Today, I'm beginning my 5th year of living with stage 4 cancer.
Three years ago today, I was diagnosed with metastatic #leiomyosarcoma.
Four years ago tomorrow, I was misdiagnosed (the primary tumor in my thigh was dx'd as a DVT; the tiny nodules in my lungs were dismissed as benign scar tissue).
So now I've been living with #stage4cancer for (at least) four years, but I've only known I was living with it for three.
I envy the me of 2017, blithely living the last normal year of her life, ignorant of the trauma that was coming.
At the same time, I wish I could go to the me of 2017 to rob her of that last year of normality in exchange for a truth that would lead to more timely treatment.
It would be a tough trade, but it's one I would take. When sarcoma has only spread to the lungs, a patient will sometimes be given treatment options w/ curative intent (meaning the goal is to get rid of all the cancer).
But once sarcoma has also spread to the liver, a patient will instead be given the pity eyes from the people on her medical team.
Or at least that's what I was given.
And let me tell you, getting the pity eyes can sometimes be harder to bear than the actual facts of your situation.
But here I am, in defiance of the pity eyes.
Here I am.
The medical studies will always lay out grim statistics for stage 4 #sarcoma:
- overall life expectancy of 12-18 months
- 2-year survival rate of 30%
- 5-year survival rate of 16%
They will use words like "dismal prognosis" and "limited treatment options."
Those are all hard words to read and even harder to live with. One of the ways I deal with it is by taking those words as a dare.
Today, the first day of my 5th year living with #stage4cancer, is another step in taking the big dare - the dare to hope I can keep going.
I know a lot more than I used to about my limits. I know a lot more in particular about the limits of my control. I know more than I wish I did about how quickly and dramatically things can go wrong. But I also know more clearly than ever what I *do* have control over.
I don't have as much control as I wish I did over the course of my disease or the length of my life or even how I physically feel on any given day. But I have plenty of control over how I live the days I have. I have control over my perspective, thoughts, attitude, responses.
In fact, I'm the only one who has control over any of those things.
I have choices. And who knows how those choices might actually impact the things I seemingly have no choice about?
This morning, when one of my 16 year-old sons realized today was the anniversary of my diagnosis (and of my misdiagnosis), he said, "Happy Birthday! Let's get a cake for your cancer." And my other 16yo son said, "Seriously. We should get cake to celebrate."
I love their wry humor, their whimsical impulses, their sensitivity to time and milestones and memories, and their understanding that life is a gift to be celebrated. These are the attitudes I want to choose and keep choosing myself.
Such attitudes are not a denial of the awfulness of my (our) situation; they are a refusal to let the awfulness be the only (or final) word.
So. Here I am. On the first day of my 5th year of living with stage 4 cancer. In defiance of the pity eyes.
I know the truth. I choose the dare. Let's have cake.
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Wondering if any parents out there have negotiated 504 or IEP #remotelearning accommodations for a teen with #ADHD. Trying to figure out what will work + what is reasonable when school is fully virtual.
@ErynnBrook I'm wondering if you or any of your followers might have ideas?
FWIW, I also have #ADHD (my son's dx at age 8 was the aha moment that led me down the path to my own dx), so I have a deep understanding of his challenges + needs, but am out of my depth in trying to provide all the supports + structure to help. Was managing it okay pre-pandemic.
Son hasn't had a 504 or IEP since 5th grade - did well in middle school w/o accommodations. Began doing less well in 9th grade after being hit by a car while walking home from school (was physically okay but had significant mental + emotional trauma).
As a pastor, I have something to say about Trump's call to "pack the churches" on Easter.
The Jesus I follow and proclaim explicitly cared for the most vulnerable and for those who forgotten, overlooked, or mistreated by the powers-that-be.
He himself died at the hands of the state at the order of one who had abdicated his actual leadership responsibilities, with the support of unthinking masses who had been whipped into a frenzy by religious leaders who were most concerned about their own institutional power.
It's almost midnight and I'm still processing this morning's appointment, my first with this particular doctor. Having never met before, the first sentence out of her mouth (after introductions) referred to my #stage4cancer.
In the 8 months since my diagnosis, none of the many doctors, nurses, or other medical personnel I've seen have used that language about my situation. None. Yes, I have metastatic cancer. Yes, that is #stage4cancer. But the language of cancer is such a tricky thing.
In the beginning, I rejected the language of "stage 4" as unhelpful. And in many ways, I still find it unhelpful. It has a way of shutting down reality. It has a way of sounding like it is the ending of a story that hasn't actually ended yet.
ICYMI: on Friday, a megachurch pastor whose brand is all about marriage and sexual purity admitted to sexually assaulting a 17yo girl when he was her youth pastor (he called it an "incident" not an "assault")
He didn't deny the details she shared, which make clear that it was an assault.
What's more, the men in charge of the church at the time of her assault further abused her by how they handled it.