Let’s get the white elephant out. On top of suffering with mental illness, I lost my husband right before I turned 32. Diagnosed at age 26, he died when he was 31. Kyle and I were married at the age of 25, and I had our first and only child together when I was 27. I was a few months older than Kyle was. His diagnosis was devastating and his prognosis was even worse- a 50% chance of only living 5 years. He lived a little over 4 1/2 years with it.
Kyle’s diagnosis was like a huge storm that had hit me. In February of 2012, the night he was diagnosed, I began grieving. I knew we had a fight ahead of us. See, I’ve always been one to look at situations realistically. I was used to it. Growing up, nothing was sugar coated. I had to face circumstances as they were given. In March of 2012, on Kyle’s birthday, to be exact, we had our first visit with an oncologist, specializing in his cancer type, at MD Anderson Cancer Center. Someone I once met at MD Anderson, while waiting on on our husband’s scans, referred to it as a nightmare Disney World. That’s what it felt like. Everyone there was with someone battling cancer. Everyone was sick. I was sick. My husband, and father of my 3 month old baby, was full of cancer. The person in my life that held me accountable for everything and took care of me, was sick. I knew we had to fight. It was then that I found my voice. It was then that I knew I needed to learn to speak up and advocate for my husband’s care.
Kyle was diagnosed with Desmoplastic Small Round Cell Tumor- a soft-tissue sarcoma. No local doctors had heard of it. If you ‘Google’ his cancer type, you’ll see that there aren’t very many cases of it, and likely, it would point you straight to MD Anderson or to Cleveland Clinic- where we later transferred to. At MD Anderson, his doctor, hesitantly gave us our options. Soon, Kyle was to begin several months of grueling treatment. Luckily, with the orders from MD Anderson, he was able to begin chemotherapy locally. Upon our return from MD Anderson, Kyle began chemo. His regimen ordered him to be hospitalized on Monday-Friday, every three weeks, with chemo around the clock, beginning on that Monday and ending on the Friday of that week. On the Saturday following, he had to go in to his local oncologist’s office to receive a shot of Neulasta. That $7,000 shot was to boost his white blood cell count back up. Home for a few weeks before his next round, he was so sick. The chemo regimen that he was on kicked his ass. After a few weeks home, if his blood counts allowed, he’d go in three weeks later and do another round- same thing, Monday to Friday, around the clock and Neulasta shot on Saturday. Our goal was to shrink his tumors enough that he’d qualify for surgery. A few setbacks and low blood counts and several months later, by October 2012, he was ready for surgery. Long story short, we’d stay in the hospital for a week straight, all while our families were at home, raising our children, for him to do chemo. In October of 2012, he had a nearly 12 hour surgery at MD Anderson- removing over 500 tumors from his body. (Read about his cancer type. It’ll explain the reason for the amount of tumors.) A month after surgery, he was ready for radiation. He did a month long regimen of targeted radiation- again, at MD Anderson. Fresh from surgery, 9 grueling rounds of chemo, pre-surgery, and a month of radiation wore him out. Upon completion of radiation, he began a ‘maintenance chemo’. That chemo, he was able to do at home. Kyle was tumor free! The light at the end of the tunnel that I had been praying for was finally here……..but, that ended quickly. Less than a year after his tumor removal surgery, his cancer was back with a vengeance. I began sourcing out all of our options. Where should we go next for treatment? What about clinical trials? What about……everything? I made it my goal to turn over every stone possible to keep him alive. My only prayer was for ‘God to give us the wisdom to know when it was out of our hands’. That time came in 2016, when there were literally no options left, besides those that were physically killing him. He was dying. There were no more options; we had to stop.
In our journey with cancer, we landed ourselves with a specialist at Cleveland Clinic. He, along with Kyle’s local oncologist, was the epitome of what you’d wish for in an oncologist. (Hopefully, you never will need one.) Kyle and I were on a trip to Cleveland Clinic for what we knew would be his last option. He got so physically ill on that trip, that I decided it was time to have the “talk”. Both of us sat on the bed, speaking no words, we nodded at each other, knowing what we needed to do. It was time to stop treatment. When I tell you that was the BIGGEST relief for both of us, as crazy as it sounds, relieved we were to know that we had finished our part of the fight. It was now time to hand it over to God to allow His will to be done. Shortly after we returned home, Kyle went on hospice care and passed away less than 3 months later.
