My cell phone rang at work yesterday, and the caller ID showed Maddie and Riley's daycare. My heart and stomach sank. Daycare doesn't call to tell you the kids ate a good snack or had fun playing in the snow. Daycare calls to tell you someone has a fever or someone is barfing or someone broke an arm.
This time, daycare was calling to say that Riley had woken up during his nap with a bloody nose. The staff had it all under control, and Riley did not seemed disturbed. He just wanted to go back to sleep. I'm sure the bleeding was caused by the terribly dry, cold air of New England winters. We run a humidifier full-tilt at home, and there's one at daycare, too, but even that's not always enough for those with sensitive, delicate baby skin. I asked if I should come pick Riley up, but the consensus was that there was no need.
I breathed a sigh of relief that everything was basically OK, but I was afraid. I'm no stranger to bloody noses. John got them a lot towards the end of his illness. By the last few months of his life, the chemo had so damaged his system that he couldn't produce enough platelets for his blood to clot effectively. He'd just bleed and bleed and bleed. And bleed. It was scary, and gross, but mostly just scary. Every time he'd get a nosebleed, I'd think, "This is it. This is the end." Ultimately, a nosebleed wasn't the end of it all, but when you are watching a substance that should be inside your sick husband's body gush out of it, a substance that sustains his life, it's hard not to feel like a nosebleed could be a harbinger of death.
Riley's nose bled a bit more during the night. "Mama! I have boogers!" he cried out. I cleaned him up and that was that. His nose wasn't even really bleeding, just dripping a tiny bit, which stopped as I wiped it away. Thankfully, there was no river of blood that couldn't be stopped, even with ice packs and pressure and every single one of our spare towels. There was no need to throw together a bag of stuff to take to the ER (a task I can accomplish in about 2 minutes, maximum), no need to call 911 for an ambulance (something neither John nor I ever thought to do when he needed urgent care).
Riley went right back to sleep. Not me. All I could think about was the last few months of John's life and how awful they were. Things I remember from those months, in no order whatsoever:
- The nosebleeds, oh, the nosebleeds.
- The frustration of John not getting treatment due to low platelet counts.
- Test results bringing bad news.
- Fear. Constant, oppressive fear.
- John sleeping.
- John vomiting.
- Me never sleeping.
- The hospital.
- Hearing John's beloved oncologist say to us, "I don't like to talk about how much time is left, but at this point you need to recognize that it's going to be weeks, not months, not years."
- Taking a nap with John in his hospital bed
- Lugging my breast pump to the hospital every day and pumping in John's room while my in-laws watched.
- The absurdity of registering for hospice
- Liters of belly-bloating fluid being drained from John's distended abdomen.
- Calling my mom from the lobby of the hospital and saying, "Mom, I need you. Now."
- Lugging Riley around on my hip as I prepared a dose of morphine for John.
- In his last few days of life, John's obsession with taking a shower.
- Arguing with my in-laws, and, ultimately sending them home so that John and I could have a few last days together.
- The day before he died, wanting John to die because I didn't think either of us could take one more day of him "living" the way he was.
- John's confusion, empty look, and inability to keep his eyes open.
- Anger that my husband was dying.
- Resentment that my husband couldn't help me more.
- Shame that I was angry and resentful and that I didn't feel particularly warm or loving towards anyone.
No one tells you that as a caretaker, you'll experience all kinds of emotions that will make you utterly ashamed. I was so often angry with John, angry that he was leaving me and the kids, angry that he couldn't help me more, angry that I had to take care of our kids and him. HE WAS DYING, and yet I managed to direct my bitterness about the situation towards him. No one tells you that along with the sadness of grief comes a loathsome sense of relief that the hypervigilence of being responsible for someone with a terminal illness is gone. When John died, cancer suddenly vanished from my life. As sad as I was to see John die, I was in equal measure relieved that no one living under our roof was being eaten away from the inside, dying far too early, suffering far too much.
Relief. It's embarrassing to admit that part of me felt flooded with relief the night John died. In part, I was relieved for him. John was so tired of being sick. But I was also relieved for me. I was so sick of dealing with sickness, of scheduling our lives around cancer. The oppressive weight a terminal illness brings into a home is something I cannot adequately describe, and something I do not miss.
I miss John, of course, but I don't miss the John of the last four months of his life. I miss the man I married, and the core of him was slowly sucked away during his illness, leaving a shell that, in personality, was almost not recognizable to me by the end. John pulled away from me at the end, and pulled away even more from Maddie and Riley. He almost couldn't stand to be around them because he couldn't bear to see what he was leaving. And yet. And yet! The night before he died, he got out of bed and, with the help of me and my father-in-law, shakily made his way to the living room where he held a bottle for Madeleine and snuggled her while I read some bedtime stories. I have pictures of that night; those are the last pictures of John alive, holding his daughter, sitting in our glider, Riley and me next to him. The next day, John was dead.
I still, every day, feel two conflicting emotions in equal measure. I feel profound sadness that John is not here to experience our life, and I feel profound relief that his suffering came to an end. One of the many things that makes grief so unbearably hard is that it stirs up emotions that you don't expect, emotions that you never thought could be experienced simultaneously, emotions that no one wants to talk about, emotions that are uncomfortable to feel.
No calls from daycare today. Hopefully the nosebleeds are over. I think I've had all the nosebleeds I can take.