Remembering how colon cancer changed my life
- on March 14, 2011
My relationship with colon cancer began on a lovely spring night in April 1997. I don’t know the exact date, but I know exactly what I was doing. I had just returned from a walk around Albuquerque’s Old Town Plaza, where I was living while working on my master’s degree at the University of New Mexico. As I was making a cup of tea the phone rang and it was my brother Henry, saying “Are you sitting down?” I remember thinking – who says that in real life? Henry continued, “Jay has cancer – it’s coming to get us all.”
Rewind one year earlier to April of 1996, when my mother had been diagnosed with stage 3c (a nice way of saying stage 4 – you won’t survive this) ovarian cancer. My oldest brother, Jay, was by her side along with my sister Clare, and my dad as my mom made her way through her treatment options at New York-Presbyterian Hospital in New York City. Now almost exactly one year later, Jay was facing a really negative set of options and bad prognosis. Jay was diagnosed because he ended up in the ER with excruciating abdominal pain and his physicians discovered a mass the size of a softball in his upper colon – a bad place to have a tumor. Through further investigation and emergency procedures, they determined that his cancer was quite advanced and had started to metastasize, most notably to his liver – that was even worse. At that moment in time it was not a stretch to believe that cancer would take the 9 of us in my immediate family out one by one. Friends and family rallied around us, saying “I feel so sorry for you, who has two people fighting such advanced cancer at once?” Well, the Monahans did, that’s who.
We were all completely stunned. While we had a mother fighting ovarian cancer and a grandmother who had died of breast cancer, we had no family history of colon cancer. (We would soon learn that these three types of cancer are linked.) Moreover, my mother and grandmother had both been diagnosed when they were post-menopausal, which, while frightening and awful, is much more common than a healthy 41 year-old who did not seem to exhibit any symptoms. Jay’s six siblings were encouraged to start screenings immediately – I was not yet 30 years old and making appointments for colorectal, ovarian, and breast cancer screenings as soon as I was able. Of course, the fact that I was a graduate student without any health insurance complicated matters for me, but we were all able to get screened and my oldest sister did have some precancerous polyps, which were removed during her colonoscopy. It was during my colonoscopy that I realized Jay was going to die. The doctors performing the procedure looked at my chart as I was hooked up to the anesthesia and asked why I was there given that I was so young. I answered that my brother had colon cancer. He currently has it? Yes. How old is he? Forty-one. The last thing I saw before I went under was the way they looked each other in the eye and I knew he wouldn’t make it.
How and why did this happen? Jay was so vital and energetic, extremely disciplined, an early riser, careful eater, fastidious dresser, physically fit and regular exerciser. He never smoked and rarely drank but was the life of any party who had a wonderful Irish tenor voice, was the best dancer, and talented pianist. I know he sounds too good to be true but he had all of these qualities and more: he was an excellent student; college athlete; naval aviator; brilliant lawyer; television legal commentator; avid horseman; a Civil War re-enactor and amateur historian. He was the father of two beautiful young daughters, who were one and a half and not quite five at the time, and was married to Katie Couric. Once the news broke that Katie’s husband, Jay Monahan had cancer things really became surreal.
The great thing about being married to a celebrity if you are unfortunate enough to contract a terrible illness is that you can get in touch with excellent medical professionals and have access to so many resources almost immediately. Most likely, you can also afford the best care possible, whether or not it is covered by insurance. The bad thing about being married to a celebrity is that the entire world knows your business and the machine starts up with stories about the diagnosis, the treatment, the prognosis, the hope (or lack thereof) for recovery, the imminent death, teary bedside visits, etc. It is bizarre to see someone you have known your whole life on the cover of tabloids underneath headlines that so often have no relation to reality. Jay took every step possible to fight his disease, to find new treatments and options. Katie and other family members found every resource possible, talked to doctors, researchers, anyone who was an expert on colon cancer, to try and ensure Jay would survive. But he wouldn’t, he was too far gone when he went in to the ER on that spring day.
