Now comes the second anniversary of Michael’s death. When he died, I stood at the edge of my new life with no real plan. I was whatever comes after utter mental, emotional and physical fatigue. I gave everything I had to him as he confusedly and begrudgingly made his exit from life. In sports terms, I left it all on the floor. I am so glad I did that. I feel good about the way I was with him as he faced his death. I know that makes me lucky. In my support group that I attended after he died, I learned that these things don’t often turn out well and that survivors are haunted by some of their choices and decisions during the waiting time. Through the years of riding the cancer rollercoaster, I remember thinking that what I was experiencing needed to be shared with others who would face this road one day. I wanted to write a book about everything we’d gone through and give suggestions for how to navigate the medical parts, the logistical parts, the family parts, the emotional parts. I have everything I need to do this. I have all of Michael’s medical records. Scans, reports, lab results and photos of his tumors. I have every email exchange between me and researchers across the country. I have lasting relationships that I made with nurses and doctors during the course of his disease who would help enlighten patients and their families. What I don’t have is the book. Instead, during these two years, I’ve been trying to find my space, writing this blog and still sharing the lifetime of conversation I had with Michael via letters to him that now number in the hundreds. I don’t know if I’ll ever write that book. But I’ve inadvertently written other books which I’d like to share and I’ve learned to trust my instincts to lead me where I’m supposed to go. And so on this second anniversary, I need to write about the waiting time. For me, that was the time when all efforts to save Michael’s life were over because there was no way to restore real quality to his existence. What remained was the watching, the wondering, the wishing, the confusion and the teetering between crazy hope and profound resignation. Because my need to purge myself of the weight of my ever-moving thoughts, I can look to my journals for exactly what I was feeling and thinking in those days before his death, when there was nothing left to do but the smallest comforts, the whispers of love, the sensation of warm skin to skin, soon to grow cold. I’ve re-read them for the first time today. I’ve gotten strong enough to express those harrowing memories to the outside world now. Perhaps they’re not as instructive as I’d hoped they’d be but still, they shine a light on what it feels like to be at the edge of goodbye and finally, the end. So here are my notes from those last days.
May 16, 2017
Although overwhelmed by the magnitude of what’s ahead and very frightened, I feel a sense of relief that I’ve made the decision to sign Michael up for hospice. I wish he or the doctor had chosen instead of me. But I suppose I always knew it would be me. How will I re-enter the world? Hello, everyone. I decided to give over my whole life to my primary relationship for the past 5+ years to squeeze whatever I could from our time. Now I’m alone. Any room for me? All the turns in this Merkel cell road. If Michael had taken my earlier derm appointment in March 2012 instead of April. If Dr. L. had been been able to treat him with chemo instead of being outvoted by the team. If they’d scanned him every three months. If he’d gotten into the Avelumab trial. If he’d been able to stay on Keytruda. If, if and if. I have to let it all go. Because it doesn’t matter any more.
May 17, 2017
It’s not every day that you sign your husband up for hospice. No more doctor’s appointments. No ER. No more bloodwork. Just waiting and watching for death to come. I told him that no matter what happened it would be ok. He said, no it won’t.
May 18, 2017
So admitting Michael to hospice was the worst. But I need to think more clearly and get as much help as I can. He’s still getting in and out of bed but he’s confused and handling his private needs are a nightmare. He is still very big and my body aches trying to hold him up. He’s confused about where the bathroom is and I’m afraid to leave him for a second. I am so torn up by all this but I wish it would end tomorrow. It’s awful for everyone.
May 19, 2017
Omigod it finally happened. He fell in the bathroom. I’d held his hand to get him there, he stepped in and maybe he got dizzy. Whatever it was, he fell and lay splayed out in the shower on his back. Without my son here, I’d never have been able to get him up. I pulled while he pushed. I hope nothing is broken. I hope he didn’t hit his head. Terror-fear-heartbreak. The hospice nurse came and Michael told her he still had a lot he wanted to do. But he can’t do anything. I’m just watching him slide away. Tonight he gave his pocket watch to our oldest grandson and told him that he loved him. Next, he said our son was nice and smart, and that our daughter had such spirit, and that I was smart and was his girl. Little nuggets to savor later. Dr. Z. called and gave me her cell phone number. She’s worried about me. I know how much harder things will get. I’m very afraid. But I’m not willing to put him in a nursing home. Not yet.
May 20, 2017
I think of how many years I’ve thought of Monet painting his wife’s death face. And now here I sit, looking at what will soon be Michael’s. Both images are seared into my brain. Until my brain will one day, blessedly, let go.
12:50 pm – Michael said he didn’t feel so good. I explained that he hadn’t been eating or drinking much. I offered him Boost or Gatorade which he refused. I asked him if he knew what was happening. He said, I guess I’m dying. I said, yes, I guess so too. And I told him there was nothing I could do to stop it. He’s cold and has pulled the covers over his face.
