Chapter 1: Finding Cancer
Love and the Will of God: Caring for My Mother with Glioblastoma
When I received the email from my dad on May 31, 2024 titled “Mom” with the first line “Children — I am finding it very hard to even type this out — I don’t want it to be true” after reading the whole thing to the end my very first thought was: “there it is Lord!” There’s the calamity, the suffering, the cross for our family, the first big thing God was asking of us all. An MRI had found a tumor in my mom’s brain, tipped off by some odd neurological irregularities which over the course of a couple of weeks had deprived her of the ability to read, and then to write. There wouldn’t be an official diagnosis until weeks later after a biopsy, but the situation seemed serious, and several of us had already intuited the tumor was both malignant and terminal.
I had a very busy summer planned for 2024—two different summer “music festivals,” two and four weeks long, of orchestral and chamber music training, and then a course of sacramental theology in California with other members of the Work, a visit to a friend on the west coast, and a family vacation to top it all off. The email from Dad came the day before my first festival, and although I immediately felt an urge to drop it all and go home, to be close to my family and do whatever my parents needed, I was continually reassured and told to continue with what I was doing.
From my various musical outposts, I got emails from Mom and Dad frequently in those first weeks about how much grace was present, flooding their lives. Mom described a supernatural peace, but at the same time I saw her go through periods of struggle. In those first few months we had to discover a new way of life: total dependence, on God and on each other, and new dealings with medical procedures and medications. In finding cancer, we also found, little by little, everything that cancer would mean and demand.
June 8:
We had sibling group video calls, working out our concerns, not sure what the tumor was. Sometimes we’d get good news and sometimes less good news, but given the impact of the tumor already, it was clear life would never be quite the same. Often Dad stayed somewhat business-like in his communications, always affectionate, but primarily conveying medical information, the assurance that Mom was at peace, and appreciation for prayers.
One memorable call though, we met to talk through our emotions in the wake of the discovery of the tumor. Dad had to pause several times to hold back tears. He told us, “I don’t even know how to describe a marriage of 40 years that is this happy. I can’t imagine life without her.”
June 5:
I wasn’t sure whether to call or not, but I wanted to talk to mom directly, and so I tried once calling her on her regular phone, like I always used to. We played phone tag, but it was clear she wasn’t the same. She had so much trouble reading, even navigating her phone or picking up a call was a struggle. One time she tried to call me back, and I got a message on my answering machine with a lot of silence and then her voice… Ruth?? Her voice was totally disoriented and upset, the way she would get upset at computers or spreadsheets, but more childlike, confused. I was terrified I would never be able to reach her again, that the tumor had robbed her of her senses.
June 12:
In the end, I did get mom on the phone during one of my breaks at the festival. She sounded very peaceful, not at all sad but somehow different. She reaffirmed what she and Dad had sent by email: that she was experiencing an extraordinary serenity, which came from the feeling of being held by God, like a little child. She told me about how her brain was changing rapidly, not just in her ability to read and write, but also in her sense of space and time. She told me, “I can’t think of anything but the present. I have no plans for the future,” giving me examples from her daily life: instead of organizing her days like she used to and scheduling a chunk of daily housework, she just saw one thing out of place, and put it away, and then the next thing, and put that away… but without any sense of connection between things. It was as if her entire sense of her life and future was taken away — but at the same time, she had been wrapped in a cocoon of grace that prevented her from worrying about it.
June 14:
Mom and I had a very long conversation over the phone, after one of the concerts I had played at the festival. I shared with her an extraordinary experience I had of God surpassing all my expectations, having me play better and reach people more deeply than I felt I deserved.
I said at one point “it’s not me!!” And she said “no, no it’s not, not us at all.” She said she and Dad were having similar experiences with the doctors and medical personnel they were meeting in hospital appointments. With every one, they would be calm and peaceful, and sometimes would explain it was because of their faith. Some doctors seemed to understand or be particularly moved.
Mom surprised me a little toward the end of that call, by emphasizing how much she was looking forward to me coming back home, specifically. She confided that she had certain things that would hit her, things that she wanted badly to write down but she couldn’t, things that were important and she felt like might be from God. She wanted me to write them down. I told her she could call me anytime, I’d always have my phone, and I would stop whatever I was doing to write things down.
