After Michael’s death, a friend commented that he had basically taught a Master Class in dying. Michael would have appreciated that. He prided himself on doing important things well. He graduated from college with three Bachelor’s degrees. He signed up for a parenting class when our son hit his Terrible Threes and, unlike me, he did all of the homework. I watched him try a bunch of cases and I can say, with no empirical proof whatsoever, that he was the best fucking lawyer the criminally accused population of Boone County, Missouri ever had.
So when he got his terminal diagnosis he approached the fact of his dying with the same intelligence and methodical force of will he used for living.
Of course, he had a template to work from. When we were all 31, Michael and I had been dating for a little over a year. The only source of tension in our relationship was that I still expected to spend a lot of quality lady time with my best buddy, Jen. Michael and Jen were so alike: both charismatic individuals whose personalities filled the room, often relegating me to the role of following them around reminding them to use their inside voices. They loved each other, but clashed sometimes, as strong personalities sometimes do.
Then Jen got diagnosed with Stage IV cancer, and Michael had a front row seat as Jen, our friends, and I tried to navigate her illness and eventual death. Of course, that is not how we were viewing it at the time. In early 2004 we were just a bunch of over-educated kids in our early thirties trying to figure out how to eke out a meaningful existence and maybe steal the neighbor’s cable. None of us were grounded, mature, self-aware individuals who were prepared to deal with mortality. We were the sort of people who kept a mostly empty two-liter bottle of Diet Dr. Pepper on the fire escape for people to use as an ashtray during parties.
When Jen got her diagnosis she fought. Although she was young and otherwise healthy, her survival odds were terrible: 1-3%. But, she said, she’d been in the top percentile of things for most of her life, so why would this be any different? She also kept living her life as fully and as much as she could. I don’t think this was a conscious choice, more that she just didn’t consider any other option.
Jen lived for 11 months from her diagnosis to her death, and throughout that whole time she lived on her own terms. She stayed in her apartment. We went out. We celebrated her birthday at a cabin in the woods in rural Maryland. She had a New Year’s Eve party. We took a girls trip to Miami and Key West. The last week of her life was spent at her family’s vacation home, called the White Elephant, in Guntersville, Alabama, because she wanted to spend Easter weekend there with her family and friends.
She lived well and fought hard. But her final days and her actual death were not what they should have been.
Let me first say that I don’t mean to blame ANYONE for this turn of events. Jen was stubborn and headstrong, a relentless optimist and a fighter. Despite her truly shitty odds she refused to spend a lot of time thinking about or planning for the event of her death. Which makes sense because she was only 31 and in any sane universe wouldn’t have had to deal with something like this. And it isn’t like I was any help. I believed that my job as her friend was to help distract her from the notion of death and to keep her spirits up—it was us against Cancer. Any talk about dying meant being on Team Cancer and FUCK CANCER, RIGHT?!
Of course, at some point she knew what was up. There were a few times when she tried to talk to me about death and being scared. Once, she asked me what items of hers I’d like to have after she died, and I made a joke. I laughed and said I only wanted a stupid stuffed Cavalier doll (our University of Virginia mascot, look it up) that her brother had won in a claw-game at a Cracker Barrel and that we had been convinced was watching us one night after we may or may not have smoked some weed. (I still have that fucking Cavalier. He’s in a lockbox with my birth certificate.) Anyway, the point is, the few times when she brought up death, I refused to go there with her. And she dropped it.
At the end, Jen was still insisting that she would return to Washington DC after the Easter at the White Elephant, even though she was skeletal, could neither eat nor drink, couldn’t walk without assistance, and was clearly dying. I was delusionally convinced that I would fly back there with her. Her mom was the sane one who realized that Jen couldn’t do this. She was the one who finally thought to call Hospice. They were set to come to Jen’s childhood home in Tennessee, which is where we were going next.
Jen never made it – she died in the car as her brother and I were driving her from Guntersville to Tennessee. We managed to pull into the driveway, and her mom, dad, and sister-in-law were able to come be with her, all of us crowded in the car as she took her last breaths.
