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.

Advertisements

I’m not ready to grieve again…

So it’s been over two years since I last blogged here. My world has been full of highs and lows and I just couldn’t bring myself to write about them because writing means that I have to feel those random thoughts in my head. The act of writing things down makes you face your feelings and I just couldn’t handle that. And a part of me felt like talking about what was going on would somehow jinx my husband’s treatment.

Yeah, when faced with a life or death situation, even the most reasonable, rational person becomes rather superstitious. Even now, I can’t help but feel that my husband’s prognosis is somehow my fault. It’s all a matter of timing, but the morning of his first seizure, we had a fight. Rationally I know it was bad timing, but the superstitious part of me feels as though life deliberately dealt me a blow to remind me that everything a person has can be taken away just as easily as they can be given. Once again, I got caught off guard. Ever since his first seizure, I’ve believed on some level that my lack of positive thinking would cause the failures in his treatment. I’ve spent so much energy pushing away negative thoughts the moment I have them, feeling personally responsible for Crow’s health. It was exhausting and ultimately fruitless.

On June 8th, we were reminded that glioblastoma always wins. Crow’s MRI revealed significant growth after two years of every standard treatment for the disease that is used by the medical community, plus my last ditch effort to try the experimental immunotherapy medication — Pembro — for which we drove every week to OSU’s James Cancer Center because it was not a therapy available at the Cleveland Clinic.

Crow’s health had been deteriorating significantly in the week before his MRI. He was not longer getting up to get himself breakfast or lunch while I was gone at work. He was barely making it to the bathroom to pee. He was significantly losing his balance. He struggled more than ever to communicate. So I can’t say I was surprised by the results. But I still felt myself blindsided. No one wants the truth confirmed, even when it’s staring you in the face.

We decided to give in on this fruitless battle and switch to in-home hospice. And that is where we currently stand. This week marks a month. The prognosis the OSU doctor gave us was two weeks to a month. And here we are.

Crow can no longer balance enough to walk. He can still lift himself and move from the wheelchair to the couch, another chair, or the toilet. He can slowly step himself down the stairs in our garage to get into our car, as long as he has something to hold onto. He doesn’t like riding in the car anymore, though, so taking him out always requires an Ativan and I have to endure a lot of mournful griping. Yeah, the man who once could not sit still cannot stand to leave the house.

I’m taking care of him 100%. I work for the most understanding company in the world (I started working there in March 2016) and they’ve given me a lot of leniency, which has included a work from home arrangement and the understanding that my hours on may be intermittent. They haven’t demanded much from me and I know I’m so fortunate to work for such an amazing group of people. It encourages me to continue working for them when all is said and done because they took such good care of me in my time of need. I know a lot of people are not as fortunate as I am in this and I’m so thankful to have landed in the right place at the right time.

As long as he is still alive, I don’t feel moved to tears. There’s some weird, optimistic part inside of all of us that hangs onto every thread of hope, even when you know that hope is lost, simply because a person continues to breathe and talk. Even though that person is a shadow of the person he once was. And you know he’s not happy. And he never smiles anymore. And his response to every question is, “I guess so.”

There have been moments in which we’ve had a slight heart-to-heart and I know that he’s still aware of a lot. The other day I told him that this was not supposed to turn out this way, that we were supposed to grow old together sitting in our rockers in front of the window of our mater bedroom, like we planned. He said, “It’s not fair.”

And it’s not. And I’m sorry I forgot that happiness isn’t forever; it’s just a bit of light that shines occasionally upon us, but it’s fleeting and it’s gone before we remember that we should have been appreciating every second of it.

There a moments, though, when the grief I’m running from hits me in the face. It’s in very small things. Like this morning when I reached for a can of pop in our closet and I realized that the last person to stock us up on the dwindling stock of Zevia was Crow, back when he was still driving in late April, early May. Just stupid little milestones knock me off balance. It’s not always in the obvious things like scrolling through the Facebook memories function.

I know that when he’s gone, I will hit these things all the time. In everything. This entire house. I won’t be able to look in my closet at his clothes or his books in our library or our happy faces in our wedding photos. It’s terrible knowing what grief is like, having already gone through it, and it’s what I spent the last two years running from. It kept me from waiting until the very last minute to have Power of Attorney papers drawn up and signed. It kept me from going with Crow to look at cemeteries (he eventually did that with his mom). It is keeping me from calling perspective funeral homes, as I should be doing, because no matter what I logically know, I still ridiculously feel that preparing for these things hastens their approach.

I’m not ready for any of this. But how does one prepare to lose someone? I’ve been through both scenarios now and I have to say that though a cancer diagnosis gives you more time to get things in order, or do the things you wanted to do (we went to Yellowstone last summer for a week). it’s the worst way to watch someone you really love suffer. The ups and downs of all the barbaric treatments. Cancer really makes you realize how powerless you are.