Paul's Heart

Life As A Dad, And A Survivor

Guest Author And Fellow Long Term Survivor – Lynn


A few weeks ago, I had put out a challenge to friends of mine to honor medical personnel who are making the sacrifices, too many, the ultimate sacrifice, by putting into words, by example, of just how extraordinary these people are, whether you know them personally or not.  The fact is, they exist.  And they are making a difference.

Lynn, pictured in between two other fellow long term Hodgkin’s survivors, is a long term cancer survivor such as myself, her late term issues, some different, and some similar to mine.  The following is her story that she wished to share on “Paul’s Heart,” in her own words.

Thanks to Two Great Doctors

A FaceBook friend, from one of The Hodgkin’s Lymphoma Survivors’ groups, asked us to post about favorite doctors and/or nurses. There are two doctors in particular I will never forget.

While my husband, who was a 2nd Lieutenant in the Air Force, and I were living at George AF Base, California, I discovered a swollen area near my left clavicle while packing to move to a new base. I showed it to him, and we decided we could wait till we arrived at Moody AF Base in Georgia. Apparently, Scott was more worried than I realized, because he told a Flight Surgeon at Luke AF Base in Phoenix, while traveling to Georgia. We had stopped in Sun City, AZ to visit Scott’s Mom and sister, Karen, for Christmas before moving. Scott had bronchitis and went to be checked. The Flight Surgeon told Scott to bring me out the next day. Testing was done, and nothing could be decided until I had a biopsy. So, it was decided the biopsy would be done at the base in Georgia. Before we left the Flight Surgeon’s office, I asked him what he thought was wrong with me. He said it could be Cat Scratch fever, Hodgkin’s Disease, or something else. The biopsy would tell.

We traveled across the U.S. sometimes silent, and sometimes talking about what was going to happen. I was also pregnant with my first child. We were both very excited about having a baby, but concerned what was wrong with me. We arrived at Moody AFB in early January. I went to the Base Hospital as soon as possible to the obstetrics department. It was decided, because I was pregnant, not to do the biopsy right away. Finally, on March 9th I had the biopsy.

A few days later, I was called to Dr. Jerome Cohen.’s office. He was a young internist, probably in his late 20s. He was a very caring person. I knew what he was going to tell me, so I sat and wrote my questions out to take with Scott and I. Dr. Cohen. had a difficult time getting the words out. I finally said, I have Hodgkin’s Disease, don’t I? Through tears, he said, “yes”. I asked him my questions, “Would my baby be ok?, What would I have to go through? Would I die?” were just some of the questions. I was told through tears that I would have my son at Moody and then be sent to Biloxi, Mississippi at Keesler AFB, because it was a bigger facility.

All went well with the birth of our son. He was very healthy. We named him Ryan Scott. I was able to stay home till the end of April when Scott drove me to Biloxi. His sister, Karen, came to watch Ryan. When I arrived, I was given a Staging laparotomy (all your major organs are biopsied, appendix and spleen removed). A doctor told me I had Hodgkin’s, Stage II A. I had a few days of care on the surgical ward and went home for a few weeks. It was great to have some time home with my baby and husband. In June, I went back to Keesler AFB to begin radiation treatment. That was the treatment decided upon by a Board of Doctors. This time back is when I met Dr. Rand Altemos.

He was only a few years older than me, not very tall, with brown hair. Dr. Altemos was friendly and caring. I soon found out that most of the patients called him, “Sugar Bear” like the bear on the cereal commercials. Dr. Altemos checked on me everyday at rounds. Several times, he came in, sat on the end of my bed, and looked at baby pictures I had just received in the mail. I think I was extremely fortunate to have someone like Dr. Altemos as my oncologist. I was 25, had a new baby over 300 miles from me, had cancer and didn’t know if I was going to live or die. Dr. Altemos was there comforting me and reassuring me.

In October I went home to our base housing at Moody AF Base. Scott and I were so happy.  We could finally try to be a normal family and try to put the past behind us. The day after Thanksgiving, Ryan and I drove to Decatur near Atlanta, GA to visit Scott’s father and step-mother. Scott was leaving the next day for peace-time war maneuvers at Nellis AF Base near Las Vegas. Scott called me over the weekend from the Atlanta airport to tell me he had been delayed. He also told me how much he loved me and our son. He kept saying he needed me to know how much he loved me! I think now it was a premonition. Scott was the navigator in an F-4 and the pilot’s name was Rick. They were killed in the F-4 doing peace time war maneuvers.

