Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “hospital”

My First Visit To Sloan Kettering Memorial Cancer Center

March 3, 1995 was a day that I had waited for five years to occur.  I was going to use the word “cured” with confidence that my Hodgkin’s Disease would be gone forever.  I had learned so much over those five years.  I had to watch if I got a high fever, keep an eye out for lumps and discolorations, all common sense stuff that I could do on my own without having to pay a co-pay for.  And in spite of statistics being based on five year survival rates, there was no evidence that I was going to comply with those odds.  Things were on my side for a long life.

I recently wrote a post on “big hospital vs. little hospital” so I won’t repeat my thoughts on that at this time.  As far as I was concerned, it was life as usual.  I would see my family doctor, whose practice is an hour away from my home, once a year, for a seasonal allergy shot.  I never thought about hospitalization, because prior to my Hodgkin’s Disease, I did not need to worry about hospitals.

But then I got the rude awakening when I dared to complain about a symtpom that I had ignored for nearly four months.  I was told that I needed open heart surgery at age 42, and it was due to radiation damage from my treatments eighteen years earlier.  I was at a hospital that I was more than familiar with for many reasons, of which is another post.  But the Lehigh Valley Hospital was one of the biggest networks in the area, so I felt in good hands.

One of the first things that I should have done when I got out of the hospital was head to Atlantic City or Las Vegas.  I was one of the luckiest people on the planet because I not only pre-empted my pending fatal heart attack, but I would come to find out, after getting my surgical report, that my surgery was based on the care for the average heart patient, not for someone exposed to four times the lifetime exposure of radiation and chemotheraputic drugs such as Bleomyacin,  Adriamyacin and other anthracycline drugs.  Decisions that were made then, could have had much different results.  Neither my doctors, nurses, or myself knew what was at risk.

In the past, I had been involved with an on-line support group for Long Term Survivors of cancer.  Up until now, I had never felt like I belonged there, because everyone that I had met on this list, were dealing with ailments blamed on their cancer treatments, cardiac, pulmonary, liver, secondary cancers, etc..  At worst, any issues that I had been dealing with from my cancer treatments were some hair that had not grown back, infertility issues, and thyroid issues.  Up until now.  So the first thing I did from the hospital was not visit a casino or play the lottery, I went back to those that I knew, would know best.

I am not qualified to define what exactly a “Long Term Cancer Survivor” is, or determine what criteria is to be met.  There is no committee collecting membership dues.  There is no ruler.  There are moderators, who are survivors themselves facing severe health issues related to their treatments, and they have the unpopular challenge of protecting each participant from common email attacks or personality clashes.  The fact is, we have enough to deal with.  And so it began, the journey to find doctors who specialize in long term cancer survivors.

Unfortunately, long term side effects are not widely studied by primary care physicians, specialists, and other caregivers.  Only in recent years does the discipline even have a recognizable heartbeat with an occasional article in the New England Journal or other publication.  Of course, the researchers and pharmacutical companies did not spend much time or money on late side effects, because we were not expected to survive a lifetime.  But we do.

Through the Childrens Oncology Group, I learned that there were two facilities that were within a decent day’s road trip, in Philadelphia at the University Of Pennsylvania and in Manhattan at Sloan Kettering Memorial Cancer Center.  From the internet support group, I knew a lot more about the program at MSKCC, but knew that both hospitals were some of the best in the country.

Scared, and running out of hope, I contacted the first name that I recognized from MSKCC, Dr. O.  In him, I struck gold.  He originally practiced in Texas.  For decades, this doctor studied Hodgkin’s Disease and survivorship of the late effects from treatments.  To get an appointment with him was the equivalent of winning the lottery.  I know of some other patients that see him, and knew that I was being cared for by the best, the leader, the example for survival care.  Through his leadership and mentorship, there are now many survivor clinics accross the United States, and the knowledge is now spreading across the world.  Survivors of cancer were not only being recognized, being represented, but being cared for.