June 15:
I got a phone call from Mom at 7am, while I was getting into my car to drive to the church for mass. As promised, I stopped what I was doing and wrote down what she told me on my phone. Her ordinary peaceful demeanor was gone, and I was moved, even shocked, to hear her speak with heavy emotion, and a kind of dramatic strain in her voice. She paused every so often, to make sure she was choosing the right words.
Does God exist?
Does he know me?
Does he care about what is happening to me? Is suffering and pain and death a proof that God does not exist?
Is evil a proof that there is a power in the world that is greater than God?
Can God cure me of this illness?
I know that He can, and I know that He will, unless he has a plan which is better, more far reaching, that will touch more people, and heal more people, bring more people to Him.
I have moments where I see His plan a lot.
I know that Jesus Christ is the God of the Incarnation, the God of mercy, the God of power, the God of the Eucharist, the God of the cross, the God of the resurrection, the God of victory. He is the God of the Catholic Church and no other.1 He is the God that I have known all my life. Can he make great good, does he have the power to make great good out of great evil? Does he have the power to overcome?
Yes, He has already done it, he has already won. He can do the same in my life, as small as unworthy as I am, and he wants to bring many people to this victory.
I want everyone who is part of this to be part of it. He’s lining up the people who are going to benefit from this, He’s bringing them together — and there are lots of them:
People in Cincinnati, your people (Ruth), people we have never even met… He wants them all to feel His power and know His love and His mercy.
A few years ago in Cincinnati — there was a conversation between [my sister in laws] and me. One said that if she got Alzheimer’s, she wanted to die, because she didn’t want to lose who she was.
[The rest of us] tried to say that she wouldn’t lose herself.
I feel that right now there are things that I am losing, but these things are not necessary, and I am retaining what is real, and what is important.
I am not losing anything important.
June 16:
Mom called me around 7am again. With a lot of difficulty and emotion:
Jesus has already won the victory but His victory is not limited to one point in time.
He has said that anyone who wishes to follow me must deny himself and take up his cross and follow in my footsteps. Whoever loves his life will lose it but whoever loses his life for my sake will find it. God’s victory is being won continuously. It is an honor to join Him, to walk with Him, to redeem with Him. My prayer is that I will have the strength from God to fulfill the work that He is giving to me.
Me: How are you feeling today?
Mom: Weak.
Me: Are you going to try to make it to 8am mass?
Mom: Yes. Jacinta (my younger sister) is here.
June 16-23:
I travelled home on June 16, for a brief week in between festivals, which happened to correspond with Mom’s biopsy surgery on the 19th. The biopsy would lead to a final diagnosis within a few weeks, once doctors were able to examine the tumorous tissue and test it.
June 19:
This was the day of the biopsy. That morning, she received the sacrament of the sick from Father Joe at St Thomas, and I saw a deep peace and joy settle over her while he prayed over her.
In the afternoon after her surgery, I came to visit Mom in the hospital. There was a little bit of dried blood on her hair and face, and she was propped up on the bed, with some ice on her head where the wound was.
She told me, in a quiet voice, how it had gone very well, etc - when I asked if she was in pain and what she was doing for the pain, she explained it wasn’t too bad, but the ice helps and every once in a while a nurse will give her aspirin. She gave a cheeky, wry little smile, almost like she had a secret, and said that was her “preferred method” of pain control.
June 20:
On the first day after the biopsy, everyone was very active. Dad spent almost all day with Mom, but with doctors, and papers, and wait times, and little medical procedures… then when she was finally released, with picking up medical supplies, and arranging for a medical bed for the living room, and making sure she had everything she needed. We ate a very late dinner and then prayed the rosary and by then it was time for bed.
Dad said he regretted not spending alone time with her, just to be with her and not do anything. He said it’s like so many people are with God in the spiritual life—we rush around to “serve” Him and please Him and do His things, but what He really wants is just to be with us, and look at us, and have us look at Him. It’s a need that married couples have, for simple intimacy.
I almost cried while saying night prayers with them that night, when Mom reached for Dads hand and he gave it to her—just holding hers. Like all his desire and his vulnerability and his fear of losing her were right there, in that gesture, and she was trying to be there for him.
June 21:
Mom caused a little drama in the morning when she woke up feeling great, and went to mass with Jacinta, without either of them texting me or Dad, who woke up later. Not only did she go to mass, but to save time she and Jacinta took the steep stairs to get up to the front door, which the doctors had specifically advised against, because of her potential balance issues. But Mom needed mass, and she was very glad to go.
