Pain is weird. It’s terrible to experience, especially when the pain is extreme. I have had my fair share of pain, but none of it felt like the pain I experienced on October 14, 2024. It came on me slowly, growing steadily until I could ignore it no longer. I had gotten pretty good at ignoring pain by this point seeing as I’d just had my breasts melon balled out of me and replaced with expensive bags of silicone. Pain and I had an understanding, I’d ignore it and push my body until it becomes unbearable and I’m incapacitated by it. That was the round robin pain and I had played. On this day, the pain was coming from an unfamiliar place, I couldn’t really place what was happening to me because the pain felt like it was reverberating from my bones. All off my bones, arms, legs, hands, feet, fingers, toes, and my skull included. I felt like I was a tuning fork that got thwapted against a hard surface, but instead of a note of music come from the thwap, there was bone crushing pain reverberating out of my bones. I could feel my skeleton causing pain everywhere there was a bone.
I found my bed at some point and called for Chris as I twisted and writhed in my bed, possessed by pain in my body. Even as I writhed, I remember that I was clear minded. I was able to talk myself through what my body was experiencing. I could feel my body trying to collapse into a panic attack and in my head, I held her. I told my body:
“You are going to get through this.”
“This pain will end.”
“This pain does not define you, cancer does not define you”
“This is just an experience that you are having and it will be over soon enough.”
“You’re going to be okay.”
“I see you and I love you”
I was barely able to get it out but I told Chris to call my oncologist, it was the weekend but there is always an on-call oncologist to talk to. I remember going through the options, “press 4 to leave message for the on call oncologist” I spoke through gritted teeth and did my best to describe what was going on with coherent sentences in the message I left. I hung up and I was left to wait until I got the call back, left steeping in a pain that was otherworldly to me. I laid in my bed clenching my jaw and pinching my face, gently talking myself through it, hoping that the pain would subside soon. I was so tender to myself as the pain continued. I took more than the recommended ibuprofen and in about an hour the pain had subsided enough that I could talk again.
Chris sat with me and we watched Brooklyn 99, because laughter was imperative in that moment. We were both kind of shell shocked by the attack my body just sprung on me. While we were watching I got a call back from the on-call oncologist and she immediately knew what was going on with me “You had the Nuelasta shot, correct?” “Yes.” I said exhausted from the whole ordeal. She said “Well it sounds like you are having a severe reaction to the medication. Most patients experience some bone aching from the medication but some experience extreme bone pain from the medication. I think you are part of the extreme pain group. I’m going to write you a prescription for oxycodone.”
I realized that I was going to have to take that shot after every round of chemo and this kind of pain could happen again, at least 3 more times. That prospect really freaked me out. I took the medication as prescribed and it gave me real relief from my pain. I had to take it every 4 hours otherwise the pain would come back full force again. The bones inside my ears even hurt causing sound to hurt too. Living in a lively household was tricky. I had to start wearing earplugs so that my ears wouldn’t throb with pain at every sound.
A few days later I had an appointment with my oncologist and we went over what I experienced with the bone pain. After hearing me out she said “I think you had what I would call a severe reaction to the Nuelasta, the vast majority of people do not have that experience. I’m going to write you another prescription for oxycodone.” Of course my reaction was not typical, everything I experienced was not typical.
I took the medicine as prescribed and was able to make it through each day until I ran out. When I called to ask for a refill I was met with astonishment that I had finished my prescription so quickly. Then I was in fact astonished because I had actually made a 5 day supply last 7 days by stretching out the time between each dose to see if I was improving. I was improving, but the pain was still there impacting every bone in my body. I had to miss a few days because of their concern that I would become an addict. I assured them that I was not becoming an addict, I was just in extraordinary pain because of my bones. I guess asking for a refill of oxycodone is suspicious no matter what and I was referred to a pain specialist and she would have to be the one to determine whether or not I needed oxycodone to relieve my pain. This was all so frustrating to me because I still had to do life. I still had 4 kids – a teenager, a special needs daughter, and twin sons who were only in preschool. I was barely functioning without the pain and the pain just incapacitated me. I remember feeling really sad about it. Wanting to be listened to with compassion instead of suspicion. I was suffering and it felt like my medical team did not care as much as they should. It felt like, to them, I was a possible addict, not a cancer patient in excruciating pain. I really struggled with the idea that they were perceiving me as a person just wanting drugs for recreational purposes instead of someone who was going through the fight of their life and still had to live their life through the entire fight. Initially I was really unhappy with my oncologist for putting me through the ringer, but as time went on and as I consider it now, I can see that they were likely just doing what they were told to do when it comes to drugs like oxycodone. I wasn’t the exception to the rule I was just a part of the rule, even if the rules felt unfair in the moment.
I am happy to say that I kept my cool through the entire thing and only cried once while on the phone with a care provider, despite the many tears I cried off the phone, I didn’t let my fear of the pain control how I treated the people I was engaging with. They were not causing the pain and I needed to work with them to get my needs adequately met.
The pain specialist ended up being a god send and as soon as I told her the kind of pain I was experiencing she immediately gave me a prescription for an adequate amount of meds to get me through the expectations of my days. She was everything that I wished I had from my oncology team, compassionate, affirming, completely unconcerned that I’d become an addict, and eager to solve the problem. I didn’t have to experience the terrible bone pain again because I was able to get ahead of the pain with pain management prior to the severe side effects from the Nuelasta hitting. I did have some bone pain even with the meds, but it was not as terrible as the first time when it felt like my skeleton was trying to exit my body.