Kelsey Braverman
Sudden loss of husband, Ilya
Hi Kelsey! Tell us, what’s your story? Paint a picture of who you are - unrelated to your loss.
This question is deceptively difficult to answer. I stared at the screen for quite some time, the cursor blinking, and only because of the words “who you are unrelated to your loss.” Pre-cancer, caretaker, widowhood life I would have answered this question simply and quickly. But it is almost like my brain malfunctions when I try to think of who I am without this loss. Whether I want it to or not, loss, grief, being a widow has woven itself into my DNA. There is no decision, emotion, reaction, or thought that passes through my head that isn’t affected by the loss of my husband.
But part of grief is confronting things that are hard. It is about doing hard things everyday, minute, second. So I’m Kelsey. I’m from Waukesha, WI which is where I reside now after losing my husband, but for the last 8 years I was living in Washington, DC so my politico husband could live out his dreams. I work for an international nonprofit working to raise money to save the planet. Climate change, food waste, endangered species, we do it all. This job has helped me get out of bed in the morning these last six months, because it is one of the few things that still feels good. I spend my time mostly obsessing over my five-year old Cattle dog, Bane, being an aunt to a curious 4-year old, and a joyful 2-year old, binge watching true crime documentaries, buying too many sweaters at Target, and perusing Trader Joes. I started journaling via advice from my therapist, and have recently discovered writing is something I never knew I enjoyed.
Let’s talk about the loss of your partner, Ilya. Can you share about your life leading up to it?
When I think back to October of 2020, I have to laugh with disbelief. Already being stuck in a tiny apartment in DC since March, pandemic going strong, already feeling like it is the start of the apocalypse, and this is when a little hip pain turned into a terminal diagnosis. Ilya was an active guy. While I will usually do literally anything to avoid working out (one of my favorite lines was to tell Ilya if a serial killer was chasing me, I still wouldn’t run), Ilya loved to work out, try new things. Years before he had joined a jiu-jitsu gym and ended up tearing his labrum in his hip. He subsequently had multiple surgeries to help with this. When he started feeling pain in that area again, we just figured he tore it a third time and went to get an MRI from his orthopedic surgeon.
I will never get over my husband’s intuition. He was laying in bed, I was standing at the end of it. We were waiting for a call from the doctor. He looked at me and said, “Kel, I have a tumor. I’m just preparing you.” Being my previously optimistic self, I rolled my eyes, told him to stop googling things, and threw his phone away from him. No less than five minutes later, did his doctor call him with news that would forever change the landscape of our relationship and life. They had found a mass in his hip that looked concerning. He referred us to an oncologist in Virginia, and so began our cancer patient and caretaker journey.
The next few weeks are sort of like a vivid nightmare. We had to pick up the radiology report from the first surgeon, and Ilya ripped it open before I could advise him not to. We stood, in a parking garage of a doctor’s office, as my husband for the first time in 14 years broke down. Words like “sarcoma”, “metastatic”, “severe” jumped out on the page. Cruelly mocking my former hope and optimism. He cried, running his fingers through his thick, beautiful hair which I would later have to shave off, while blasting Pharrell’s “Happy”, to “force joy”, a song I still can’t listen to today. I remember feeling numb, telling him it was going to be ok, and staring blankly back at the person who was charging their Tesla a few spots down from us.
Once at the oncologist office, I watched as a stranger drilled into my husband’s hip for a biopsy procedure as Ilya squeezed my hand. Then came one of many excruciating waiting periods. What I didn’t know about cancer, is how much waiting you do. You wait for a diagnosis, you wait for treatment, you wait for counts to go up and down, you wait for the next set of scans to decide your fate, you wait and wait and wait for the next horrible thing to happen. In our case, the results came back positive for malignant tumor, likely ewings sarcoma. From there our best friends had a sister, who had a former classmate, who worked at Georgetown University Hospital, who knew the head of ewing sarcoma and the pediatric/young adult clinic there. Mind you, I was 31 at the time of Ilya’s diagnosis and Ilya was 32. I will just say, this entire situation was obviously the worst, but Ilya’s medical team are some of the most amazing individuals I have ever met.
