Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Just Another Bump In The Road


Yesterday did not go as planned, or as I expected when I wake up in the morning.  The fact is, as was pointed out to me, I had not been “looking” right for at least a couple of days.

If you have been reading my blog, you already know that my health history is kind of complicated.  One of my issues, is my breathing.  A complication of the extreme radiation therapy (amount and method no longer used), I have what is called “restrictive lung disease”.  By its simplest description, my lower left lung lobe is completely useless.  Pulmonary function testing puts my capacity at somewhere around 75%.

There are two things that will aggravate my breathing, physical exertion and the weather.  By physical exertion, it is hit or miss what will cause labored breathing.  Walking a slight incline or climbing steps can bring on an attack, usually not too severe because once it hits, it has my attention and I pretty much stop in my tracks to let my lungs catch up.  The weather affects me three ways; humidity, cold air, and wind.  These flares are a bit tougher to control, because when they come on, I have nowhere to go.  If I am walking from the parking garage at work to my building, I am lucky to get half-way there before it hits, and cannot turn around, must not stop to rest because that does not get me out of the environment causing the flare, I can only go forward.  This will usually take anywhere from a half hour to forty-five minutes to settle my lungs down.  With the wind I can usually get away with some sort of face covering which reduces the incidence or severity.

So yesterday, I had my ski neck/face covering on, and my breathing was no different than most other days, but instead of my lungs easing up, the breathing got harder, more labored.  I am afforded breaks throughout my work day, so at my first break, I did all I could do get this episode to resolve.  But it did not.  In fact, it only got worse.  By eleven o’clock, my legs began to feel like lead weights, and my feet were now dragging.  Unfortunately, I am a stubborn ass and was still convinced that I could get this under control, and now my lunch period was here.

Through lunch, no resolve and I returned to work.  The heavy feeling in my legs turned to a burning in my thighs.  And then the heaviness spread to my left arm.  I made the call.

“Wendy, listen to me.  Call your dad.  He HAS to pick the kids up.  You are taking me to the hospital.  See you in five minutes.”  A co-worker had already called the hospital ahead of time and told me of my arrival.  One thing that I get ridiculed fairly often by friends, co-workers, employer, insurance company, and occasionally family, is why, WHY do I travel all the way to New York City or Allentown for my care, when there are so many other hospitals and doctors around where I live?  I am going to tell you.

Unlike the last two Emergency Room visits (this is my third in less than a year), for the first time, when I warn the ER doctor about my complicated health history, he took it so seriously.  I told him to take the phone number and name off of the medic alert bracelet and call it.  His diagnostic plan and treatment options depending on his willingness to be open-minded for what I call a “trainwreck” that he was going to be dealing with.

When he came back to the room, he told me, “I can understand why you deal with them.  Your doctor is one of the nicest practitioners that I have ever spoken with, and so willing to tell me everything I needed to know.  In fact, he sent your medical file immediately.  I am so impressed.”  Finally, I was going to have a caregiver besides my family practitioner and obviously my long term survivor doctors.

That was the easy part.  The most stressful part for me (read U.R. Sharpe in “Pages”), are needles.  I had a total of seven people trying to get blood from me.  Only two were successful, the others were forced to give up because of my stress level.  That also resulted in having to try an alternate test for blood clots, instead of contrast through IV, I underwent a Nuclear Lung Scan.  Sounds scary right?  Not when you have had as much radiation as I have.  And instead of drinking it, I had to inhale it, to get into my lungs.  But you see, I do what I have to, my life depends on it.

 

There were diagnosis that he was suspecting based on my health history, and could get right to them with the information that he had already in his hands.  Blood clot, eliminated by way of blood work, and heart attack eliminated via blood work and EKG.  Other workups cancelled out pneumonia (things come in threes do they not) or infection.

