Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

February 5, 2013


Today was an unplanned trip to MSKCC for an extra test ordered by Dr. M.  He is considered one of the best in the discipline and has experience with radiation damaged bodies.  Today he had ordered a barrium swallow scan.  I am dealing with a recurring swallowing issue.  Two years ago, I let it get bad enough that I was barely able to get water down my throat.  This period last well over eight months.  With the symptoms returning, I was not going to wait as long this time.

My doctors do not like that I wait until I hit DEFCON 5 to do something about my discomforts, and I am slowly coming to grips with living that way.  When it comes to the area of my body that took a major hit from radiation therapy, I know that symptoms, decisions, and actions will be critical.  My appointment is early this morning, earlier than I can normally get there using public transportation, but I was able to pull it off.  My tech was young, very polite, and soothing.  It is very easy to become overwhelmed once you see all the fancy equipment.  Even from twenty three years ago, I have always been fascinated with the technology.  I am not advanced enough to understand it fully, but enough to know what is going on.

Because of my fascination with the procedures, I am also able to pay attention and understand what is happening.  I probably should have added an asterisk when it comes to observation.  I am SUPER squeamish.  In spite of everything I have been through, I will pass out looking at a paper cut.  Back to topic.  The barrium swallow test is going to be basically a live xray of me swallowing a “radioactive” solution multiple times to watch how the liquid (and a couple of solid items) pass down my throat.  They will also be looking for areas that food and liquid get caught.  The substance is not the greatest tasting at all, and being warm does not make it easy to go down.  But it does go down.  At one point, I was given a small amount of a “fizzy” substance (similar to “pop rocks”) which I was supposed to swallow to get closest to my throat as this substance was going to dialate the throat.  That was wierd.  I was told to resist the urge to belch which I did not think was going to be difficult, but as soon as it went down, yep, I wanted to burp.  I held out though.

So that is all for the swallowing part of it.  What did they find?  I cannot stand when a tech tells me, “okay… good to go… the results will go to your doctor and you will hear from them.”  I should be happy with that after all, the last time I had to see a doctor immediately following a test, was when I had my heart surgery.  Unfortunately, I do not like surprises.  With my colonoscopy and endoscopy planned for next week, what currently stands as an outpatient procedure, I know can now be somewhat involved.  I am a “plan for the worst, hope for the best” kind of guy.

The first thing that they found clear as day was a hernia.  And yes, it is one of those discomforts that I have had for a long time, as in years.  As a long term survivor, I do my best to have my symptoms and complaints responded to and treated, so I do not want to come across as a hypochondriac.  If I recall, this was picked up on last year’s endoscopy, but was not of concern then.  The other item that was discovered they called a diverticulum.  I do not know if this is related to a diagnosis of diverticulitis or not, but one thing was clear.  The muscles of my esophagus were forcing this protrusion out which blocked off my esophagus.  Definitely a clear indication towards my swallowing issue.  I am not sure how it will be or if it will be corrected.

The one surprising thought that caught me off guard was when they explained to me what this condition had the potential to lead to, pneumonia.  For weeks, it drove me batty trying to figure out how I came down with pneumonia.  In the case of diverticulum, they call it aspiration pneumonia.  My last bout of pneumonia was all infection, which means that the pneumonia could have been caused by this.  The important words to me though, were when the doctor said I had true symptoms.  Duh!!!  I know they were true. 

As I left the hospital, I called home to Wendy to let her know how things had gone and that is when she told me that our youngest was getting quite ill from her ear infection and needed to get to the doctor.  I had the only available car, so I did what I had to.  Tear open my shirt exposing the capital letters SD on my chest, my cape now flowing, and got home as quickly as possible.  Okay, quick bus ride, quick train ride, and quick ride down the pike, up the pike.

Fortunately for my daughter, who has a hard time looking sick (remember this as adults, we require people to look and act sick when they are really sick) is happy as a seven-year-old who just downed eight ounces of pixie stix coated Sour Patch Kids.  So, neither of us gives the outward appearance that anything is wrong, but thanks to the doctors who care for us, care and knowledge result in diagnosis and healing.  Thankfully, Emmalie’s issue is less complicated than mine.

The Roles Of Vaccines


Vaccines.  We all got them as babies. and then, we had to get more in school.  I remember waiting in my first grade assembly line, we were getting our measles booster.  It was this loud air-powered gun that hit your flesh without any kind of warning.  It hurt like hell and left a round imprint on the outside of your biscep.  But other than tetatnus shots, these on average would be the last vaccine’s many would see.

The concept was simple.  Get the shot of the disease you are trying to prevent (either in live form virus or dead)  which would then trigger your body into an immune response, making antibodies to help fight off a future infection.  This is how getting the measles shot, chicken pox vaccine’s prevent getting the actual disease, but if by chance you get the disease first, if your body’s immune system is working properly, and with some luck, you will survive and build up immunity on your own.  This is why most people only get Chicken Pox once, or do they?

