Alex’s Story – Overcoming Life’s Obstacles
by Alex Nagy
My name is Alex Nagy. I live with my wife Ruth in the beautiful Pinelands of southern New Jersey, in a small town called Tabernacle. We have two grown children, and one grand child, who we left behind in Virginia when my business brought me to New Jersey 14 years ago.
When you learn that you have cancer, life as you have known it forever changes. And when you discover that you have yet a second cancer, you realize that you may have less time than you thought.
To get through the past 22 months, my family and friends prayed for me and encouraged m
e, but it was my faith that sustained me and took the fear away.
Escape From Hungary
My life was probably a great deal different from most people, as I was born in Budapest, Hungary and grew up under Communist rule following WWII. In 1956, Hungarians rose up against the evil Soviet Communist rule and after much fighting and many casualties the Soviet forces defeated our uprising. Later that year I was forced to escape from Hungary, spent two years in Austria and finally came to the U.S. on a scholarship to attend college in 1958. I was married two weeks after graduating to my college sweetheart.
I probably went through more hardship and experienced more difficulties in life by age 17 than most people do in a lifetime.
For those of us that experienced the ultimate evil in life-manifested in my life by Communism, later in life during times of trouble and difficulties, we found our comfort and strength in knowing that even in the worst situations, as long as our life was not threatened, those of us that started with nothing, could work and re-build what we have lost.
For me, I gained strength from knowing that I survived so many near misses on my life, that there must have been a reason that I came so far. And I felt that there was more that I had to do.
2005 – What’s the Problem?
2005 started out rather uneventfully. Ruth continued her school year at MCA as both Head Teacher and First Grade Teacher. I worked part-time as a Career Major Tutor at BCIT. I also continued to teach a 30-hour adult education class on ‘Starting Your Own Business,’ in the spring at BCIT.
While Ruth kept busy with AAUW and volunteering her time at CONTACT, I spent a fair amount of time with SCORE, doing both face-to-face counseling and e-counseling from my home office. My consulting business was winding down. I was only working with three clients on very small projects that barely paid for the expenses of keeping my consulting business’ doors open.
In January, I had my annual Endoscopy and my Gastroenterologist found what was a muscle mass in my stomach. He took a biopsy, but it turned out to be negative. However, just to be sure, we scheduled a follow up Endoscopy for June 21. During the spring, I had more frequent problems with acid reflux at night and the problem of food became more frequent. My doctor prescribed Nexium for the acid reflux and the medication mostly eliminated the nightly episodes.
In March, the doctor ordered a CAT scan, but it did not show any problems.
We both finished with school in June. My last day was the 20th. The day after, on the 21st, I had my follow up Endoscopy. The doctor was puzzled because as he said, the bottom of my Esophagus was a mess. He took a biopsy during the procedure and we were awaiting the results. In the meanwhile he scheduled me for another CAT scan on June 23rd.
The same day of my Endoscopy, I got a call from my 94-year old mother, telling me that she needed me to come up to New York right away, as she felt very dizzy and wasn’t sure what to do. I told her that I was unable to drive as I just had a procedure in the morning. I called a friend at Brick Church, who came over to her apartment and then called an ambulance so she could be taken to the hospital.
As I arrived home from the CAT scan two days later, Ruth was waiting for me with the news. My doctor called with the results from the biopsy taken on the 21st. The news was not good. I had Esophageal Cancer! Wow! The news hit me like a ton of bricks. I couldn’t believe it! It came without warning. A total surprise.
It was not until August 2005 that we lined up a team of doctors that would eventually take me through chemo and radiation. It was their collective opinion that to go through a regiment of chemotherapy plus radiation followed by surgery 4-6 weeks later.
Ruth had decided in the meanwhile to stop teaching in the fall and to become my full-time caregiver. I was saddened by this news, as I knew how much she loved teaching.