This started our 10-month treatment at Georgetown. We were told unfortunately his cancer was metastatic, that it is a very difficult, rare, and aggressive cancer. He started chemo that same week, and I went from wife to caretaker and never went back. Ilya endured grueling rounds of chemo, five different drugs, week long stays in-patient, I administered daily shots, he did radiation, we went through a stem cell extraction in Baltimore just in case. Something we were never able to use as the cancer spread too quickly. He lost so much weight, he lost his hair, his eyebrows, his beard. The really messed up thing about cancer, is you think you are “winning” that you are going to be ok. Up until June of 2021, we thought we were a miracle. His scans were always good, he was still active doing 30 minutes Peloton rides on the weekends. And then, the cancer became resistant to treatment, it grew like a wildfire, and his PET scan lit up everywhere. Within a month, on July 25, 2021, five days after his 33rd birthday, he lost his life and I lost him.
“Being a caretaker is about balance. It is about having to be strong enough that you keep them safe, which sometimes means receiving the patient’s frustration, anger and resentment. It also means, letting go of some things even if you don’t agree. Because the thing about cancer is, it takes away all control. ”
I know first hand how difficult, beautiful, and heart wrenching it can be to be a caregiver to a spouse. What was that like for you?
Pre-cancer I would have described Ilya as the “caretaker” in our relationship. He was so strong, resilient, opinionated, stubborn, fierce, loyal, and took care of family and friends in a thoughtful and intentional way. When he was diagnosed, I was determined to try and live up to the precedent he set. In the first couple of weeks, I decided to join a webinar about being a caretaker. I remember listening to a presenter who was talking about her son who was diagnosed with cancer. How they didn’t always agree on how he handled treatment and sometimes you had to let them lead. I didn’t know it then, but this would be the best advice someone could have given me.
Being a caretaker is about balance. It is about having to be strong enough that you keep them safe, which sometimes means receiving the patient’s frustration, anger and resentment. It also means, letting go of some things even if you don’t agree. Because the thing about cancer is, it takes away all control. Ilya had no control over his life from the second he was diagnosed. I remember one day, a few months before he died, he told me he was embarrassed. He was embarrassed that he couldn’t fight and beat this thing. I always worked hard to make sure he felt heard, and his feelings were always validated. While obviously we both knew it had nothing to do with how hard he was fighting, my job in that moment was to just nod and say, I understand, that makes sense, I’m so frustrated too.
Being a caretaker for me was fighting against my instinct to give platitudes, and focus on making sure he felt understood and supported. It meant, fighting through the exhaustion. It meant crying in the shower because I studied the concentric circle of grief and didn’t want to burden Ilya with too much of my emotions. It meant, infusing small moments of joy into an otherwise joyless situation, such as planning a Christmas cabin trip to the Shenandoah, taking long walks together with our dog, and planning a cross country road trip in our heads for a post-cancer life. At the end, being a caretaker was having to be strong enough to let him go. It was having to sign the paperwork to stop treatment since he was no longer mentally competent due to a tumor on his brain. It was holding myself together through endless meetings with doctors and hospice care. It was yelling at everyone enough so that we expedited the hospice process and got Ilya home on his birthday because he had told me the night before when he was still lucid that is what he wanted. It was for the next week, administering an hourly schedule of morphine and ativan since he couldn’t breathe without screaming in pain. It was having to explain to him when he would become lucid, where he was, that it was time for the pain to end, that I loved him, that I was going to be ok. It was holding him in my arms as he took his last breath after five days in hospice. I don’t think the job of a caretaker ends when life does. Because afterwards, I had to handle paperwork, get ashes, move across the country to be near family, settle his estate, pay leftover medical bills. It is an endless process.
Ilya and I didn’t talk much about what him dying would look like. We just didn’t have it in us to admit that this could go the wrong way. There was one moment, when we were laying in bed and he told me I was going to have to be strong, and he asked me how I was feeling. I looked at him and told him that I thought, if this terrible thing had to happen, that maybe there was a reason I met him as a 16-year-old kid, and not in my 30s. That some force knew, we needed to meet then, so we could have 15 years of love, partnership, and joy. That we had the time pre-cancer to build such a strong foundation that I could be the best caretaker to him anyone could be. He looked at me, gave me a soft smile, and said, “I think that is nice.”
How did the pandemic shift both his treatment and your role as a caregiver?
Looking back it seems absolutely ridiculous, almost impossible to think a global pandemic was raging while my 32-year-old husband was diagnosed with a pediatric terminal illness. We didn’t get the drop in visits from family or friends, we didn’t get the hugs and physical support from our loved ones, we were completely isolated on our own little cancer-covid island.
