Looking back over my recent blog posts, I have noticed that I’ve been blogging a lot more about my medical updates that anything else, so I suppose one could surmise what has been on my mind lately. I’ve realized (again) that not all pain is the same and there are just some body parts that are harder to ignore or deal with. Plus, part of what I’ve had to deal with is the fact that I had to take oxycodone to manage my pain leading up to and after surgery. Adjusting to not taking that pain medication now that I don’t have to, has added a different component to my recovery.
First, for background, I’ve written before about bisphosphonate induced osteonecrosis of the jaw (BIONJ). You can access the first part here and the second part here. As I’ve posted about my experiences, I’ve been contacted by quite a few people who shared how scared they were of developing osteonecrosis of the jaw, a known side effect/effuck of bisphosphonates like Zometa that many of us who are taking long term for Stage IV Metastatic Breast Cancer (MBC) or other diagnoses. I’ve recently seen some data that about 10% of us taking a bisphosphonate long term are developing BIONJ. I wish it wasn’t a growing subset.
When I talk to people who are at the beginning or perhaps are just concerned about the possibility of BIONJ, I try to temper my own irritation at the progression of symptoms and the increased pain, but the fact of the matter is that BIONJ just isn’t a fun thing to deal with. Like so many things I’ve experienced with MBC, there is a trade off — I am trading the health of my mandibles and teeth for stronger bones and, as my medical oncologist believes, a coating of the bones to keep the bone mets inside.
As I’ve shared, I’ve been increasingly miserable and in pain due to the area of dead bone in my mouth. At first, it wasn’t very painful, but as my molar (tooth #18) became more mobile and then I had my dentist extract it since the roots were impacting nerves and causing crazy pain, the hole became a big issue. Even more so were the shards of dead bone that my body was trying to expel. Every few weeks, another sharp piece was protruding from the hole, impacting my tongue and eating and swallowing, etc. My dentist and dental specialist at my cancer center helped by shaving down the sharp pieces, but that intervention was only effective short term.
Eventually, frankly, I’d had it. Too much pain, too many opioids, and too much affect on my quality of life.
Originally, my surgery was supposed to be the 18th of June, a Friday, but it was unexpectedly moved to the 21st, the following Monday due to a request from my doctor. I do have to say something about what happens when you have set your expectations on a certain date/time and then have to wait longer. Those extra days can seem interminable and simply untenable. We joked that if he’d rescheduled my surgery to play golf, that we’d have something to say, but I understand it wasn’t anything so banal.
As often happens to me with the various support staff, I was told a variety of different things about whether I had to take a COVID test because I’ve been vaccinated and when to show up. Serious disconnects in communication that I tried my best to just roll with, but it was seriously difficult to try to figure out what to do. Inevitably, the rule changes that I’d been told would start on the 21st didn’t take effect and my surgery was postponed for an hour so that I could get a rapid COVID test. Since I was still negative, we went forward.
As I understand it, the surgery I had isn’t very common for the lower mandible/jawbone. The lower mandible is denser/harder than the upper and apparently this difference can mean that surgeons won’t operate. I am lucky/blessed to have one of the doctors who pioneered not only the connection between bisphosphonates and ONJ, but also one of the most experienced in addressing the ramifications of the diagnosis. While his support staff are not pleasant or easy to deal with, the doctor is a definite expert.
Once I was under anesthesia and in the operating room, the doctors first cleaned out or debrieded the dead bone from the area on my lower mandible. I’d had a small area open up in my upper mandible and so they did the same thing there. For my lower mandible, the hole where my tooth had been was then seeded with some fat they removed from my cheek. That fat, when it grows, will fill in the hole. The hole was then stitched closed. I have stitches in my mouth (which will dissolve eventually) that are holding everything together while it heals.
One thing that made the surgery itself go more smoothly was that a mom from one of my son’s elementary school classes was the anesthesiologist. She told all of the staff that we were friends and I got the best service from all of the medical professionals taking care of me. That same doctor made sure to adjust the anesthesia so that I wasn’t nauseous afterwards, which was huge! She additionally kept my husband updated in real time as to how the surgery was going and shared how some of the operation became tricky when the areas they were working on were close to nerves and everything is so close together in the mouth.
The surgery was an outpatient procedure so as soon as I was awake and alert in recovery, my husband was allowed to sit with me and help me get dressed to head home. As usual, even once the anesthesia wears off, I tend to sleep for a bit, usually about two (2) hours. My husband is used to this and is typically the last caretaker to be called back to the recovery area.
For the first week after surgery, I could only have liquids through my super swollen and bruised mouth. I literally looked like I’d been in a fistfight and caught a fist or two in my face. After that first week, I was able to move to soft food for three (3) weeks and I’m still in that second phase. Since I deal with hyperglycemia from Piqray, one of my targeted meds, I struggled a little with not consuming too much sugar and had at least one episode where my glucose spiked super high. It’s really hard to avoid sugar in smoothies!!
One other thing that has complicated my recovery is that I was on oxycodone prior to surgery to manage my pain and then Percocet after surgery. Ever since I was diagnosed with MBC and have had pain that has become chronic in a variety of places in my body, I’ve experimented with various remedies. One of the remedies that I’ve worked hard to avoid is opioids, not just because of the risk of addiction but also because I don’t feel like myself when taking them. Having to take opioids to manage my pain related to BIONJ meant that I’ve been taking oxy at a higher dose than I’d like for months. Coming off of oxy and then Percocet meant that I experienced some adjustments that had some withdrawal like symptoms. While I certainly don’t know what others experience, I can say that I’m much more aware of what withdrawal feels like and empathetic for those who suffer through it. Being mostly on the other side of getting the opioids out of my system, I’m feeling much clearer and I have a lot more energy.
I’m completely out of the woods yet, but much closer to where I want to be. I’ve still a fair amount of swelling inside my mouth and I still can’t open my jaws fully. But, as I’ve told so many people, each day is better than the last and I’m looking forward to getting back to “work” and my immersive role as a patient advocate, especially now that I feel more like myself.