I remember when Kyle was diagnosed like it were yesterday. I can still picture the emergency room so clearly, the room that we were in, the jokes we shared about what really might be going on. The last thing we thought was cancer. I can still see the look on the faces of those involved in his care that night, and the words that the doctor uttered when he said “I’m 99% sure you have cancer.” I could’ve hit my knees. We were devastated.
After his diagnosis, I needed a book to tell me that everything was going to be ‘ok’. I got in my car and drove to Barnes and Noble bookstore, thinking surely there’s a book written by a 27 year old woman whose husband was diagnosed with cancer and everything was going to be ‘ok’. I browsed every book shelf for hours and found nothing. What I realized was that my answers lied within the Bible. I needed to read stories of how God truly was the ultimate healer, and no matter how many books I’d read, no matter how many rosaries we prayed, or how much holy water we sprinkled on Kyle, it was solely God’s will whether or not he’d beat this monster. Besides speaking up and advocating for his health, ultimately, we needed to leave it in God’s hands. But, I knew I needed to write THAT book. I began blogging daily about Kyle’s journey through cancer.
Like I mentioned before, grief started the day that Kyle was diagnosed. I didn’t just begin grieving on the day that his casket was closed. I’m not sure what’s worse- grieving intensely for 5+ years, or choosing to be so naive to think that he was going to walk straight out of his illness, and begin grieving on the day of his death. I’ve never really been a person that thought negatively. I remained hopeful through each treatment, surgery, and clinical trial. I prayed for each treatment to be ‘the one’. The one clinical trial to finally stop this beast of cancer in its tracks.
What’s the right way to grieve such a situation? The way I grieved, as I mentioned above, began on day 1. Not on day 1, post loss- day 1 of diagnosis. I grieved daily. Aside from my grief, I still had to continue to be a mother, wife, and caretaker. All while living as ‘normal’ as we could, away from the hospital, we’d still have episodes of 3 am nausea and vomiting, middle of the night pain, middle of the night crying sessions and questioning God. Kyle and I grieved his illness together. We fought his cancer together. We agreed on everything- except that I called in hospice against his will, but we agreed on everything. He knew I had his best interest at hand and the rest of the world saw it, too. I guess the most negative thing about grieving through the process is the assumptions that follow the loss. Kyle’s death came to be expected. It literally came down to a waiting game. He was ready, and I was ready for him. My best explanation was that it was the saddest, most relieving day. I was so sad, yet so relieved that he was finally at peace. How unfair of me to keep begging God to leave him here, when he was crying out to God to take him? I was at peace, y’all. He died peacefully on September 30, 2016- in our house, surrounded by family. I grieved a grief that made me sick for about 2 weeks following. I was sick to my stomach. I had no appetite. I had no desire to be in my house anymore. I was now a widow. Due to my mental illness, I couldn’t just hang around anymore. I had to get out. I guess I began getting out and dating a little too soon for the world’s liking, so I was instantaneously judged. “She’s never grieved.” “She didn’t love him.” “There’s no way she could’ve loved him.” Let me tell you, I LOVED my husband and he knew it, too. I was a damn good caretaker. He died and I was left with the peace of knowing that we did everything we possibly could to save his life. What we prayed for came true- God’s will be done. And, as always, it was.
Sorry if this article seems a little rambled. I have so much to talk about on this subject, and I’m doing it in steps and trying to avoid too lengthy of a blog post. If you’d like, you can read Kyle and I’s journey at: http://www.caringbridge.org/visit/kylequebedeaux or simply Google “Erin Quebedeaux, widow”. I’ve written two published articles about life after loss and through widowhood.
Stay tuned. Next up…….you guessed it! My story on widowhood.
Love you, Erin….