Updated: Nov 23, 2021
Post #7 in the series "Reprocessing Chronic Pain"
I've made reference here to a family medical crisis that has been seriously challenging my efforts to rewire my brain and body away from chronic pain. We've decided to share the details. My husband has been diagnosed with throat cancer. Even as I type the words, it feels unreal. We've suddenly dropped into an alternate universe where nothing is the same and everything is new and scary. We don't have a complete diagnosis yet but the doctors are all telling us it's highly treatable. And that treatment will be long and difficult, with some real long-term risks. Our schedules have been upended by appointments, tests, and procedures. It's like being thrown suddenly onto a speeding train.
It just wouldn't make any sense to continue to chronicle my pain healing journey without sharing this. The central tool of Pain Reprocessing is developing and deepening a felt-sense of safety, even in the face of physical pain, challenging emotions, and ongoing life stressors. In the month before we realized something was going on with my husband, I made huge progress. I was hopeful, excited, optimistic, and full of passion for the immense promise of mind-body healing for chronic pain. I was reversing decades of living in a state of chronic fear. It was amazing.
Then this happened. I wondered if I would be able to stay on this healing path when faced with possibly the most terrifying experience of my life. So far the answer is yes and no. Yes, my overall pain level is significantly lower than it was 2 months ago. I am confident that will be sustained. And no: it's now a different path, more circuitous and with a steeper slope.
Here's how things have played out so far. My husband is an active, athletic, and very healthy man in his 50s. He hadn't been to a doctor in years. He's never had any kind of medical treatment other than some broken bones when he was a kid and a brief stint of severe back pain in his 40s. I was the one with the medical "stuff." He was the caregiver -especially in the years when I went through multiple surgeries and a long period of disability. He's my rock. Then he comes back from seeing a local family doctor for a sore throat with an ominous finding. The doctor had felt a hard mass in the glands on the left side of his neck. She ordered a CT scan and referred him to a local ear, nose, and throat specialist.
A close friend of ours had had throat cancer in 2019, and my husband was presenting with the same symptoms. Hoping for the best and fearing the worst, I called Penn Medicine on a Friday, and got him an appointment with a head and neck cancer surgeon the following Wednesday. I figured if it was nothing, that was great. But if it was something, I wanted him to be in the best possible hands right from the start. I've learned a lot in 30 years of being a patient, a health coach, and a health-care advocate. I knew that the word cancer carried a lot of weight. So I called 1-800-PENN-MED and said "my husband has a tumor in this throat. We need to see a specialist ASAP." And they got us in. We didn't pull any strings - I just called and said "tumor and cancer." They did the rest.
I find that when I am in action - going to appointments, talking with nurses and doctors - I don't have pain. It's in the down-time, the long stretches of waiting that are a huge part of a cancer journey, that my body starts freaking out. I've been waking up early with pain in my psoas, two long muscles that connect the lower-rear ribs to the front of the pelvis. The psoas is known as the fear muscle. It contracts to collapse the body forward to protect the vital organs. It's like a clam shell pulling shut in the face of danger. It's a unique and unmistakable pain that starts on the front-lower abdomen on both sides, extending through the hips and butt and into the thighs. I've experienced it on and off as part of my pain syndrome, but never quite like this. And it's been very rare in 30 years for me to wake up with pain. Now it's there most mornings at 5 or 6am, reminding me that life has changed forever.
I've been all over the map, mentally and emotionally. Thankfully I have a lot of practice with curtailing my catastrophic thoughts. They come, and I can name them and say to myself, "that's not happening right now. Right now I am here, we are safe, and we are ok." Catastrophizing is a central piece of the fear/pain cycle. And when faced with a diagnosis like cancer, it is both inevitable and profoundly unhelpful. I'm not advocating toxic positivity. I'm not walking around singing "everything's going to be alright." I don't know that. I can't try to gaslight my mind and body around what is actually happening to us. But I can keep a hold on relative safety. Yes, there is a lot of fear. And right here, right now, in this moment, everything is actually ok. I can talk to my body and tell it that I've got this, that it doesn't need to contract into pain to protect me from this. I have other resources.
A word on resources. Most of my experience with medical care - my own and others' - has been in the realm of mystery syndromes. These are the ailments that don't have a clear diagnosis or treatment. They are medical orphans. There are few resources for patients to access, little or no support in conventional medicine. Often it's just the opposite - medical doctors compound the trauma of chronic illness with disbelief, dismissal, even irritation. Patients spend thousands or tens of thousands of dollars on out-of-pocket alternative treatments, whose efficacy is all but impossible to assess.
But cancer - wow - I understand now why it's been dubbed "the emperor of all maladies." Resources literally start falling out of the sky. At our first visit with the surgeon there were FIVE medical professionals in the small exam room - the surgeon, a nurse practitioner, a nurse, a med student, a resident. Two pathologists and another nurse showed up to do a needle biopsy. That day we also met our nurse navigator, who had us immediately scheduled for five more medical appointments. In addition to the surgeon, two oncologists, and their three nurse practitioners, my husband's care team includes a PCP, a social worker, a dietician, speech and swallowing therapists, an audiologist, a dentist/oral surgeon - all there within the multi-billion dollar Penn Abramson cancer center. And he hasn't even started treatment yet. Everyone is immediately available, kind, caring, attentive, and very, very serious. It's incredibly impressive. And, from my point of view, the contrast with the world of chronic mystery illness is stark, shocking. This is our medical system. Follow the money. I am deeply grateful, don't get me wrong. It's just really striking.
I almost didn't write this. My husband and I had a long talk about privacy. But we don't believe that illness should be shrouded in secrecy. Secrecy implies shame and there's nothing here to be ashamed of - not with cancer, not with chronic pain, and not with emotional distress. What we will learn, I will share: about cancer, about healing chronic pain in the midst of a crisis, about being real with emotions, and about relationship. I find immense comfort in having this expressive outlet. It gives me a way to wrap my arms around what is going on, to make sense of it, even if only piece-by-piece. I feel less alone when I envision you reading this. And, I think we should talk openly about these things. After all, we are all human, and this being human means we all face the inevitability of suffering, pain, illness, and ultimately death. May we do so with deep love, compassion, and grace. And may we do so together. 🙏
In case you missed them, you can read the previous posts in this series here. You can also explore my earlier blog posts on chronic pain and food and body image, going back to 2019. To be notified when a new post is published, please subscribe. You can learn more about me on my website. And you can reach me at firstname.lastname@example.org. I'm also on Facebook and Instagram. And please forward this to anyone else you know who is dealing with chronic symptoms of any kind.