The past week or so has been a roller coaster of emotions, of days starting out terribly and ending wonderfully, of despair and loneliness one hour followed by enthusiasm and community the next, of feeling normal and feeling anything but normal. Perhaps much of this can be attributed to “scanxiety” with Mom’s first big scan coming up, or perhaps this is just how we live now. Either way, it is going to require a great deal of faith to reason through this.
What the Heck is Scanxiety?
In an era of “new words”, this one is one that I like. “”Scanxiety” describes the apprehension felt by people with cancer as they wait for their next scan.”
The “scan” or the CT scan, is the medical tech used to discover cancer, and also used to determine if your current treatment is working.
All patients have complicated relationships with their scans not unlike the hate-love relationships we have with other technologies in our lives. We first learn we have cancer from scans, then learn from them if that cancer has shrunk or disappeared, then learn if it has come back. Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.
– Excerpt from Scanxiety by Bruce Feiler
Mom has a scan scheduled for tomorrow. This is the first scan she’s had since the diagnosis.
We are all rather obsessed with it. Reason would dictate that there is nothing to be anxious about; either the results of the scan will be great (the tumor shrank!) or the results will just be news (we need to cointue this regime, or modify it).
There is no real “bad” news at this point, but try convincing yourself of that when it is your mother, or worse, when it is you.
Scanxiety has been haunting us all week, and the stress has been mounting.
We go for the scan on Monday, and we meet with Mom’s doctor on Wednesday to review.
Again, there is only Good News or News, but, well, reality is different. We feel like, reasonable or not, we are waiting for a report card, or SATs, or the results from a job interview. I don’t know. Anything but routine.
It is oppressive, and we are all feeling it, and feeling it pushing us in directions we don’t need to go. Mom’s symptoms are increasing in severity; is it manifesting from the scanxiety? My sisters and I are feeling some burn-out; is it from the scanxiety? Mom and Dad keep uttering fatalistic things and hyping this up as “all or nothing” even though it is not; that is definitely scanxiety.
Everyone thinks it can be fought off with reason; we all KNOW it is not a climatic moment. But what about ANY of this is reasonable? My mother’s body is growing something it shouldn’t (what?) and the thing it is growing might kill her (um, what??) and the best course of action right now is to administer poison to Mom in a controlled environment and hope she can tolerate, and then hope the growth can not tolerate.
What about any of that is reasonable?
How do you process a situation like this, so far outside of reason or fairness, and then expect to be able to apply reason at some of its most powerful moments?
We have started to realize the effect it has had on us this past week, and have started some new strategies to mitigate it.
Ultimately, we just have to get it over with; the scan is tomorrow, it is what it is, and we will deal with whatever comes.
Reason is a great tool, but sometimes you need to lean even harder on faith.
The Jesuits, Mom, and Me
I was raised Catholic, in a large Catholic family. My ancestors came to this country from very poor countries, like Poland, Italy, and Ireland, with little to nothing to their name except their Catholic faith. I stopped participating in the Church in the early 2000s, for many of the same reasons many people stopped participating in the Catholic Church at that time; a few years ago, for reasons that make a story too long for this post, I felt called back to my faith. I felt certain about my spirituality, felt certain about my beliefs in Christianity, but still felt less certain about embracing Catholicism again. I hovered over the idea of participating in a different version of Christianity; I had ties through community and volunteer work to some other Christian churches in the neighborhood, and one in particular had a pastor that I really felt a connection with, but ultimately, I felt an ancestral tug to keep to the faith that my long-past relatives carried with them on decrepit boats when they crossed the Atlantic for the New World.
Still, even that was not enough, until I came across a particular priest on social media, one Fr. James Martin SJ. Everything this man said was aligned with my beliefs; everything this man questioned about the Catholic Church was aligned with my questions. He is relatively famous now, as a prolific author and a popular consultant to Hollywood and Broadway on all things Catholic, but he remains sincere. He is a local boy, having grown up in the Plymouth Meeting area and having attended Epiphany of our Lord Church (which, not for nothing, is a church I went to often whenever I stayed over my best friend’s house and his mom, my Godmother, took us to Mass).
Fr. Jim became a bridge for me back to the Church. And the more I connected with him and his teaching, the more I found hope in the philosphy of his order, The Society of Jesus, or The Jesuits. Like Catholicism, and many religions and religous orders, the Jesuits have a speckled (and sometimes horrific) past; however, what they stand for today is what I stand for, and their vision for Catholicism is my vision for Catholicism. It was by the example people like Fr. Jim, and even Pope Francis (also a Jesuit) that I started going back to Mass.
As soon as I started going back to Mass, Mom wanted to go with me. It was not long before we had a regular time (9 a.m. at St. John’s), a regular parking spot (get there early to get it), and a regular pew (definitely get there early to get it). Often after Mass we would go to breakfast, sometimes with the rest of my family, sometimes with just me.
It was not long until the rest of my immediate family starting attending Mass again, and since then my two oldest children have received all of their sacraments and my two youngest will receive their next Easter.
Mom stood as God parent to both of my older children, and fully participates in anything St. John’s has going on that fits our family schedule.
To suggest that this return to faith of so many people is directly related to a couple of Jesuits sounds trite, but, well, that is what Jesuits do. At least, that is what they always intended to do.
