Dark Days

In the brokenness, there comes revelation.

The dark days are here. It has been two years since my husband went into the hospital for a chemo complication. He didn’t come home.

I am more broken now than I have ever been.

How has it been almost two whole years without my love? Two years of sleeping alone. Of having to make decisions about things that really make me uncomfortable. Not hearing his voice say, “You can do it, honey.” Two years without his laughter, his long, drawn-out explanations of things that only he could get jazzed about.

And in the brokenness, there comes revelation.

I am stronger than I have ever been.

Strength is a quality that helps us overcome adversity. Resilience is another word related to what you need when widowed, but I have come to hate that word. No one wants to be thought of as resilient for a lifetime.

Earlier this week, I had physical therapy and worked with muscles I had not used in years. On the drive home, I thought about these muscles, being in midlife, and what was happening to me from a holistic, spiritual, and literal perspective. Sure, we are trying to correct the things that were not done when I had an accident nearly one year ago that involved crutches and a cane. But I looked back further, knowing my short-term memory was shot all to hell due to widowhood and has not recovered much at all.

What happened to my strong body? What has happened to my internal strength?

Caregiving and widowhood happened. Oh, and being my worst enemy because I am easily distracted and did not pay attention to where I was stepping.

My husband got out of the hospital after his diagnosis just days before the world shut down due to Covid. I had spent nearly two weeks sleeping on a chair in the intensive care unit of the hospital to figuring out how to grocery shop without exposing my husband, not knowing that we had already had Covid — a disease that was diagnosed as a really bad stomach virus and sinus infection around Valentine’s Day.

I had to ask his bosses at work to come to the hospital; they are amazing men who I will always be grateful for because their friend and colleague had been diagnosed with stage IV lung cancer, and they comforted me while wiping away their tears. I walked around like metal rebar made up of all of the muscles, sinew, facia, and veins running through every part of my body; it was so tight and painful due to stress. Most days it still this tight — but that is grief and loss. During this time, I was trying to get our son home from his study board program in London as well as contacting the powers that be at his university to tell them what was happening with his father so they could pull him into a room so we could tell him on video that Dad was sick. Things weren’t so great, but there was a plan.

Three months later, in June, there was a stroke. In August, there was progression on his oral treatment that he had to take once a day. More weeks in the hospital. Occupational and speech therapy. His aphasia from his stroke made it challenging to communicate with him, and even though no one was allowed in the oncology center with patients for appointments, I was given a pass due to communication issues. We added infusion chemotherapy to his treatment regimen, and that is one place I was not allowed. So, every three weeks, I sat in the car for three or so hours, no matter how hot or cold it got, and waited on him. I found the best place in the parking garage where I had phone service and always carried my e-reader. In the winter, I layered and had a blanket. In the summer, as few layers as possible and all the windows down.

There were more visits than I will ever be able to count to cardiology, neurology, oncology, radiology, urology, long days filled with scans every three months, and surgeries every six weeks or so due to the stent they had to replace due to how the disease affected his kidneys. All through this, I worked, and still do, in pancreatic cancer communications. Sit on global committees to help spread awareness and work really hard to reach people who need medically validated information the most. Pancreatic cancer and the ins and outs daily of social media and talking to patients and caregivers is difficult enough. When you’re living with cancer in your home? Well, that’s why I am waiting on insurance to approve my appointment with a trauma-informed therapist.

Through all of this, awful things were happening to my friends and their families, to the people I love most, and to the people who stood with me every step of the way. I won’t give details as those aren’t my stories, but with everything I did — I look at them in amazement and wonder how they did it. How could they take so many hits and still be upright? And it pains me that I did not do all the things I should have for them because we were trying to keep him alive.

Photo by Kind and Curious on Unsplash

For a long time, he did well. Once we got through all of the things in 2020 and he had started infusion therapy, a glimmer of hope. Scans unremarkable. No cancer could be seen. A month later, another diagnostic blood test showed no free circulating cancer cells. We celebrated. Tony was Korean and always joked that every scan was an Asian A+ every time it was unremarkable. He was working full time from home, working out like a machine; our son was with us until the Autumn of 2021 when he went back for his senior year on campus, and we were vaccinated, but still masking because, with cancer, there is never a day off. We attended a family wedding with 300 people, and literally, everyone was vaccinated aside from a handful of people, and the bride sat all of them at the same table together.

Living life with cancer, with all of the appointments, scans, and surgeries, was doable. It felt easy because I never had time off to really think about all the busyness, but the ease in the air with each unremarkable set of scans was palpable.

All of it was great until his last infusion. A few weeks after he had a brain bleed and other details I will leave out that all ties in neurologically. We went to the hospital, which transferred us to a different hospital where the quality of care was definitely dropped in the ICU (my Mom is a career ICU nurse; these are things I know for sure), and we finally made our way to our “home” hospital — where his care team was.

DIC. Disseminated intravascular coagulation (DIC) is a rare but serious blood clotting disorder that causes abnormal blood clotting throughout the body. If left untreated, it can be life-threatening. The prognosis for those with DIC, regardless of cause, is often grim: between 20% and 50% of patients will die. How do you treat it? By giving the patient blood products. I like to joke that he had more blood products in his three weeks in the hospital than a Vampire on a weekend bender in a sorority house.