Jen’s death – not just the fact of her death but the actual circumstances of her death, were unbelievably traumatic for me. I know how self-centered this sounds. No, I am not complaining that Jen’s death made *me* feel bad. I am complaining that her death did not occur the way it should have. She should not have spent her final night on this earth on a recliner with me, watching The Notebook on Lifetime TV. She was in obvious pain but she couldn’t swallow the Vicodin pills we had, no matter how small I broke them. Her mouth was too dry. And I had to carry her to the bathroom. (She was all embarrassed. I was all, “Woman, please, like this is the first time I’ve ever carried you to the bathroom”).
I am glad that she got to spend her final week at the White Elephant the way she wanted to. And I’m not sorry she spent her last night with me. It’s good that her family got to be there with her at the end. But she deserved better than dying in the driveway an hour after we’d stopped at a Carl’s Jr. drive-thru.
It should have been more peaceful, more comfortable, more dignified. Better. We should have called Hospice back in DC. She should have been receiving palliative care for months after the immunotherapy was stopped. She could have had a hospital bed, therapeutic massage, IV fluids, help bathing, good drugs. (Now I know they even have special mouth-wetting stuff, because cancer patients’ mouths dry out.)
Michael lived with my pain about this. We talked about it a lot. Me dealing with Jen dying was a formative aspect of our relationship. Just when we were at the putting-together-Ikea-furniture stage of things, I was drafting Jen’s obituary. So we had had plenty of opportunity to hash out our feelings and perspectives about death. In particular, we spent many nights discussing how we would deal with a terminal diagnosis, ours or someone else’s. I was adamant that I would address death honestly and directly the next time someone I knew got sick. No pussyfooting around.
This was all fine as far as hypothetical conversation topics go. Imagine my goddamn shock when the next person in my life to receive a goddamn terminal cancer diagnosis was none other than Michael himself. I would take a moment here to rail against The Universe and a god who I don’t believe in, but that is for another post (or three).
Anyway, Michael wanted to emulate a lot of Jen’s journey toward death, but also to avoid the unnecessary pain and chaos she had at the end. To begin, it was important to him that he have the most accurate, realistic information about his prognosis so that he could get his head around his timeline. We consulted a top specialist, gave him a piece of paper and a pen and asked him to write down a range of numbers. He wrote “6 Months (without chemo), 12 Months (with standard chemo), 18 Months (with aggressive chemo)”. I still have that piece of paper (typing that sentence causes me to reflect on WHY DO I STILL HAVE THAT FUCKING PIECE OF PAPER). Michael took the aggressive chemo route and died almost exactly 18 months later.
Michael’s plan, much like Jen’s, was to live as fully and as much as possible. So we did everything as normal, and then some. He took our WWII-buff son to see Pearl Harbor. We karaoke-ed the night away on his 44th birthday. He ran a 5-K (which I can’t do even healthy and not on chemo). We rode bikes. We went camping and on float trips. He ushered at our church on Christmas Eve and gave a presentation at our daughter’s school about New Zealand.
There was also a lot of planning for after he was gone. We consulted a lawyer and a financial advisor. We had nice family photos taken. He left detailed instructions about his memorial service and where he wanted his ashes scattered. He recorded hours of videos with a friend of ours, which I still can’t bring myself to watch.
Our friends and community stepped up amazingly. They made t-shirts. They organized outings and parties. They gave us food and money (I never wrote thank-you notes, so let this be it: THANKS SO MUCH YOU GUYS, I LOVE YOU). One of our favorite restaurants named a special after him. Another named a cocktail. When his hair started falling out he decided to shave his head, but he wasn’t just going to that. He decided to raise money for St. Baldrick’s childhood cancer research. He and several friends got their heads shaved in public in front of a cheering crowd. It was a really fun day and he looked good bald.
Then there was planning the actual death part.
When the living part was over, Michael wanted to, in his words, “meet death bravely.” This meant that, when the fight was lost, he would walk calmly into the abyss, like Obi Wan Kenobi when Darth Vader tries to strike him down in the first Star Wars movie. This didn’t mean he wasn’t scared or sad about dying. We both cried. A lot. Because dying when your kids are still in elementary school is fucking bullshit and calls for sadness. But the actual death part Michael did his absolute best to be calm and strong for.
