Slide Away

I read a science fiction book a long time ago called The Harvest by Robert Charles Wilson. The story was about an advanced alien race who came to Earth offering humanity the chance to embark on a voyage of discovery throughout the universe. Each human is given the individual choice to join the race, a process which involves evolving into something else — something beyond the our limited bodies and much more mentally advanced. The story focuses around a man who said no to the choice and his observations of the disappearing world, including watching his own daughter as she slowly lets go of her humanity. The people who chose to go with the alien race stop engaging with the world over time and eventually just became shells of themselves until they were eventually just released of their bodies.

Crow’s decline from cancer reminded me of this book because that’s what it felt like as I watched him slowly withdraw from the world. Before he even went on hospice, it was a struggle to get him to leave the house. He would want to back out of commitments we made and stay home instead. In May, we went to Chicago to see U2 after I had to persuade go (contrast that with the previous year in which he begged me to take him with me to a Pittsburgh show only I had tickets for). He had fun while we were there, but he could no longer tolerate the noise of a concert and had to leave mid-show during the first of two concerts, even though he was wearing his ear plugs (which dampen concert noise – I use them too). We managed to get out the next day and walk around Chicago, but Crow bowed out of the second show, staying instead at our Air BnB where he, of course, spent his time alone sleeping. The next morning at breakfast, he had to leave the restaurant because even the ambient chatter of the other diners was too much for him. That was our last big trip together.

A few weeks later, I was doing yard work, with which he’d planned to me help me that day. I spent most of the day working alone. Crow tried twice to get up and do something, even something small, but he kept going back in the house. “I’m just too tired,” he’d said. “Man, I just can’t get over how tired I am.”

Sleep became the only thing he wanted to do. When I wasn’t around prodding him — if I went out to something he’d bowed out on — he’d spend his time sleeping. As his periods of sleeping extended, he no longer fought them or complained that he wanted to get up and do something. He just stopped caring about participating in the outside world, it seemed.

I didn’t realize right away how bad it was getting until the week before his last checkup… It suddenly occurred to me as I watched his body shrink that he was no longer getting up in the middle of the day to make himself lunch. I rallied neighbors and friends to drop in on him and bring him lunch. The reports I got back from them indicated that he seemed a bit unstable on his feet and confused. I just hadn’t realized how bad it had gotten because I saw him every day; the changes happen slowly over time and I’d just started to accept each of them as normal.

I guess a part of me kept hoping that somehow he’d get magically cured, even as I became more aware of his decline. His death was something I’d refused to face from the beginning. I didn’t want to confront the widow in me yet again. I was the person who was not being realistic… who kept avoiding talk of death and who refused to look at cemetery plots with him until he came to me on his own with a cemetery already chosen. He knew his death was coming while I just kept thinking I could make it go away by ignoring it.

I never could understand that moment of acceptance. I always pictured myself exiting life kicking and screaming and hanging to life with every last shred of my being. But cancer doesn’t work like that. Cancer takes bits and pieces of you away with each passing day until you have very little left of yourself to hold onto. And, as I observed, the cancer patient reaches a point where they just accept what is happening… and maybe, I don’t know, maybe they see a greater horizon that is out of sight from the living… a place where the pain and suffering has passed. Or maybe they don’t see anything and they just don’t care.

Hospice calls the last stage of care “transitional care.” This term seems to support the idea that we don’t die, we evolve into something else, like the characters in Wilson’s book.

The most isolating thing about a dying person for a caretaker is the slow disconnection with the outside world… I woke up every day, got him cleaned and breakfasted, and then I went straight to working remotely at my job. I felt like I always had one foot in the real world and the other foot in this world of terminal illness. I felt split in two. I struggled — still struggle — to understand how he could just stop being involved.

Food was the last thing Crow let go… Up until the weekend he began “transitioning,” he would make a noise of delight when I placed something he liked in front of him — fruit, chocolate drinks, ice cream. I loved those moments because I felt like we were still connecting and that he was still here in this world. When he stopped eating the food I gave him, it was another sad sign of his slipping away.

I kind of knew he was done when we ice cream stopped making him excited. His disease made it impossible for him to communicate and I often wondered what was going on in his head. Were there things he wished he could tell me when all he could say was reduced to: oh, wow, no, ouch, and yes?

