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.