Seven years ago today, I was already in Sean’s room at UAB. I followed the ambulance up I-65 the night before, broke into the hotel just after 1 AM—yes, literally, by kicking the door panel when no concierge was available in the lobby nor was answering the phone, and then walked to the adjoining hospital to check on Sean and take him his things, not that he was responsive enough to need them at the time because he was in so much pain and just rested with his eyes closed. I went back to the room just after 3 AM and slept for a handful of hours, waking before 6 AM, got ready, packed what things I’d displaced, and walked with my luggage to Sean’s room.
I don’t know if I got coffee on the way up, but I do know that I was wearing an olive-green Haute Hippie dress. It might seem silly, but I know today would be an important day one way or the other in our journey, so it felt less like dressing up and more like armoring for battle. At this point, we knew the cancer had migrated up via Sean’s cerebral spinal fluid and was in his brain. Rather than arriving at UAB the night before in our vehicle together to finalize the prep for the life-saving stem cell transplant Sean was to have, we were going to learn what came next in this journey, one where we’d continually been told Sean was going to survive especially with the stem cell transplant, which is basically a biological hard drive reset.
They’d extract stem cells and cleanse them of the cancer while he underwent a rigorous chemotherapeutic regimen, possibly with radiation, to eradicate the cancer in his body. It would also wipe out all of his healthy cells. Once the treatment was complete, they’d reintroduce the healthy cleansed stem cells back into his bone marrow where they’d begin to proliferate and be reintroduced into his body through his bloodstream, rebuilding a cancer-free immune system. It was, after he nearly died in June when the cancer mutated. He was one treatment away from being able to ring the bell declaring he was in remission from the Hodgkin’s disease he’d been battling since he first got sick in September of 2018. The new cancer was a rare and aggressive non-Hodgkin’s lymphoma that formed on the same protein the Hodgkin’s disease was on—protein 34, which was also the age Sean turned in 2019. I was 36. The cancer, per his oncologist, should have never formed. The treatment for the Hodgkin’s disease should have ensured that. Thus, we were running a Hail Mary to save Sean from the new cancer.
Up until July 26 when he ran a low-grade fever that night and developed migraine symptoms the following day, it all looked promising. This new development was not part of the plan but as I understood it, there would be a plan.
On the elevator ride to room 7317 where Sean was staying—his room number was the last text message he ever sent to me, I shared the space with a warm woman in a long white doctor’s coat. She had close-cropped hair with short, tight curls and wore glasses.
“Where are you going?” She asked.
“To see my husband,” I said.
“Who is your husband?”
“Sean Delcambre.”
“That’s who I’m going to see, too,” she said.
“Oh, okay.” There was a pause, then she asked, “Do you have kids?”
I replied that we did have three children. I don’t know if I mentioned Jude. I had gotten past the need to always mention my angel baby. “But we can’t have any more,” I added. They always asked if we had kids. I know chemo can affect a person’s ability to have children, so in case that was a concern, I wanted to clear the question and let them know that our family was as full as it was ever going to be.
She looked sad but absorbed the information without explaining the reason for the question. The elevator arrived, and she said she’d be in shortly. I went to the room where Sean was still sleeping, just as he’d been a few hours earlier. I entered quietly and laid down on the long couch tucked under the window where a gray dawn light was just beginning to show. I curled up on my side facing Sean and covered up with the oversized gray hoodie that used to be my dad’s when he worked at the power company, and I waited.
When the doctors came in, they determined they’d need to do a comprehensive CT scan to have a complete idea of the situation they were dealing with. When it came time for that, I followed the nurses who rolled Sean’s bed to radiology and waited in a large atrium with several other people. I paced around. I took a photo of the sign on the wall that prohibited being disruptive or loud with phones and that also, absurdly, prohibited things like coolers, televisions, coffee makers, grills, etc. It made me wonder just how long some people spent in these waiting areas if signage was needed to prohibit portable cooking devices.