Every step of his disconnect hurt. This man was previously so engaged in the world. When he stopped caring about the simple things, I was just crushed. I couldn’t handle it, like the character in the The Harvest. I don’t know if I’m jealous that he understood and accepted his death or if I’m just angry that he didn’t — couldn’t — fight harder. I feel like we lived in two different worlds in those last months — mine was the world of details, of weeding gardens and mowing lawns and cleaning the house and keeping a job so that I could support us both. His world was of not caring much about any of those details. What did he dream about in his sleep? Did he dream at all? Did he still even care that I was there? Did he care that he was leaving me, or was he ready to go even if going meant he went into oblivion?

I’ll never know. Two people who talked about everything in the world went to becoming almost strangers in the shadow of the cancer cells multiplying themselves in his brain.

How are you doing?

People keep asking me how I’m doing. It’s a very confusing question. On the outside, I look and feel okay. I’m getting by. But on the inside, I’m feeling a dull numbness that is indescribable.

I’m not devastated, though; it’s not at all what it felt like when I lost my first husband, Mike, suddenly to what we learned later was cardiomyopathy. The sad fact about cancer — especially one as aggressive as glioblastoma — is that it gets you used to death. From the moment you or a loved one are diagnosed, you and he are led along on this bread crumb trail of both hope and doom alternatively… There are lots of moments of relief and lots of moments of grief, so that when the end finally comes, you just don’t feel devastated because you already expected it.

In those last 24 hours of Crow’s life, he was suffering so much and looked so outwardly uncomfortable, that the moment he stopped breathing, the emotion I felt was, surprising myself, relief. Which, coming from an agnostic, is really saying something because I don’t really think there is any life beyond this physical one. So feeling relief at the end of Crow’s life made me feel guilty because I was relieved that he had died. But I was relieved that he was no longer suffering because the life he had in those last 24 hours was not life at all. And I was glad it was over. For the both of us.

Over a week later, I’m still relieved. If I need any reminder of why it’s okay to feel relief, I look at a cell phone picture I snapped of him the day before he died. The shadow of the man I loved stares on, mouth slightly agape and dull eyes devoid of emotion, with a washcloth over his head because I was trying to help relieve his end stage fever. The man I mourn is the one with boundless energy who loved to travel and was passionate about working with his hands to create things. He is not the man in the picture.

I had several other points in Crow’s tragic journey with glioblastoma that led to tears and depression like what I experienced in the days after Mike died. I remember each and every one of them because they stand out in my mind as major turning points in my life with Crow.

The first moment was when the CT scan technician at St. Luke’s hospital in Toledo told me that they had found a “lesion” on Crow’s brain following his initial seizure. I knew right then and there that it was cancer. As they gave him some extensive brain pattern testing behind a closed door, I cried a fountain of tears in the hallway. I swore I would find a way to take him to Alaska to see the Northern Lights. I hoped to hell that I was jumping to conclusions, as I often do. That this was a horrible nightmare.

The next moment was when Crow received his diagnosis, two months later, at the Cleveland Clinic, post surgery. I fell to pieces in the longest day of my life in which doctor after doctor came in to overwhelm us with information about how to combat glioblastoma. Our “new normal.” it never felt normal, even when it became a routine.

After that, it was the first brain scan he had after radiation and the first round of chemo (Temodar) in June 2016 when we learned that the tumor had apparently regrown. I was so upset that time that we had to spend an hour at a gas station by I-90 because I was too sick to my stomach to drive. I’d cried so hard that I gave myself a migraine and a panic attack. I couldn’t go to work the next day. I admitted to my then new employer that my husband glioblastoma because instead of working from home that day, I’d spent the rest of the day depressed on the couch.

There were lots of meetings with Crow’s oncologist. Lots of discussions about courses of action. We made decisions, we chose treatment plans. We kept hoping we’d get ahead of this damned thing, at least to buy us some more time together. We even hoped for a few years of remission. But it seemed like every time that Crow tried a new treatment, it worked for one six-week period, only to taunt us with regrowth at the next scan. We lived between MRIs. Our entire happiness in life relied on them. And in between MRIs, we both tried to pretend life was normal, even as certain cognitive skills were slipping away from Crow. We still rode our bikes, we still went on trips; and then we went to MRIs, the result of which either made us feel momentary relief or utter panic. This was how we lived all of 2016 and 2017.