So the doctor’s opinion was either that my restrictive lung disease is getting worse or perhaps it is one of the underlying cardiac issues that I am aware of that are being followed.  Because I am so critical with my care, I do not have a local cardiologist, which the ER doc was more than convincing in his argument, that with New York City being a two hour drive away, it might just be a good idea to have someone local.  This hospital network just so happens to have one of the highest rated cardiac reputations in the area.  And because of the way this doctor approached me from the beginning, instead of being defensive, I am now focused on what needs to be done.

This morning the appointment with my new cardiologist has been made, and I am finally taking it easy.  Man do I hate doing that, and it will be another mandatory day tomorrow.

So the lesson you have hopefully learned, do not wait until your body is 3/4 of the way affected to get to the emergency room.  You should not need that much convincing that something is wrong.  This is not my first time, and I am positive it will not be the last.  But it is the shortest stay I have had.  And it is because I reacted sooner.  Yes I said that.

$.04 – Two Cents For Each Opinion


We do it when we look for auto loan rates.  When we go shopping, we compare prices and quality.  Even if there is a movie that we want to see so badly, but the critics said it stinks, we seek out and value the opinion of someone else, because they might feel differently.

Then why would we not do it for a medical opinion?  Two of the most common reasons are passivity and the belief that our lack of knowledge does not qualify us to question the doctors and technicians who clearly should know, right?

When the decision is more radical than simply selecting a medication, you have the right, check that, you have the obligation to ask questions, to get a second opinion.  When time allows you, and in most cases it probably will, you need to ask the question, what else can be done.

A pregnant woman who is five months into her term is recently diagnosed with Lymphoma.  This particular situation occurs quite often (not to be confused with “because of the pregnancy she developed Lymphoma).  The mother is faced with so many decisions,  can treatment wait until after the birth or  what effects will occur to the unborn child?  The mother will not be concerned with hurting the doctor’s feelings by requesting or demanding a second opinion.  She needs to know and understand all of her options, and the possible outcomes of those decisions.

One of the first young men that I counseled had been diagnosed with a cancer that would have left him with a urine bag, not to mention affect the possibility of fatherhood.  Clearly upset, shaken, and defeated, he was surprised when I had asked him, “what did the second doctor say?”  A second opinion took him out of state, but to another research institution that gave him an option of remaining completely intact, functional, and cured.

I have to stress, sometimes you do not have this luxury.  My heart surgery was one of those moments.  A stress test had discovered a blockage.  Its severity had not been known, but the cardiologist was certain it could be taken care of with simple catherterization and stinting.  Only when they got in there, did they realize the opposite, and far worse.  It was a common condition for this hospital to see, but not the cause.  The doctors felt that they could save my life, and while I was coming out of the anesthesia from the earlier procedure, my wife gave the authorization to schedule the emergency bypass surgery for early the next morning.  In that case, time was not an option.

But when you have the time, and face it, other than your heart beat stopping you will have the time, consider a second opinion, especially when it comes to something radical like a mastectomy or the removal of a lung.  You have to understand, if you go to see a surgeon for a diagnosis, their specialty is going to be surgery.  If you go to a radiation oncologist for a cancer diagnosis, chances are likely, the doctor will push radiation.

I am not a doctor, nor do I play one on television.  But when it came to my Hodgin’s Disease diagnosis and treatments, there were a total of eight doctors involved.  For my late effect issues, I have more than a dozen.  I am certain that my insurance carrier is not happywith all of the bills, but I am alive, and my quality of life is as best as it can be, and would have been far worse had I closed the door on the other options made available to me.

I honestly believe, that even 23 years later, if my radiation oncologist were to bump into me on the street, he would probably still swear that he wants me to undergo preventive radiation therapy.  I believe this because he chased me for the first five years of my remission.

There is the chance that a doctor may get annoyed with a delay for a second opinion, but if the doctor is worth anything, they will welcome a second opinion, a chance to discover something that might have been overlooked, some newer option available.  Just as it only took a decade to come up with a better and safer treatment for Hodgkin’s, unless my oncologist was kept well-informed of the progress, I would not have had the options. 