That first week was a haze. My parents came, Scott’s parents and sister came, and Scott’s grandparents came from Florida. My parents were watching Ryan while my father-in-law, Dick, and my stepmother-in-law took me out to get a dress to wear to the funeral we hoped we could hold on Saturday. That’s when Scott’s grandparents showed up at our Base house. My Mom handed Ryan to his great-grandmother. Very soon, she yelled for my Mom to take back Ryan, clutched her chest, and began to fall.

My parents caught her. The ambulance was called, she was taken to the A. F. Base Hospital about a mile away, and my sweet Dr. Cohen became her doctor. As soon as we were told when we came home, we went to the hospital. Dr. Cohen met us and told us time would tell. We stayed for awhile until Dr. Jerome told us to go get rest, and he would call if anything happened. About 1 am my phone rang, and it was Dr. Cohen telling me to come quickly because Scott’s Grandmother Jane wasn’t going to be with us long. I got dressed and rushed over. Dr. Cohen came out to meet me. He shook his head and said he couldn’t believe all I had been through. I went into her room, held her hand, and told her I loved her. Dick and Lou had not arrived yet. A sheriff’s deputy had to go get them, because there was no room phone and no cell phones back in the 1970s. Eventually, they arrived, and I left so they had time to say goodbye.

Dr. Jerome was another caring doctor who went the extra mile for his patients. I always hoped that I could someday see Dr. Jerome Cohen and Dr. Rand Altemos to thank them personally.

They were doctors I have never forgotten.

It Is What It Is


The numbers of Covid19 cases and deaths are shocking.  We having some falsely compare Covid19 to the flu, to now national tragedies such as 9/11 and the Vietnam War.  Eventually, more events will get combined into those descriptions such as the Oklahoma City bombing and the Korean War.  Numbers of deceased from all of our 20th century historical events combined to be compared to this virus is not only tragic, but an embarrassment.

Nobody gets any pleasure dealing with negative statistics.  But it does absolutely no good, to “bury your head in the sand,” pretending that something is not happening, in spite of the overwhelming numbers that we are facing.

What does not help, is the relentless attack that is perceived by some on certain political leaders.  While not to blame for the virus itself, decisions made, or not made, do get tied directly to the politician who decides them, good or bad.  And there will be plenty of time for arm-chair quarterbacking who should have done what and when once, ONCE this is actually under control.  And there will have to be answers.

The biggest distraction or shiny object however, seems to be wanting to “lessen the blow” of the actual virus and death counts, so that it does not seem so bad.  What has not helped thus far, besides the many trolls putting out false information, is the lack of information in the beginning when action needed to be taken, but now, and mistakes in actual documentation of the virus.  Of course mistakes happen.  But now those mistakes are seen as an opportunity to present, approve, and convince misinformation.  How else better can you get than to make the numbers lower to prove something not as bad is it may be.

In the state of Pennsyvlania, it was reported a 200 person count difference in recordings of Covid19 deaths.  No detailed explanation was given, and it most certainly did not take away the fact that hundreds at the time did in fact die from the virus.  But the problem of whatever that error caused, has understandably given right to question the accuracy.

But in Florida, a different situation has occurred.  As local governments have taken action to restore activities in their communities, it has been discovered things are not as they seem to be.  According to CDC guidelines, and phased opening recommendations by the President Of The United States, certain criteria needs to be met in order to restore business eventually to “as usual.”  What happens if you do not meet that criteria, but are facing all kinds of pressure to “re open” anyway at any cost?

It seems that the Tampa Bay Times have discovered at least one answer to that. question.

Early in April, the TBT had tried to obtain information on cases of Covid19 in regard to staff and residents living in long-term care facilities, of course one of the higher risks concerns.  The information is normally submitted by the agency themselves, to the Agency of Health of Florida.  At the critical object of this information, the ability of loved ones to be able to tell if their family member was in a facility facing a Covid19 outrbreak.  The state refused to produce the names of any facility citing privacy concerns.  No names of residents are staff were being exposed, so what was the privacy concern?  That information could have been used by families to remove their loved one before exposure.

In any case, the state was sued on the grounds of violating the 1st Amendment in regard to freedom of the press and free speech, and the names of the facilities and the numbers were released.  That should have been the end of this kind of behavior.  The state got caught suppressing information.  And then something else happened.