The most dominant emotion was fear. Obviously, primary fear over cancer, but then the knowledge that chemo completely wiped out any ability for his body to fight off infections. That covid could be the end-game before even cancer would be. That going to a hospital all the time to get treatment was terrifying because that is where sick people are. At one point we were wearing three masks. We didn’t go anywhere for months. Not even the grocery store. I would have them delivered and then wipe them with lysol before he could touch them. We would wave to friends from our apartment window as they dropped off things.
The hardest thing for me was the visitor rules at the hospital. I could go to the clinic, but for the majority of his treatment I was not allowed in the in-patient ward. I understand why, you have some of the most immunocompromised people in there. But, the feeling of just dropping off your husband for an entire week to get chemo, is just indescribable. You feel guilty, angry, scared, devastated. I put up a mental block for the majority of Ilya’s treatment. It was about survival. I couldn’t work, be a caretaker and deal with my emotions. I rarely cried. The first time I had to drop Ilya off and leave him, I made it home, and collapsed on the floor of our apartment and cried. I cried for about five minutes, and then told myself that was enough. I probably didn’t cry for months after that.
Any words of wisdom you would give to others who are in a similar situation, dealing with a cancer diagnosis during a pandemic?
Even though it may not feel like it, fun is still possible. Things changed mid-way through Ilya’s diagnosis with the vaccine. But I was able to pull off a “vacation” both pre and post vaccine. I think traveling, no matter how little the distance is good for the soul. Change of scenery, especially during a suffocating global pandemic is important. I didn’t want all of our last year together to be a small apartment and a hospital. Pre-vaccine I worked with Ilya’s doctors to setup a Christmas trip to the Shenandoah with our two best friends. Just them, we all quarantined for two full weeks pre-trip. Got tested, and then drove to a cabin only an hour away. It was close enough to civilization for emergencies, we researched medical clinics close by, and timed the trip when we knew Ilya’s counts were on the high end.
Post-vaccine we found a beach house so that Ilya would spend some time at the ocean. Also close-ish to home, programmed the nearest hospital info into my phone. Also timed it with his treatment, and everyone had been vaccinated. This trip was more risky, but honestly I’m so glad we did it. What I didn’t know is that a month later Ilya would be in hospice, and I still have photos from that trip of Ilya staring out at the beautiful sunrise and sunset. Of Ilya and I staring out at the ocean with our toes in the sand hugging each other. Of him laughing at something silly our friend said. I have memories of dinner with our friends, their parents and his parents.
Creating memories during treatment that are not focused on cancer and the illness is so important. No matter how small, try and make that happen. Be kind to yourself, and remember you deserve joy.
Can you talk a little about the day Ilya died?
It was the fifth day of Ilya’s hospice care. He was no longer mentally with us, drugged every hour, shallow breathing, could no longer communicate. At this point, my parents had flown in from Wisconsin, Ilya’s parents had been with us for six weeks from Israel. Our best friends spent most of that week sleeping in the living room with me next to his bed. I would usually take the night shift and stay with him, and then in the morning take a quick nap upstairs to collect myself.
It was in the evening, the nurse we had hired had said it was probably getting near time. I had just gotten out of the shower, my dad had gone for a walk, my friends were coming over soon but were not there yet. His breathing started to stutter. I texted his family, his parents and sister who were scattered throughout the house it was time. We all uncomfortably sat or stood around his bedside. I held his hand, stroked his face, each time feeling the taunting tumor that I had discovered on his skull a week earlier that prompted us going to the hospital for the last time. After several body shuddering breaths, he was gone. It was like I was numb and I felt everything at the same time. I remember hearing his family grieving, I remember climbing into the hospice bed with his body, and just quietly repeating, “no more pain,” over and over. I remember hearing our friends Ben and Sheri come into the house, I remember my dad coming back from his walk and my mom having to tell him it happened.
Then, as with most things and medicine was the waiting. The hour or so we sat with his body, all of us a little more dead inside then we were before. The funeral home came, I collapsed on the floor just screaming for them to take him. My parents crouching like sentinels on each side of me, daring anything else to hurt me. The rest is a cliché blur. We all sat and told our favorite stories about Ilya, we drank more wine than necessary. We eventually threw multiple frozen pizzas in the oven. Everyone eventually went to bed except me and our best friends Ben and Sheri. Ben and I fell asleep in Sheri’s lap on the floor and eventually we all crashed into the makeshift bed next to the now empty hospice bed. The glaring reminder of the loss we all suffered a mere few hours earlier.
