Answer by Betsy Megas, Mechanical Engineer
What follows is more than I've ever written online about this. We wrote a blog at the time, but it mostly discussed the factual parts about the progression of his cancer, more than what we felt about it.
Days after his 30th birthday, my husband Scott was diagnosed with stage IV lung cancer. Though he'd gone to the doctor only for chest pains, and even the doctor at first suspected heartburn-or-something, the cancer had already spread to his brain and liver. No, he never smoked (neither of us can stand being around smoke), but that's the first question everyone asks. And the blood work had come up negative for cancer.
One Friday that July, he called me at work and stated that he was going to wait until I was home to tell me. One of the things that still startles me was that he spent that afternoon by himself with nobody else knowing what he had been told.
Getting the news that my apparently healthy partner of (then) 12 years was almost certainly going to die soon was like being punched in the gut. The doctor had refused to give a time estimate, but Scott, who was very fond of research and information, looked it up fairly early on. Others with stage IV lung cancer tended to last about a year. Nobody lasted five years.
We cried. We held each other a long time. We wished it weren't so. And then we started calling parents and friends. With each phone call, we shocked and saddened someone else who cared about us.
We both slept badly that first weekend. Somewhere between the bad news and the radiation treatments (accompanied by steroids) that happened early on, one of the doctors apologized for having forgotten to give him anything to help him sleep. No one ever suggested any such thing for me. (I recall reading an article some time later describing some study that found all sorts of stress reactions and stuff in spouses of those with cancer and thinking, "We needed a study for this? Duh.")
We decided to get married. Initially we had intended to wait until after we both finished engineering school, but I have never been too fond of weddings and it seemed to suit him well enough not to bother for the first 12 years we were together. It was no lack of commitment; we bought a house together and loved each other very much. Marrying him was part a practical decision -- so that I could speak for him if he couldn't, and so that inheritance sorts of things would be easier to sort out. But at this point, it was also to have some good news to tell people, to offset the bad news, as it were. We had about 60 guests in the back yard on a July day so hot that the weather in California made the news in Australia. (I would recommend a simple, informal wedding to anyone considering it. People can relax when they're not being so formal, and it costs far less and is easier to orchestrate. But I digress.)
About that time, we started a blog, to keep people informed without having to phone them all and tell the same sad story over and over. People do not know what to say at times like these, but the blog gave them a place to try to say it, anyway, and our community of friends gathered around us.
Cancer is a slow death. The things about cancer and the side effects of its treatments that are visible to the outside world are the things that are relatively minor, in the grand scheme: loss of hair due to radiation and chemo, weight gain (radiation+steroids) followed by weight loss (inability to keep down food during chemo). Scott also had, at various times, nausea, a change in the way everything tasted, hiccups that sometimes lasted for hours, acne (reaction to one of the drugs), neuropathy (pain and/or loss of sensation) in his feet, and a strong sensitivity to cold foods and drinks.
Still, he stuck it out through three years and three courses of chemo. He made up his mind fairly early on that he was not going to give up, and that he was not going to spend whatever time remained sulking. At one point, he felt well enough that we traveled to Italy for a couple of weeks. We told the guide that he had some trouble walking (but not that it was due to the neuropathy), and basically made it through the trip without incident. Mostly, we talked about his cancer when it came up and seemed the right thing to talk about, and talked about other things the rest of the time. He never enjoyed being the center of that sort of attention, or of having to rely on others for basic things.
In January of 2009, the company I worked for found itself in a slow spot and I was laid off. We had enough savings that this was no great hardship, and in retrospect, I am just as glad, because it gave me more time to spend with him in the last months of his life. In February of that year, he woke up early for a scheduled doctor's appointment. I was still in the bed and he was in the bathroom when I heard him shout for help. He was feeling woozy. I got there in time to catch him and bring him safely if inelegantly to the floor. He was having a seizure. I watched him sputter and shake for a few moments, then called 911. By the time the paramedics arrived, he was assuring them he was fine and trying, disoriented, to get to his feet. I found some clothes and followed the ambulance to the emergency room. Another seizure or two followed while he was there being examined, and he spent two days not particularly coherent before coming to, a bit peeved with us for supposing that he was close enough to the end that he would want to give up the fight.
He lasted until July of that year, in and out of the hospital and later home on hospice. From then on, he couldn't climb the stairs, so when he was home he slept in the living room, in a hospital bed that hospice rented. He was very tall, and finding one that fit him was a challenge they weren't really equipped for.
We had a wonderful team of family, both mine and his, helping to take care of both of us. I never studied nursing, but I learned a lot about how to be his nurse when we were at home, giving him his medications, draining the fluid from his lungs (I even asked the doctor to write in his chart that I had permission to do this instead of the nurses, when we were at the hospital), bathing him, getting him out of bed when he was able (hugging is a wonderful way to help lift someone).