During a press conference later on, April 13th, Florida Surgeon General Scott Rivkees was abruptly removed from Governor Ron DeSantis’ cabinet meeting after making the comment that social distancing, one of the main pillars of the CDC guidelines to prevent the spread of Covid19, would be necessary until a vaccine was created.  Hardly what a tourist-driven state wants to hear.  Clearly an effort of silencing, and minimizing what was happening in Florida was underway so as to help make it possible to appear ready to return back to normal.  An impossible task if it still looks like Covid19 is still on the rise.

The reality is, Covid19 is still on the rise in Florida.  The problem is now, we cannot prove it.  It can be proven that the information cannot be obtained.  The Tampa Bay Times has just reported on this issue.

Florida has stopped releasing statistics from the medical coroners which include Covid19 death information.  Numbers have not been released in over a week.  Sure, we have all seen the numbers rise in Florida.  It is documented.  But it does not include the numbers released by the coroner’s offices.  This means that the death toll in Florida has the potential of being 10% higher than is being reported by the Florida Department of Health.  The information states where the deceased is from, diagnosis of death and some other information, but not the name.  So, for officials to claim it is a privacy issue after decades of the coroner’s offices operating this way, suddenly no longer doing so because of the Covid19 crisis, is bullshit.

At issue it is believed, a distinction between residency.  In other words, well known for an inflated “snow bird” population, seniors who spend long periods of time over the winter months in the sunshine state, should not be included in the death toll if they die from the virus, because, technically, they are not Florida residents.  Therefore, their death should not count for Florida.

Think about that for a moment.  The whole purpose of a count like a death count, or virus caseload, is to be able to tell how severe an area is dealing with an outbreak.  But Florida wants to only publish the deaths of residents only which of course from a public relations standpoint, makes Florida much healthier and safer than it really is.

But is an estimated death count 10% higher than stated, a couple of hundred deaths that big of a deal?  Absolutely.  If deaths are still climbing at a rate higher than recommended by the CDC, then the state should not proceed with restoring activities and businesses, something the governments of Florida are anxious to do.

As the saying goes, “if a tree falls in the woods, does it make a sound?”

I relate two stories to help understand how stupid, foolish, flawed, and dangerous the thinking of Florida is.

The first, a hypothetical.  A hotel on the Island of Gibip, property of another country, has 70 Americans staying in it, the rest of the occupancy, all locals.  A tragic fire engulfs the hotel, killing all of the Americans who did not get out of the building.  The headlines in the local paper state a miracle, no deaths at the hotel.  In spite of the truth that 70 people did die, but because they were not local, that fact was not stated so as not to hurt the tourist industry of that island.

Okay, that was an absurd example.  Though not really a stretch.  People died, their deaths not counted because they were not citizens.  Let me give you a real example, because it did happen.

I worked on an industrialized plant site.  My department had four buildings.  We all had our home building, but were eligible to work overtime in all buildings.  One particular evening, I was working in another building, and I was injured, pretty bad too.  An investigation would follow, as well as treatment for the injury.  OSHA would be involved since there would be lost time involved.

When I got the injury report, and was told, TOLD to sign it, I noticed a huge error.  The location of the accident was listed as my “home” building, not where the injury had occurred.  I stated the error needed to be corrected, as it was an official document, and was told “no”.  In rare unity, even my supervisor had agreed, that the injury took place in the other building, that is what needed to be recorded.  Of course, my supervisor did not want an injury ding on his record.  More importantly, legally, it should have stated where the injury took place.

Now the problem and the motive.  The building that I was working in, was steamrolling toward an impressive injury-free record, and was soon to be presented a nice reward for their effort.  Truth be told, there were likely other injuries that did not get reported.  But my injury definitely would have taken away this recognition.  They needed my injury reported in another building.  Regardless that the equipment involved did not even exist in my building.

Of course there was scorn by my fellow workers from the other building for daring to screw with their record and reward.  It was my fault for getting hurt, not theirs.  In the end, I lost.  The injury was falsely recorded in my “home” building where it did not occur.  And thirty employees got a recognition for their injury-free record.  That is what mattered.

That was a true story.  And it definitely emphasizes the importance of recording information and why it matters.  No one wants this pandemic over more than me.  But hiding and ignoring facts does not make the virus go away.  Only truth and actions.  And our country has been making a difference.  Okay, not fast enough for some, but it has been working.

Florida decided to restore some activities, and soon others will follow.  In spite of our numbers climbing, and numbers being hidden.  The truth will come out eventually, either by lawsuit, or by history.  But by then it may be too late.

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.

Post Navigation