Later that morning, when making the schedule for her new medications we realized that she had missed her latest dose, which she was supposed to take the night before at 3:30am. She had taken her medication at 9:30am and at 3:30pm as prescribed, but each time they made her feel groggy and horrible in some sort of way she didn’t seem able to describe. At around 5:15 that afternoon she woke up from a long nap and just wanted to get ahold of her prescriber to lower her dosage. She was adamant that it was too much, that she couldn’t take it, that it was causing havoc in her body, and if she couldn’t get ahold of the doctor (after office hours), she might just cut her pills in half without asking. She wasn’t used to taking any medication, much less the hefty dose of steroids they had prescribed to slow the growth of the tumor in her brain.
Then we went to pray at St Thomas. After our half hour of prayer she told me rather wryly,
“Well, He (Jesus) was very clear.
He wants me to obey the doctor, as a sacrifice of obedience. He said He’ll take care of the consequences.”
This evening we had our first suspected instance of Moms medication affecting her mental state. Evan (my younger brother) texted Dad with some mildly alarming gastronomical symptoms (he had had major stomach issues a couple of weeks before and was now in Virginia for a wedding), but said he wasn’t in pain and didn’t want to see a doctor. When Mom heard during dinner, she became very upset and stressed, even angry, and would not talk or think of anything else until Evan either went to a hospital or someone contacted a doctor. She seemed aware of her limitations though, and admitted she was stressed because she wasn’t herself. When thinking of how to help Evan she cried “Oh I wish I were coherent now…” Dad and Jazz and I contacted several medical friends of ours to placate her, until we finally got a doctor on the phone who said we could wait to get it checked out. She eventually calmed down, and we prayed the rosary and went to bed.
Taking her steroid pills became her biggest, most fearful daily cross. She called me over when she went to swallow them that evening, which she did with holy water. She did both with a painful expression and told our Lord, “This is for you!” She’d have to wake up in the middle of the night to take them again.
June 28:
By June 23rd I had left again for my second festival in Vermont. On the 28th Dad called a family Zoom meeting.
It was right before a concert, and I sat on the steps outside the concert hall, while the whole family was gathered at the picnic table back home. Dad shared the diagnosis that had come in from the results of the biopsy, and the prognosis: terminal Glioblastoma, incurable, inoperable, with an average prognosis of 12-18 months, with every medical effort available.
I watched Mom’s face. She was peaceful, but obviously struggling and very moved.
Tessie asked the question, “Mom, what do you want to do with your last year?”
When she responded she had an expression on her face that I recognized, which came when she wanted to say something she believed in but was embarrassed that others wouldn’t understand. She said, “I want to spend as much time as possible in prayer in front of the Blessed Sacrament”
June 29:
The following morning, I made the two and a half hour drive back home to Derry for the weekend, where all the siblings who were able to had gathered to be together. Our first instinct at that time was to make music together, which we did late into the night. That evening produced some of the wildest and most powerful Swope jam sessions that ever were. One sibling would pluck out a made up melody in the piano, or propose a rhythm on a drum, and the others would join one by one, layering, improvising, harmonizing, and adding new instruments, from the violin and trumpet to the metal spoons and whatever we could shake that made noise and expressed a feeling. At one point my younger brother added some primal howls to the middle of a particularly exciting jam, an addition which made us all laugh a lot, but also somehow felt right. My parents witnessed the scene and soaked in the energy together, lying on the bed in the corner of the living room, tapping or nodding along to our collective beat.
July 14:
Mom, Dad and Jacinta went on a pilgrimage to Fatima, Avila, Lourdes and Rome from June 30-July 12, which was planned months in advance but ended up perfectly timed between diagnosis and treatment. When she got back, I called her and we talked for a long time about her pilgrimage. She said of her entire trip, “It was a constant grace,” and described different parts of it. She told me about a visit to see the grave of St Josemaria (founder of the Work) in Rome and about her impressions of it, exclaiming that “the beauty of our Father’s vision (St Josemaria’s vision) is just astounding.”
When I told her about the friends I was meeting at the festival, some of whom I loved a lot but seemed far from God or were very different from me, we talked about the mercy of God, and she encouraged me to love them as they are, as God does.
July 21:
July 21 was my birthday, and it was also the day I travelled from the festival in Vermont to my course in California. By that point we had started holding a Zoom call for the whole family every Sunday at 8pm to pray the rosary together.
