Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Scanxiety


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If there is one feeling possibly worse than the possible diagnosis of cancer, it is the anticipation of a pending PET scan (the current standard for declaring a patient is in remission, or is still in remission).

I try not to publish two posts in one day, but a have several Facebook friends who are going through scans or receiving news about the results of their scans today through the upcoming weeks.  So, as one thing I have tried to justify my survivorship as a long term cancer survivor, I want to offer this hope.

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Many people reading “Paul’s Heart” are also members of on-line support groups as well as Facebook pages.  These support areas can be cancer specific, or cancer general.  And these can be a great tool from support to information.  But there has to be an awareness of balance if you subscribe to any of these groups.

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Here is the logic you need to understand.  If you did not have cancer, would you be on a support web list? Of course you would not.  If  you are dealing with cancer, would you be on a support list?  Most likely.  Unlike when I went through my treatments for Hodgkin’s Lymphoma, I never had the internet for support.  But then, what about the period of time, once you have heard, or expect to hear the word remission?  Would you still plan on participating on these support sites anymore?  There is a good likelihood not.  All we want as a cancer patient is to be done with it, once and for all.  Only the few, like me, stick around.  But for the most part, only people that need help, will seek help.

One of the biggest fears resulting from “scanxiety” is that a patient will not get to hear the word remission, or worse, hear the word relapse.  And these are real possibilities.  They do occur.  But if you participate in internet support groups, there are chances you will hear a lot more about relapses, than you will hear about long term cures.  And why would that be?  Someone who has been cured, like mentioned earlier, will most likely want to move on.  That patient has no need to be on an internet support group.  But the patient who is still dealing with cancer, or must deal with it again, will be on the internet.  So again, using logic, just because you cannot see all the long term cures, does not mean they are not there.  But in fact, they are there, in great numbers.  Over 12,000,000 of us.

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I do know how many of you are feeling right now.  In over 25 years, I have met thousands of cancer survivors, many of which I still hear from.  I know what each and every one of you feel, as you do the  mid-point scan, the post treatment scan, and all the other scans after that.  It does get easier.  You have to believe that what you have gone through is enough.  And here is where some tough love is going to come in… and if by some chance, you are still dealing with it… what are you going to do about it?  You are going to keep fighting because that is who you are.

If you have just completed scans recently, or will be getting them done soon, my thoughts are with each and every one of you.  I hope you all get to hear the word remission, or at least, the disease is decreasing.  From there, following the news of remission, will be the six month anniversary, the first anniversary, the fifth anniversary, the 10th, and then like me, the 25th!

Try not to be overwhelmed by what you see others going through.  They are going through their own battle.  You have one thing to do, get through that scan and get on that road of remission.  Speaking of which, a closing line I am known to use with people who reach remission…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that highway yet, hurry up.  Once you get on it, it’s a great ride!”

Cancer – Facing Fears Of Relapse


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The line from Indian Jones that everyone remembers, “Snakes, I hate snakes!”  Always followed up in other IJ movies, “why does it always have to be snakes?”

This morning I was asked, “what are you afraid of?”  The individual was quite shocked at my reply, “nothing.”  Sure, there are things I do not like, there are situations that concern me, but being afraid, fear, is an often paralyzing circumstance.

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In the cancer world, and this is just my opinion, I do not think the feeling of fear is as strong at diagnosis, as it becomes post treatment.  Of course, we do not look forward to a diagnosis of cancer, but I think the majority of us faced with this situation will make up our minds, “I am going to get through this.”  We may not be crazy about some of the diagnostic tests that we get put through, but there generally is no fear at work.

Oddly, fear hits cancer patients, and survivors, usually after treatment ends.  And it can be a crippling fear, the fear of relapse, or recurrence.  And this is perfectly normal.  After all, it was one thing to take on the beast once, and beat it.  It is another to worry that it could come back.  And if it came back, knowing what we went through the first time, and to deal with it again, would use stronger methods of treatment that we could not be certain we could tolerate, or worse, not work at all because perhaps our cancer was not curable after all.  This is a legitimate feeling.

So, how do you deal with it?  I could tell you it gets better, just that simple.  And of course you would probably roll your eyes hearing me say that because that simply will not erase your concern.  But I will tell you, it does get better.  I am proof.  I went through the first follow up scan… to the six month mark… to my first anniversary… to number five.  And to be honest, even 25 years out now, the possibility exists that I could still face it again.  But the nerves of that first scan, soon faded months later, and then completely within a couple of years.

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I have faced a lot in my 25 year survivor period, and the two years battling cancer.  And I could easily let fear influence my prognosis.  But I do not.  I like the above phrasing of the letters from the word “fear”.  I will use another instance of my life where I actually apply the phrases of “fear” to get through my trials.  And it works no matter what situation I have faced, or will face in the future.

As if cancer were not bad enough, I faced open heart surgery in 2008.  If fear would have any appropriate time or place, this would be one of those instances.  But…

1)  I “faced it.”  I was going to die without the emergency bypass.  Fear had no place in the decision making.  I wanted to live.

2)  I “explored it.”  I checked out my surgeons, options.  I studied what could potentially happen to prepare for the surgery, and for life after the procedure.  I made sure everything was in place for my personal life, should anything happen.

3)  I “accepted it.”  I was either going to get through the surgery, or I was going to die.  It was that simple.  Only two results.  I was going to survive and move on with my life, in which case everything matters, or I would die, and then what exactly could I do about that?  So the idea was simple.  I was going to get through it.

4)  I “responded.”  My surgical team and post care team were the best.  I put all my faith in each and every one to deal with the risks, and especially pain management.  I could control nothing that they were in control of themselves.

