Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “radiation”

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.

No Chocolate Chips In The Cookie Dough

I will apologize for the misleading title.  But I use it to be the most polite way for me to discuss infertility.  Up until recent years, being unable to have children was the hardest thing for me to deal with as a result of the one chemotherapy drug I had been given, Mustragen.

As soon as it had been determined that I would have to go through chemo and Mustragen would be one of the drugs in the chemo cocktail, my oncologist tried, emphasis on tried (really a feeble attempt) to convince me to store sperm for the future.  His warning (again, feeble attempt) was to get it done as soon as possible because time was important to start treatments.  Preliminary testing told me that virity was pretty much non-existent and would not be worth the expense.  At age 22, who was I to argue.  I was not thinking about kids while I am still trying to accept that I have cancer.  But my wife did convince me that it was worth it.

I found a facility in East Orange, New Jersey.  All I had to do was send them my deposit, sounds simple enough.  Except that even pre-9/11 UPS was still suspicious about packages and refused to take my shipment without knowing what the contents were.  Okay, total blank on how to tell a strange man that he was picking up my sperm, ejaculate, baby batter, manjam, spunk, seed, oh I could keep going.  But no, I said they were “hopefully chocolate chips” from my cookie dough.  I almost had him believing me, until he saw the biohazard symbol on the package.  And with that, “I” was off to the cryotank.  Or so I thought.  Testing prior to the freezing led to the company opting not to freeze my donation.  Any future heir would depend on fate, luck, and survival, getting through eight months of a drug not confirmed to cause infertility.

I waited approximately two years from the end of treatments to approach my wife about trying to finally start a family.  I was convinced that any toxins either from the chemo or radiation were gone.  We tried for a few months with no success, so I made the call to my doctor who ordered a sperm count.  Trying to get the deed done at home, and with my wife’s assistance was difficult (unlike any other time when I was much too eager), but to do it right there at the lab, I only had so much time for lunch that day.

The results came back as I was afraid, zero.  I had no sperm at all.  There were no chocolate chips in the cookie dough.  Any chance of a blood heir were gone.  Next to having lost my hair, not being able to have my kids was worse.  It would end up being another year before I brought up alternative ideas with my wife.  Divorce would eventually take care of that issue completely.

But a few years later, married once again, my new wife knew my history.  Any fertility checks would be for her benefit.  We would seek out a donor from a company in Virginia.  But the first testing was going to be on me.  I pointed out to the specialist that “I had no chocolate chips in my cookie dough” and after he got done laughing at me, began to ask questions  that made no sense to me.  It was simple.  I could not have kids.

According to him it was not that simple.  He wanted to check for sperm of course, but also a blood test which would determine if my body was making the right hormones.  Because if my body was not, then that officially would be the end of it.  However, if my body did make the hormones, then it had to be about a blockage.  With the hormones, my body would be making the sperm.  Surgically, something could be corrected.  As usual though, nothing.

But it was amazing to think the possibility might have existed, I would have jumpt at it.  But we did pursue artificial means.  Unfortunately, results were not positive, which then put us in the situation of “we only have so much mony left – we can’t do both, onr or the other.

So, we adopted two girls from China.  Both came from different areas within the province and around two hours apart.  The process of adopting was amazing and will be covered in another post.

Stay Home If You Are Sick? What If You Cannot?

Your child has a fever or vomits in school, you get the phone call to come and pick the child up.  Even when there is only ten minutes left to go in the day.  Last year our school district came up with some goofy policy in dealing with lice.  To be honest, I am not sure who does the actual determination as far as contamination when it comes to eggs and nits, but once again, the kids get sent home.  For the child, it is no big deal.  If there is homework missed, it would probably go home with a classmate if it was important, or a test would just be made up when the child returned to school.

But as adults we are expected to endure much more.  Not only are we expected to get to work, crawl into work, or be rolled on a stretcher into work, but we are expected to be exposed to all kinds of germs, bacteria, and viruses.  Currently, we are in the midst of a major flu outbreak.  It all depends on which media source you want to listen to, to determine just how bad the outbreak is every year.  A few years ago, it was the bird flu that was concerning everyone.  Last year swine flu acually led to my company having an attendance policy just for that outbreak.

If an employee had any sniffle, the company wanted you to make the decision to stay home.  Of course, we had a strict attendance policy that did not pay the employee for the first three days out sick.  But if you were sent home from work by health services suspected of swine flu, you were not allowed to return to work for seven days.  So the employer sends you home at your expense for three days and then you get paid for the remaining four.  The kicker is that the reprimand system kicks in at five days.  Nine days out you are suspended for five days (that is right, you are suspended five days for inconveniencing your employer if you are sick nine days in a year).  But at day twelve, potentially you will be fired, for being sick.

