About three weeks ago, I started to feel pain in the lower left quadrant of my mouth, tooth #18 to be exact. I’m one of those weird people with more alkaline than acidic salvia and at age 41, I’ve still never had a cavity. (knock on wood). Braces, yes, twice, and I struggle with tarter development, but no cavities. I can’t take any credit for this since my husband points out regularly that I’m pretty lazy about caring for my teeth, something that has to change now.
Once I’d had pain for a few days and it kept getting worse, I scheduled an appointment with my dentist. He knows all about my metastatic breast cancer diagnosis and the X-rays showed that I still don’t have a cavity. I love my dentist, he’s a straight shooter and doesn’t have much of a poker face. Even with the mask on, I saw his eyes widen. He quickly told me that he knew what was going on but had literally never seen it before in real life, just in his training. I was referred to a few oral surgeons and he offered to write me a prescription for the pain; at the same time, he chided me a little since the pain I was and am feeling apparently is so far beyond the pain of a cavity that I should’ve known something else was going on. Just one more weird experience related to my pain tolerance.
After some phone calls and a little begging, with a few tears, I had an appointment fairly quickly with THE oral surgeon with significant expertise in the affects of bisphosphonates on the jaw bone. He confirmed my suspicions, I have osteonecrosis of the jaw (ONJ) in a fairly typical presentation in a very typical spot. For anyone who is super curious, here is a general overview of the diagnosis and some of the related issues/treatment. One distinction I’ve learned is that I have medication induced ONJ, which behaves differently and is often differently treated from ONJ arising from a different source.
My understanding of the situation as it pertains to me is this:
- Zometa, the bisphosphonate that I get monthly via an infusion, affects the death and replacement of cells, both healthy bone and cancer, in my bones. The result of Zometa’s interference in this chemical equation means that the cancer growth is inhibited and there a “sealing” or “coating” affect as well, which means that the cancer is trapped inside the bones and is unable to spread to my organs, something I’d like to keep as long as possible. I do know that the scientific explanation is much more complicated, but this is the best way I can explain this process in words that I understand.
- The jaw bone is something like ten (10) times more sensitive than any other bones in the body to this medication. I’ve had TMJ in the past and I believe that some of the migraines I’ve gotten at various times in my life has been related to jaw pain. All of the bones and systems are super close to each other in the head and referred pain is definitely something I’ve struggled with.
- Because of this sensitivity and the years of getting the medication monthly, a part of my jaw bone has died. Breaking down the actual word helps: osteo = bone and necrosis = death. Eeek, there’s something very very strange about knowing a part of your body that is supposed to be alive is dead inside your body. Weird Weird Weird.
- Once that part of the bone died, the gum covering that part of the bone died as well and is gone — bleh, I probably swallowed it, yuck. No blood flow to the bone means that there is no blood flow to the gum. Therefore, a gum graft to cover the bone that is open to the inside of my mouth won’t work because whatever is placed on top of the dead bone will die too.
I keep learning such strange things about cancer, cancer medication, and the side effucks. For now, the treatment for me for my ONJ is antibiotics. Several to start with and then I’ll be on a low dose antibiotic for so long as I have a jaw bone. Thinking that’s a pretty necessary bone, so I’ll be taking it for a while. I’ll be following up with my fancy expert doctor regularly and we will likely have to adjust my Zometa treatment but it appears that I can stay on it, albeit perhaps at longer intervals, probably moving from monthly to quarterly.
Before I close this post, I wanted to give you all a glimpse into the experiences of living with this disease that I don’t always write about. When I sit down to write blog posts, it’s usually in the aftermath of an experience once I’ve had the chance to figure out what I’m going to do about it and when a plan is in place. That isn’t always reflective of my initial reaction and I wonder sometimes if I’m giving people a false sense of the experience or how I’m dealing with it.
When I saw the exposed bone inside my mouth a few weeks ago, I knew what it was right away. Yes, I realize I’m not a doctor and my self-diagnosis doesn’t mean much of anything; at the same time, I’m fairly well informed about the medication I’m on and the side effucks to look for. I didn’t do anything other than deal with the pain for a few days while I dealt with the emotions that came along with it.
More than anything else in the last three years, finding out that my jaw bone was likely dying felt like imminent death to me.
This may seem convoluted, but having to slow down or stop taking Zometa felt to me as though the mets would immediately leave my bones, take up residence in a necessary organ for life, and kill me quickly. Too many of my friends die each day for me not to think the worse possible outcome when cancer takes over a necessary organ. The intense pain I’ve been dealing with, which has been steadily increasing did not help, the fact that I’ve had to be on oxy to handle the pain when I’d been able to wean myself off, the fact that the jaw pain caused multiple intense migraines that lasted for several days, and the fact that I’ve struggled to sleep as a result of all of those things, well, it is not a recipe for thinking clearly/rationally.
Once I’d had some time to sit with these feelings, do my research and get to an expert, I’ve been able to be more logical, more practical, more of a realist and deal with the logistics of treatment and visits and medication and adjustments.
Living with a terminal disease that loves to throw curveballs at all times is not easy, it’s messy and it’s emotional and it’s tragic in so many ways. That is not to say that I don’t have hope, that I don’t use my energy to find better and best ways of treating the disease and the consequences of that treatment. It’s just that the wallowing, the dark places, and the anxiety is also part of living with a terminal disease. Sometimes it’s more wallowing than progress; other times, the opposite.
At the end of the day, there is nothing special about walking this road. I am human and dealing with pain and nausea and pain and vomiting and more pain wears on me. Thinking that I’ve reached a plateau and I can breathe a little only leaves me open to the disappointment of being thrust back into the hopelessness and helplessness of a new life threatening issue that must be addressed. Yes, I caught my ONJ early and we’re going to treat it, but ONJ is something that could kill me if not addressed. I’m not sure how many more potentially terminal diagnosis one body can handle.
For today, I know that we have the rough outlines of a plan, with more details to be fleshed out, I have medication that will help my pain, and I believe that I have the right team members in place. Tomorrow, it may be an entirely different situation. I’m learning to be more comfortable with this ever changing life with MBC and I can say that I will die of this, but not today.