12 days. The amount of time from cancer diagnosis to the death of my Dad.
I sat on the couch with butterflies in my stomach waiting for the Zoom to load, trying not to let my mind wander too far as I put together some of the information I had gathered over the past week or so. Dad was tired. Really tired. Okay, some weird virus? Or even more relevant to the times we were living in: COVID. Three different times, we thought it was COVID.
I got up to let Kyle in as my family members popped up on the screen of my open laptop screen. From that moment on, about all I can tell you is that there were the words “I have leukemia” and “We don’t know what kind yet, but we want it to be …” I think this is where what he said was a diagnosis that was with an L and not the M one.
I knew it was bad. But we just didn’t know how bad. I didn’t dare Google it. I knew better than that. He was admitted to the hospital right away due to his white blood count being high and platelets being so terribly low. He spent multiple days in the Emergency Department before he finally received a room on the cancer floor.
After doing a bone marrow biopsy, we received the dreaded news that it was the M diagnosis. Acute Myeloid Leukemia. By day 3, chemo started. I remember him texting in the family group chat that he had chosen the frozen four hockey tournament to watch on TV (he was recently getting into it because he knew Kyle loved it – defining Dad moment).
The text we received hours later read: “Well that sucked.” I remember telling him how sorry we were and that we hoped it would get better. It didn’t. His breathing started to be impacted and after chest x-rays they found there was fluid on his lungs. Within a whirlwind couple of days (hours?), doctors were baffled, throwing around the possibility of pneumonia or an allergy to the chemo. At that point, I still couldn’t grasp the events thus far, but I remember the dropping feeling in my stomach yet again.
At that point, he was still on the cancer floor as they tried to assess next steps, so I prepared to head home making banana bread (his favorite) and planning out what I’d pack for his chemo care kit. I also had plans to go “see” him by making a note of encouragement on cardboard for him to read from his window. Mom said he was in a room overlooking a beautiful garden and that we could go stand in it and wave.
This did not end up happening. Dad was taken to CCU the day we arrived and as you might know of anyone who has been in the Critical Care Unit, there aren’t windows for visitors to wave to their loved ones through. Instead, I saw him through a computer screen as I stood in his house making dinner for when Mom would come home that night. We all tried to hold it together, but looking back, I wished we would have said more.
I remember the call at the breakfast table with Kyle and my Mom that next morning after he was admitted to the CCU. It was my Dad and since my Mom was sitting across the table, I could hear him clearly. He was pleading for her to come sit with him because he didn’t want to be alone. I could hear the tenderness and fear in his voice and my heart ached for him. What I would have done to be able to be the one to go sit with him even for a couple hours more than I got, which was none. (F*** COVID)
Little did I know, that this weekend would also hold space in my heart for two other family members. At the time, Kyle and I were helping out, stepping in in Dad’s absence. There, we took this photo. And I’m so glad we did. This is the last photo I have with both grandparents, as they would also pass in the following year after these terrible 12 days.
If you can’t tell by the way the story is unfolding here, this is where things start to hurt the most. If only I had come a day earlier, I would have been able to see him through the window, talk to him and see his mouth move when we talked. (Maybe)
Things with Dad in the CCU started to get worse really fast. After that weekend, he was relying more and more on oxygen to breathe. I got a call the following Friday from my Mom. I had just walked into my house when my phone rang. Mom said that they were going to intubate him and this was my chance to give him some encouragement. She handed the phone to him and all I could do was sob I love you so much over and over and over again. On the other end of the line, I heard the muffled sound of his voice striving SO hard to say something to me through his breathing tube.
Up until this point, the diagnosis was the diagnosis, there was still hope. The chemo was to be the intervention needed to find the answers to the future. That call, to me, was the moment I felt that hope escape my body and soul.
No words. Just that sound. Then the sound of my Mom saying goodbye and the sound of my phone hitting the couch, and then my body, followed by screams that I only thought came from solid actors on TV. This moment in time plays over and over in my head to this day. This feeling I experienced, I can now name. Anguish. Described as an almost unbearable and traumatic swirl of shock, grief and powerlessness.
His lungs need time to rest, they said. The intubator would do the work for his lungs so that he could rest and prepare to keep fighting. He was supposed to get strong enough to not need it anymore. As you now know, he did not.
More regrets. Due to the state of my being and the time of day when I got that call, I was unable to make the drive and everyone suggested that I sleep and make the drive in the morning. I don’t know what more I would have been able to do had I gone that night … but my mind tells me it had to be better than what I experienced.
We made it to Ankeny the next morning and were about to get in line for our COVID tests when my Mom called. She told us to come to the hospital. And then I knew. Only during COVID, when death is imminent, did they let family members come.
I was going to say goodbye to my Dad. My best friend and confidant. The voice of wisdom during times of indecisiveness. The truest supporter and knower of who I was.
By the time we could even begin to process what was happening it was too late. He was too weak, too reliant on oxygen. Too unstable to support the emotions he felt as he relied on that oxygen. He was too sedated to even hear us talk to him in his last few hours.
How did it happen? How did it happen this fast? Why? Why did this happen? There must be something more we can do. Just two nights ago he was talking to the nurses and thanking them for his care! But there wasn’t. And there still isn’t.
Apparently the damage to his lungs was too much, apparently he would not be able to sustain normal life should he come back from this even IF the two days of chemo killed all his cancer cells. When you walk into the room and see your Dad on a ventilator, his chest moving up and down with the cadence of the machine, you just see him. You feel the love you’ve felt all these years in a crushing weight of pain and sorrow.
I think through those 12 days as if they were yesterday. They replay in my brain and overtake my mind and soul at any moment of any day. I think through my last phone call, I think through the text messages, I think through my time in Des Moines. Most of all, I think through what this must have felt like for him. The unbearable pain that pulses through my veins as I imagine him lying there without us, must have been a fraction of the pain he felt as his life unraveled before him.
“Grief, I have learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers in the corners of your eyes, the lump in your throat, and the hollow part of your chest. Grief is just love with no place to go.”-Jamie Anderson