We are raising a child who has epilepsy and autism, and we get frustrated. We've been watching our son seize for nearly six years, and have not found one anti-seizure medication stops the seizures. We've tried six. Or maybe seven. He still seizes.
On a good day, I see less than 10. His seizures last about 2 seconds. If you don't know him well, and you're not constantly watching him, you'll miss it.
On a bad day, he'll have 20. Or 30. Or more. I stopped counting them a long time ago. I just know, in general, how many he has.
But for him, it's like living in a strobe light.
Two years ago, Pop-pop (Randy's Dad) was diagnosed with stage 4 prostate cancer. Stage 4 translates to "the worst type of fucking prostate cancer ever."
On a good day, I see less than 10. His seizures last about 2 seconds. If you don't know him well, and you're not constantly watching him, you'll miss it.
On a bad day, he'll have 20. Or 30. Or more. I stopped counting them a long time ago. I just know, in general, how many he has.
But for him, it's like living in a strobe light.
Two years ago, Pop-pop (Randy's Dad) was diagnosed with stage 4 prostate cancer. Stage 4 translates to "the worst type of fucking prostate cancer ever."
And then I was diagnosed with stage 2 breast cancer. My cancer was a triple negative, which translates to "the most aggressive type of fucking cancer a per-menopausal woman can have."
We don't do things half-assed in our family. Only full-assed will do, thank you.
We don't do things half-assed in our family. Only full-assed will do, thank you.
We both fought our cancer. But then Pop-pop developed a melanoma so aggressive, he wasn't able to fight anymore. On June 13, 2015, he lost his battle with both of his cancers.
I made it through chemo. It was between treatments that my father-in-law passed.
And now I have to deal with radiation. Twenty-one treatments. Every weekday.
I made it through chemo. It was between treatments that my father-in-law passed.
And now I have to deal with radiation. Twenty-one treatments. Every weekday.
So my family is beyond angry. We're pissed. We're a white hot type of anger. We're enraged. All four of the humans in my house are angry at life.
Fortunately Abby, our black lab mix, isn't angry, and helps us all balance The Force.
Anger can be healthy; it can drive us to get motivated and make positive health choices. Like if a person is obese, they can be angry about that and start exercising and eating healthy foods.
Anger can be detrimental; it can cause us to rage; saying and doing things we wouldn't do if we were thinking clearly. Last night I had a horrible fight with Nathan. I don't even remember what it was about. Oh...wait...right, I told him to stop wrestling with Isaac after dinner. Hello? Someone's gonna puke! I told him more than twice. And then I lost my mind.
Why? It's a combination of things. We had a good day until I got home from radiation. Tuesday is doctor day at radiation. So I saw the doctor. But it wasn't MY doctor. MY doctor is a woman. This doctor was a man. And I felt like I was treated like a child.
I have a Master's Degree in Community Health Promotion. I KNOW I need to write down all my questions (which I did). I KNOW I need to bring a friend (which I did) as a second set of ears. I mean I TEACH my students how to have a good doctor's appointment. I have more experience with different specialists than a person should have.
Had he bothered to read my chart, the conversation would've been different.
Had I bothered to speak up, the conversation would've been different.
But thanks for the pat on the head and the "atta girl!" Now go away and get me MY doctor. The lovely woman who takes the time to get to know her patients.
Afterwards, I went to Costco because we need ink cartridges. And I saw these winter coats, which the boys need this winter. And I texted a pic to Randy. But it didn't go through. And then I couldn't remember the model of printer. So I said, "Fuck it!" and I left for home.
It's not like I'll be in the Costco neighborhood again anytime soon. I go today. And tomorrow. And Friday. And each weekday until I'm done being radiated.
Cancer is a clusterfuck. And this year, there's been more yelling than normal in our home. I mean, by default, as a family living with autism, we're the loudest house in the 'hood. But this year has been an exceptionally difficult year for us.
Why? It's a combination of things. We had a good day until I got home from radiation. Tuesday is doctor day at radiation. So I saw the doctor. But it wasn't MY doctor. MY doctor is a woman. This doctor was a man. And I felt like I was treated like a child.
I have a Master's Degree in Community Health Promotion. I KNOW I need to write down all my questions (which I did). I KNOW I need to bring a friend (which I did) as a second set of ears. I mean I TEACH my students how to have a good doctor's appointment. I have more experience with different specialists than a person should have.
Had he bothered to read my chart, the conversation would've been different.
Had I bothered to speak up, the conversation would've been different.
But thanks for the pat on the head and the "atta girl!" Now go away and get me MY doctor. The lovely woman who takes the time to get to know her patients.
Afterwards, I went to Costco because we need ink cartridges. And I saw these winter coats, which the boys need this winter. And I texted a pic to Randy. But it didn't go through. And then I couldn't remember the model of printer. So I said, "Fuck it!" and I left for home.
It's not like I'll be in the Costco neighborhood again anytime soon. I go today. And tomorrow. And Friday. And each weekday until I'm done being radiated.
Cancer is a clusterfuck. And this year, there's been more yelling than normal in our home. I mean, by default, as a family living with autism, we're the loudest house in the 'hood. But this year has been an exceptionally difficult year for us.
We're done with this year. We're looking forward to 2016. And no matter what happens, we say sorry, we hug, we forgive, and we love each other.
You are a rock star. And an angel and a saint. And more is being asked of you than of normal humans. Please believe you are up to the challenge and please give yourself the grace to feel angry that so much is being asked of you. Just because you can do it doesn't mean you should have to.... I think of you every day, Rachel. And of our fun talks. It will get better, I promise.
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