One area where Jesuits have embedded themselves in my life over the years is in music. Growing up in Catholic school, we often attended Mass as a student body, and often the music in those masses were led by Nuns with acoustic guitars; the image of a Nun in a full IHM habit tossing their silver crucifix over their shoulder so they could slide the rainbow guitar strap over their head and start strumming some catchy music is one that I still hold warmly. As it turns out, a lot of my most treasured church music from that time was written by a very unique group of Jesuits who, after Vatican II, took it as a calling to create new, folk-style music for the Catholic Church, music that was catchy and accessible by the people. They were called the St. Louis Jesuits and their tunes still resonate to this day.
The reason we go to the 9 am Mass at St. John’s is because they still have a guitar group there. While not Nuns (I don’t think?), one of the players as been doing it for 48 years. I feel a strong connection when they play, and espeically when they play songs from the St. Louis Jesuits.
Since Mom’s diagnosis, we have not been going to Mass together. I have been afraid that it would be too much for her, so she would watch the streaming service, and I would go alone. However, I was struggling to go without her, as it only seemed to amplify the worst parts about what was going on. Mom would religously (pun intended) watch the streaming service, but, that is just not the same.
Better than nothing, but not the same. Not normal.
This past weekend, a confluence of events made my sisters and I think about the importance of “normal”, of trying to find ways to keep Mom connected with the activities she enjoys the most.
Of course, this sounds obvious, but the pull to circle the wagons and protect is strong. The desire to control things and manage things and reduce all risk at all costs is overpowering at times.
It is not reasonable, and it is certainly lacking in faith. But I think it is a normal response.
We are so hyper-focused on getting to chemo and getting through chemo and getting ready for the next chemo that, maybe, perahps, we were ignoring the value in the everyday.
A few days ago, on Friday, I attended a funeral for the mother of an old friend. This was a woman that went to school with my mother, and whose daughter went to school with me. The woman was a “lunch mom” at our gradeschool, and spent so many afternoons with us dispensing tough love and wisdom. Beyond all of that, as a kid I would often play hockey in the lot across the street from her house, and without fail, she would pull up in her big panel van and drive me and all of my friends home so “we could get home in time for dinner that our mothers were sweating over.”
Mom was conflicted about going to the funeral; I talked her out of it. I told her I would bring back a Mass card. I went, I saw my friend there, devastated. Her mother’s death was sudden and jarring and would take a long time to even approach healing. Also there were a few of our mutual friends, some from gradeschool.
As the service go underway, I looked at the pamphlet, and saw to my joy that all of the “funeral classics” were going to be sung: “Be Not Afraid”, “Here I Am, Lord”, “On Eagle’s Wings” and more.
These were all songs we sang in that very church when I was a child, and I would be singing them again in that church, with some long-time friends of mine from that church’s grade school, to honor a woman who volunteered her time to help raise me in the schoolyard of that church. All of these songs were written by the St. Louis Jesuits, and they were all my favorites.
To say the whole experience made me think of my own Mother, from the darkest possible thoughts to the warmest and most joyful thoughts, is an understatement. But, I had advised her not to come. I wished she was there, and she wished she was there.
And those songs: Was I being afraid? Was I answering the call that I was hearing? Was I embracing the faith that everything would be OK even if things in this world did not turn out OK?
Good questions.
By Saturday, my sisters and I all arrived at the same answers: we needed to embrace the opportunities to be with Mom in her “normal” activities as often as possible; in fact, we need to push and encourage them to happen. Of course Mom could go shopping with us regularly; of course Mom could go to Church with me; of course we could make sure to facilitate those things as safely as possible.
Alia took mom right out shopping, and they had a great time.
I asked Mom to join me at Mass today, at the 9 am Mass, and she was so excited. I told her I would pick her up at 8:30, and when I got there at 8:20, early just in case she needed help, Mom was already standing outside in the rain, with a new fancy umbrella, looking all made up and beautiful, and ready to go.
“I just love summer rain,” she said as we got into the car.
Mass was beautiful. Monsignor Kevin Lawrence is, as I have stated before, just wonderful. If it was Fr. Jim that helped me walk back through the doors, it was Msgr. Lawrence who made me want to keep coming back each week.
The guitar group played today, and before the end of Mass, it was announced that it would be their last Mass until the fall, as they take a break during the summer.
I was so glad we got there today! And as they announced the closing hymn, another St. Louis Jesuits classic “Though The Mountains May Fall”, I smiled deeply and I sang loudly. It is absolutely one of my most favorites, it is one we sang so often in grade school, and it is one whose lyrics were exactly what Mom and I needed to hear.
Should you turn and forsake Him He will gently call your name Should you wander away from Him He will always take you back
Though the mountains may fall and the hills turn to dust
Yet the love of the Lord will stand
As a shelter for all who will call on his name
Sing the praise and the glory of God
It is a song about faith, about joyful faith even in dark times, of losing faith and finding it again, of believing that, no matter what happens, everything will be OK.
After Mass, Mom and I drove to Marchiano’s Bakery and to T&F, to get supplies for Sunday Dinner, which Mom is planning on cooking most of; Mom did all the shoping, I carried the bags. It felt like one of those “normal” days from back before Mom got sick, to just another Sunday in June that started with Mass and would include good food, family, and talk of upcoming vacation plans.
Everyone draws strength from different places; I hope that my sisters and I, our families, my Dad, and especially my Mom, along with everyone supporting us and Mom, can continue to seek out and find sources of strength.
And that we all remember that joy of a single, sunny day, a day where you are doing the things you love with the people you love, can sustain you through many dark hours.
. 