Today, there are protocols for new patients when they reach the end of their treatments.  The medicines and procedures are less invasive, less toxic, and result in less severe side effects, but to be honest, the risks do still exist.  That is why there is the Relay For Life and Stand Up 2 Cancer.  Better ways of diagnosing and treating cancer need to, and can still be found.  With the follow-up protocol, the chances for picking up a late developing side effect, or secondary cancer, can now be found earlier and have the better success to survive, as if surviving cancer was not enough of a challenge.

My first trip to Manahattan since high school was overwhelming enough let alone to walk into one of the greatest medical facilities in the world.  I was greeted by Nick, also known as the “Ambassador” who gave me the instructions I needed to locate Dr. O’s office.  It was there that I met Beth, a nurse practitioner who had spent a long time with the cancer survivor program.  We spent close to an hour going over my health history.  She offered me compassion, empathy, and care as it was obvious, an entire new world was collapsing all around me.  I thought I was only going to be talking about cardiac issues.  But there was so much more.

Eventually, Dr. O came in and spent another hour with me, this time explaining all the things that had been discovered about cancer survivors like me, what had been done to me, and what would need to be done to care for me.  As he put it, “I want to make sure that your grandchildren get to know the great man you are and what you have been through.”  Okay, I was not really thinking about grandparenthood at 42, but I like his long term thinking.  Together we came up with a plan including retrieving my old records to find out exactly what I had been exposed to, and compare what they now know as far as what to look for in late developing side effects.  These are all things that are done now with current patients.

Nearly five years later, comparisons can now be made for me that show the progression of any of the side effects as there were no basline studies done on me 23 years ago.  I have a complete understanding of what my survival has meant to me, but also what it means to others, my family, my friends, and other survivors.  There are millions of us who have survived cancer.  Not all surivivors will develope side effects.  Not all survivors will know if what they may be dealing with may actually be attributed to their treatments.  That could be a good thing, take it from me.  It is a Pandora’s Box to know that more issues can occur, will occur, to know the increased risks at being proactive or letting things take their course.

This past week, it had been confirmed a symptom that I complained about two years ago, had returned, and why.  It is also suspected of causing a serious bout of “aspiration pneumonia” two months ago.  but this is just the beginning stages as further investigation will take place later this week to get an overall view from beginning to end, and then a new treatment plan will be determined as I continue to age towards grandparenthood.  Thankfully, because of Dr. O, and more than a dozen other caregivers that he has me deal with, I am going to get that chance.

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.

Closure – I’m Sorry That It Took This Long

I am grateful to anyone who is charged with having to take care of me as a patient.  It is not that I am a bad patient to deal with, quite the contrary.  Hardly a peep is ever heard out of me.  Complaints are never made about discomfort or pain.  While hospitalized, I do not hit the nurse “call” button multiple times in an hour.  But, there in lies the issue.  Nurses and technicians do have hearts.  They do care about their patients.  And I am certain that they are not happy when a patient lets themselves get so far into a level of pain and discomfort before asking for assistance. 

But a lot of good writing about my gratitude for my caregivers does here.  Spoiler alert – except for a couple of years ago, it had been two decades since I had seen the two caregivers that saved my life, literally, saved my life.  There was one thing that I did not do in my excitedness to be finished with my treatments – say “thank you” to Noreen and Brenda, my radiation tech and my oncology nurse.  These two individuals deal with one of the most horrible illnesses known to man, often resulting in death.  But they also have successes, of which I am one.  But did they know that?

So two years ago, my twentieth year in remission, or some consider cured of my Hodgkin’s Disease, I set out to find the two women responsible for saving my life.  The odds were against me, as I only remembered their first names, but at least that was a start.  I found Noreen no longer at the hospital I was treated with radiation, but rather at another hospital in another network, still in the same field, just no longer directly as a technician, more in line with computer support for the newer technology.

