My Grief Observed - 7: I don't feel so thankful and blessed
Here we are now on Thanksgiving Day. And I’m not sure that I’m filled with much thankfulness right now. How could I feel gratitude about this life where she would be taken from me so young? I’m not the right person to face this kind of life. This kind of thing isn’t supposed to happen to me.
I have led a privileged life. I won’t go into all of the reasons why I am privileged right this second – but yes I am aware of this reality, and have always been thankful for the blessings in my life. Naming what I have been thankful for has been a good way in the past for me to make sure I’m not taking life, and my privileges, for granted. That being said, maybe I haven’t always taken proper stock of what parts of my life truly deserve appreciation?
Five years ago, (pretty close to exactly five years ago today) Sara got a call from her radiation oncologist letting her know that he reviewed her latest CT scans done a few weeks after completing her neoadjuvant combination of radiation and chemotherapy. He said that her tumor’s response to the treatment so far was excellent, and that most likely by the time of surgery in December there would either be no tumor left at all, or a small dead husk of what the tumor had been. The feeling after receiving that call – is hard to explain. But as I don’t think I ever tried to put it to words before, I’ll make an attempt now.
That feeling was…like a deeply apprehensive, yet ecstatic sense of relief, we could breathe a little easier, given a respite from carrying a heavy load – and a release of the intense built up tension that had been winding us up over the previous months after Sara’s diagnosis. We of course knew fully well that the news of her cancer’s response didn’t guarantee anything. But it was about as good of news as we could possibly hope for. The treatment was working as well as it could. And we felt due for some good news. We were thirsty, ravenous for some good news.
That Thanksgiving Day in 2016 may be the last that I have felt any true thankfulness. Well at least in a sense of truly feeling positive about everything that we had going on in life. And that feeling of appreciation for life, was over in a blink. Almost literally.
On November 27th, 2016 – my dad died after many years of challenges with Parkinson’s Disease. So much for getting a moment to bask in appreciation of life. From there we only had a few weeks before Sara was scheduled to have a low anterior resection surgery, the primary curative measure taken for patients with rectal cancer. It was illogical to think we could adjust the timing of that. Which meant that my grief over my dad’s passing would have to be rushed, then put on hold, potentially repressed.
At my dad’s funeral. A not fun day, but was a good moment of togetherness with family.
I didn’t know what it would look like. But now, five years later, looking back maybe it was a blessing that we had that reprieve in the stress of Sara’s situation right at the same time. It gave me the emotional freedom to grieve as fully as I could for my dad, at least for those few weeks before her surgery and I had to turn my attention. I suppose maybe I should be thankful for that timing. Honestly, I haven’t ever taken the time to think about it this way. In the end I probably had to repress some of my grief for my dad. Life just got wound up quickly again and I was forced to keep going.
Life, it goes on
From that point until Fall of 2017, we clung to every positive moment we could. And over time we had versions of that apprehensive thankfulness each day – but the tension that was felt back in the Fall of 2016 kept coming back to us - building up inside. The previous scan that was done after her resection, which showed no new growths, showing a successful surgical removal of cancer – brought another version of that relief. Particularly that everything Sara did as part of her initial treatment went about as well as it could.
But again, by Fall of 2017 it had been a long time since that scan. She had adjuvant chemotherapy, an ileostomy reversal, and a few months of recovery time. In our minds, that was ample time for her to start feeling as normal as she could, but also ample time for her cancer to have potentially come back and colonized throughout her body.
Appreciation of cancer getting its ass kicked
We had just discussed earlier that day that she didn’t even want to hear what the CT scan results were. She was too nervous to hear about it.
I take it back though - at that point in 2017 when Sara got her first surveillance CT scan and it came back clear – and when she got her CEA tested and it stated that the CEA in her blood was below detectable levels – that gave us another great moment, an almost euphoric level of relief. I mean that was the moment that it felt like Sara had truly beaten cancer. This nightmare was over. This terrible experience would be put behind us, we can get on with our lives.
Thinking back on it now – because here I am now years later – I might have never felt so thankful in my entire life.
I was so appreciative of living this life, its little moments, its big moments. We no longer took for granted what we had. We had a beautiful family - an amazing mutually supportive marriage – wonderful, kind and creative kids, a roof over our heads, and interesting jobs with leaders and clients that were supportive of the struggle we had just faced. I think euphoric is probably the best way to describe how we felt, all the way through the end of that year. Yeah we were thankful.
Was that the end of thankfulness? As we moved into 2018, maybe we started taking things for granted again. We’d planned to celebrate our euphoria with a trip to Disney World in January 2018. But those hopes were dashed when we found an extreme level of mold in our basement. Our house that wasn’t even five years old had aspects of its construction that were just fostering and encouraging mold growth as condensation buildup behind our insulation in the basement. Ugh. Well, we still appreciated and loved each other even if we didn’t get to go to Disney.
Then we got greedy and thought we could try and build a new home and make a big investment on a larger house with plenty of room for our kids as they were to grow up. And in the back of our minds, we kept thinking about how we had always wanted to raise four kids. Maybe we can start looking into adoption? The new house seemed like the right next step – get there, then let’s wait a little while and make sure Sara keeps getting cancer free scans – then let’s start talking about the adoption process officially.