The chemo process started with the surgical insertion of a ‘pick-tube’ in my left arm. My Oncologist advised me that I would have to go through a 48-hour chemo (that I took home in a shoulder bag), then start a 28-radiation regiment and finally complete the process by another 48-hour chemo treatment.
The Tumor was on the bottom of my Esophagus, and periodically had problem swallowing food. I was advised to have a feeding tube inserted in my stomach as it was clearly anticipated that the radiation would burn my Esophagus so badly that I would not be able to swallow.
My reaction to the chemo treatments was worse than I expected. I had daily radiation treatments during the same time. While they tired me a bit, the biggest problem was that I was unable to swallow. The intense radiation badly burned my Esophagus. So for the next 4-5 months I had to feed myself through the tube that was inserted into my stomach.
I became very weak from all the treatments and lost a lot of weight. Some days Ruth not only had to drive me to the hospital, but push me in a wheel chair to my radiation treatments because I was too weak to walk. I was hospitalized a couple of times during the fall.
Finally, near the end of September I was hospitalized for a week because of blood poisoning caused by my ‘pick-tube.’ While in the hospital we finished the radiation treatments. On September 30th, the day I was being released from the hospital, at the last minute my Oncologist arranged an Endoscopy procedure to see what was causing my persistent low grade fever.
The result of the Endoscopy and biopsy astonished not only us but also our doctors. The tumor in the Esophagus was totally gone and there was no sign of cancer anywhere.
If this was not a miracle, I don’t know what was. During this whole ordeal, I was blessed by virtually hundreds of people; family members, friends, little children and even total strangers praying for me in six states. I have received such outpouring of love in the hundreds of get well cards, calls and visits, that there is no way that I could express the gratitude I feel in my heart.
My doctors recommended that after a 4-6 week period, when I regained my strength, I undergo surgery to remove any possible remnants of the cancer in the Esophagus. The procedure they described would take part of my stomach and part of my Esophagus in a 6-8 hour operation. It would clearly be a major surgery. Since I had a similar surgery in 1991, I was not anxious to go through a repeat performance.
As I pondered what was the right thing to do, I contacted one member in my Esophageal Cancer Support Group. After an hour long conversation with him regarding possible complications if the cancer re-occurred, I was convinced that the smart thing was to undergo the knife.
This I did on December 7th, at the Fox Chase Cancer Center in Philadelphia. What came next was yet another surprise. The surgeon advised us that while he was getting ready to perform the planned surgical procedure on the Esophagus, which was to include the partial removal of my stomach and Esophagus, he discover
ed another, more serious problem.
More Cancer – GIST
He found cancer in the stomach and in the abdomen. It was inoperable. He removed a mass in my stomach and performed a biopsy on it. He said the cancer was too wide spread and could not be removed surgically. The only treatment option was chemo.
This was a terrible disappointment. But on the other hand, it was a blessing that I decided to go through with the surgery, because without it we would not have found out about the second cancer until it might have been too late.
It was nearly two weeks later, after I returned home to recuperate from the surgery, that the surgeon called us with what he considered better news. He said that the stomach cancer was actually something called ‘GIST’ and they knew a drug that was able to treat it and keep it under control. And by the way, one of the top experts on the disease was actually at Fox Chase. Well, this was a welcome and certainly more promising news. At least we now knew what we were dealing with. And thank God there was a chemo pill, called Gleevec that came on the market in 2001.
A few weeks later we met the GIST doctor at Fox Chase and I also arranged to have a second opinion at the Memorial Sloan-Kettering Cancer Center in New York City. Following these two meetings, I felt that I had some of the best doctors in the country monitoring my diseases.
The Endoscopy in December 2005, showed no sign of cancer in the Esophagus. The CAT scan performed in January 2006, reconfirmed this finding but this time it showed the GIST. On January 16, I purchased the first dose of Gleevec, the new wonder drug that was to control the GIST. While the medication was frightfully expensive, it was my only hope for survival.