Nine months passed and while we spoke intermittently on the phone, I saw Jay only twice during that time, once on my 30th birthday, as he was leaving for a weekend at the beach and I was celebrating a friend’s wedding in NYC. He was so thin and obviously so ill but still trying to bustle around getting ready to go like he always had. We were also together at my dad’s 75th birthday party that Thanksgiving and we had a great time – one last family reunion with aunts and uncles and cousins, and friends. It was the last time we would all be together – the boy cousins had the traditional football game and for the first time he couldn’t participate. He stood on the sidelines and coached and teased and made everyone laugh as usual even though I am sure it pained him that he couldn’t play. That last time I talked to him was on his last birthday, January 9, 1998, when he turned 42, almost two years younger than I am now. He was cranky, said he felt horrible and didn’t have the energy to talk – I can still hear his voice on the phone, “Hi Sal?” He always had that inflection when he said hi to me, like he was asking me a question.
That was the last time I spoke to him; two weeks later he died, on Saturday, January 24, 1998. I woke up at 6:30am that day and couldn’t get back to sleep. I was annoyed because I worked nights in a restaurant in Santa Fe and had gotten home about 5 hours earlier and had looked forward to sleeping in. Finally I fell back asleep but the phone ringing at 8:30 woke me again. It was Henry, “Sally, Jay died at 8:30 this morning (6:30 New Mexico time). He was at home and he collapsed and they couldn’t revive him.” The day passed in a blur, travel arrangements, notifying work and school that I would be going, all the things one does to get ready for a funeral. Then the phone started ringing – it was all over the news. That night I turned on the NBC Nightly News and there was Jay’s picture with his birth and death dates underneath it. Are you kidding me? How can that be? That is not real, it must be a joke. Sadly, it wasn’t and the media attention grew and the paparazzi were waiting outside the funeral home on the Upper East Side and 1200 people lined up to pay their respects at the wake, relatives, old family friends, celebrities, lawyers, and even the Cardinal came. The next day at the funeral Mass was another crowd scene with photographers waiting out on the church steps, Judy Collins singing “The Battle Hymn of the Republic”, and three priests on the altar. When I returned home I had friends who told me they saw me on television or in People Magazine or in the New York newspapers. What was happening? My brother died, why is this news?
Soon after, Katie went back on the air and started to talk about colon cancer and began an information and education campaign to spread the word about how silent and deadly this disease is (just as ovarian cancer is – but that is a story for another month). Why did Jay die of it? Because it was so advanced when it was detected. If it is detected early then it is very responsive to treatment and often can be prevented. My sister’s polyps were detected in her colonoscopy and removed on the spot. If Jay had had a colonoscopy years before his cancer probably would have been caught and treated as well. Of course there was no reason to think that he would have colon cancer. He was young, healthy, and fit. In hindsight there were clues – he had a lot of stomach upset and heartburn, we used to joke that he had a pack of Tums in every coat pocket. The month before he was diagnosed I saw him and he was so thin; he said he had lost weight because he didn’t feel well, felt like he had the flu but they were going on a beach vacation and surely the sun would bake it out of him. Still, until he ended up doubled over in pain at the ER no one thought anything of it.
Thirteen years after that spring day I can proudly say that my brother has saved many lives, probably thousands of them. Thankfully my sister-in-law made a commitment to educate herself and the public about colorectal cancer and to work with many others to promote awareness and prevention. Colon cancer is still the second leading cancer killer in the U.S., as it was thirteen years ago when it entered my life. But we are so much more aware now that it is preventable and treatable if caught early. We are not afraid to talk about colon cancer, and some of us regularly make jokes about colonoscopies. Jay would have been the first one to make jokes about it! So, in honor of my brother, I hope everyone will do themselves and their families a favor and talk to their medical provider about screening and when it is appropriate for them. I am not advocating rushing out to get a colonoscopy, but simply having a conversation about your health history and what makes the most sense given those factors. I will have my fourth screening colonoscopy later this year and even though it is not exactly fun, I will think of Jay and thank him for the gift of awareness.
The Jay Monahan Center for Gastrointestinal Health at New York-Presbyterian Hospital is named after my brother and offers a new model for comprehensive cancer for patients fighting GI cancers and their families. For more information and resources go to the Monahan Center website. The GI Screening & Prevention Page on the site is a good basic resource for commonly asked questions.