I connected while I was taking a bus from the airport in San Francisco. I showed everyone the view of the Golden Gate Bridge as I passed over it. Mom was excited to see me, and said she had been praying for me and thinking of me all day.
July 25:
We had started a new family group chat on Signal, just for siblings and just for Mom updates. On July 25, we got a voice memo from Tessie, my oldest sister, who came home to NH with her daughter on one of Mom’s “bad days.” She described in a shaky voice how mom didn’t seem to be able to get out of bed, and could only speak in a whisper and only a few words… like a dying woman. We didn’t know if she would pull out of it.
July 31:
Mom called a couple of times while I was away in CA on my course. By this point, almost all communications went through Dad, since she was almost entirely unable to read or use her own phone. One day I got a surprise call from her though, on her own phone. She was in the waiting room for her radiation therapy, accompanied by her mother who had flown in from Cincinnati to be with her. Mom kept her voice very low, because she didn’t want Grandma to hear her. She confessed to me that she was tired, or maybe that she was afraid. I didn’t quite know what to say, but eventually tried to console her by saying that good things were happening, that good things would come out of this. She said in an exhausted, disbelieving tone, “what good things?”
August 2:
Later in the week, I called home and managed to get Mom on the phone when no one else was around. That morning she had gone to a healing mass with Tara Roberts, a good friend of hers. She was struggling to express herself, but clearly very excited about the experience, because she said there was a “very holy priest,” who did very good things for many people. She kept returning to the priest.
I read her a letter I had composed for her a day or two before in prayer, essentially as a spiritual pep talk, about what God is asking of her and what a beautiful thing it was and how she was very accompanied. At some point when I mentioned how we had to trust God to do good things even when we couldn’t see it, she said in a protesting voice like a little kid, “Yes! I am trying..!”
At another point she stopped me to describe that morning at the healing mass, how she had felt God’s presence and experienced the little miracle of feeling, being able to focus. She said, in an almost feverishly excited tone of voice, “I stayed with my brain — I stayed with my brain for the WHOLE time of the Blessed Sacrament!!” I laughed so hard.
August 5:
When I came back from California, I went straight to mass from the airport and met Mom and Dad and some other siblings there. At the sign of the peace, Mom saw me for the first time, and instead of looking happy she started crying. She cried a long time after mass while I sat next to her and held her hand. At some point she said words I had never heard from her before: “I need you!” I gripped her hand very tightly, to show her I was strong, and would be strong for her.
That night, I slept downstairs with her, where she had her bed set up in the living room. At a certain point after she was lying down she called me over to talk to me.
“People say I am so great, that I am very strong, but I’m not strong. I am very weak.”
Then after a pause: “That is your cross, to see that I am weak.”
August 10:
The last planned travel for the year was our annual family vacation, which this year would be in Maryland. I flew down with Dad while Nathan stayed at home with Mom, who would also receive visits from her brothers and friends from Cincinnati. That first day, Nathan grappled with new medical challenges and developments with Mom, and stayed on the phone a long time with Dad and me. I felt good when I was talking about Mom or dealing with a crisis, but afterward I fell into a state of emotional numbness, not wanting to engage with anyone in my family, not knowing what to feel or think. Dad flew back a few days after to stay with Mom.
August 16:
Nathan and I decided to switch places halfway through the vacation. My brother Joe drove me to the airport, and I tried to describe, in answer to his questions, how I had felt all of the vacation. I felt fragile, like any amount of mental or spiritual stretching, any challenge to my faith, would snap me. I desperately wanted all my siblings to be on the same page with me, to be praying and going to the sacraments and uniting in faith, but that’s not what I experienced, and I was sad and angry at my family for not being where I wanted them to be. By the time I got out of the car, and all the way through the airport, I was holding back tears, less and less successfully with every minute.
Nathan happened to have timed his flight with mine, and was moving through the airport in the opposite direction at the same time as me. We ended up running into each other—literally, and when he came out of nowhere to wrap me for a long time in a warm, strong hug, I broke down sobbing in his arms. I blurted out the thought that had been pounding in my head this whole time: “I feel so alone!”
Upcoming Chapters:
Finding the Cross
Love and the Will of God
Finding the Way Forward
Finding Mission
Finding God
The next time I talked to her, I asked Mom what she meant by “Catholic Church and no other.” She told me, “He is not a God of vagueness. Everything the Catholic Church says about Him is true.”