"Can I do anything? Please?"
No, but thanks.
Aw, that means a lot but I’m okay, thanks.
Nah, but thanks for asking.
I appreciate it, but I’m okay.
This is what I say.
This is how I respond.
I thank them. I move on.
What I need is this,
right now:
An assurance that everything will be fine.
A hand that covers mine.
A soul strong enough to bear a piece of mine,
if only just for tonight.
What do I need?
A way to escape the fear
that is replaying in my head.
I am scared, I am scared, I am afraid.
Everything else is physical.
Everything else is manageable.
And still:
I am scared, I am scared,
I am afraid.
(But thank you for asking.)
2/18/13
2/15/13
Conversations With My Father About Donuts
Dad: So, your mother wanted me to talk to you about something.
Me: Oh Jesus. What? I barely drink. I don't smoke. I don't--
Dad: No, it's not that.
Me: Well?
Dad: Well. You have diabetes.
Me: I guess that's true.
Dad: You...you have to stop eating donuts.
Me: Ugh.
Dad: Your niece needs you to live.
Me: Way to play that card!
Dad: Your family needs you.
Me: FINE, I'LL STOP. I'LL GIVE THEM UP FOR LENT. BUT I'LL NEVER BE HAPPY AGAIN.
Dad: Okay!
(How many days until Jesus rises? Seriously. I passed a cop going into a Dunkin' Donuts and it was the only time in my life I wished I was in the pack of a police car.)
Me: Oh Jesus. What? I barely drink. I don't smoke. I don't--
Dad: No, it's not that.
Me: Well?
Dad: Well. You have diabetes.
Me: I guess that's true.
Dad: You...you have to stop eating donuts.
Me: Ugh.
Dad: Your niece needs you to live.
Me: Way to play that card!
Dad: Your family needs you.
Me: FINE, I'LL STOP. I'LL GIVE THEM UP FOR LENT. BUT I'LL NEVER BE HAPPY AGAIN.
Dad: Okay!
(How many days until Jesus rises? Seriously. I passed a cop going into a Dunkin' Donuts and it was the only time in my life I wished I was in the pack of a police car.)
Location:Hell
2/14/13
Love, Love, Love
Yesterday I woke up to my dad coming to visit my apartment with a huge box of goodies from my old boss at Harrison & Star, Sara.
Inside there was applesauce for my mouth sores, a bunch of books I've been dying to read, a writer's guide, fake hair extensions, a sleep mask and more.
I was completely blown away and sincerely moved by the gesture.
Later that day, I went to get the mail and curiously noticed a few more packages. I quickly brought them inside before my dad realized I'd ordered a couple of used books of Amazon on his AmEx...but there was more.
There was a Christmas card and a note from one of my FD camp friends, Barbershop. He wrote to let me know he was thinking of me during this tough time. The note was so beautiful and touching and personal that I'm welling up just now thinking about it.
And then there was something else! A beautiful piece of art from my camp counselor, PopTop (we all have a nickname) and a rad mix CD. I had to search my house for a CD player but I found one after my time machine kicked in (kidding, PT!) And as Bob Marley warbled "Don't worry, about a thing", I felt immediate comfort (and a craving for medicinal marijuana). I lounged back and listened to the rest of the CD and thought about how lucky I am.
I wonder, sometimes, what to do with all this love? I am given so much. From my parents and family and cousins, who cook for me, do my laundry and generally aid me as I go through this period of extreme fatigue.
From my friends, who give the simple gift of understanding. Who don't pressure me to do more than what I'm capable of. From my camp family at FD, who inspire me daily.
From my niece. Who is only 5 months old but yet brings me such joy. From my sister, who puts that baby in the car to come see her Aunt Kelly. From my brother, and his inane text messages that make me laugh and roll my eyes.
And from this online community of Twitter, Tumblr and Instagram: strangers before, they now send me books and notes and prayers.
What to make of a life so full, so hard, so beautiful?
I must practice gratitude.
Know that people are good. That for every horror story, there are a million acts of kindness.
This is proof. And I am so grateful.
So, what to do with this love?
Appreciate it.
Pass it on.
Be kind.
Be good.
Pass it on.
Thank you to everyone for their support. I love you all.
Happy Valentine's Day.
2/1/13
What Makes You Happy?
These next few weeks are going to be hard on me (physically and emotionally) so I made myself a list of the things that make me happy to get me through.
What Makes Me Happy: A List
-Recommending a book to someone and then hearing how much they loved it.
-Writing using Papermate's Flair Pen, which doesn't leak through the page
-Taking pictures
-Writing, when it's going well
-Summer, all of it, everywhere
-Sleeping the perfect amount (this is so rare!)
-Finding a way to embrace the moments when I am not in pain
-Making people laugh
-Vacuuming
-Beating everyone in Jeopardy!
-Magnetic Poetry (Don't hate.)
-Being alone, under my covers, with a book and my iPad
-Being "on" while surrounded by family and friends
-Reading to my niece
-Chasing my cousin's children and my friends' kids around on the beach
-Swimming in the ocean
-Well-deserved sweat (Sweating for no reason annoys me greatly)
-Parks and Recreation and Cougar Town
-A whole-wheat everything bagel with low fat veggie cream cheese from Delicious Bagels in Wannamassa, New Jersey
-My strong connection to my family, even though they are nuts
-Reconnecting with an old friend and finding the magic is still there
-Surfing. The few times I can stand on a board, I am usually overcome with joy and fall off.
-My connection to my First Descents Family, without whom I would be lost
-The cold, clear buzz off one beer. I rarely drink now, but when I do, I make sure I find joy in the one or two glasses I have. It is a treat. (I know, who am I?