So the day we learned that the first-line chemo had failed, Michael was immediately prepared to reject the second-line chemo (which he knew was garbage). He did it decisively and without apparent emotion. The Doctor nodded a brisk, appreciative man-nod and replied, “good choice – it’s what I’d do.” All this happened while I sat there fumbling for a Clonezepam, blowing my nose into the copy of Real Simple magazine that I had been leafing through and asking no one in particular if we could just have a few minutes to make sure that the most recent scan wasn’t some sort of mistake. “Cheer up,” Michael told me, squeezing my hand when we were finally alone again. “At least now we know.”
In our meetings with the Palliative Care Coordinator, a lovely older lady named Pam with spiky frosted hair and rings on every finger, Michael pressed for details on exactly what would happen in the last few weeks – dehydration, frailty, organ failure. He took notes. He was the one who told me it was time for Hospice, even though I was still insisting that his problems could be overcome with more medication.
Hospice was 18 days. During that time Michael had a visit from his best friend from childhood. His parents and sister were here. He watched Australia spank South Africa in rugby. He watched our daughter play in her first soccer game. He helped our son practice his violin. We finished watching a series on HBO and started another – we got two shows in. We had his favorite Chinese food for dinner, which he was unable to eat. He looked at photo albums. Our friends all came to visit one last time (and sing Christmas carols — long story).
On the last morning of his life, Michael got out of bed and with help from me and the Hospice nurse he had a shower. He shaved, put on deodorant and brushed his teeth. Then he put on one of his favorite T-shirts. He went back to bed and we sat there quietly. Our minister came and sat with us for a while, then blessed him on his journey away from us and into the unknown. We waited for the Hospice Doctor to come with the sedatives. He was late. Michael was getting impatient.
Michael asked if he could go to the front room, so I helped him to the wheelchair and brought him to where he could sit looking out at the sun shining on the trees. We listened to his beloved Beethoven and then some folk music. That was where we were when the Hospice doctor finally arrived. We moved Michael back into the family room, where the hospital bed was set up, so the Doctor could place him under a heavy sedation. According to the Doctor, Michael would enter a deep sleep, from which he might periodically awaken. Although it was impossible to say, he could live a few hours or a few days.
By then it was evening. A friend brought our kids home from soccer practice. I had just given them a bath and got them into their pajamas when the Hospice nurse came upstairs and said that Michael was awake and asking for the children to be brought to him right away. I brought them down. He was clearly exhausted, but he asked them how soccer was. He gave them each a hug and a kiss. He told them he loved them and to have a good night’s sleep.
I got the kids settled down in our bed and then came down to sit with Michael. He was drifting in and out of wakefulness. I held his hand. I was exhausted. After a few hours he woke up a little and I told him I was thinking about going upstairs to get some sleep. “You go up and be with those children,” he said, “I love you.”
Around 3:00 that night I was in bed with both sleeping kids when I heard the Hospice nurse’s footsteps on the stairs. I jumped up before she even got to me and went down to meet her. “I’m sorry,” she said, “It’s just happening really fast.”
I ran into the family room and stood over Michael in his hospital bed. it was clear that he was in his last moments. It was just like Jen had been – some final gasping breaths, eyes looking someplace that no one else can see. I climbed on top of him just as the life ebbed out and it was obvious and unmistakable. He was gone.
In the end, Michael died peacefully in bed, at home, with all the best medicine and nursing care at his disposal. Yes, he would have preferred to die a few days earlier, before the pain and debilitation got really bad (and he should have been able to do so), but all things considered he had a good, brave, dignified death. I am proud of him. I hope he found some comfort in the way he met his end. It gives me some small comfort, and it occurs to me now writing this that maybe part of Michael’s good death was actually for my benefit, too.
I hope that I have the same care and strength when death comes for me. I don’t know that any of us really knows how we will handle it until it happens to us.
But at least now I have had two very good teachers.