I also texted my best friend, Becca, to give her an update. At one point before Sean was returned to me, I said:
“Sean is conscious though mostly resting. He’s aware of what’s going on and feels this is something he will get over. Yesterday he talked about going to the mountains during L’s Mardi Gras break, something we had talked about doing when he was in remission. His optimism is beautiful. I’m scared but also prayerful and realistic. I’m focusing on being mindful and taking it one step at a time, not contemplating any future beyond the next second. I know that life isn’t easy nor is it always fair. No matter what happens, life is a beautiful gift, and I feel confident if not peaceful in the knowledge that no matter what happens, it will be okay. God know so many others endure so much worse. I know that there’s a directly opposing light to all of that is dark and full of fear. It might take time to see it if the worst happens, but I know it’s there.”
It was just after ten in the morning. I had no way of knowing how much darkness loomed on the horizon or that the light would narrow to a pinprick before noon.
Not long after we were back in the room, the neurologist oncologist came in, and he established that the plan would be to treat the cancer in Sean’s brain first and then go from there. They were still waiting on the results from the CT scan. That would inform how the treatment would proceed.
I followed him into the hallway not wanting to ask questions that revealed my otherwise repressed fears in front of Sean. Up to this point, Sean had not asked what the prognostic outlook was for his cancer or anything else I’d researched. Following along on the research not only enabled me to talk to the oncology team both at home but also here but it also felt like control in a situation that I otherwise had no authority over. Other than running, it was the only way to keep the anxiety attacks I’d started having in June manageable.
In the starkly lit corridor where doctors and nurses and lab techs scuttled like ants, I asked if this was something they treated often. With confidence, the doctor assured me this was something they treated all of the time. Once they got this managed, they’d do a modified stem cell transplant, which meant they’d use donor cells rather than Sean’s for the treatment. I did a quick mental calculation. The prognostic outlook wouldn’t be quite as good, but it was still solid. With those assurances intact, he left. I went back to the room and got my wallet, so I could get something to eat downstairs.
I was absolutely not even remotely hungry. I was consumed by sleep deprivation and nerves. For nearly a year, we’d been jarred back and forth between stability and chaos. My daughters still remember waking up some mornings to find both of us gone and either my parents or Sean’s parents installed in their place. Before the cancer, we’d never left the girls alone barring one night in early 2014 for Sean’s cousin’s big 40th birthday celebration. Now I couldn’t keep count how many days and weeks had gone by that I was spending every night at the hospital with Sean, going back and forth between home for a few hours between home and the hospital. The stretches were wider at first, but as May rolled into June, they were compressed.
I was only gone for about 15 minutes. I’d settled on a caprese salad that I took back upstairs. Before I made it to the room, the neurologist oncologist met me in the hallway. “Is there a place we can talk alone?”
Of course, I had no clue. Wasn’t this his hospital? I looked around, and we walked back toward the elevator where a large glassed-in waiting room was situated. There was one woman in there, but when he intimated the need for privacy, she kindly let herself out.
I braced myself for impact. “This isn’t going to be good news.” It is never good news when someone wants to talk privately to you in a hospital.
“I just looked at his scan, and I’m afraid the cancer has spread too much, too much, to his vital organs, and there’s nothing more we can do.”
He started listing off organs—spleen, liver, while my head swam. “What about Car-T?” I asked. It was a fairly new and successful treatment protocol for the cancer Sean had developed.
He explained that the current research was on T-cell anaplastic large cell lymphomas and that Sean’s cancer was on the B-cell. “He would be perfect for clinical trials,” he said, the unspoken if only the cancer was on the right cell, sticking to the silence that followed his lamentation.
I understood. I’d been following along the entire time, so I knew the doctor knew what he was talking about. I remembered Sean’s oncologist at home, Dr. Butler, saying that he wanted to tell me first when Sean was diagnosed with the second cancer in early June because “you always ask such good questions”. In the midst of processing the unfathomable, I still wanted to ask a ‘good question’. What information at this point did I need? Subconsciously, I believe this was my last grasp at a modicum of control.
“How long does he have?” I clarified that I know he couldn’t know. I just wanted an idea of what to expect, and I wanted to be able to answer questions for our family.
The doctor pondered a moment before answering, “Days to weeks.”
