Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2013”

Another Anniversary – What A Way To Spend It

When I started this project, “Paul’s Heart,” I had two motives.  The first, I wanted to see if I had what it took to write a book, about what, I was not sure.  But I needed to see if I had the ability and the commitment.  And second, I wanted my voice to be able to help at least one person who is struggling with something.  By documenting the many struggles that I face and have faced, I hope that it gives hope and courage to get beyond the struggle.

I have been  very public with some personal stories.  I figure that once I made the commitment to “blogging”, transparency is what would make my blog successful.  Some of my stories may be difficult to read because they stir up old emotions or memories.  Admittedly, the stories can also be quite graphic, and I try to give fair warning when those stories reach that level.

Tomorrow, I will be meeting with yet another doctor to discuss a recurring symtom that was so difficult to deal with just a couple of years ago, as it appears it is returning.  I do not want it to return to the level that it had gotten to before.  I will be discussing the procedure of an endoscopy, which is basically going to be pictures and biopsies if needed down my throat into my stomach.  Care must be taken because of the overexposure to radiation during my treatment days.  The doctor will be looking for what is causing an increasing inability to swallow and frequent nausea (with no warning or apparent cause).  If possible, this will be done along with a colonoscopy, often referred to as a “man’s worst nightmare.”  I have resisted this procedure, in spite again of the radiation history as well as some other unusual symptoms.

But it is time, time to “man up.”  But instead of a night out with the guys, or watching a football game, I now have a new excuse for getting out of our anniversary dinner tomorrow, and Valentine’s Day as well.  Wendy could not possibly hold it against me that my doctors want to check me out for my own health, could she?

It will be eleven years tomorrow, and Wendy will have been dealing with all of these health issues with me for nearly half of those years.  She knew about my cancer history when we started dating, my inability to have children as a result of my treatments, but nothing could have prepared her for the statement, “your husband needs to have emergency bypass heart surgery.  We have him set up for first thing tomorrow.”  And with that, began a different direction than we had planned for our lives together.  But I could not, and I emphasize, would not have been able to do it without her.

So our anniversary tomorrow will not be the most romantic, if at all.  Depending on my arrival time home, we might be able to get a quick dinner.  As for Valentine’s Day, um… I am not sure what to expect as far as how my belly will be feeling after having cameras going in through each end.  While the endoscopy is not usual for the average healthy person, for someone with my health history and radiation exposure, it is common.  But a colonoscopy is common.  I have tried to avoid it.  I know the benefits of detecting colon cancer early.  So, for all my reasons in delay, I will dispell those myths following the procedure, after I “man up.”

Happy Anniversary Wen.

“May Wan Tee”

“May Wan Tee”.  I am probably spelling it wrong, but this phrase is one that will stick with me forever.

In January of 2004, Wendy and I were notified that we had a daughter that we were going to be travelling to China to meet.  There were meetings to attend, forms to be signed, and monies to be prepared.  Most importantly, since we would be traveling out of the US, we felt that it would be in our best interest to notify our credit card banks about our plans in the event security checked in and shut done our cards because of activity in China.  This plan had been confirmed by many other families, especially with credit union banks.

And so our credit union was notified that we would be leaving for China on March 15 and planned to return two weeks later.  We were wished well, and the process continued.  On March 7th, we got a call from our adoption agency, travel time had been moved up and we would be leaving on the 13th now.  Of course we are all excited.  What an ”inconvenience” to leave for our daughter earlier?!?

So we arrive at Newark International and check in for our flight.  We bought three seats round trip to allow for our slightly larger than average needs, plus it gave us leg room.  Bringing Madison back using only three seats was not going to be a problem.  The problem occurred when we found out that not only were our three seats not next to each other, not only were we not seated next to our “open” seat that we purchased, but Madison’s seat was approximately fifteen rows in front of either one of us (who happened to be sitting on opposite sides of the airplane.  This was not a budget flight, this was a major international carrier.  After a panicked and irate phone call to our agency concerning this snafu, all was settled before we took off for Hong Kong.

I have mentioned two details now that do not coordinate with the original plans, and as you are about to read, they will have a major impact.  Once we land in Hong Kong, our entire travel group, consisting of nine other great families, meet our guide for this leg of the trip.  While Hong Kong is still considered part of China, it has its own government, currency, etc.  Are you with me yet?  First order of business is checking into the airport hotel.  We are recommended to do so quickly, and in spite of the thirteen hour time difference we must deal with, and the building excitement of our growing family, we need to get some sleep.  We will be a family with child tomorrow morning instead of two days from now as originally planned.  All we have to do is check in for tonight’s stay, and our return flight.  That is all.  Nothing more complicated than that.  Piece of cake.  Checked in plenty of times to a hotel.  English is spoken by the representative.  Yep, should be smooth sailing.

I hand him my credit union credit card.  He swipes it.  Wait for it…

“I’m sorry sir, card not working.”  I have been awake and on the road for nearly twenty hours.  But I know what I just heard.  Calmly, I asked him to try again.  He had to have done something wrong while swiping the card.

Here’s the pitch… just passes over the corner of the plate – STRIKE 2!  “I’m sorry sir, it is coming up declined again.”  ALL SYSTEMS… RED ALERT!  RED ALERT! ALL HANDS ON DECK!  OPEN THE TORPEDO DOORS!  Now I hit the panic button and do all that I can from jumping over the counter to swipe the card myself.  I urged him to try it again.  The card had to work.  I was told by the credit union that there would be no problem.  And finally, I struck out.  I was told for the third time, “declined.”

I called Ben, our guide, over to the counter and explained what was happening.  I had only $7500 in cash on me, $6000 which I needed for adoption proceedings and still had to buy our in-country flights, meals, and hotels.  And then Ben said it, “May Wan Tee.”  I said to him with a confused look, “What?  English Ben.”  Ben replied, “no worries.”  He was right.  My credit card was not working.  I was going to run out of cash in less than 24 hours.  Still had to buy meals.  All this while I was preparing for one of the most beautiful times in my life.  Why should I be worried?

The most reasonable thing to do at this point, with less than ten hours now until we met Madison, was to try and get some sleep.  Trying to save cash, eating was not a priority at the moment.  And with the time difference, it was already Saturday afternoon here in the US, so the credit union was already closed for the next day and a half.  How was I going to communicate and get this straightened out?  I had a calling card, but that was supposed to last me the entire trip and the minutes would be used up before even getting an answer and solution to this problem.  I decided to try using the internet and reach Wendy’s mom, giving her all releveant numbers and who to contact.  There was one representative at the credit union who knew me personally, and knew I was in China and could clearly help and I would have Wendy’s mom see her.

By the time we headed for the provincial capital city Nanchang, it was evening in the US, 10am in China.  And we boarded a flight to Nanchang.  We arrived at the beautiful Jiangxi Hotel where our current guide, De had us register.  As all the other families took turns doing so, I approached De soon to realize his English was not as good as Ben’s, but I gave it an effort anyway.  I explained everything so far that has happened.  And then… “May Wan Tee.”  Aw, come on!  You too?!?  And then De pulled out his credit card, put it on the counter, and the desk person took the card, and handed me keys to our room.  Just like that.  I knew De a total of five minutes, literally.

His kindness and belief in “May Wan Tee” taught me alot that day.  I was in a foreign country, very little to no English spoken, no credit card, and very limited cash, with two other people I was responsible for, all for the next eleven days, and I was told not to worry.  His favor to me allowed me time to communicate back home, even with the time difference.  It took three more days to resolve, but I was able to do it without worrying.  It all worked out, no worries.  May Wan Tee.

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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