There are vaccines available for so many things today from polio, HPV, and a new strain of flu every year.  There are also vaccine’s against pneumonia and meningitis.  But these vaccines also have the possibitlity of giving someone a false sense of security.  We have all heard that “this year’s shot does not prevent all flu’s from occurring.”  Measles and polio we are pretty sure it is one shot and done.  We get the MMRV for measles, mumps, rhubella, and varicella (covers chicken pox) so that we do not get the chicken pox.  Researchers now believe that another booster is needed.

Back in the days of  my diagnostics, I had a procedure done called a laparotomy.  This was the diagnostic test being done, which was to determine what stage of Hodgkin’s Disease I was in.  The procedure involves going in through my abdomen, and removing my spleen, some lymph nodes, and a biopsy of my liver.  Involvement of any would determine my staging, and treatment.  When I questioned the removal of the spleen, and how we can live without it, as so many do, I had been told while it does have a purpose, we can live without it.  And we can live without it, I am proof.  Spleen removal was also popular for people who were in car accidents or had other severe trauma with interior bleeding.

When you realize the amount of things that a spleen does:   main function of the immune system filtering out old red cells while holding extra blood, hemoglobin is metabolized so that its byproducts can be handled by the liver, antibodies are removed of their bacteria just as if it were a large lymph node.  Today researchers know that the spleen plays a vital role in recovering from a heart attack by helping to regenerate cells.  The spleen does all of these things, yet we can live without it if we have to.

The bad news is that there are precautions that have to be taken if you become “asplenic” – aka, without a spleen.  Risks of infection and contracting illnesses are much higher.  A simple cut on the finger, some dental work involving scraping away bacteria (that is why we floss people), a co-worker who decides to tough it out rather than use a paid sick day, all increase our risks of not only becoming septic, which for the majority of patients is fatal, let alone those without a spleen.

So what do we do if we do not have this “non-vital organ” that clearly protects us from infections and diseases.  In my case, prior to my splenectomy (part of the laparotomy), I had been injected with the Pneumovax vaccine.  At the time I was told it would be for life.  Since then, the value has been bumped up to needing every ten years or so.  But in my particular case, the Pneumovax has not worked.  Part of my long term cancer surveillance has included monitoring my titers for pneumonia and meningitis.  Titers are simply proof that your body reacted to having been exposed to that particular illness.  My titers showed nothing for either pneumonia or meningitis.  Over a period of 3 years I had received over 10 Pneumovax shots and at least 6 menningicoccal shots.  As far as I can tell, I have been okay as far as the titers for menningitis.  But I am majorly struggling against the pneumoccal titers.

You need to understand,  The Pneumovax only protects against one type of pneumnia I believe.  The problem is, there are many many more types.  So after a bout last year with pneumonia and sepsis, and another bout with double pneumonia, and all of the shots I have taken, my body has still only generated enough titers to show 50% protection.  Simple terms, I am nowhere near the protection I need and am now faced with yet more vaccines.  Now they will try something called Prevnar, which is a pneumococcal vaccine that covers several types of pneumonia to see what that does for me.

It sucks really.  I have gone through all of those vaccines, and twice last year, I came down with severe cases of pneumonia.  Worse yet, I had no obvious symptoms (breathing, coughing, congestion, NOTHING), except by some dumb fluke, my wife took my temperature which resulted in a trip to the emergency room both times, one by ambulance.

At this point, I am scared to have any more junk injected into me afraid of what all that exposure will do.  I have to be TB tested every year, which is basicly done with the skin test, you are injected with TB.  For Flu, you are injected with the flu, either live virus or dead virus.  I can never receive a live virus vaccine, especially like the one from a couple of years ago for the swine flu.  I have been fortunate, having actually had chicken pox, I have not had shingles.  Shingles for a long term cancer survivor, especially one without a spleen is pure torture.  And I know several people who get them many times a year.  The vaccines are not an option because they are live virus vaccines.

So what is my best defense?  You.  Both of us, wash our hands.  Cover our mouth and nose when we cough and sneeze, then sanitize our hands again.  Stay home from work if you are sick.  And while I respect a parent’s right not to have their child vaccinated, you do not have the right to expose my child or have my child become a carrier and infect me.

On my Med Alert bracelet is a lot of information about me.  But there is one important word on there that gets everyone’s attention when treating me… “asplenic”.  This lets every EMT, every nurse, tech, doctor, know that extra precautions must be taken with me if I am being treated.  Now you know.

no to shingles/live vaccines

Does Size Really Matter? – Deciding On A Health Facility


Memorial Sloan Kettering.  The Mayo Clinic.  MD Anderson.  University Of Pennsylvania.  The list goes on and on for the top hospitals when it comes to cancer treatments.  There is a different list of facilities when it comes to heart surgeries, pulmonary issues, and so on.  Many of our nations “best” hospitals are “teaching” hospitals, meaning that they are more likely to have the current diagnostic tools and treatments available.