Brenda was a bit more challenging to find.  She had retired, and no one from the doctor’s office would release any information to me.  So, I left them my name and phone number and an explanation of who I was (imagine, I had survived longer than any of their employees stayed working there).  A phone call from a nurse who had worked with Brenda had called me with good news.  Though retired, Brenda was still involved with cancer support, just in the hospital environment.  She was serving as emotional support, and did this three days a week.

I was set.  I tried to remember what it was like the last time that I had seen each of them.  I definitely remembered what they looked like.  Wow.  I had pushed those memories so far back because all I wanted to do was forget them once I was done.  But as I thought about it, not only owing my life to them, they cared for me.  They cared about me.  Together, they were the reasons that I stayed in that network for my treatments.

It was the following week, and I was headed to Allentown for physical therapy.  Both women were approximately ten minutes away, in each direction.  Since the hospital where Noreen was closest to where I was doing physical therapy, I stopped to see her first.  I arrived at the reception area of the radiation therapy department.  I clearly caught the receptionist off guard the way that I requested to see Noreen.  I was refusing to give my name (I don’t know why), just told the woman to tell Noreen that a former patient of hers has come by to see her.

Noreen came through the double doors, and less the white lab coat, I knew it was her.  She looked like she had seen a ghost.  I asked her if she remembered me and she did.  Actually it was due to the unusual circumstance of the first day of my radiation treatments, the linear accelerator broke down with me on the table.  Immediate flashbacks to Bill Bixby on the television swelling and turning green into the incredible Hulk.

We spent the next twenty minutes or so catching up.  She told me of her new work with her old field and then went on to tell me all the advances that had been made in raditation therapy since my day.  And then she heard what I had been through with the heart bypass surgery, and all of the other long term side effects I was diagnosed with from my treatments.  And tears fell from her eyes.  “We had no idea.  We had no idea what would happen to you and other patients with you.  We just knew it worked.”  I told her that I had no regrets, and how good my life had finally become.  And then I did what I should have done twenty years before that, I told her “thank you.”  We hugged, and then parted ways.  If I was going to get to see Brenda, I needed to hurry as it was getting late.

The office that Brenda has worked in when she treated me was still standing, but the oncology practice had moved across the street, to a wing built onto the hospital.  I got turned around quite a few times, but found my way to the cancer floor.  I was led by the recepetionist back through an office, weaving through cubicles.  The last cubicle on the right was occupied by an elderly woman with a perfectly frosted hair style, no chance of mistaken identity, this was Brenda.  I knocked on her cubicle wall and she turned around.

There was that motherly comforting smile that got me through nine months worth of Fridays and treatments.  Brenda was now volunteering to work with cancer patients with personal issues.  She was perfect for that role.  She asked how I had made out all of these years.  Eventually we got to “family” and told her how I wish I had followed her advice when I was younger, but I did have my family after all, with two beautiful daughters who I had adopted.  I told her that I am now seen at Memorial Sloan Kettering in the Survivorship Program to follow up my long term needs.

Since I was in the hospital visiting, I asked Brenda if John (my counselor when I was going through treatments) was still working in the hospital, and he was.  So Brenda took me downstairs to yet another reception area.  I saw a lot of familiar faces and then out came the gentlest giant of a man, John.  I did not get to spend much time with him like I did with Brenda and Noreen, but I did get to ask him about the first counselor I saw before I began my chemo.  Her name was Illona, another great mother figure to me.  Sadly, John informed me that she had past away several years ago, in the cruelest of ironies, from cancer.

One final thing to do before I ended this overwhelmingly emotional visit.  I thanked each and every one of them for giving me the life, in spite of the late side effects I deal with, that I truly love and cherish.  I do not know if I will ever see them again, but I made sure they knew, that they did cure this patient and I was appreciative and thankful for that.

Noreen, Brenda, John, and Illona, thank you.

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