No one ever told me he might die. But deep down inside, I knew this was our last time in the hospital. Even with all of the scans, including a PET scan that told me, “Hey, there is still no cancer in his body,” it wasn’t enough.

I think only one person knows that when we made that final transfer to our home hospital, I sat up on the night of our 23rd wedding anniversary after he went to sleep and started making funeral plans. I picked the poems and the speakers and started the playlist that would be played in our church before the service when we received friends.

In the afternoon, I went home to work for a little while, rest, and shower just two days after our 23rd wedding anniversary because he was going to rehab the next day after rapidly deconditioning in the hospital. His last words to me were, “You work too fucking hard” and “I love you.” Shortly after I got home came the call no one ever wants. He’s dying, and you are not going to make it.

I walked into that hospital room, and there was my guy, and I sat there holding his hand and made the hardest call I have ever made in my life — to our son — in his first semester of law school — and told him Dad was gone and listened to him howl in pain. It is the worst thing I have ever heard.

Tony died from a pulmonary embolism. When you are given blood products for DIC, you clot abnormally. And what killed him is what he had survived as part of our introduction to cancer back in February 2020 when he had what is called a saddle pulmonary embolism. This rare and life-threatening condition occurs when a large blood clot blocks blood flow to both lungs. The clot gets stuck at the bifurcation of the main pulmonary artery, where it branches into the left and right lungs. The name comes from the fact that the clot "saddles" on top of both branch arteries.

After all of this, when the funeral had been had, everyone went home, and I was alone; I spent most of the time either working or in bed, often working from bed. I did not leave my house for nearly a year unless I had to, not even to go outside and sit on a much-loved front porch or patio, where I loved nothing more than sitting there and listening to the birds sing.

I ordered delivery for my meals and usually only ate one meal daily, supplementing it with snacks like almonds, bananas, and string cheese.

Photo by Bekah Russom on Unsplash

I also read a lot of books — hundreds. Don’t ask me what I read because I cannot remember—mainly paranormal romance, science fiction, and nonfiction. Nothing could resemble real-life love or relationships because real life had taken me out at the knees.

Toss in my accident from a year ago, and what you have is a broken body and a soul that needs putting back together as well.

My original plan for these dark days had been to rent a cabin with no wifi and limited cell service and go off the grid for five days. It felt right when I made the original plan. But as I return to myself, I have restarted my meditation practice — spending more time in quiet — and around people; I realize this is not what I want. So I’ll stay with people who love me — part of my chosen family — as being alone at home where there are so many signs of him and his energy is still felt — is not what I need. I need people to love on me, who will make me laugh and cry with me. The only person I will answer a call from is my son. Everyone else who needs or wants to find me will have the contact information so they can check on me.

Tony always said in the last year of his life, what the kid and I like to call his hippie phase, when I would get upset or angry, “Lisa, you have to check your vibe and keep moving forward.”

I have a new physical therapist, a new therapist, and a new car (a story for a different time). I am starting to update the house to make my nest my own and to make plans for what I want to do in the future—things I want to do only for myself. This is not easy because I miss my partner. I miss having my ride-or-die, who was always up for anything, even if I thought some of the things I wanted to do were downright weird to him.

And in the loneliness and the missing, I take comfort and feel awe-inspired, knowing that I was with this amazing person for nearly half my life. We always said that we were two misfits from Santa’s Island of Toys and that he made sure we met because all misfits need love. And I had love in spades. It wasn’t always easy. The path wasn’t always straightforward. And there were some real shitty times. But we built this amazing thing against all odds. We weren’t perfect, but we were perfect for each other.

As I walk through the coming weeks of anniversaries and birthdays (we were one day apart), it is time for me to start building a new life filled with new dreams and goals and to find my inner strength. The strength is there, but I have not cultivated it. Quite frankly, I’m not sure how to go about it. My physical therapist told me that muscle memory remains from my years of dance and pushing my body physically for strength and that as we work to correct the years of damage, abuse, and neglect, it will start to surface and surprise me.

Photo by Austin Chan on Unsplash

Maybe, just maybe, that internal strength, confidence, and vibrancy that I once had — the qualities he loved so much in me — is like muscle memory. But instead of carefully constructed therapy exercises to work my deep core muscles and strengthen, stretch, and lengthen the muscles in my legs, back, and arms, I must work on these exercises for myself.

Life is more than just surviving. I haven’t been living for a long time — I have been getting by. There is no fun in that, and it sinks me deeper into the quagmire of feelings that are difficult to manage on my best days.

My friend

Elena Sonnino

has always told me there are possibilities — I don’t have to see them — and I have everything I need deep inside me. My 25th wedding anniversary present is me. This is my journey to learning to trust myself and live life again — to be present and show up for myself. It is an act of love and healing. And in this second act, I am doing it for myself.

I would be lying if I said I wasn’t scared. I’m terrified that I will let myself down. Every time I do this, I remind myself that I am not scared of failure. I have failed thousands of times and will fail thousands more. What is important is knowing that I can do this — I am a magician.

It’s time to make magic.