I am 11 years old and was diagnosed with Pancreatic cancer after noticing jaundice of my eyes. I was also enduring liver failure due to this with no symptoms.
Part 1 of 2 I have been in pain every day since I was 20 years old because of what I now know to be a genetic disorder of my connective tissue. As a result, I’ve been asked approximately one zillion times by healthcare providers of all kinds to rate my pain on a scale of 1-10. Sometimes they have progressively unhappy faces to accompany the numbers, but mostly it’s just that 1-10 scale that I’m supposed to make sense of on my own.
The faces are adorable but seriously, what are the units? How do I answer when I have no frame of reference (I can’t remember a time when the answer was zero)? How do I separate the stabbing neck pain causing a massive headache and a muscle spasm, from the throbbing ache in my lower back? And really, why does it matter? How does anyone use this ridiculously subjective information?
As a chronic pain sufferer of decades, I promise I would not drag my ass out of the house to talk to some pimply-faced resident unless the pain was pretty freaking bad. And I can tolerate an awful lot of pain.
But, if I have a new pain or injury that I can’t tolerate or that I’m worried about, I have to go see some well-meaning practitioner who probably doesn’t doesn’t personally deserve whatever vitriol I might have on tap that day. That resentment is held in reserve from decades of often useless and all too-frequently offensive doctor visits where they respond to me as if I am a ticking liability time bomb of addiction and/or hypochondria. So when a new person asks me to rate the damn pain because that’s the protocol, my annoyance level spikes but I grit my teeth and do my best to answer as nicely and as accurately as possible.
Generally, I answer based on my mood. If I’m feeling nice and having a relatively pleasant day I’ll want to rank the pain lower than it actually is because I don’t want the doctor to feel bad for me. If I’m anxious (and I’m usually anxious at the doctor), I’ll also rank it lower because I’ll be afraid if I say the number is too high they won’t believe me. That said, I never start below a 3 or 4 because the pain is always there and always uncomfortable enough to call my attention. I almost never put my number above a 8 because I decided giving birth felt like a 9 and anything above that must mean I’m pretty close to death.
The whole problem is that that’s just me and my personal scale based on my mood. When my kid sprained his ankle at soccer and it hurt so bad he couldn’t walk he called that a 10. And who am I to argue?
Because of my condition I am on a regimen of opioid pain pills that I have taken for seven years. I do not care if you read research that says taking those meds doesn’t actually help me or makes my pain worse. You are wrong. Those drugs make me functional and I’ve tried so many other approaches that if I named them here your eyes would start to glaze over and I’d lose you. Just rest assured those approaches have run the gamut from crystals that vibrate at my body’s magnetic resonance to multiple highly invasive surgeries and everything in between.
Anyway, in order to acquire said pain pills I have to go, in person, to my physiatrist every 28 days and answer that stupid 1-10 question and pee in a cup for a drug test. I’m not trying to be precious here – I absolutely should be checked up on and I, myself, worry about becoming addicted. It’s just that monthly feels super excessive, especially for someone who has been successful on the same meds for so long, and extra-especially since the precise pain I need treatment for is made worse by getting in a car to drive across town and sit in a waiting room.
That meaningless, subjective 1-10 question is a special kind of torture in that context because at any moment some bureaucrat from the government or from the insurance company might decide that only people who give the “right” answer on the pain scale get access to the drugs, and if I get the answer wrong then I’m totally fucked. So every month when I get the question it’s like that stress dream from college where I forgot I signed up for a class and have to take the final on the last day or I fail, and I have to take a wild stab at it and hope for the best.
A couple of weeks ago I was asked to research validated pain scales for some public health research work I’m doing.. A “validated pain scale” is a way of assessing pain that research has found to be consistent across many populations. It turns out the 1-10 question with the faces is in fact a validated pain scale, but only for pediatric cancer patients who aren’t developmentally able to articulate their experience. So are a bunch of different other ways to ask about pain that have been tested in cancer patients, amputees, and other pain sufferers in specific situations. It was super enlightening and made me start thinking about ways t
Getting a cancer diagnosis is many things — heartbreak, anger, pockets of simplicity, grief, even gratitude. But there are parts of it that straight up suck.
What’s been the #1 challenge for you or a loved one?
Being diagnosed with cancer can certainly be scary, confusing, and frustrating — just to name a few of the whirlwind of emotions that may come up.
If you could give any advice or words of wisdom to someone newly diagnosed with cancer, what would you share?
🎧 🎙️ If you're up to it and would like to listen, feel free to check out this Mighty Podcast episode on what it's like living with a rare cancer:
At first we didn’t notice anything unusual. Riley was still the imaginative and energetic little 4 year old we knew. The first thing we noticed was big ugly bruises all over her body, we didn’t think much of it since she was pretty active. We assumed she fell of the monkey bars, or tripped while doing hopscotch. After a little while bruises started appearing where they didn’t belong, like in her armpit or on her scalp. There were also the nosebleeds that were a constant recurrence. Me and my husband, Mike, had an appointment for Riley in a week when she got sick. She couldn’t hold anything down. She usually flushed it down before we saw it but one time when I was with her, she got sick and it was bloody. I called for my husband who scooped her up and we rushed to Children’s Wisconsin hospital. They did blood tests that showed abnormally high numbers of white blood cells. they did more tests, MRI’s , EEG’s, bone marrow tests, and more. a few days later we got the horrific news that Riley, our sweet little ball of energy, our angel, did in fact, have #ChildhoodCancers. Stage two themighty.com/topic/Leukemia.
The doctors suggested chemo but he said there was a high possibility that Riley would not survive. She has had 2 years of chemo and 1 surgery. She is still fighting and the doctors are amazed at how far she has come. even without her blonde hair she is the cutest little 6 year old in the world. 6 months ago I found out I was pregnant. a little boy. Riley was ecstatic when she heard the news, so was my husband. The doctors still say that Riley might not survive, even if they don’t have hope I do. Riley recently took a turn for the worst. Her vital signs dropped and her blood cell count was low. It came to a point where she had to be put on a ventilator. She is doing better now and is still my little sunshine. She had an open heart surgery to remove a tumor from her chest a month ago. I will post updates on her treatment. This photo was taken by my husband, during one of her Chemo treatment days.
⭐️ Meet Mel ⭐️
⭐️ Meet Jae ⭐️
This post (and day) is for you, cancer fam. We honor your journeys today. 💖