Were you able to have the funeral or memorial service you wanted or were there restrictions because of the pandemic?
We did not do an official funeral - it always seemed too uptight and stuffy for our tastes. In Ilya’s will, I was directed to do what I wanted, except “no religious paraphernalia.” In the next few days, I compiled a list of our DC family about 50 individuals, and we had a memorial party. It was such a strange moment, not only because it was my husband’s memorial, but it was the first time I saw more than five people for a year. I had some hesitation, but my mental health need deemed the gathering safe, as we were vaccinated folks, and we provided hand sanitizer and masks for those who wanted to wear them. Our friend Ben, who wrote our marriage ceremony, wrote a perfect eulogy for Ilya. I gave a short but passionate speech before that. We catered some food, had lots of drinks, and poured a whiskey and diet coke for Ilya.
We are in this very unique time where so many people are being forced to grieve while in isolation. What has that been like for you?
In a time when so many choices were taken from us, it was especially cruel to not be able to see friends and family. It is one thing if you are grieving and want to be alone. That is normal, I found myself needing alone time back during treatment and now while I’m actively grieving. But in the moments when you so viscerally needed someone, when you just need a hug, the weight of everything really felt unbearable at times.
I remember, there was one time when I received a call from Ilya’s doctor that he had suffered a seizure in reaction to chemo. I had just spoken to him a hour earlier. Covid restrictions were still high and I had to wait to get permission to go see him. If you can imagine, my husband has cancer, he had a seizure and is not yet conscious and I have to have permission to see him. It doesn’t even sound humane. I called my friend and I just screamed that I needed her. This woman, dropped everything sprinted 15 minutes to my house, we wore masks, and I finally got a hug. That one hug invigorated me. Gave me strength to drive to the hospital, fight my way in, and comfort my husband. I am extremely cautious when it comes to covid, but there is something to be said that the mental game of caregiving and grieving is equally challenging and important. I have so much respect for anyone going through something during this time, it is something that should be acknowledged everyday.
How did friends and family support you - both during his illness and then after he died?
Between our workplaces, friends, and family, we had a lot of support from afar. They setup a meal train for us, which fed us for months, they sent notes of encouragement, chemo care packages, books, a nintendo switch, endless Facetimes, and lots of love.
After he died, my support has not waivered. I moved back home to Wisconsin, my family has been my grief foundation. Listening, crying, laughing, feeding me, taking care of my dog, encouraging me to do whatever I need to do. Confronting me, scraping me up off the floor after depressive episodes. Ilya and I built such a strong group of friends that it wasn’t even a question of their support.
What was a specific low point or struggle you experienced?
A cancer diagnosis requires a lot of cautious and maybe even manufactured hope. When Ilya started treatment we were happily surprised that his primary tumor decreased by 80%, that the lymph node disappeared, as did the tumor spot in his shoulder. This good news continued to months, scans continuously being stable, Ilya handled chemo as well as you good, he seemed strong.
In June, Ilya started experiencing pain again. Your stomach drops, pain in his case usually meant growth. We did testing, scans, and despite that strong initial response the cancer had become resistant to primary treatment. The cancer had now spread into his bone marrow and all throughout his body. It was terrifying. It seemed impossible.
When we received that phone call, we were told it was in so many places I couldn’t comprehend it. His skull, jaw, spine, the other hip, shoulder. We hung up the phone, Ilya just stared peacefully into the distance. This was the one and only time I really broke down in front of him. Most of my emoting was small sniffles, or a single tear. I remember letting out what can only be described as a howl or a wail, and collapsed on the ground in front of him, hugging him awkwardly. He wrapped his arms around me and said “I know. I know.” I would eventually compose myself. He would call his parents, tell them they needed to get on a plane. I would do the same with my family. Eventually we would tell our friends if they wanted to come they should. Ilya had said to me it felt like we were inviting people just to say goodbye, and he was right. That was the moment I think both of us realized we had fought a war, and lost.
“Just listen. I cannot tell you how frustrating it is to voice a complaint or grievance and constantly have ideas thrown at you to fix it. ”
How did you manage to find joy in those low moments?
Ilya and I found joy in the normal moments. Ordering takeout, him getting frustrated with me that I can never decide what I want to eat. Him offering up multiple options, me saying no to all of them. We found joy in taking long walks with our dog Bane. Walking throughout the Kalorama neighborhood of DC, throughout Rock Creek Park, and DuPont Circle. Stopping to get Ilya a coffee, a baked good, way too many pieces of cake from Cakeroom.