-Traveling. Making plans to travel. Believing I can.
-You.
What makes you happy?
What Makes Me Happy: A List
-Recommending a book to someone and then hearing how much they loved it.
-Writing using Papermate's Flair Pen, which doesn't leak through the page
-Taking pictures
-Writing, when it's going well
-Summer, all of it, everywhere
-Sleeping the perfect amount (this is so rare!)
-Finding a way to embrace the moments when I am not in pain
-Making people laugh
-Vacuuming
-Beating everyone in Jeopardy!
-Magnetic Poetry (Don't hate.)
-Being alone, under my covers, with a book and my iPad
-Being "on" while surrounded by family and friends
-Reading to my niece
-Chasing my cousin's children and my friends' kids around on the beach
-Swimming in the ocean
-Well-deserved sweat (Sweating for no reason annoys me greatly)
-Parks and Recreation and Cougar Town
-A whole-wheat everything bagel with low fat veggie cream cheese from Delicious Bagels in Wannamassa, New Jersey
-My strong connection to my family, even though they are nuts
-Reconnecting with an old friend and finding the magic is still there
-Surfing. The few times I can stand on a board, I am usually overcome with joy and fall off.
-My connection to my First Descents Family, without whom I would be lost
-The cold, clear buzz off one beer. I rarely drink now, but when I do, I make sure I find joy in the one or two glasses I have. It is a treat. (I know, who am I?
-Traveling. Making plans to travel. Believing I can.
-You.
What makes you happy?
1/30/13
Cancer Never Goes Away: A Medical Update
Today, I went to see my endocrinologist, who handles my diabetes and thyroid cancer. She noted that it's been five years since my cancer diagnosis but my markers were off and she'd like to do a set of scans again.
No biggie, usually. I've had this done in the past. It involves 3 days of injections and then a scan.
However, this time, insurance refuses to cover the process. (They claim they don't cover cancer. WTF.) So we will have to go about declaring me cancer free in a different, much more difficult way.
I will go through 4 weeks of withdrawal of my thyroid medicine, which stimulates your metabolism, your energy and fatigue levels. I will not be allowed to take any thyroid supplements until my numbers go down and they can do the scan. The scan will be able to see if anything new is growing.
My doctor told me to expect to feel shittier than I have ever felt before. I'll likely gain weight and be exhausted from short activities. You cannot function without a thyroid, and I will monitored carefully (my doctor said to text her complaints, because I'll have them! Ha ha kill me!)
I did not see this setback coming, so I am understandably upset. And angry. And wishing I could catch a break now, or anytime soon.
I'm also in the swing of a lupus attack and dealing with mouth and throat sores. I am about to be 10x more miserable, which I totally did not think was possible!
So, dear readers, please comment below or on Facebook and give me good recommendations for books and streaming TV shows. I'll also be writing for most of this time, so if you have any interest honing editing skills, let me know!
It's going to be a tough 4 weeks. But hopefully my scans will be clear and I will be given the OK to move back to California in March.
Thanks for continuing along!
No biggie, usually. I've had this done in the past. It involves 3 days of injections and then a scan.
However, this time, insurance refuses to cover the process. (They claim they don't cover cancer. WTF.) So we will have to go about declaring me cancer free in a different, much more difficult way.
I will go through 4 weeks of withdrawal of my thyroid medicine, which stimulates your metabolism, your energy and fatigue levels. I will not be allowed to take any thyroid supplements until my numbers go down and they can do the scan. The scan will be able to see if anything new is growing.
My doctor told me to expect to feel shittier than I have ever felt before. I'll likely gain weight and be exhausted from short activities. You cannot function without a thyroid, and I will monitored carefully (my doctor said to text her complaints, because I'll have them! Ha ha kill me!)
I did not see this setback coming, so I am understandably upset. And angry. And wishing I could catch a break now, or anytime soon.
I'm also in the swing of a lupus attack and dealing with mouth and throat sores. I am about to be 10x more miserable, which I totally did not think was possible!
So, dear readers, please comment below or on Facebook and give me good recommendations for books and streaming TV shows. I'll also be writing for most of this time, so if you have any interest honing editing skills, let me know!
It's going to be a tough 4 weeks. But hopefully my scans will be clear and I will be given the OK to move back to California in March.
Thanks for continuing along!
1/29/13
Moving Forward
Here, the lake has frozen over and the ground crunches with ice when I walk the 500 feet between my apartment in the carriage house to my parent's home.
I am back here in NJ for less than two months; I have things to do and money to save and bills to settle before I can set off again.
I have been feeling good--well, better than before. My blood work was improving and my scans were clear. I was looking forward to putting an unhealthy and painful few months behind me.
Yesterday I woke up remembering that my relationship was over. It stung, but so did my mouth. A new batch of ulcers had arrived over night. Since then, eating has been nonexistent; talking, a gamble. The sting in my mouth correlates with the sting I'm feeling over my breakup.
I cannot wait to get away from my life here, frozen like the lake that surrounds me. I love my family, and I love my new home, but I am meant to hike and swim and bike and feel the air every day on my skin. I want to take the pain in my mouth (so large, so present), and push it toward pain elsewhere, pain in my legs as they scale a mountain, pain in my arms as I swim another lap.
I want to repurpose my life. I want to get back on track. I want to forget the last 6 months, because it would hurt less if I did.
But nothing is a waste. Time pushes us forward, relentless. Soon I will feel the sun on my face again, and I will remember that it is worth the struggle.
That everything worth anything is indeed worth the struggle.
1/1/13
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