Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “February, 2021”

26 Feb 2021

A Difficult Choice


This is a time that many have been waiting for.  There are those who have no intention of participating.  There are many who are unsure as what to do.

Full disclosure (what else is new with my posts?), if I contract Covid19, the complications from the virus would “kill” me.  That is not per MSM (main stream media) or any other propaganda.  That is per my cardiologist who is all too aware of the current condition of my heart, and the two surgeries that have been done to it, and now add my carotid surgery.  Include the fact that I have no spleen (asplenia), along with cardiac issues I have pulmonary issues from my treatments for Hodgkin’s Lymphoma.  I do have high blood pressure, and am diabetic.  I check off every box of vulnerabilities when it comes to Covid19.  Of all the viruses I have faced over the decades with my immunity issues, this one is the first one that I have received such strong advice to avoid at all costs.

I have taken this virus very seriously.  I had faith that the right things were going to be done with this horrific unknown, until the voices in charge were silenced.  And then, we just had to wait for a plan, for a treatment, for mitigation, for a vaccine.  The problem was, there was no plan.  We know this.  And if you dared challenge this strategy (or lack of), then another problem was created, you were perceived as being against the president.  With a virus that would eventually kill more people than three of our major wars combined, and we knew the potential for it, how could we let this happen?

The biggest war cry in trying to find something to treat Covid19 with was, “we just don’t know”.  But anything that showed hope, was to immediately be pushed as the “cure all”, without any studies.  And for the record, the ideas being suggested at that time, not an option for me, as the one drug caused cardiac issues (which I already had), and taking a steroid is not advisable for someone with cardiac issues.

We were given advice on how to be out and about, but even that had turned into a divide falsely on the grounds that again, it was a perceived attack on the president who did everything opposite of what experts advised to do.  Do you remember what it was like in school, to be expected to do the right thing, but looking around at other kids who were not going to do the right thing, so you did not also?  It is called peer pressure.

So, let me put it into terms that you can understand.  Covid19 was an unknown from day one.  Science is about trial and error.  There were bound to be mistakes and errors, but at no time, was that grounds to take the virus less serious.  The mitigation efforts we had were not perfect, and to this day still are not, but they are all we have, and there at least has been benefit to them, in spite of those who oppose them.

Masks do not hurt you.  If you get sick from one, chances are you are likely to not have had clean hands when you handled it, or perhaps that one time, you let your guard down.  But the truth is, the heroes in medicine wear them all damn day, many times in twelve hour shifts.  You can certainly wear one when you are around someone, but some won’t.  Peer pressure.  Has nothing to do with freedom.  A year into this, I am still free.  A person who opposes a mask is just worried they look foolish wearing one.

Social distance.  I for one am all too glad to no longer shake hands, hug, or greet with a smooch on the cheek.  I will not miss that.  But I would like to go to a movie or dine out, and I will some day, hopefully in the next few months.  And I do want my kids back in school physically.  The harm that has been done by their physical absence in class is not because of the virus, but because of the valuable time that was wasted right from the beginning in facing Covid19.  Again, if my childrens’ school district is any example, they will be back in school full time, and safely, with all the mitigations recommended by the CDC.

So that brings me to the final part of this nightmare, the vaccines.  We finally have three of them.  To be clear, I am not an anti-vaxxer.  But I do not believe in getting every one, but clearly, there have been vaccines that have been necessary to eradicate the illness and make sure we never dealt with those tragedies again.  Chances are, most of anyone reading this, does not know of anyone who had and died from polio.  There is a reason for that, the vaccine.  But if you have an older parent, they are likely able to tell you what it was like to see someone with, or die from polio.  And the comment will be, “I don’t ever want to see that again.”

You do not have to be one of the more than 500,000 families touched by death from Covid19 to say, “I don’t ever want to see a crisis like this again.”  That is what was said in 1918, and we learned nothing from that time period.  But now we have a choice, something we did not have a year ago.  Yes, we do not know if we can eradicate this virus, but the maximum needs to be done to try.

I am one of the vulnerable.  I am supposed to be one that will get the vaccine before the average healthy non-senior.  And in spite of everything I wrote, my decision is not an easy one.  But I know, that I have put an enormous amount of time and thought into it.