In March, we repeated the Endoscopy and it still showed no sign of Esophageal Cancer. The biopsy showed ulcers at the bottom of the Esophagus and signs of a viral infection, which my Oncologist treated with antibiotics. The biopsy showed the GIST and this gave us a reference point for future Endoscopies, which I was to repeat every three months.
In April, we repeated the CAT scan, which showed no sign of Esophageal Cancer. However it showed that the GIST was reduced to a third of the original size when first identified in December 2005. This was a very encouraging news.
But with every good news there is sometime some bad news or at least a concern. In my case, the CAT scan showed an area of fluid around my lungs, which concerned my Oncologist. There were actually three theories regarding the fluids: one said that sometimes six months after radiation fluids can appear around the lung. Another theory was that Gleevec, the drug treating the GIST could have a side effect which is fluid retention. The third theory was that the fluid could contain cancer cells, signaling the return of Esophageal Cancer.
To test this assumption a pulmonary physician performed an ultrasound of the lungs, but the amount of fluids this test showed was not enough to get the doctor to perform the delicate procedure to biopsy this fluid. Since I had no signs like shortness of breath, the pulmonary physician agreed that we should check the next CAT scan scheduled for mid-July, to see if there is any change in the amount of fluids.
The only other side effect that I experienced that is directly attributable to Gleevec was a slight swelling in lower part of my left leg. My Oncologist at Virtua Memorial, recommended that I take Chlorothiazide to take down the swelling. The water pill worked its magic, and I felt blessed that I didn’t experience some of the most common side effects of Gleevec—nausea, vomiting, stomach cramps, etc.
During this time I regained my strength, my weight stabilized and I am able to eat just about everything. My current health and prognosis is a living testament to the power of prayer and God’s miracle of healing.
2006 – Writing Therapy
So in January 2006, I began a project that has been in the back of mind for years. I told my life story to my family and some of our friends over the years, growing up during WWII in Budapest, Hungary, living under Communism, participating in the 1956 Hungarian Revolution, my difficult escape, living in Austria and coming to America in 1958.
I was always planning to write down my adventures for my family, so they would know all that I went through in my life, but never expected it to become the extensive project that it turned into in January.
After hearing a great deal about ‘self-publishing,’ I contacted three publishing companies that did ‘print on demand’ book publishing. After some research, I finally decided to use a company in Canada and began the long process of writing down my life story.
Working on my book, spending 4-5 hours a day on the computer was tremendously therapeutic. As I was recovering from surgery, I continued the tube feeding, and many times I’d wake up at 2 and 3 A.M., hurting and very uncomfortable, so I would go over to my office and start writing. My pain disappeared and the ideas were flying from my head to the computer, and guess what, I felt great. I didn’t have time to think about my problem, I was writing about the trials and tribulations that I went through when I was young, and somehow what I was experiencing today were trivial.
I counted the blessings about how I survived a war, a revolution, and escape and living in refugee camps. All I could think of as I was writing, was all the blessings in life. A wonderful wife and children. There were a lot of reasons for living, and I decided that not only did I want to share my story with family and friends, but if I could inspire others fighting cancer, I would like to do just that.
A couple of my doctors kidded me about having two cancers and in their estimation doing pretty well. I reminded one of them recently that I firmly believed that ‘God doesn’t give me more than I could handle.’
The result of this six month project is my book: “Coming to America: My Long Journey to Freedom!” The book was not only fun, but very therapeutic during my battle with two different cancers. The book was published in October 2006. But by the time it was completed I already had a full schedule planned for 2007.
Interestingly, even in 2006, I went from one major project to the next. As I completed the book in July and sent it off to the publisher, my 95-year old mother got sick and needed my help. For the next two months I made arrangements to move her out of her apartment in New York City, to a facility near us in southern New Jersey. As soon as I got her settled, my book came out, and it was book signings, etc. By December, my wife was urging me to follow it up with a novel, based on the first 5-6 chapters of my book. Some friends were even kidding me about a movie deal. Of course, I didn’t take them seriously.