In December 2017, Crow’s oncologist told him that the tumor had appeared to have grown yet again, but, that he’d run through all the standard courses of treatment, and none of them had worked. His doctor suggested he go on hospice at that point…. or try something completely different because, basically, he had nothing left to lose. We were upset that time too, but we consulted other doctors at University Hospital and Ohio State University.

That’s what led us to a second round of radiation and immunotherapy at OSU. His tumor had reset after radiation so we again had promise of a new start. However, it turned out to not be the case. Maybe it was a combination of his long-time Avastin treatment no longer being viable due to some bladder issues he was having, or maybe it’s just that immunotherapy at this stage is just not viable against glioblastoma, but he slowly started declining throughout the early spring. By the time he was ready for his June MRI and chemo appointment, I already knew the result… but that didn’t stop the fountain of tears that spilled from my eyes when the OSU oncologist told us that the tumor had grown significantly and that he, in good conscience, could no longer give Crow treatment. He recommended hospice. And so it went.

So that was the Last Big Cry. The night after that diagnosis and the following morning were just as bad as the day that Crow diagnosed for me. To top it off, on the return to Akron from Columbus, in those few short hours of driving, Crow suddenly couldn’t walk anymore. The whole world had shifted so quickly. A friend was building a wheelchair ramp in our house and I was wheeling Crow to the bathroom every few hours. Then hospice came in and took over and my heart was already broken. Because I knew then that now we were just trying to make Crow comfortable in his final days… and that the final days were coming and I couldn’t think them away anymore.

I spent 10 weeks taking care of Crow every day. I don’t regret one single moment of it. But it wasn’t easy. I had work pressure. Internal pressure. And an undying feeling of restlessness. I couldn’t go anywhere without finding someone to watch Crow. So I learned to just appreciate each hour in my life — in his life — as it happened. I no longer thought about what I might do tomorrow or next week, only on what I could and would do today.

Over this last week, I hate to admit that I feel like someone who just got out of jail. I’m humbled by the fact that I can just go anywhere I want, when I want. I’m no longer bound by a rigid schedule of getting Crow cleaned up in the morning. I don’t have to find someone to watch him so that I can go on a bike ride or shopping. So some of that relief I feel is the fact that I now can go on with my life and do the things I want to do unhindered. It feels crass to say that. I loved Crow and I would not in any way change a single thing that I did for him. I’m so glad he got to die in the home that he loved and worked so hard to make beautiful and ours. I’m glad I was there for him and able to provide him love and comfort throughout what could have only have been a very difficult transition for him as well (he couldn’t communicate more than a few words so I really will never know exactly what his thoughts were). I think the reason he outlived the OSU oncologist’s original prognosis of his remaining time — 2 weeks to a month — was because he was here in a quiet environment surrounded by people (me, his mom for days at a time) who loved and cared about him rather than nurses who did not know him at all. This was how he wanted it. Most of those 10 weeks had moments of beauty that I will remember for the rest of my life. So I don’t regret the decision to keep him at home at all. I’d want him to do the same for me.

I guess I went through the first stages of grief throughout the entire course of his illness and especially in those last 10 weeks. I’m not devastated at the moment, but I am sad. Just because you don’t see tears, and you see me outside partaking in my usual activities, it does not mean I’m not mourning. Right now, it just feels good to go back to my regular routines of going to work every day, fitting in bike rides, planning trips. So I’m focused on that.

I admit that every night I fallen asleep hugging a teddy bear, which we named Allen, that he gave me for Christmas a few years ago. And looking at Crow’s things in the house tugs at my heart so I avoid them.

Will I cry again? Most likely. Hopefully. Crow deserves more tears for the rest of a life he never got to live.

Am I having an existential crisis? Totally. Losing one husband was a tragedy; losing a second while still pretty young is definitely a full-blown crisis. One from which my heart and soul will probably never fully recover.

But am I okay? Yeah, I’m okay.

Will I continue to be okay? Probably.