3:32 pm – He’s only had a few sips of water today. I asked him if he was letting go. He angrily said no, are you kidding me? That’s the most fucked up thing I’ve ever heard. And he went back to sleep. He’ll never give in. When will the rough breathing begin? When should I start the drugs?
7:30 pm – Today was so bizarre. After a day of no eating, little drinking and an upset stomach, he suddenly said, I don’t think I’ve eaten anything today. I got him a Boost and he drank part of it and asked for the kids. They both were near and he hugged and kissed them. We talked and he said he didn’t particularly feel like dying. Everyone cried. After awhile he got tired and the kids left. Twice more he talked about eating but he couldn’t do it. What peculiar manifestations. No memory, some memory. Lack of balance but still fast reflexes. Hand tremors. What is coming? We played music and sang. I think everyone was happy for a few moments. What will my night bring? I need sleep.
May 21, 2017
Another unpredictable night. Michael asked about meals but can’t eat except for a few bites of jello. We talked and he had a lucid spell in which he seemed to be able to process that he was going to die. I full expect that recognition to be gone at any point. He says he’s not in pain. I can’t figure out when to pull the trigger on the medications. It feels like I’d be killing him. I know he has no quality of life. But every time that spirit of his pops through, I hesitate. I know he’ll be that way until the end. I guess I’ll know when it’s the right moment.
May 22, 2017
Michael had an awful coughing jag which he said really hurt so I gave him morphine. He’s barely moved since. My recliner is right next to the hospital bed, so I hold his hand and doze. The kids are around a lot. I went into the dining room for a time to talk about all that needs to be done when Michael dies. I started organizing for this years ago but it feels unreal. My daughter went home to see her kids and after she left, Michael reached up and stroked my face. That is a touch reserved for him. I’m blown out with fatigue. I rest beside him. The hospice nurse came. So far, his vitals are still normal.
We have a ways to go. He has terrible stomach issues. I’m trying to think of my chores but I find myself thinking of Faulkner’s As I Lay Dying. Michael lies there in the bed. So unreal. The rugged stuff is still ahead. Who knows what the cancer is doing in his brain?
May 24, 2017
It’s hard to describe the past 24 hours. Michael went from some communication and an attempt to drink to shutting down completely. Twice in the night he could barely make it to the bathroom. After the second time, I gave him drugs so he could sleep. I’ll remember him reaching for my hand, touching my face and saying my girl. This is my nightmare. Am I killing him? The hospice nurse says his agitation at approaching death doesn’t feel good to him, so I’m helping him. I’ll struggle with the ethical and moral considerations of this for a long time. When people are in hospitals and nursing homes, the family doesn’t do this. But I’ve been through it before with my dad. I’ve done all the practical tasks. I moisten his lips. I’ve contacted the funeral home. Ever organized. But this is really going to end. My boy is lying in bed right in front of me and he is going to disappear. The future is formless, shapeless. My boy. Going to ash. Will he die today, on my birthday? My family is with me, my sister coming in with all her memories from the old days of my red-headed hippie boy who was sweet as sugar. My friend drops off a fabulous cake that’s so huge no one could eat it all. There is guitar playing and crying and me watching the clock, willing the hands forward. I’m kaleidoscopic.
May 25, 2017
Michael’s breathing is slowing down. Periodically he makes dreadful sounds. Is it fear? Discomfort? Dreams? He seems responsive to my voice. I know he doesn’t want to let go. I can still feel resistance coming from him. Stubborn. Unvanquished. But he’s done. And he can’t stop it. It is awesome and horrifying to watch. How I’ll miss the comfort of his body. The most relaxing place I ever lived. The hospice nurse called this morning. She’s surprised he’s still here. He was still well-nourished except for the last few days. Maybe that’s part of it. He has a catheter now and his output is diminishing. I am calm and loving and hysterical and shrieking inside. I want to let him go but I dread it and I can’t bear that he will be taken from our home in a body bag. And I’ll never see him again. The memories will have to be enough. But they’re never enough. The health care professionals in our life tell me they admire the way I’ve taken care of him. Dr. B. from Michigan signs his emails to me, with admiration. What the fuck? The world must be full of awful people who show up in their jobs. Ugh.
Dear Renee – thank you for sharing this sweet tribute to your Husband and your story. It will not help but the love you all had, is very rare and so beautiful❤️
Thank you, Eva.
Renee, this was painful to read and I am five years out. Your description of your love is what causes my heart to break. You write what is in my heart. My experience has been that I am supposed to move on, look for another to share my life, This is what other people do. I am however still grieving. I want my Artie and I want to live fully. The paradox of love.
Teri, at the very least, you know you’re not alone. I am married to Michael until my life ends and I suspect beyond that. I’m not interested in new companionship at all and push back hard when people tell me what they think I should be doing. Michael’s presence is powerful in me and I’m keeping it unless my mind fails. I’d rather be dead first. ❤️ You’re not alone.