I have a CAT scan every 3 months and Endoscopy every 4-6 months to be sure that the Esophageal Cancer doesn’t return. The GIST is staying about the same size. I am a daily dose of 400 Mg of Gleevec, also take Nexuim, water pill and Potassium. Additionally, I also take Carafate, a liquid to heal my Esophagus. As late as today, I was still having trouble with swallowing, which usually happens at lunch time.
There is one additional side effect from Gleevec: I bruise easily, and healing is a lot slower than it used to be. Some mornings I wake up with scratches on my arms and can’t figure out what happened.
I was invited by Virtua Health to speak at the Cancer Survivors Day on June 10, at Burlington County College in Mt. Laurel, NJ. They also interviewed me for their quarterly newsletter that scheduled for June publication. I have two books in process and working with Virtua Health to setup a Cancer Support Group just for men in this area. I also became active again with SCORE, the Service Corps of Retired Executives, putting on seminars and doing face-to-face and online counseling for people interested in starting their own businesses.
I give you this list not to brag, but to show you that keeping busy is the best therapy. Some days when I am not busy, sitting around and watching TV, I can easily start feeling depressed. I began to think about myself, start feeling some discomfort from side effects, and my mind begins to wonder about my mortality.
I was very happy that I learned about GSI from Dr. Maki during my recent visit with him. I can honestly say that I learned more about GIST during the last 3 weeks since I joined GSI, than during the previous 16 months.
Thank you for creating this website for us GIST survivors. It provides great comfort to be part of such a caring community.
God Bless You!
Carpe Diem — Seize the Day!
My book is available at Amazon, Barnes and Noble, Borders and other booksellers. To view a pdf photo of the book’s cover, click here.
Here’re some excerpts from my book:
My View on Life…………
One of the things that I learned during the past 67 years, is that the decisions you make in your life – can and will have dramatic outcomes in your life. My decision – to leave our home in Hungary – has forever changed my life and my future.
We also had to make decisions during my escape. Two specific decisions made a huge difference in the final outcome. The first one was on the train. Should we have not jumped off the train to get away from our guards, it would have changed the outcome of our lives. The second one took place, when our guide told us that it was too dangerous to head toward the border that fateful night because the border guards were swarming around the area.
While my parents and the family decided to give up and go back to Budapest, I was determined to find a way out. Going back and giving up for me was not an option.
Again, if I would have gone along with the majority opinion, my life would have turned out completely different.
Birthdays are often the time when one takes a moment to think about life. I have recently experienced the addition of yet another year, the following advice made sense to me:
“Over and over again, we lose sight of what is important and what isn’t.
We crave things over which we have no control and are not satisfied by the things within our control.”
“We need to regularly stop and take stock; to sit down and determine within ourselves which things are worth valuing and which things are not; which risks are worth the cost and which are not.”
“Even the most confusing or hurtful aspects of life can be made more tolerable by seeing clearly and by choice.”
The other day during a presentation, someone made the following statement that made a strong impression on me, as one of the basic truths in life. This person said to his friend during a discussion: “Do you know what’s wrong with you? Nothing has ever gone wrong in your life.”
Wow! This person implied that by not having trials and tribulations in his friend’s life, he failed to develop the strong values and personal characteristics that can shape one’s life.
I certainly had many trials and tribulations in my life that shaped my belief system and helped me to realize what is important in life and what is not.
I believe what someone once said to me: “We are only passing through this world to get to a better place…..so take the time to help someone along the way.”
Albert Einstein said: “There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is.”
Here’s another saying that would be well to guide the way we live and die:
“When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you are the one who is smiling and everyone around you is crying.”