I’m sure he asked if I had any other questions. I did not. Hospice would be in soon to make arrangements. There was no point keeping Sean at the hospital. He’d be better off at home with our girls making the most of what little time he had left. Not once did I consider my own feelings. I just absorbed it. I couldn’t look at myself…I couldn’t give in to fear, and honestly, at that time in my life seven years ago, I had no sense of self-care. I was still stuck in the conditioning I’d learned from my own mother—put everyone else’s needs first and ignore your own feelings to the point that you don’t even acknowledge them. For the moment, Sean was still my priority. I could avoid myself for a little while longer.
Also, I still had to make the worst and the hardest phone calls anyone else has to make. I called my mom first because I wanted them to be on the way to my house where Sean’s parents were watching the girls. I knew once I called Sean’s mom, they would want to be headed to Birmingham.
Saying it out loud to my mom made it real, and I choked out a sob that rose out of my chest while I stood there on the phone. My mom said, “Oh, my poor baby. I should be there.” It was enough to pull me away from the cusp of breaking down. I didn’t need to have my mom there. I don’t know what I needed. A lifetime of being able to acknowledge that yes, it really was that bad and that I’m worth feeling every one of my feelings and allowing to let the hurt things hurt and to show that it hurts instead of repressing it or putting it on the back burner because I have to prioritize everything else ahead of myself. In hindsight, I wish I’d processed things in real time, and I wish I’d allowed myself space to acknowledge my fears instead of letting them manifest into very real anxiety attacks with shortness of breath, a racing heart, weakness in my legs, and pinpricks across my skin. It would take a long time to decondition that programming, though.
Then I called Sean’s mom, and I called his brother, Michael, who’d just flown back to Brooklyn after visiting the week prior. He would call Caitlin, his sister.
The trembling started on the way back to the room. I might not have been able to process what I was feeling, but my body was reacting to the shock, much the same way it did when the doppler on the ultrasound showed us Jude had no heartbeat and I was being rushed to the OR for an emergency cesarean. My nervous system was in overload. I went back to the room and sat next to Sean on the bed, crying. I laid down next to him knowing that in four hours, we wouldn’t be alone. I tried to savor every moment of being near him. We held hands, and he said, “This is nice.”
Yes, dear, this is nice.
—
I laid next to Sean, not fully processing what I’d just been told. I didn’t believe it was a mistake, but I was so disconnected from the feelings that caused the anxiety attack. I was just numb. I was in shock. In some ways, even though it’s been seven years since that day, it’s still a shock. I remember a day within the past year when I was dropping my kids off at my parent’s house, and I looked at my oldest daughter and I said, “It wasn’t supposed to be this way.”
It wasn’t supposed to happen where our lovely little nuclear family was decimated by the death of their father, where all of the work I’d been doing on myself was wiped out in a single event or where all of the repressed trauma that I’d been slowly working toward working through would rise up all at once like demons straight out of Hell, where I would come to realize how little emotional support I had outside of Sean.
I was left to figure it out both alone and struggling with demons that I admittedly and subconsciously tried to drown with a nightly wine habit. I couldn’t stand to be around people, nor could I stand to be alone with myself, with the discomfort of the totality of everything after Sean died. I had more than grief sitting beside me. I had shame and conditioning and an inability to truly feel compassion for myself because—as I said—the conditioned modeling I’d grown up with wasn’t going to permit that.
That’s why I’m still healing, unraveling decades of misguided beliefs that are far too common within the conservative cult in which I was raised. But to be sure, after Sean died, I was utterly alone, and I mistook familiar for safe in the person I dated far too soon—a form of bargaining, I later came to realize, and a person who did everything in their power to destroy my life when I finally get free of them.
But I have come a long way in seven years, and while I cannot help but remember every milestone from this time in 2019 leading up to the fifth of August when Sean did pass from this world, I can also remember to be grateful for the wins.
I see reality clearly. I no longer accept or tolerate bad behavior from anyone. I can look back at my own mistakes and my own avoidance of things that have to be handled with compassion and acceptance, not guilt or shame. I don’t need permission to witness my feelings or to care about them. I refuse to let other people who can’t care about their own feelings and their unwillingness to care about mine make me feel any kind of way about me meeting my own needs. This is reparenting. This is healing. This is the work, and even though seven years ago both does and doesn’t seem like that long, I still need to go back and let that version of me know her feelings and fears were valid, and that yes—it was that bad. I refuse to allow people to tell me, as I texted to my best friend, that other people have had it worse. And of course they have. I find some of the cruelties enacted by other humans toward one another to be unfathomable. But just because a person has their needs met, it doesn’t mean that their feelings don’t matter, and I should add that it’s only people who don’t know how to let themselves feel their own feelings avoid basic empathy and compassion by telling someone who is clearly suffering that they need to “get over it”.
