“Getting a cancer diagnosis was shocking, but it has made me a more positive and productive person.”
By Ed Giampietro, as told to Jo Cavallo
“I’ve been blessed with good health for most of my life, and I was careful to keep it that way. I don’t smoke, I eat a healthy diet, and I maintain a healthy weight. I also was fortunate to be born with pretty good genes and have no family history of cancer. In fact, except for an occasional flare-up of gout, I’ve never had any serious illnesses. So it was a complete shock in the fall of 2009 when my wife Ann Marie and I came home from having dinner out and I found blood in my urine.
At first I thought it was probably a bladder infection and made an appointment the next morning to see my primary care physician. Although she didn’t say anything at the time, I was sure she suspected that I had something more serious than a bladder infection. She ordered an ultrasound test for the next day, which was followed by a CT scan and other diagnostic tests. Finally, I was told that there was a 12-cm tumor sitting on my right kidney and that there was a high probability that it was cancer.
Coping With Cancer Metastases
Until blood appeared in my urine, I hadn’t had any symptoms that anything was wrong. But soon after the diagnosis, I started experiencing chronic shortness of breath, an irritating cough, and small blood clots in my urine. It felt as though the tumor was sucking the life out of me.
I was told I needed a radical nephrectomy and that one of my ribs would need to be removed. The biopsy showed that the tumor was stage II kidney cancer. My doctor said that he removed all signs of the cancer and that I wouldn’t need further treatment.
But a month later, when I went back for a follow-up CT scan, the test showed hundreds of nodules on both lungs—the cancer had metastasized. Now I was scared.
The diagnosis was changed to stage IV disease, and I was offered treatment with high-dose interleukin-2 (Proleukin). Although my prognosis wasn’t good, and I had just a 7% to 15% chance for a durable full recovery, I underwent the treatment, and within a few months the tumors starting shrinking. Today, I am cancer-free.
While I am so thankful to my oncology team for taking such good care of my medical needs, I wish that they had paid more attention to my emotional needs. I was looking for some encouraging words while I was going through treatment—and even now that I’m in remission—but they never came.
I try to put myself in my doctors’ shoes and realize how difficult it must be to treat cancer patients, especially when their disease is as advanced as mine was, and you can’t be sure of the outcome. I know that if I hadn’t gotten such great medical treatment, I wouldn’t still be here, but I felt that the lack of an emotional connection was the missing piece in my care.
Living the Best Possible Life
I have always been a positive person, but the experience of having cancer has made me even more determined to live a purposeful life. I don’t concern myself with life’s small inconveniences, and I don’t have patience for chronic complainers.
I am so grateful for having survived cancer, I decided to help others going through a similar circumstance and joined Imerman Angels, a one-on-one cancer support group that matches a newly diagnosed patient with a survivor of the same type of cancer. So far, I have talked with a dozen kidney cancer patients around the country, and the experience has been very gratifying.
Now that I’ve been a survivor for 4 years, I don’t live in constant fear that the cancer will recur, but I know that it is a possibility. If I am faced with a recurrence, I will once again put my trust in my oncology team and be open to any treatments they recommend. In the meantime, I’m living the best life I can, and I don’t take anything for granted.”
Ed Giampietro is an operations manager for a global technology company in Foxboro, Massachusetts.
Core Value # 3: Never let fundraising distract us from our mission Of course we graciously and gladly accept donations! However, we believe it’s most important to dedicate our time, energy, and resources to our mission.
At Imerman Angels, we want to stay focused on what’s really important in the work that we do: making connections. We’re able to do this with help from fantastic supporters, like our friends at AKTA Web Studio, who recently donated the proceeds from a trivia night to benefit personalized 1-on-1 cancer support.
Below is a message written by Pascale from AKTA:
“How much can something intangible like hope, faith or optimism be worth? For a cancer patient, these can be invaluable–life saving even. Imerman Angels is an inspiring organization that wants to make these intangibles procurable for cancer patients. John Roa, head wizard at AKTA web studio, has witnessed this first-hand as his family member faced the fight against duodenal cancer years ago and will never forget the impact a social network, mentor and friends made. All over the world individuals have to fight the horrors of cancer, but Imerman Angels ensures they won’t have to go at it alone.
We are a UX/UI strategy and design startup company based in Chicago and have been blown away on so many occasions by how such a huge place can seem so small. Everyone is always so ready and willing to lend a hand (or two), share experiences, offer help, create connections and come together. We decided it was time to give back to the community, so we invited a subset of Chicago’s tech and web thought leaders and friends to join us in a friendly game of trivia. Our only hope was to fill a room with great people, educate them about an irreplaceable cause and have fun. With every attendee’s donation matched by AKTA, a fun night of trivia helped to ensure that the Imerman Angels service remains completely free to those in need–we LOVE that.
Thanks to everyone who came out to support the cause and thanks to Imerman Angels for being so fantabulous to coordinate with. We hope this is the first of many Pascale and AKTA team.”
We’re so happy to have had the opportunity to work together with AKTA and are thankful for their continued support!
Angels Ethan Zohn and Gavin Robertson met in person for the first time to run the NYC marathon. Gavin, Ethan’s Survivor Angel, mentored him through his fight with a rare form of Hodgkin’s Lymphoma called CD-20. They had nearly identical treatment plans and now, after Gavin’s success, they can battle marathons together!
Hodgkin’s lymphoma, previously known as Hodgkin’s disease, is a type of lymphoma, which is a cancer originating from white blood cells called lymphocytes. Hodgkin’s lymphoma is one of two common types of cancers of the lymphatic system. The other type, non-Hodgkin’s lymphoma, is far more common.
…. Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.
The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.