Whoo boy, this is a drag to write. About a year ago, my sister-in-law and I had a conversation about Joni’s care. The note I created in OneNote is dated 10/10. Unfortunately, I don’t have any other notes about it, so I don’t know the specifics that were discussed. But I do know that it was about Joni’s cancer progressing and what our next steps were because her sister came out to visit from 10/18 to 10/24.
The appointment with Joni’s doctor was not a pleasant one. It was during this visit that he said that we were basically at the bottom tier of available treatments. It was heartbreaking. I remember Joni saying that she just wanted to make it to Christmas at least. He said, “I think I can get you to Christmas.” Ugh. That’s when the bottom just completely falls out. Originally we had both wanted to Joni to live at least as long as Ember’s 13th birthday, but cancer is no respecter of our desires and we had to change our expectations.
Even thinking back on it now my heart is racing. I heard what the doctor said and, as usual, I was supportive of Joni’s decision to pursue whatever treatment she felt like she wanted/needed. But I still refused to believe that she would pass away...or do so as “soon” as Christmas. I held onto hope of a miracle every step of the way. From her initial diagnosis in June of 2015 all the way through her final hospitalization on Christmas Day, 2018.
I didn’t know that it was the beginning of the end and I think about it a LOT. I ponder whether or not we did the right thing in what we told the kids and how much we told them. I second guess whether I should have pushed for trying alternate treatments through the University of Washington’s Cancer Care Alliance. I go back and forth between being upset with her oncologist and being rational and realizing that he is one of the best in Seattle and extremely qualified. I think about whether I was in denial or truly believing for a miracle. Probably a bit of both.
I know I’ve written about this before: if I had known exactly how much time we had left, would it have mattered? Would I have done anything different? Would it change anything? It makes me sick in the pit of my stomach to look back on it now. Like I’m embarrassed with myself for being naive or something. Like watching a good show and seeing a favorite character make decision after decision that leads them down a bad path, you just feel bad for the person. I’m not saying we made poor decisions AT ALL, just equating what it feels like. There’s some pity mixed in there too.
So it was the beginning of the end. And it breaks my heart to think back on it. Rebecca and I recently discussed that we were both feeling down and we realized that it was roughly a year ago when everything seemed to start to unravel. The final shoes of that damned caterpillar of cancer (see my earlier post about that) were being removed and would be dropped. This hindsight is a weird connection with the past where the dread you felt then is still felt in the present; like you’re connecting across time with yourself. But in the present, there’s the knowledge of what will happen. It makes feel like you’re moving in slow motion yelling “Noooooooo” while a precious, breakable item moves inexorably to the end you know is inevitable.
So I guess by looking back, the pain I feel - that feeling in the pit of my stomach - is almost like wanting to experience the time again so I could have those tender moments again. It’s a cry of my heart through time to my past self to treasure those moments. It’s a wish for a different outcome, but knowing one won’t come. It’s the pain of the loss of one of the most amazing women I’ve ever known, my best friend, and my partner (in every sense of the word).
I’ve decided that replaying those moments, the decisions, and the actions of that period of time is a way of processing what happened and dealing with my grief. It would be unhealthy to remain there, but I think it’s good to give a fair assessment: did I do everything I could? Did I live like I wanted to? Was I supportive, loving, advocating, and caring? Did I say everything I wanted to say? In my case, I can proudly say “yes” to all of those. I had no power to do anything more than I did. We lived like we wanted to: in close emotional intimacy with all of our friends and family and taking advantage of all the time before us. I was supporting, loving, advocating, and caring to the Nth degree. And yes, I said everything I wanted to say.
I just wish I had longer to do those things.
Thanks for reading.
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