We found joy in our best friends, Ben and Sheri who when safe would come and eat dinner while watching Diners Drive-Ins and Dives, Unwrapped, or some documentary. We did our jobs, interacted with co-workers as if things were normal. Ilya ran a political department with grace and ease, raised money, helped elect Democratic and progressive candidates to Congress. We stayed up for three days watching CNN on election night, just like we would have if life was normal, holding our breath for the results. We hugged each other in horror during the Insurrection of the Capitol.
We watched movies on a laptop in the hospital, did laps around the ward so Ilya could beat his prior record, we yelled at insurance companies on the phone to express the rage we felt inside. We spent time together, as the partners we had been for 15 years.
How do you live life differently from before the loss?
I recognize that life is literally short. That there is a lot we don’t or can’t control. That if I want to buy an expensive sweater or blanket, I’m going to do it, because you should treat yourself. That things I wanted before I don’t want now, or things I never thought I would want now are comforting. Like staying in Wisconsin, buying a home here to be near family.
I’m more jealous. Of couples, of families, of people who don’t have the pressure of intense grief impacting everything they do. And it isn’t about wanting that for another person, it is about missing who I was before. Before I lost my best friend, love of my life. Before I lost being able to hug, kiss, confide, and argue with someone whenever I wanted. Before I became “the widow”. The woman everyone looks at with sympathy and pity. How even if they don’t know or admit it, everyone acts a little bit more uncomfortable around. Who everyone so desperately wants to fix but can’t.
My life was planned out for a while, I was going to grow old with Ilya. Have one kid, he wanted two. Buy some more dogs. I was going to be happy. I now have no plan, I am alone, some genetic testing results were not great if I ever want to use our sample to try and start a family, and most things in life are unknown.
What do you want others to know about grief?
I have this fear that when I get out of bed, shower, walk my dog, go to work, laugh, smile, even breath, that people think I’m doing well. That I’m ok. The internal battle that grievers face is the loneliest. It is both exhausting to compose ourselves, but also exhausting to authentically grieve 24/7. We want to be treated normally, but also get angry when people don’t acknowledge our pain. Grief is so far a conundrum to me. It fluctuates in a way that is too unpredictable. If you are someone trying to support a griever, you have to be prepared for that.
So how can a person best be there to support a loved one who is grieving?
Just listen. I cannot tell you how frustrating it is to voice a complaint or grievance and constantly have ideas thrown at you to fix it. I just want to express that I’m upset, that I’m having a hard time. If someone tells you they can’t sleep, just say “That really sucks.” The person likely knows that they can use lavender lotion, listen to a podcast, meditate, take melatonin gummies, or count backwards from 100 by 7. What they want, what they need, is for acknowledgement that whatever issue they are having is unique to their grief.
If you could go back and spend one more day with your Ilya, what would you do?
I miss Ilya’s comforting advice, and how much he loved our dog. I would spend a nice windy winter beach day with him, watching Bane run alongside the water, chasing a ball, diving into the sand. I would ask him if he thinks I should get a second dog. Does he like the house I’m going to buy. I would update him on the TV shows we use to watch. I would tell him what a monumental impact he made on everyone’s life. On my life. I would tell him I love him, over and over.
Any resources that were helpful for you that others might be able to utilize?
I’m not a social media person, but honestly following accounts like Forced Joy Project, and other strong badass widows like Newmoonmira has completely helped me feel a sense of community in an otherwise isolating situation. There is a bond between those who have lost a spouse, especially at a young age that is really beautiful in its anguish.
What brings you joy now?
Going outside and taking a deep breath.
Playing with my dog.
Not just being a Facetime aunt, but really connecting with my niece and nephew.
Lunches with my sisters and cousin.
Hugging my family in person.
When people text me to say they are thinking of Ilya.
Painting my nails.
Being proud of myself for what I have endured.
Anything else you’d like readers to know?
Don’t be afraid to reach out and share your story. I had no expectations that when I reached out I’d get a response. I don’t know why, I’m just not a huge social media person. But being able to write down my experience, answer such thoughtful questions, it is like a version of therapy I think all grievers need. I’m also taking a grief writing course where you get prompts each day. Writing. Helps.
Want to learn more about Kelsey and her story? Check out her Instagram account, @k_braverwoman.