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.