Before I get into this blog, I want to let anyone know who reads it that it will not be the usual trial and tribulations of trying to raise two girls. While it is about them, this specific post is really a place for me to put some of my own thoughts about the passing of my wife last week into one place.
A odyssey that began in the ER at a tiny hospital in Irving, Texas in October of 1997 essentially ended in a hospital room in Port Jefferson, NY in December of 2010. What’s funny as I sat with my wife as she was “actively dying” I could not help but think back to that day 13 years and half a country ago. The moments in time were so similar.
In 1997, I was there fighting tears as my wife of 11 months was told she had brain tumor. I even remember the ER doctor showing us the CT scan that had the evidence. Somewhere in the middle of that, one of my wife’s co-workers came in to check on her (my wife had collapsed at work and they were just checking on her). I could barely speak, but my wife came up with a joke, “I’m fine,” she told her co-worker. “Except for a brain tumor.”
And so my crash course on tumors, treatments, brain tumors and reading scans began. One piece of great advice I got from my cousin, one of the top cardiologists in Florida, was simple and I used it as a guide throughout the next 13 years. I can’t become a doctor by reading the internet.
As my wife went through an initial biopsy of the tumor and we found out the initial diagnosis based on the scan was correct–she had an oligodendroglioma Based on that diagnosis we made decisions in 1997 that would set the course for the next 13 years (although at the time we did not know what life expectancy was).
While anyone diagnosed today with the same type of tumor now receives a course of surgery to debulk the tumor and then regular scans to monitor its practice–in 1997 the recommendations was surgery followed by radiation followed by chemo. The problem was we wanted to have a family.
In mid-November 1997 my wife went for surgery. The conversation we had the week before that surgery would stay with me. It was a time of stress and worry. We had just had our first anniversary and we were talking about her expectations for a funeral, signing living wills and making sure I was able to speak for her and follow her wishes if she did not survive.
One of the isolated moments that really stands out is the morning of the surgery. My mother in-law arrived in Dallas the day before (in a wheel chair for reasons that continue to escape me). Despite our instruction to meet in the surgical waiting room, she decided to join us. There she got to hear our discussion about organ donation (organs yes, skin no).
But my instructions, if something did happen were clear. No heroic life saving techniques. Make sure dignity is maintained. And if she were to pass, the funeral would follow Jewish tradition as closely as possible. This was my first set of promises to my wife. Promises I would keep 13 years later.
A year or so after that surgery came the OK from her team of doctors to “resume” life. And by resume life, I should point out meant going to MRI scans four times a year and blood tests twice a month. If the scans would stay stable during that first year, a family would be possible.
So in 1999 after series of four or five stable scans–we started planning our family. For us the reality of the situation was always omnipresent. There was no telling what would happen–this would not be normal. But the one thing we agreed to was when the time came–whenever that would be, my place was with our child (and soon children). She was going to go through a lot of personal risk to have children, and it was my job to make sure there was never a doubt about what was important or where the focus would be.
At first, despite the ongoing scans and tests things were mostly normal. After she gave birth to our second child, things started to change though-symptoms returned and after a scare in a Tampa hotel room, and the second birth, it was also time for a second surgery.
Although we did not have the in-depth discussion this time, she made it clear to me what I was to worry about. Our children. Yes, I would be at the hospital for the surgery. And yes, I developed as good a relationship as I could with the surgeon and the staff–but my focus was on the kids. There would be no sleeping at the hospital this time. Instead I had to be there for breakfast each morning with the girls.
It was a lot of long nights driving the LIE from NYC to our home-but I was keeping my promise.
Six years later, as her condition worsened, it was those conversations from 1997 and 1998 that I used to honor her, and make sure her wishes were realized.
In May, a month after her 41st birthday, I was planning her funeral. Traditional Jewish. I had a lot of help from the Rabbi at my temple-and at the time it looked like the downward slide would continue and things were imminent. But things stabilized—and the end that looked so near became a much longer and drawn out process.
But that didn’t change the focus. For as long as I could, I brought the girls to see their mom-even eat dinner with her sometimes. When she lost the ability to feed herself, I had the girls feeding her. If you want a heartbreaking moment, watch a 10-year-old try to feed her mother, and know its being done out of pure love.
But even that connection ended as symptoms worsened even more. With her wishes for her funeral set, my focus was on the kids, and making sure they were prepared for what was happening and have the support they needed.
Then came the call–on a Thursday morning. Things took a turn for the worse and I learned the hospice diagnosis of “actively dying.”
For the uninitiated, and I hope that is everyone and no one ever has to hear a term like that, it means the body is shutting down and the living process is actively ending. “Is it hours, days, weeks?” was the question I asked. Days was the most likely scenario I was told so I planned accordingly.
At that moment, what I really needed was time to figure out the best way to activate the plans I had made six months ago and manage the message to my kids. No one was going to tell them anything until I did and no one was going to answer their first questions until I could.
As ironic as it sounds, the Long Island Rail Road gave me my best option to simply have a chance to take a breath and work it through. I needed to get with the rabbi from my temple–a different one from May, but one I had been talking to for months and who knew what was going on. My wife’s sister needed to be told, my mother needed to be alerted, my brother told and somehow I needed all of this to not get back to the girls until I was there.
Oh yeah, I also needed to get the hospital and say good-bye to my wife.
So there I am sitting in her room, fighting back tears and telling her how brave she is and there is nothing to worry about–I have things squared up. 13 years prior it was the same thing–and that’s a thought I can’t get beyond.
The next five days would be easily the worst in my life–and I hope the worst ever. Each day I had to do the hardest thing I’ve ever had to do–starting with that Thursday night–and telling my kids their mom was dying and the end was near. Friday was spent telling key people who would help me spread the word to friends and family and managing how my mother was handling the news.
Saturday morning I had to take my kids to see their mother and tell them how to say good-bye. “I love you,” they said. “Be peaceful and rest now.”
By Saturday afternoon-while preparing to host a Hanukkah party I had to tell them their mom had died.
In a perfect world, I would have been there–with her at the end of the odyssey as I was at the beginning. But my world right now is not perfect. Instead though I was where I promised I would be-with our children.
Finally came the funeral, which I have written about here.
It sounds a little folksy, but the gauge I use to measure if I am doing the best I can is if I can look into the mirror when I am shaving. If I can look the guy in the mirror in the eye, then I am doing OK.
As I look back not only on the last week, but on the last 13 years, I have no regrets. My wife lived the life she wanted. We have two really great kids. I kept my promises, and that guy in the mirror–I’m OK with him too.