I grew up in the forties and fifties with practical parents. We didn’t have much, so we had to make due what we had. It was a time for fixing things. A curtain rod, the radio, the shoes, the hem on a dress. The things we keep. It was a way of life, and sometimes I wished that I could throw those old shoes away, or buy a new pair of trousers rather than repair them. But that was wasteful. And to be wasteful, you had to be rich. Throwing things away meant you knew there’d always be more.
But then my father died on that warm summer night in Virginia, and I was struck by the pain of learning that sometimes there isn’t any ‘more.’
Sometimes what we care about most gets all used up and goes away—never to return. So while we have it, it’s best we love it, and care for it, and fix it when it’s broken, and heal it when it’s sick.
This is true for marriage, and old cars, and children with bad report cards, and dogs with bad hips, and aging parents and grandparents. We keep them because they are worth it.
Some other things we keep—like best friends that moved away, or a classmate we grew up with. There are just some things that make life important, like people we know who are special—and so, we keep them close!
I feel that I have achieved a level of success beyond my wildest dreams when I think back of walking through the snow that cold, stormy December day on my way to freedom.
I am not speaking of financial success, although the Lord has provided Ruth and I with sufficient worldly goods to live a comfortable life, especially when you consider what I had as a child. But success is measured in more than financial terms.
I feel that having a loving wife and wonderful children made me a success in life. I also believe that if you have achieved success in your life, as you get older, you stop striving for success and start striving for significance.
The poem by Bessie A. Stanley better expresses my sentiments than I could ever do:
“That person is a success who has lived well,
Laughed often and loved much;
Who has gained the respect of intelligent men,
And love of little children;
Who has filled his niche and accomplished his task;
Who leaves the world better than he found it,
Whether by an improved poppy, a perfect poem,
Or a rescued soul;
Who never lacked appreciation of earth’s beauty,
Or failed to express it;
Who always looked for the best in others,
And gave the best that he had;
Whose life was an inspiration; whose memory
Here’s another other poem that I found meaningful:
‘LIFE IS TODAY’
By Virginia Wave McPheeters
Life is today — not tomorrow —
The time you must live is now.
Don’t wait for some far distant future
When all things will be right somehow.
Though busy, take time for that kind deed
That you plan for another day,
For perhaps there will be no tomorrow,
When you’ll pass again this way.
The burdens of life may be heavy,
But don’t let them block your view.
Don’t wait for them all to be lifted
Counting the joys you have too.
The good and the bad mixed together
Must be put into proper place.
Whether you find joy or sorrow,
You must stand and meet life face to face.
So listen to laughter of children,
Stop a minute to watch them at play,
Give a smile and a kind w
ord to someone
And you’ll find it will brighten your day.
Be aware of each moment’s small pleasure-
The little things make up the whole—
Fill your hours with bright shining minutes
As you search for life’s ultimate goal.
Reprinted with permission from the Thursday, November 9, 2007 edition of The Central Record newspaper, a southern New Jersey publication.
From Budapest to Burlington County
Facing his mortality, Tabernacle man pens memoirs of his life’s struggles and joys.
by Rose Krebs
The Central Record Staff
With his own mortality becoming more and more a stark reality, Tabernacle resident Alexander Nagy figured now is a good time to write down his memoirs. A chance for him to make sure his friends and relatives know a bit more about him before he is gone and for future generations of the family to know of him when he is already gone. A chance to let them know his story, told in his own words and through his own recollections.
It’s a story filled with many instances where death stared him in the face and in which the human desire to be free — in actions, in thought, in expression, and under the law — was ever present. A story not put from pen to pad until mortality seemed to be ever closer, this time brought along by his health, not a human source.
For Nagy, death was all around from a young age — when the bombs rained down over his home city during World War II, when the Germans invaded with their tanks killing at will, and finally most memorable for him, when the Communists took control of his homeland, extinguishing freedoms while also killing at will.
