It’s been a joy ride in the past 6 weeks.
I’ve been told I have cancer. Told that they didn’t know my diagnosis. That it could be invasive – or not. And two weeks ago, that we caught it early: Although the tumor’s mucous extended beyond my appendix, it hadn’t invaded my peritoneal cavity. It was not a carcinoma. My treatment plan: watch and wait. At 6 months we’ll do a CT to make sure my lymph nodes are back to normal and to check my abdomen.
I’m not out of the woods. There’s still a risk that the mucous would invade my peritoneal cavity, but it’s a fairly low risk of recurrence: < 5%. I’m happy with an A-grade chance of being appendix cancer-free.
I have recurring pain that began post-surgery in my upper right quadrant. My doctor says it’s diverticulitis; however, the antibiotics and liquid diet have lessened but not eliminated the pain. I may have to go back on another round of either or both in the New Year (not an exciting prospect but doable). An ultrasound showed I have a slightly fatty liver and gallbladder, but otherwise unremarkable. So, for right now we’re going with diverticulitis. My gastric system has, in general, melted down. I’ve IBS and all the fun that comes along with it; my innards and outwards (yes, I made that word into a noun) hurt pretty much all the time.
This process has brought up a LOT of shit. Deep, ugly, emotional shit. Up to my knees without wellies in cow patty shit. Shit.
Shit. Shit. Shit.
For one, hearing that I had a second tumor in a different area of my body (and by age 34) brought up all sorts of body-distrust. Body dislike. Body fear? (As much as I hate to write it) I know I’m not the perfect host for my body: I have struggled with over- and under-feeding her. I under- and over-sleep. I could exercise a LOT more and regularly. I drink a fair amount of coffee (but no soda!) But I’m not terrible… right? Why betray me, body?
For the first few weeks as I settled into cancer diagnosis uncertainty, I wrestled with distrusting this body. The body I’ve been gifted with, blessed with. That walks me around campus. That stand on sure feet while giving lectures. That plays ball with Bryce and picks up my niecelets. That swims – up to an hour at a time even when I’ve ignored the pool for weeks. This amazing body.
It didn’t help that the surgeon couldn’t answer my questions, that the scientific literature on appendiceal cancers is in it’s toddlerhood, and that I received status updates in fits and starts. Also, pain. It’s amazing what pain can do to your brain. I was distracted, angry, sad, tired, and worried ALL THE TIME. Simultaneously intense feelings with pain as a constant reminder.
It also didn’t help that I knew that the best case tumor scenario would still end with a “watch and wait” diagnosis. I did watch and wait for 5 years after my thyroid cancer. For the first three years I’d visit the ultrasound technician and then my endocrinologist at six month intervals. For a week before and a week after I’d worry. And then after receiving the cancer-free news, I’d cry for a week. Years four and five I got to visit once annually. Still, I’d repeat the pre- and post-worry and tears.
They don’t tell you how cancer will effect you when it’s Stage 1. Or when it’s rare.
They’ll tell you to be thankful. The doctors. Your friends and family. Social norms that glorify those folks with more advanced cancers who are “battling”. The true fighters. We early stage folks are lucky.
And yes, we damn well are.
From what I understand about this latest tumor, it would be unlikely to be caught if not for another gastric upset leading to a CT (as it did in this scenario). Symptomless and left to grow, it would have ruptured. It would have spilled mucin into my peritoneal cavity. By my mid-40s, it could have been devastating. So, yes, I am damn lucky, and I am thankful. Deeply, deeply thankful.
And yet, there’s something about being 34 and knowing that I’ve had two tumors. That there are enough years left in my life (G-d willing) and I’ve enough risk factors, that I’m more likely to develop a third. There’s something abut considering genetic testing to determine my risk a tailored plan for proactive surveillance. There’s something about knowing that for this next year, or two or three, when I get these belly twinges I’ll wonder if some new tumor is present or mucin returned.
We don’t talk about these experiences in cancer survivorship research.
We don’t talk about how it effects survivors. We don’t talk about how it effects their relationships. Their family and the people they’re partnered with who may not understand why we don’t “feel lucky” right now. Why we may not fully “feel lucky” for a few years. Who may not know that we still have nightmares and worries. And that we’re “battling” to forget it, to move on, and to feel psychologically and emotionally okay (while planning for our next follow-up visit with our oncologist).
I’ve had family members die from cancer. I’ve had family members survive cancer. When I share our cancer family tree with oncologists they remark that we’ve had a “significant” amount of cancer in our family. [Read: Holy hell, that’s a lot of cancer.] My being worried isn’t a crazy state.
However, it’s not a way to live. It’s not sustainable. It’s not emotionally or psychologically healthy.
I’ve done cancer before. I’ve done cancer survivorship for nine years. I can do this.
I’ve a lot more thoughts: about my process with the healthcare system (especially as a cancer survivorship researcher), about next steps in my life and health, about how I feel about surviving and surveillance. But, for now, this post is enough.
Thank you for all of have been supportive over these past six weeks. You all are essential to my life above and beyond cancer. I love and appreciate you. And I’m looking forward to reemerging from this 6-week-cave to enjoy life and times with you.