When I was a young girl, I liked to read Grimm’s fairy tales. Not the cleaned up versions, but the old school ones with cruel villains and extra spooky plots.
I had seen enough ugliness in the world to suspect that the saccharine, popularized retellings were inaccurate in their representation of the world, so I sought out dark stories that felt more honest.
As I have been processing all I have gone through, I keep thinking back to The Seven Ravens. In it, a girl’s seven brothers get bewitched and turned into ravens. She goes on a quest to find them, and learns they are locked inside a glass mountain. The only way for her to free them is to cut off her finger and put it in the keyhole. She does so without hesitation and frees her brothers, who resume their human form.
The moment where she cuts off her finger always caught my breath. It was one line in a very brief story, but I meditated on it as a child.
What would I have done in that situation? How badly would it hurt to cut off your own finger? What went through her mind as she brought the knife onto her own flesh? How did she have the strength to actually push it through all the way? Does she realize that she will never have that finger again? Will her brothers ever understand what she did for them?
The Seven Ravens and the questions it forced me to ponder are not unlike what I had to face as a cancer patient. I willingly chose terrible suffering, a cruel regimen of pain, as a sacrifice I made to have more life.
Being a participant in my own pain is not something that came easily or that I am getting over. As my friend Xeni has entered the middle part of her course of daily radiation, I am reminded of this unnerving aspect of the treatment.
Climbing on the table. Day after day, even as your skin gets sore and maybe even blisters. Even as you feel the energy draining from your body. Like the ancients who sacrificed animals to unknown gods, we offer ourselves up to the unseen cells we seek to placate.
All this is done on our own accord. Unlike chemo, nobody typically escorts you. The sessions are brief and frequent. You climb on the table yourself, get into position. Unlike surgery, there is no heavenly moment of Versed bliss before you lose consciousness and it is all in the doctors’ hands. Your volition, your showing up, your stillness and cooperation is what makes it all work.
What prepares us for this? How do we make sense of what comes next?
As the news of NED sinks in, as I approach my three year milestone, I vacillate between anger at what has been lost and amazement that I am still alive.
My arm catches fire with lymphedema and nerve damage. I am in anger again.
My brain gets clicking, my energy sustains me through a day, and I connect to what I love most in life. I feel immense gratitude.
I thought the roller coaster ended with treatment. But I now see recovery has its own ups and downs. We are reminded by our own bodies, by our friends’ stories and suffering, of all that we have endured.
The challenge, as I see it, is to make the most of the moments of joy. To seek them out.
That may be the only way to make good on this terrible sacrifice.
Tags: attitude, changes, coping, courage, daily life, fatigue, gratitude, grief, hope, identity loss, radiation, recovery
Posted in Survivorship, Treatment | 6 Comments »
I had my (almost) 3 year follow up appointment this past week.
The good news: NED.
The bad news: The life of an oncology patient is still often beneath my dignity.
I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.
It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.
So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.
I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.
He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.
I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.
Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.
Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.
No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.
I turned to Junior Doctor and said, Watch and learn from the master.
I agreed to try the Cymbalta.
As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.
I felt my heart rate go up. A half dozen call-outs flashed through my mind.
Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.
When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.
I will, she assured me.
After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:
Dr. Douche, does the AppStore have anything to help me find a better oncologist?
Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.
So sorry. Is my medical appointment interrupting your texting?
This cap fest was gratifying in a sophomoric kind of way.
But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.
Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.
You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.
Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere
Oh, and also?
Put away that damned phone.
I realize that NED gives me the luxury to bitch about these details. I am grateful.
I hope that my griping helps those of you who are in treatment or are dealing with long term disease.
I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.
I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.
Tags: advocacy, awkwardness, changes, coping, doctor-patient interaction, education, identity loss, mental health, self-advocacy, social media, support, what not to say
Posted in Survivorship, Treatment | 15 Comments »
This past week, my oldest started a new school. At the new student orientation, after the introductions and the parents-only spiel, the students had gone off to meet their teachers and see their classrooms.
I retreated to the gymnasium, hoping to get a little bit of work done while I waited for my daughter to finish her tour.
A few minutes later, one of the dads joined me. “Good idea,” he said. “Not exactly enough time to go back to the office.”
We got to chatting. He had a son. He was raising him on his own “because my wife passed away.”
A pause. Then: “May I ask how?”
“She died of breast cancer when my son was 7.”
He told a painful but all too familiar story. They caught it early. She went through all the treatment, chemo, surgery, radiation, the works. And a few months after treatment was over, she had a metastatic recurrence.
When I meet a breast cancer widower or orphan, I feel compelled to open my heart to hear their story. I feel a need to make myself emotionally available. Most people cannot imagine what they have experienced. I have gone closer than most. I feel I owe it to the woman who died.
Because the truth is, I hope that others would do the same for my husband and children if I ended up leaving them behind.
It was a moving conversation, full of connection and empathy without being uncomfortably personal. I think we both were touched, he feeling understood and me feeling the gratitude of being in the place that I am.
That night, however, was a different story. At 3 AM, I woke in a sweat. I had dreamed I was being chased down with some monster mutation of vicious tractor. The driver was trying to kill me.
It was only after I woke that I realized that the gentle, kind father’s face was on the demon of my dream.
How do we do this? How do we reap the fruits of compassion that our experience gives us while looking at our worst fears straight in the face?
Tags: changes, courage, daily life, essay, gratitude, grief, identity loss, parenting, survivorship
Posted in Survivorship | 29 Comments »