just stating a fact.

Human Lives Are Not Percentages

This is when many now realize that learning algebra and other math formulas was important back in school.

Because of Covid19, and regardless of which side of the concern you are on, both want to rely on numbers.  One side relies on a percentage, the other, actual numbers.  Is it really a big deal?  Or is it more “you say ‘potayto’ and I say ‘potahto’?”

This morning I watched our local community channel as the county commissioners were discussing business to “re-opening” our area, of course, once approved by the governor.

For me, I do not pay much attention to percentages unless, UNLESS there is substantial input, a.k.a data, to have a reliable result.  Unfortunately, during this crisis, both sides want to emphasize their case, but only one is able to provide the substantial proof.

Actual numbers provided by the CDC, WHO, Johns Hopkins, etc. are reliable.  They are not identical, but close in range.  These numbers are fact.  They are documented.

Percentages at this time, are not fact.  Because facts are still being gathered.  Here is my case in point.

When the county commissioner meeting got to the public commentary, this is when things got scary.  It is hard enough listening to skewed “personal agendas” of politicians, claiming to have professional knowledge, but then you have the local population, claiming to have more.  Unfortunately, I could not grab my pen quick enough, or my phone to record her portion of her commentary, but this was the gist of her comments.

Our county has roughly 300,000 people, of course not including snowbirds.  She claimed that our county only had a percentage of .2% when it came to cases of Covid19.  That means something like roughly 500 cases for our county, which sounds about right to my memory.  That sounds fantastic!  Not even a quarter of a percent.  But the speaker did not qualify her math.  You see, factually, our area had only tested roughly 5000 cases, or in her terms, 1.75% of our county had been tested.  How can you possibly take a stat like that seriously, as opposed to an actual death count of 16 people in our county?

Just as a reminder…

Using her logic, only 1.5% of our country’s population (over 330 million) have been tested, but the actual number of human lives recorded is well over a million now.    The current death rate based only on those tested and confirmed is 5.7%, over 57,000 human lives.  Let’s not forget the important number, the recovery number.  So out of the million cases, just under 200,000 cases have been closed.  So, out of those cases, you cannot include the 800,000 unresolved because that is not “recovered” or “deceased,” approximately 140,000 have recovered, or 71%.  I assume for this example is when people would want to use the actual human number because it looks bigger and better than the average “C”grade in school of 71%.  Of course, the flip side of this number… an actual death rate of closed cases of 29%, or 57,000 human lives dead.

Okay, give these people a break, they are just looking for unicorns and rainbows to make Covid19 go away.  Alright, enough with the scary numbers for death.  If we take the death percentage of total cases, it drops the death rate to 5.7%.  Aw shit, that is still 57,000 dead.  There is just no getting around that actual number.

Why am I grinding so hard about percentages?  It actually started long before Covid19.  In 1988, when I was diagnosed with Hodgkin’s Lymphoma, I was told the cure rate was 86%, very good by cancer survival stats.  That was based on lots and lots of data.

But, there was a chemotherapy drug that I was given, that had a 5% chance of causing heart damage.  Combined with radiation damage, I made it into that 5% group.  Fortunately, the majority of my heart issues have been repairable.

Not so for one of my fellow survivors, and one of my youngest survivors.  He also fell into that 5% category.  By the time they found out however, it was too late.  The damage was irreparable.

I am prone to bend the ears of my doctors who deal with the late side effects that I must deal with, and in spite of having the technology available, that could have reduced the chances of this survivor losing his life, unlike thirty years prior for me, this technology was not used.  He died.

I asked “why would he not have been given the simple ultrasound that would have caught the damage before it had gotten too bad?”  Now, I love my doctors, and they are very empathetic with their patients, and I was not asking him as a patient, but as an advocate.  The answer?  “It is not cost effective to run that test on every Hodgkin’s patient.”  A price of an echo can range starting from $200 on up.  Not cost effective?  There are approximately 9000 new cases each year, meaning if this medicine was used to treat all 9000, which it wouldn’t be anyway because of different concerns, costs to use this technology as a preventative tool would be under a half million dollars easily.  What it actually cost to save this survivor’s life, which it failed to do?  Close to $2,000,000.  Again, explain to me the phrase “not cost effective.”