I am blessed to have a great team of doctors who work with each other, in spite of the geographical distance.  Time is rarely wasted as they consult with each other, which has become my second opinion.  They know that if they did not do it themselves, then I would do it for them.   Doctors know time is important, but so is the sanity of a patient that all efforts to minimize the effect to quality of life have been exhausted.

12,088,800


The opening song in one of the greatest musicals, Rent, is called “Seasons Of Love.”  I am paraphrasing, but the song asks “how do you measure a year?  In daylights, midnights, sunsets, coffees, inches…”  It is a beautiful song.

I have titled this post “12,088,800” with special accounting in mind.  March 3rd is the 23rd anniversary of completing my chemotherapy for Hodgkin’s Disease.  23 Years – 12,088,800 minutes.  Compared to the 10,400 minutes that I was given the chemotherapy, or the 30,600 minutes from the beginning of my Hodgkin’s Journey to the completion, 12.1 million minutes is a long time.

12 million not big enough number?  14 million.  There are over 14 million survivors of cancer.

I am often accused of under-appreciating what I have gone through from my first counselor to the long term caregivers I see today.  I was treated with four times the lifetime maximum exposure to ionized radiation.  I was injected with a chemical that Sadaam Hussein used to gas his own people with.  I was battling a disease that has killed over 600,000 Americans a year, over 1500 per month.  Chances are, this paragraph has your attention.  It should have mine, and it does to a degree, but not what it should.

March 3rd, 1990, I completed 30 treatments of radiation to the upper half of my body, and 8 cycles (fancy term in my case, for months) of a chemotherapy regimen referred to as MOPP-ABV.  I had five surgical scars to show the lengths travelled for my diagnosis and staging.  Statistics of survival were only referred to with a five year mark.  Up until March 3rd, 1995, I had never heard of anyone surviving cancer, let alone more than a year.

Fast forward twenty-three years, as I enjoy destroying odds and statistics, I once again have the world by the tails.  I officially have my longest monogamous relationship with the mother of the two most beautiful girls.  I have a nice house and a great job that I not only enjoy, but take great pride that it is a career that allows me to “pay back” the industry that has saved my life on numerous occasions.  My daughters are now old enough and curious about my “cancer” history.  I am mindful of the time when I was a child, and the only thing I knew about cancer was “people died.”  They are reminded with each conversation that people can survive cancer.  As if this were not enough, brief as it is, I am continuing a local political journey for our local school board that began three years ago.  There is so much for me to be proud of, appreciate, and celebrate.

But yet, on this date, March 3rd, I afford myself only the opportunity to recognize the importance of this anniversary.  I cannot celebrate it, which most people cannot understand.  Wife, kids, career, surviving cancer for decades, I have every reason in the world to celebrate.  But I do not, I cannot.  My survivorship comes with an extremely burdensome feeling, guilt.  Survivor’s guilt.  I live, while others have not.  I am in remission for decades, yet many deal with their third, fourth, fifth recurrence.  Hundreds of patients and survivors have come into my life.  Regardless the distance, I held each of their hands emotionally at the least, to offer comfort, confidence, solace.  But I have also shed so many tears, some of joy, too many of pain.

This is a great day, make no mistake.  I recognize the importance, the value of my survival.  In twenty three years, just two decades, I have personally witnessed the great things that have come in the progress of safer and more accurate diagnostics, safer and more effective treatments.  Because of research from institutions such as Memorial Sloan Kettering Cancer Hospital, the University Of Pennsylvania, and so many other institutions who have made cancer research a top priority, and without the support of organizations such as the Relay For Life, Livestrong, StandUp2Cancer, and so many more, that progress would not be possible.

Here’s to another year.  Thank you.  From the bottom of my heart, for those that took the journey of cancer before me, with me, and after me, I truly mean that.

“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 road just yet, you’ll catch up to me.”

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