When cancer struck last year, Nagy decided to write it all down. His life as a young child in Budapest, Hungary during World War II, as a youth and teen growing up under Soviet control, as a college student in the United States, and as a U.S. citizen in adulthood.
“I thought, I don’t know how much longer I have left, I should do this,” Nagy said of writing his memoirs. “As I was going through this recovery (from cancer), that (writing) was the best part. It was the best therapy you could ever have.”
Nagy was diagnosed with esophageal cancer in June 2005 and a rare stomach cancer (GIST) in December of that year.
Writing for four to five hours a day helped him to take his mind off his health, and in the process, helped him create a written legacy.
“I probably went through more in my first 17 years than most people do in a lifetime,” Nagy said.
Born in 1939, Nagy’s childhood in Budapest was filled with the realities of war. Allied bombing was the norm and frequently forced him and his parents into a basement of their apartment complex to seek refuge.
His hometown occupied by the Germans, their lives were often in danger. From 1945-49, Hungary was in governmental limbo until the Soviets took total control. Nagy likens these years to “pure hell,” with Secret Police patrolling everywhere and persecution of those with ideas that differed from the regime. Nagy writes that it was like living in a society “where even the walls had ears.”
Many of the wealthy and prominent were viewed as “enemies of the state,” and executed or who simply “disappeared,” Nagy writes. It was a very nasty time then,” Nagy said of living under Communism. “Life was very bad.
“It was like living in slavery. Life was really miserable. Everybody was poor.”
A period of hope for the Hungarian people came in late October 1956 through revolution. Nagy speaks of that time, when the march of a group of students turned into an all-out revolution. “(I thought) I would rather die fighting to change the system than live under oppression,” Nagy said.
Although the revolt seemed at points like it might succeed and the Hungarian people grew hopeful, the Soviets launched a major offensive on Nov. 4 and the revolt was soon extinguished, Nagy said. “We were so optimistic that things could be changed,” Nagy said. “The Hungarian Revolution was the first tear in the Soviet dominated Iron Curtain.”
Throughout his teenage years, Nagy said he dreamed of escape, hopefully to the United States, the country his father had lived in for a time as a youth and had come to love.
Escape finally came at Christmastime in 1956. Nagy left home on December 23 along with his parents, an 8-year old neighbor, and the child’s parents.
With them, they had a knife, a map, a compass and not much else, Nagy said. They took a train north and hoped to reach a city about 15 miles from the Austrian border. However, along the journey, troops came onto the train and started to round passengers up. Nagy said that he and the others he was with escaped off the train and ran to safety. They then had to travel by foot for a few miles before they reached another station. From there, it was on to a town about 15 kilometers from the border to find a sympathizer family that was known to help people across the border.
Remarkably, Nagy said, the home of the sympathizer was the first door they knocked on. Although that person couldn’t offer further help, they gave the name of someone else who might help. And on Christmas Eve, Nagy and his fellow escapees headed for the Austrian border. “There was no nicer Christmas present than at 2:30 a.m. (on Christmas morning), we ended up at the Austrian border,” Nagy said.
After two years living in refugee camps in Austria and after much ‘string-pulling’ by relatives in America, Nagy finally was able to come to the U.S. with a scholarship to study at Muskingum College in Ohio. Nagy said he kissed the ground when he arrived in New York. They couldn’t get me anymore. I was free,” Nagy said.
“I want my family to know what I went through and never forget what a great country this is,” Nagy said in his memoirs. “Life is precious. Your freedom is precious.”
In his book, Nagy also details his college years (where he met his wife, Ruth), his career, the birth of his two children and his current battles with cancer.
“It’s the first time since I was 17 that my life was threatened,” Nagy said of his battle with the disease. “The news of having two cancers hit me hard. You start thinking that maybe I am not going to live as long as I thought I would.”
Now his book will help his legacy to live on, Nagy said. The book, Coming to America: “My Long Journey to Freedom!” is published by Trafford Publishing.