I have taken quite a few moments to decide what hospitals to be taken too, of course ulitmately, I am at the hands of my wife to honor my wishes.  The closest hospital to us just also happens to be the last hospital in the world I would ever want to be taken to.  It has the worst reputation for cleanliness and sterility, in other words, you have a fairly good chance of going home with MRSA.  The longer you stay in that hospital, the better the chances of contracting MRSA.  So it is not necessarily a good thing if a hospital keeps you longer to recover from whatever took you there.  The reason that my wife insists on taking me there?  It is the only way that my daughters would be able to come and visit with me as transportation time alone would be an additional hour and a half.  On a school night forget it with having homework.  So, in that regard, I appreciate being local.  It is a smaller hospital, which recently had been bought out by a larger network, still not on the national level, but the buyout has been expected to improve the quality of the local facility.  I am just not sure that it has.

When I dealt with my Hodgkin’s Disease, I was not really aware of all of the “big” network and teaching hospitals available to me.  I did believe that if I were to go to any of them, besides the great distance, I was not sure that they could give me emotionally what I was going to need, that I would be treated just as a number.  Personally, I needed more than that.  The doctor that I chose worked out of a small network, but more importantly, as all cancer patients probably had the oppportunity for this, I knew a patient personally that he cured, my grandmother.  Granted, she was treated for breast cancer, but he saved her life, he could save mine.  The big risk I took by doing this, he was an older doctor, so there was a chance that I would be treated with older modes of treatment and not the most current available.  But I believed that if I had the confidence in him, I would have confidence in the medicine, and that would get me through.

At various points in my life, I would end up in the hospital and always felt comfortable with the hospital that I grew up near.  It has become quite the network and one of the best in the country.  So when I had some uncontrollable bleeding from an area that no man ever wants to see blood coming from, it was only natural that I went to that hospital.  When it was determined that it was not cancer or cardiac related (yes, blood in the urine can be attributed to a valve issue with the heart), but rather a kidney stone, how quickly that stone situation got resolved depended on where the roaming kidney stone unit was and what day.  Yes, hospitals in my area do not have their own “lithotripsy” machine.  The first time that it would be back at this hospital would be in approximately two weeks, however, it was going to be back in town the coming Tuesday at a hospital that I swore I would never set foot in ever again.  My grandmother had passed away in that hospital, and while it was not their fault as to the cause of death, I did have a problem with their methods of convincing people the importance of extending their terminal lives at the expense of their dignity.  As far as I was concerned, this hospital tortured my grandmother during her dying days.

But for anyone who has ever had a kidney stone, or gall stone for that matter, no one will deny the pain level to drive a six foot 300 pound giant of a human being into a fetal position in pure pain, than a 4mm stone.  I needed to have this resolved before the stone set to travel from my kidney.  I was going to have to have the lithotripsy (shock-waving the kidney stone into obliteration), at this hospital.

Now let me tell you about how small this hospital is.  I was the first scheduled appointment that Tuesday morning.  Now remember, this is a fully functioning hospital.  It also evidently has hours of operation.  So the security guard unlocks the door at 5:30am precisely, and I am already third in line.  I cannot see what is happening, but I do see a lot of head-shaking.  Just like that, I am called to the receptionist and begin my admission, or the process that the hospital will be using in place of that procedure.  You see, when I offered them my driver’s license and insurance card, they told me that their computers were not operating.  They did not state if it was expected to be a long drawn out process or not.  I stated that I had a 5:30 procedure scheduled so it was urgent that I be registered and they offered to make a photo copy of my indentification.  Fifteen seconds later the woman behind the desk came back and said that their copying machine was not functioning either.

Did I mention that I did not want to be in this hospital in the first place?  And so, without any identification, which I had to store in a locker while I was in for the lithotripsy, I was escorted into a room, where I would be anesthetized, with no identification, no hospital bracelet, nothing.  And so, the procedure went on, because I could not risk returning to the state of pain that the pea-sized stone had been causing me.  And to add insult to injury, they actually allowed me to sign myself out of the hospital later that morning, totally unattended.

I realize that the last example was an extreme case.  But it did happen.  And I went against my gut feeling in being treated at this hospital.  I got lucky compared to how this episode could have turned out.

My heart surgery, that was a totally different story.  I happened to be at that hospital in a connected doctor’s office.  I was already there, but I was already aware that the hospital had a good reputation.  But even that reputation is limited when it comes to long term cancer treatment effects.

When I found out, that I was not done with my cancer history, I had the major decision to make.  And it did not even come down to the biggest hospital or the hospital that made me feel all snuggly and warm.  I needed a network that had history, studied long term side effects.  My prior posts have gone into great detail on just how urgent my decisions can be.

As you can see, it all depends on the situation, do you go with the big network or the little hospital.  Does size really matter?  To some it does, to others, it’s what you do with what you know.

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