But it just wasn’t working. No one wanted to buy our house. Was this not meant to be? We kept forcing it. This was our plan damnit – God why isn’t our plan working!?
CEA wasn’t always a good indicator of active disease for Sara, as shown here where she even had known tumors in liver and lungs
All the while, Sara had multiple scans, and multiple CEA tests. Everything kept coming back clear and normal. Her CEA had gone up slightly in her February and May 2018 blood tests. Looking back, I wish we would have insisted on another CT scan right then in May. I know insurance would have refused though, as the CEA value was still well below the normal range cutoff.
Still – f&*# - here I am finding another what if that will probably torment my life for years to come. Getting that tumor removed from the liver three or more months earlier could have made all the difference for her.
Because then it came back, and she fought it for years. And the stupid fucking self-destructing cancer got relentless. And our moments of thanks dwindled. They didn’t disappear completely, as we always truly had things to be thankful for. Even in our darkest times, we’ve always remained thankful for each other, for our family, for our families, and so many other things.
I’ve been debating about continuing my entries to this blog.
Grief for me so far has been different, but also the very much the same as most everyone else. Meaning, the timing and exact ways that it hits me, what triggers it, all of that – are of course unique to me. But the broad strokes of my grieving are very similar to others. In fact, although it is important that we all allow each other to grieve in our own pace and face it in our own ways – the more I read about others’ grief (especially other widows/widowers) my grieving of the loss of Sara is nothing special really. Or at least there are a great deal of consistencies for all of us.
I don’t think that’s really a bad thing though. There is a weird camaraderie in sharing similar pains and experiences. And the consistencies can help give me some sort of guidance for what this whole grief experience looks like for other widows and widowers.
And all that isn’t to say that my love for Sara wasn’t special, or that I don’t think our love for each other was very meaningful to me. In fact, as much as I have honestly always known how much we loved each other (despite how one post made it seem), I’m realizing now just how important our love was to me – how fully central to my life force our relationship was.
Anyway, my point is just to say that I don’t need to think of my account of this challenging time in my life as this particularly exceptional point of view. I might have been pressuring myself to have this unique or profoundly insightful perspective – maybe as a way of convincing myself that I should keep writing this blog.
Honestly, writing has been extremely helpful for me. For lots of reasons. For one, it helps me think through what I’m going through, and put words to the experience. This is also helpful because I can later go back and read prior journals and say “I have moved past that behavior” or “things have improved a little since then.”
But what is the point of my sharing on this blog? If this writing truly is just for me – why do it in such a public way? And if my perspective is not actually that unique – why even bother sharing it publicly?
I have been reminded though from some side conversations with readers of the blog – yeah there is the benefit of the journaling for myself, and there is the benefit of other grievers now or in the future reading about my perspective. And for some it is also a nice way to just stay up to date on how we are doing, and it provides additional opportunities for friends and family to offer support. But beyond all of that, there’s also a nature to these journals that act as a meaningful format for remembering Sara. And I’m thankful of that reminder, as properly honoring and remembering Sara is one of my true objectives in life right now.
Admittedly, readership of the blog is down drastically. And part of me felt like just stopping the public posting of these journals since so many less are reading it now. But after analyzing the reasons for the journals again – the lower readership is OK. There might not be many who will read this at the time of each posting. And that’s OK. That’s not why I’m writing them.
We’re honoring memories – and we’re not moving on
I need to remember her properly. Her family and friends need to remember her properly. But most of all, I want my kids to remember her properly. Especially for Cam – I’m so sad that he doesn’t and won’t really ever remember the mother that he had when he was born. His memories will only be of a mother who was struggling, tired, sick from chemo, and frail from years of a hard fought battle with cancer.
If posting these journals to Love Your Buns can motivate me to document these memories for my kids, even if it is through the lens of my grieving process – it’s all worth it.
My kids and I are doing our best, not to move on. In fact, it might sound odd, but we’re doing everything we can to never move on from this. Our love for her is just too important to try to forget and move on with life.
Yes, life goes on. It’s a force of nature. But we want to keep her central to our lives. Talk about her frequently, think about her as often as we can. Yes, this leads to frequent crying and some of those long bouts of sadness – but who would want to forget their soul mate? And who would want to forget their mother? So, we’re meeting the grief head on. This post is long – so maybe more on that for another day.
But in conclusion – I do have a lot to be thankful for. It would be foolhardy to try to list them all here, but some big ones that keep me going:
- My kids are everything to me. I’m so thankful for them, and for what wonderful humans they are growing to be.
- My marriage to Sara was the definition of success. We were a true partnership, founded in love, devotion, friendship, and faithfulness. I have to appreciate those stone-cold facts.
- Family is everything. I have the best family, and am so thankful for my mom, my brother, and all of my in-laws for their involvement in our lives. I’d be truly lost without them, and I love how I feel like no matter what happens, I will always be a part of the Carlson clan.
- Sara’s presence with us still feels strong. I’ll cling to this for as long as I can – and I’m thankful for it now.
Much love to you all on this Thanksgiving Day. It seems even in the midst of great sorrow, finding and feeling gratitude for the blessings that remain in life can be a powerful source of strength and courage. We just keep moving forward.