I will never get over losing someone like Sean. While I’ve met many wonderful people in my journey, I will never get over him. He was a person. He was my friend. He was my husband. He was my choice. He was and will always be the father of our children. You don’t just “get over it”, and anyone who does…well, I don’t know what is broken inside of you, but please—don’t bring it around me. I am tired with and respectfully done with sharp-edged and sharp-tongued people, people who weren’t in those rooms and weren’t holding it all together out of unconditional love for someone who was innocent.
Sean’s cancer was the direct result of long-term and known hexavalent chromium exposure at Keesler Air Force Base at the 403rd in Biloxi, MS. They knew. I have proof, but as we know, this administration, the same administration in charge at the time of his death, couldn’t care less about service members. Watch or read Aaron Parnas’s fearless independent journalism, and you’ll see and agree. Sean served our country with the utmost integrity. He really cared. He had values. He stood for something, which were the friends and family he enlisted to defend as an Air Force Reservist. He didn’t deserve to die because his shop was run by unaccountable cowards, nor did the other people who were sick because of the exposure deserve to have the quality of their lives compromised.
My children didn’t deserve to lose their dad. I didn’t deserve to date an abusive person after Sean died. I didn’t deserve to be stalked. We didn’t deserve to be terrorized.
Starting over feels like a life theme at this point. I feel so many of the old feelings that I felt in the fall seven years ago. Maybe it’s because I’ve isolated or maybe it’s because I’m breaking a pattern—a pattern where I turn to what’s familiar and seemingly available rather than what’s genuinely safe. I do know what to do now. As for the ennui, it’s just that time of year where the ghosts of the past rise up to remind me of where I’ve been and to show where I am and to reveal what I still need to do.
I am moving through each moment as it arises, and I am remembering and feeling. Tomorrow, Sean’s family will come visit, and the girls and I will go eat with them. We have a short trip planned for next week. We will write new memories onto these dates. They won’t erase the stories of the past, but they will be something that layers a fresh story over the ones written on the spiral of time.
It won’t be long. Seven years ago—I am laying in bed, and it won’t be long before Sean’s family arrives and then the tears will fall. Then I will clutch my sister-in-law, Caitlin, and I will sob so hard as she cries into my shoulder, that I feel a muscle painfully pull in my heart. It’s the kind of release I need. Sean sleeps through our tears. We are all in shock. We gather around his bed. Later, Mindy and Kristi from Nashville and Memphis will come, and there will be more tears. At some point, Sean wakes up and asks why they haven’t started his treatment. He is not all there. He’s there, but he’s not, and I carefully answer that the doctors have realized that the treatment isn’t going to work the way they planned, so they’re sending him home to be with the girls. I am aware of his dad standing at the corner of my peripheral vision.
It was a question issued to the room, but it was mine to answer. The fact that his parents allowed me to make those judgment calls, that they respected me as his wife, is something I am eternally grateful for. Because I was with Sean the most when he hallucinated for nearly 36 hours straight on Father’s Day weekend in June from the profusion of morphine and chemo drugs from the first round of ICE, and I remembered the way he would sometimes “come back” and ask in abject terror, “Is this it? Am I dying?”
And I said, “Of course you aren’t,” without a clue as to what was happening other than a CT scan hadn’t shown any causes for concern.
I didn’t want to trigger him into terror, so maybe that was wrong, but I thought it would be selfish to tell a dying man that he was going to die when there wasn’t a damn thing he could do about it and without knowing if I was going to submerge him into fear and paranoia or if I was going to give a cancer-addled mind the freedom to contemplate death. I just had to use my intuition, and I had to be selfless. Sean and I did everything together, but this, I carried alone just as soon, I would carry on utterly shocked, broken, and terrified and alone.