I have used this philosophy many times in my life, and not just for illnesses.  And accepting what I must face, instead of being afraid of it, is what gets me through every time.  Even as I approach my sixth decade of existence, there are still things that I have not had to face in my life.  And I will face everything the same way as I have succeeded before.

I currently have friends who are still going through treatments, dealing with relapses, and some who are knocking on that door of the word “remission.”  And these are definitely scary times.  But in time, one day turns to one week.  One week turns to one month.  One month turns into one year.  One year turns into five years.  Five years turns into ten years.  Ten years turns into twenty-five.  And so on.  And each day you face those fears head on, you succeed because you know you have to.  And it does get easier.  I have been there and done that.

Yes, I know you want the treatments to end.  Yes, I know you want to hear the word remission.  Yes, I know you do not want to hear “new disease” or “relapse.”  But the fact is, it can happen.  But what will you do about it?  You will fight it just as hard as you did before.  And you know how to do it, and get through it.  There is no room for fear.  You face it, explore it, accept it, and respond.

The Hidden Danger Of Sepsis


The following post is quite graphic and intense.  Reader discretion is advised, but so very important to know about.

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Somewhere in my distant past, I heard the word “septic shock” at least once.  I never really knew anything about it, other than it was something quite serious.  If I recall, it ended with a person dying.  But back then, I had no concerns about what exactly it was.

In 2012, that changed for me, in a near fatal way.  There was nothing really unusual about the night before, when I got ready for sleep.  It was a Sunday night, because it was the day of my oldest daughter’s birthday.  It was a full weekend of activity between work and the party.  By the end of the night, I was worn out.  That was pretty much it.  Around 11pm, I brushed my teeth, and crawled in to bed, to try to get as much sleep as I could before starting the new work week.

At around 3am, I abruptly sat up, in horror, and projectile vomited uncontrollably for nearly a minute as I attempted, quite miserably to get to the toilet in our master bathroom.  No sooner had the vomiting stopped, immense pain hit me hard and fast.  And when I say pain, it was worse than both the surgery from my heart bypass and my kidney stone combined.  The pain was so bad, I passed out.

The next thing that I remember, I was laying on a gurney, with two paramedics (I may have been hallucinating because I could have sworn one of them was my former brother in law from a former marriage), and two police officers in my house.  I had come to just briefly, and recall telling my now former spouse, “make sure the paramedics have my emergency cards from my wallet.”

The cards I was referring to, supplied information about the unique circumstances with my body, since it had been discovered that over the decades since my cancer treatment, had caused many issues that could complicate any kind of treatment for what was happening to me.

I was rolled out of my bedroom, and I saw my then 9 year old and 7 year old daughters watching me get rolled down the stairs and put into an ambulance.  Sadly, this is not the first time that they had witnessed an emergency situation with me, nor would it be the last.

I have no recollection of the next many hours.  Whether I was sedated, or just out cold, I have no idea, nor any memory.  When I did wake up though, I was given the news.  I had pneumonia.

Immediately I questioned how that could be.  I was not coughing prior to this episode.  I was not sick.  But then the explanation went further, and I heard the words, “you are septic.”

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I was in the stage somewhere between severe sepsis and septic shock.  In any case, my life literally depending on timing.  I person diagnosed with sepsis, can die within 24 hours if not treated aggressively enough.  It is believed that I was not dealing with the common pneumonia that most people are familiar with, but rather a “mechanically” related pneumonia called “aspiration pneumonia.”  I will try to keep it simple as far as the description, but complications from the radiation therapy that I had decades ago, caused a condition with my esophagus.  This can possibly, and did this particular instance, cause me to inhale bacteria from decaying food that had not gone done my esophagus.  This led to my sepsis.

Once sepsis is diagnosed, as I said, you literally have hours to get it under control, with extreme amounts of IV antibiotics.  It is important to keep the infection, the sepsis from reaching the heart.  Hence, death.  With me being without a spleen, this was even more critical.  Because without a spleen, my body cannot make the antibodies, or make them quick enough, and in a large enough supply to fight whatever infection I am dealing with.

Long story short, I did eventually recover.  But I was startled from the news that I was given, which was followed up by one of the most stern lectures I had ever been given about my post cancer care.

There is a blood level that is a sure give-away that you are dealing with sepsis, called “lactic acid”.  This was information provided to me from a friend who is also a paramedic who had told me just how often, sepsis goes undiagnosed in hospitals resulting in patients deaths.  The level for sepsis diagnosis of lactic acid is greater than 4.  My level was nearly double.  And the tongue lashing I got, was for not getting to the hospital sooner.  I could not believe it, because I had not idea, was not symptomatic at all until I woke up at 3am.  I was told I was septic for more than 24 hours already.  This was too close of a call.

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Again, I had no idea I was septic, and I nearly died from it.  And I have learned a lot about this, as I would deal with it again, nine months later with another episode of pneumonia.  But further research that I feel is important enough to share with you right now.

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I recently learned of a friend whose sister just passed away.  She had pneumonia, was being treated for it, fell in the hospital, and though cured of the pneumonia, evidently developed some sort of infection, and died.  It turned out she had broken her hip, but the infection was too great to fight it with antibiotics.  And I know of at least two others right now who are dealing with recurring sepsis.

This is no joke.  Lactic acid should be a mandatory blood test, especially if you are in a hospital.

A friend recently shared a blog about 10 things necessary to know about sepsis, from assessment, to transport, to treatment.  I am including the link on this page.  I know this post was quite graphic, but if you can make yourself aware of the hidden dangers of sepsis, if you are ever faced with the possibility of sepsis, you will become your greatest advocate for yourself, or for your loved ones.

http://www.ems1.com/mobile-healthcare/articles/2184293-Sepsis-10-things-you-need-to-know-to-save-lives

 

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