I am encouraged by the mRNA vaccines because these do not contain any form of the virus.  That is a big deal for me as I have written previously about my concerns with “live” or “deactivated” vaccines.  And I have strong reason to have faith in at least one of those vaccines, because I personally know someone, who was involved in the process of discovering the vaccine.  Their advice, “you need this vaccine.”

But, being a long term cancer survivor, I have been a guinea pig before.  My treatments were discovered, and could treat my cancer.  What was not studied were the late side effects that could develop if I lived long enough.  And for the last year and a half, I have been fighting for my life, literally, because science just did not know.

The same situation exists now, an extreme lack of data.  Speaking of only my situation, there is zero data on people with a compromised immune system.  There is zero data available for long term side effects of the vaccine.  And then there is one more concern which I will get into in a minute.  But first, two of my most trusted advocates.

I have more than a half dozen doctors that take care of all of my needs.  Two of those, my primary care (I have had for over 30 years), and the doctor who has been there for me since the discovery of my late term issues from day one (almost thirteen years ago).  These two doctors are the ones I trust completely, and that is not an easy thing for me to do.  And oddly, they are not on the same page for this issue, each for their own reason.  Which means my decision will fall squarely on me.

So, here is how I have come to the decision that I have.  There is a factor with my health, and my immunity that my doctors and I am aware of, my body does not make antibodies easily, in other words, unless my body is challenged with multiple boosters, I may not develop immunity, the vaccines would be a waste.

At one time, in the beginning of my cancer journey when my spleen was removed, I was given a pneumovax shot for pneumonia.  This was to be for life.  It ended up not being so.  Then they said it was good for ten years.  As part of my surveillance, my blood was checked for titers (antibody development), and after one shot, I had none.  In fact, it would take two more boosters that one year alone, and then a couple years later, three more boosters.  And I had this same issue when it came to the menningitis vaccine.

While I believe the vaccine is remarkably effective, actually efficacy rates that were unimaginable at one time, the data is only on healthy people, and only for three months.  There is no data for someone with my health history.  There is no protocol to check for antibodies after getting the vaccine.  There is no protocol for getting any needed booster of the vaccine, as historically my body has proven could be likely.

So, here is my situation.  I have friends saying, “but Paul, what do you have to lose, at least give it a shot (no pun intended)?”  And it is true, it could work.  I just do not know, there is no data or protocol to prove it.  But me getting the shot would do nothing for me, to change the way I have gone about life for the last year, the same way I have done with all the other times viruses have popped up.  Getting the shot would not allow me to hang out in crowded restaurants or movie theaters again.  The vaccine would give me potentially a false sense of security.

But worse for me, because I have no problem with the mitigation efforts, I have gone much longer with restrictions as a cancer patient, the vaccine would be a waste on me from someone who could benefit from it.  That is not to say I will never get it.  I am likely to.  As I said, I do believe in it.  But I want the data to support my situation.  And I want the vaccine to benefit someone definitely.  I have put  a lot of thought into this.  No politics.  No MSM.  Even amongst my two top medical advocates cannot agree, but are both factual in their arguments.  So, for me, it comes to a moral issue.

I will get the vaccine, but will wait for the data, I will wait for the protocols.

Posted in Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
25 Feb 2021

The Difference A Year Makes


To say I have a lot of experience in medicine and hospitals, is an understatement.  The majority of time has been as a patient, but I have also spent my share of time as a caregiver.

The one thing that is most important for most patients, is emotional support.  Yes, caring and empathetic nurses and doctors are great, but those closest to you, family and/or friends are just as important.  You show up to an appointment for surgery or treatment, and you might have your spouse, a parent, or someone else close, to help comfort you after it is over.  This is almost as important as the event itself.

As I said, I have spent a long time in medicine, so I know this drill very well.  But instead of reflecting on my lifetime of experience, I will just make note of the last two years.  To be in full disclosure, most of my medical events and emergencies, I was pretty much on my own handling the situations.  To show the diversity that I am trying to present, I have two examples.

A couple of years ago, I was rushed to the hospital with chest pains.  Fortunately, it ended up being nothing.  But, having support, or a health advocate along, made a huge difference.  In the event I would be able to communicate, they possessed the necessary information medical personnel would need to know about me before treating me (due to my late health issues from my treatment for Hodgkin’s Lymphoma).  This individual was there from the time I arrived, and eventually moved to a room for observation, until I was released.