It would have been better just to say, “it is not a high enough percentage to be concerned about.”  It still happens though, no matter how low the percentage is.  He still died.  He was one of those 5% that had that extreme side effect.  He had a family.  He had a bright future ahead after having gotten to remission.

And that is why I cannot accept attempts by anyone to throw percentage numbers at me when they do not even include a majority of data to come to that estimation.  But most certainly I cannot accept percentages when they take away the recognition of a human life lost.  And by saying only .2% of a local population is no reason to be concerned, you dismiss the 57,000 lives and the families left behind.

It is time for everyone to start taking this virus seriously.

Guest Thoughts On A Survivor

A little over a couple of weeks ago, I wrote a tribute for a fellow long term survivor of Hodgkin’s Lymphoma who had passed away, following a stay in the hospital due to an injury.

I had received so many comments about Kimbra’s passing, that I wanted to share some of those comments.  You see, when I write about a fellow survivor, it is simply from my perspective.  I do not think for one moment ever that I am the only survivor that someone has touched, because as I struggle with my own emotions in the passing, I often do not get to appreciate the beautiful words, even more so, the beautiful ways that someone has had an impact on someone else.  It was really overwhelming to see all of the warm words offered for our fellow survivor Kimbra.

I have been at this a long time, over thirty years.  And the longer I am in this, the more survivors I get to meet and learn about.  And just when you think you know them, at least within our group, that we all rely on each other, we learn there is just so much more than we thought we knew.  With that, I would like to share with you, some of the words of consolation, grief, and inspiration shared with me for Kimbra, from the words of her fellow survivors.


Yesterday another friend who is also a Hodgkin survivor diagnosed prior to age 18 died unexpectedly. Kimbra was kind, loving, helpful to others, and after a career as a medical librarian, was a wealth of knowledge to our group. In honor of Kimbra’s life, I share this personal essay I wrote that was published three weeks ago in the Journal of American College of Cardiology (JACC). Here’s an excerpt: “Two important mentors from the online Hodgkin group have given me hope in spite of an uncertain future. Dave (from Australia) and Dolly (from Texas) taught me how to face death: to speak of it openly, and to love with an open heart. They each wrote of savoring life moment by moment, and each lived fully and courageously to the end of their lives. From them I learned that someday we will die, but on all the other days, we will not. The key is to keep that balance in perspective. They showed me that among the collateral damage there is a certain collateral beauty: although we may not be cured, we can be healed.” Kimbra’s friendship is one of those collateral beauties.

(I am posting the actual link to the JACC story that Susan wrote)


I’ll miss her spirit here in our groups she helped us all with kind encouragement and vast knowledge. I’ll miss our late night chats.


Rest easy now, my sister in Hodgkins….you fought the good fight and your words/deeds will be defined by your life, not by what happened to you.


We were all touched by her beautiful soul. The giver of knowledge and the seeker of light. May all who loved her especially family and friends remember the special gift bestowed on each of you…she survived and will always be a survivor in our hearts and souls.


She was a true friend to many.


I’ve met survivors in all sorts of settings over the years. Yet, none have I ever become so close with so quickly as Kimbra. We had several long late night chats early on after we connected in another HL survivor Facebook group. I learned so much about HL survivorship from her and always appreciated her humor, love of literature and caring and helpful attitude. I am lucky to have gotten to know her. I will miss her and clearly she will be missed by others she knew in-person and online.

There are so many more.  But you get the idea.  On our support pages, our numbers are in the hundreds.  And while many many not write, just read, each and every one has an impact on us at one point or another.  It is an even bigger blessing if that impact was personal.

Kimbra is now among so many that I have had to say goodbye to over the years.  It does not get any easier.  And in a way that I think Kimbra would want, as others before her, our emotional reliance on each other only gets stronger as does the bonds between us.  Whether we offer words of encouragement to each other, or have an experience that might give a potential direction to deal with one of our unusual health situations, it is survivors like Kimbra that keep us going.

Post Navigation