Consider this, whether paid sick time or unpaid, absenteeism is a huge expense for a company to absorb.  It is definitely worse if the employer has to pay the absent empoyee to do nothing at home, while expecting those who have come into work to make up the lost time, often without any extra pay.  So it becomes an accepted and tolerated procedure, reprimand the employee for not coming in to work, whether withholding pay, or by punitive actions such as suspensions and terminations.  The ironic thing is that this usually has no impact on the person who abuses any attendance system but has exactly the opposite effect on the employee with the legitimate illness.

It is normally the employee with the legitimate illness who is not used to getting a paycheck deducted with sick time.  Often times those employees live on budgets, so the stress of not missing pay from the check has the potential to make things worse.  So the reaction is for the employee with the legitimate illness to force themselves to work.  The employee is already at risk because of the depeleted immune system, but with physical exertion and exhaustion, the chances of recovery or worse, the illness becoming more dangerous,  has to be recognized at least as unfair. 

And if there is no concern for the legitimately ill employee, there should be even more disappointment in the concern for the other workers who are not contaminated with whatever bug the sick employee is dealing with.  So while the media spreads global fear of an Armageddon-like epidimic of flu, employers with their absentee policies actually contribute to the spreading of illnesses like the flu, strep throat, and other contagious diseases. 

If you are watching the bouncing ball, one sick person is bad, but risking several sick people is okay.  The cost of lost labor for one employee is bad, several employees out is very bad from a lost productivity point of view.  But that is exactly what employers create.

There is one final critical thing to be considered.  And it something no one, sick employee or greedy employer does not even consider, because it is something that neither can see.  There are people in the world, and especially in the work force who have what is called a compromised immune system.  A compromised immune system can be depressed supressed, compromised, and a few other descript conditions.  And unless one of those less unfortunate patients speak up, there is no way to know.

I am one of those who have a compromised immune systems.  I was not born this way, I was made that way.As part of the staging process of my Hodgkin’s Disease and determining the need for chemotherapy or radiation or both, a procedure called a laparotomy was performed.  One of the things done during this surgery was removal of the spleen to see if the organ is riddled with Hodgkin’s.  It was considered “no big deal” as I “didn’t really need a spleen” as others do without.  It was actually quite commone, not just for staging cancer, but in many forms of trauma, the spleen was removed.  This creates a condition for a patient being declared “asplenic”.

In recent times, it has been realized just how important the spleen is to the human being.  The spleen kickstarts your immune system and keeps it fighting whatever is fighting against your body.  For example, have a cold?  Your spleen helps to fight it.  Scrape and cut your knee?  The spleen helps to fight infection.  Having a heart attack?  The spleen helps to recover.  Simply put, no spleen, the chances of your fighting an infection or surviving are made that more difficult.  To help give me a chance, over the last several years, I had been given multiple pneumovax and menningicoccal vaccines.  My body does not respond in antibody production like it needs to which means that if you have a cold, I have an even bigger chance of coming down with it.  In spite of my children being innoculated for chicken pox, if there is a child at school who was not vaccinated, comes down with chicken pox, my daughters could carry it home.  Strep?  Increased chance.  Twice last year (within nine months to be exact), I was taken to the emergency room to be diagnosed with two different pneumonias, one case being septic, the other double.  But both types were determined to be “Community Acquired” which means I got it from someone else.  Someone else who was sick and either came to work, came to church, or some other public passing, created a near-fatal situation for me.  No, I know it was not on purpose, because they did not know I was at an increased risk or surely they would have avoided me.

My comments are more than just pushing for hand sanitizer every two feet or training everyone to cough into their elbows.  It is about awareness and consideration.  The flu might not be fatal for the majority of people, but for some, there is an increased risk.  Unlike last year when my employer forced a swine flu absence policy, it does not show any signs of improving preventive care today.

Remember Jim Henson, creator of the muppets?  Died of complications of strep, originally thought t o be pneumonia.  He was also asplenic.  In spite of agressive treatments used on asplenic patients, the creator of Kermit the Frog passed away at the age of 53 after two cardiac arrests.

I should not have to state publicly that I do not want to die, and that I do not want to catch what someone has.  It is common sense how to prevent the spread of things like colds and flu, clean hands, and staying home when you are sick.  I only wish employers realized that people do get legitimately sick and while there are those who play the system, those who do not, should not have to pay with their lives.

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