And then, there was the second heart surgery I had just before that ER trip.  My health advocate was there before the surgery, during the surgery, and when I came to.  The next day, my advocate came and picked me up to transport me home.

Fortunately, my visits to the hospital have decreased over recent years.  I did not need to make any trips to the hospital since then.

And then Covid19 hit.  A trip to the hospital would never be the same.  While I have not been to the ER, I have heard that loved ones are not even allowed into the Emergency Room area, at best, waiting in their cars in the parking lot, for a phone call from inside, updating them on the situation.  Once the patient is dealt with, and either released or moved to a room, only then can the loved one be present.

As I mentioned, I recently underwent a major surgery, again, due to my progressive health issues from my treatments for Hodgkin’s.  I am used to going through my experiences mostly on my own.  But this is the first time, I was being denied having that support with me, at least in the pre-surgery stage.  There is a calmness that can be provided to help with the nerves, especially during such a critical surgery.  And for once, I had an advocate that wanted to be there.  But was not allowed.

After clearing through a rapid Covid test, I took an early morning Uber to the hospital, alone.  Again, in the past, this was never a thought.  But as I walked into the hospital, alone, I soon discovered why, these kinds of restrictions are in place, and why.  I went through screening, and then went upstairs to the reception room, waiting to be called.

My advocate, would remain at home, waiting for updates to come, prep for surgery, start surgery, completion, and post op.  Once I was moved to my room for recovery, then my advocate was allowed to come to the hospital, go through screenings as well, and spent time with me, as well as gathering more information about my upcoming days of recovery.

The main company I had, were the various nurses.  I will always sing the praises of these angels (as well as point out the one or two I have had that were flat out bitches and should not be nurses).  It seemed that almost all of my nurses were in the field barely even a year, definitely less than two years.

I have known many nurses over the years, and I am sure so many have stories and memories of their careers, good and sad ones.  These nurses were great.  I never got to see their faces, because they were always gowned up with masks.  But I knew they were young.  It is hard to imagine, as I am sure for them, they could never have thought their first years as a nurse would be dealing with the devastation of Covid19.

In talking with them, they shared the memories of happy endings, and tragic ones.  They spoke of the efforts they did to comfort both patients and their families, coordinating so that final days would not have to spent alone.  They themselves, because of their vocation, put their lives on the lines every day.

Not to be left out, even the custodians and food service people that came by, took the precautions.  And you know what?  In a building that you would feel would have the highest risk for Covid with patients being treated for it, I never felt more safe than I did there, and the transmission rates are lowest in most hospitals because of these precautions.  It will be a while until I have this confidence to return to dining in experiences, movies, and concerts again.  I know that day will come.  I can wait.  The alternative of me contracting Covid, with the warning from my doctors (not the media), I would not survive.

I bring this up for a reason.  We are all tired and fatigued with the restrictions on our social activities and ability to travel.  False comments on sacrifices recommended to not only stay healthy but somehow try to reduce the severity of the spread of our nations second worst health crisis, and the push to “open” everything and ignore simple mitigation efforts only show that we will be dealing with Covid a lot longer.  The problem was that the crisis was not handled properly from the beginning.  We know this.

I do believe this crisis will come to an end, and we will have learned a very tragic lesson, and hopefully never repeat it.  Or at the least, we have learned how to “live with it” via herd immunity.

In any case, there needs to come a time, that loved ones and other support advocates are one day allowed to accompany patients again.  Cancer patients, surgery patients, and even just doctor visits, that company is just too important to the success of the patient.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
22 Feb 2021

The 6th Sword Of Damocles, And There Are More


In my last post, I explained who Damocles was, and how the story of the sword of Damocles relates to that of a long term survivor of Hodgkin’s Lymphoma like me.  So much so, that it has an official medical term, “Damocles Syndrome.”  Simply put, “waiting for the other shoe to drop.”

In the tale of Damocles, the question was raised why there was a sword hanging over the king’s throne, held by only one strand of a horse’s tail, clearly a dangerous threat.  And it had been explained that it was as a reminder of the perils that lay ahead, being a king, having power, that sword could drop at any time, just like harm could come to the king from anywhere.  Hence, “the other shoe dropping,” and the life of a Hodgkin’s Lymphoma long term survivor.

I mentioned that I have more than a dozen of these “swords” (that I know of at least), and at least five have fallen previously.  Recently, I had to deal with my 6th sword, one of the more serious “swords” or “shoes” in my medical record.