It was not his mind that was failing, but his body. Scott loved computers in both his work (IT) and his play (video games, building a water-cooled computer for himself). A buddy brought the parts of a computer to the hospital one evening and we all built it together, right there in the hospital room. (The nurse that evening was easygoing. She smiled, shrugged, and let it go.) In the last week or two of his life, Scott helped me change the failing hard drive in an old laptop.
Only in the last 48 hours did Scott's spirit begin to fade. He slept, mostly, but he knew he was going. In one of his last lucid moments, he spoke candidly with me and a social worker who had come to visit. He did not feel he knew how to die, he said. I told him I didn't think he needed to know how, that it was probably a lot like being born. It just happens naturally. And I'm pretty sure I told him I loved him, at least one last time. I don't know that he ever came to grips with it, but I hope he never felt alone.
He died around midnight, a couple days after his 33rd birthday and three years, almost to the day, after his diagnosis. In all, we were together 15 years. I have very few regrets about the time I spent with Scott.
I don't think I will ever forget what he looked like when he died. His head leaned to one side, his neck lacking the strength to support it. He turned pale, then blue, and it was a quiet death. That was the moment he ceased to be the person I had known. Still, it's hard for me to recall that part, to bring it into my mind enough to write about it.
His parents and my parents were all there, along with a night nurse we thought we had called for some immediate need. Instead, she observed his pulse and pronounced him dead, after she was certain that it had stopped. Then, she advised us to summon someone from the mortuary to collect his body.
After that, I don't remember a lot of details, only that there were a lot. I spent the night upstairs for the first time in a long time, in a conspicuously empty bed. His parents stayed in town a few more days.
I was alone when I drove several towns over to collect his ashes from the mortuary. I won't say that was the moment it became real; it was real enough to watch him die. But there is something grotesquely final about waiting in a too-quiet, too-tastefully-decorated lobby and then being handed a startlingly heavy shoebox-sized parcel that contains what's left of who used to be your husband. And then there was the bizarre question of whether this box should ride home in the passenger seat or the trunk. (I chose the trunk, mainly so it wouldn't slide around.) I choked back tears during most of the drive home that day, and again when I handed over the box to his parents so that they could arrange to bury the remains in his hometown.
Most of the rest of the details were bureaucratic with the worst sort of emotional overtone. Notifying this and that institution, putting finances and accounts in my name, getting the recommended number of copies of the death certificate, and so on and on and on. Phoning such institutions still is not a talent of mine, and it only gets harder when the calls have to start with "your customer, who was my husband, has died..." followed by a concerned-but-detached "I'm sorry" from a now-alarmed phone answerer.
Becoming a widow did not motivate or energize my job hunt. My old boss called me back in soon after the company was resurrected under a new name, but even factoring out the lurch that the economy took, I had not made much progress.
Beyond that, it is hard not to feel perhaps even selfish. Of course I miss him for himself, his sense of humor, and all the things I fell in love with him for. But I seem somehow to feel his loss most keenly for all the things he did for me that I can't or don't like doing: creating and maintaining an amazing home network that's now gradually deteriorating in ways I don't understand; cooking every other time we ran out of leftovers; doing nearly all the shopping (I dislike shopping); tackling the monthly bills; snuggling when I was feeling down; pushing me to keep trying; and even just telling me, gently, when I was being foolish. (It's an ongoing quandary for me in social settings, too: explain to someone I just met that I'm a widow, which alarms and flusters people and is not a good introduction to the funny story I intend to tell; or go on referring to "my husband" in the past tense and just don't mention why?)
And it is hard to move on without feeling a bit selfish, too. Would I have gone on the trips I did if I'd had him around still? (Scott would have liked them once he got there, but I'm not sure he would ever have agreed to go on some of them.) Would I have learned as much about myself if I still had him sheltering me from the things I don't enjoy, and guiding me and rubbing off on me in as many ways as he did? I did not adjust quickly to having to maintain everything about my home, lifestyle, and job entirely by myself, and in some ways, I still have not. It's hardest, though, to figure out who I am without him and strive to be that person.
I certainly would not have come to know my current boyfriend as more than just a friend. That journey, too, has been amazing. It began with him listening a lot, as I sorted through the grief and all the old unresolved questions that came with it and, especially at first, often talking as much about Scott as about him or us. Scott never met the man I'm now seeing, but he knew of him, and once, while Scott was sick, we talked about whether, and even whom, I might love after he was gone. I don't think Scott liked hearing others' names attached to who I might love after he was gone, but ours was the sort of relationship in which we talked openly, however uncomfortable the subject. My current boyfriend was one of the names we discussed at the time. Now that I know him better, I think Scott would have approved.
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