If you missed the prior post, for reference, feel free to go back and read it before you continue.  Otherwise, in April of 2008, following emergency open heart surgery for a “widow maker” heart bypass, Pandora’s Box was opened.  And most, if not all of the other health issues that were all attributed to my cancer treatments came out.

One of those issues, one I now refer to as a “Sword of Damocles,” was discovered upon an ultrasound at that time.  My carotid arteries were showing progressive results of calcification/blockages, at the time, approximate 70%.  That was the good news.  The bad news was, they were not going to do anything about it at that time, because the risk of causing a stroke by performing surgery, was greater than not doing anything at all.  Instead, we would wait.  Wait for it to get bad enough that it would have to be repaired and the risk of doing nothing would now be greater than doing something, the “Sword Of Damocles.”

This is just one health issue of more than a dozen.  I cannot tell you how many times I have been told to “just get over it” or “move on, enjoy your life, forget all this bad shit.”  I cannot afford to do that.  That does not mean that I do not enjoy my life.  I do enjoy life, my way.

So, anyhoo, after twelve years, it appears the strand holding this sword had frayed to the point of a 90% blockage of my left carotid.  It was now time to repair.  Doing nothing would likely result in me having a stroke or worse.  The next question, would be how to fix it.

Back twelve years ago, the main course of treatment was either medication or a procedure called a Carotid Endarterectomy, in which they would perform surgery on the carotid, and clear out the plaque causing the blockage.  The problem, for survivors like me, the blockage is not plaque, it is a calcification from the progressive damage from radiation therapy for my Hodgkin’s Lymphoma.  Medication would not help that either.  The damage would progress until completely blocked.  Additionally, because of the radiation damage to my body, bleeding and healing are both complicated potentially causing more issues.

Fast forward twelve years however, allow some research and progress, a new procedure had come about, called TCAR (Transcarotid Artery Revascularization).  The problem with the old surgery, as pieces of plaque or calcification would break away, they would be carried to the brain, causing immediate damage.  With TCAR (and this is a lot more technical than I am describing it), the blood is redirected from the brain, through an external line (think beef funnel) into the femoral artery in the groin.  A stent (something thought not possible either twelve years ago), would then be able to be placed with a much lower risk of stroke and other complications.  Recovery time is also much more quick.

With the input and approval of my personal doctors, I underwent this TCAR and have once again, re-secured that “Sword of Damocles”.  There are potential complications that have to be follow-up for of course, I am used to that.  But for now, that artery is flowing like it is supposed to.

Here is the frustrating thing, and really for all long term survivors.  TCAR (and other current procedures for other issues) are not well known by doctors.  Few and far between are doctors who know what to do with patients like me.

Prior to going through this procedure, I went back to my fellow survivors, remembering that many had faced carotid issues, but had not heard back from anyone on how they fared.  Nor had I heard anything from anyone who had undergone TCAR.  While I was clearly not the first one ever to go through TCAR, apparently I was going to be the first one in our circle to go through this procedure.

But others began responding to me, that they too were facing carotid concerns, so they were following me and my journey.  One fellow survivor was on an immediate path, facing the older CEA method of repair.  Upon hearing what I was going to go through, he sought a second opinion, and discovered that he was indeed eligible for TCAR also, and that would be scheduled.

This is the thing that frustrates me and ALL other survivors.  WHY DOES ALL OF MEDICINE NOT KNOW OF THIS PROCEDURE AND THE NEEDS OF CERTAIN INDIVIDUALS BEING ITS ONLY POSSIBILITY?

Three weeks after my surgery, my fellow survivor was having his done.  He had all kinds of questions for me, about pain, recovery, what to expect.  While I am sure everyone is likely to have their own assessments and reactions, and me being known for being somewhat of a “baby” when it comes to pain, I assured him that I was doing well, minimal pain, and recovery going as expected.

It helps when you listen to doctor’s orders.

The good news is, he went through his TCAR, and is in that healing stage as well.  I will keep in contact with him to make sure that continues.

But the moral for us long term cancer survivors that “healthy” family and friends need to understand about us, we cannot “just get over it” or “move on.”  If we are lucky, we only have one sword hanging over us, but others have many more.  And they are hanging by just one strand of horse tail.  We need to be conscious of the danger we face, so that we can prepare, and if possible, prevent, a fatal event.

 

 

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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